Help from patients who are experts at living with kidney cancer

Because KCSN is the largest and most active community of kidney cancer patients, carers and family members in the UK, we hold a massive amount of patient generated information about living with kidney cancer that hundreds of patients and carers have shared with us over many years.

When a patient or carer joins the KCSN and logs on to our knowledge forum or our confidential Facebook pages, they have unlimited access to this archive of real world knowledge – the virtual equivalent of a kidney cancer patient reference library! These patient generated resources are so valuable because we know that patients are experts at living with kidney cancer.

Like most cancer patients, our members get a great deal of satisfaction from helping and supporting each other; that’s why we exchange information and share experiences, and that’s why we like to pass on helpful tips and insights about all aspects of our care and treatment.

  • For example, as patients we know what really works when patients are trying to manage difficult side effects from cancer drugs or other types of treatment
  • We understand instinctively the emotional turmoil and fear that follows a diagnosis of cancer and we recognise the knock-on effect kidney cancer has on the lives of our families and friends
  • It’s a relief to find other patients who understand how we feel about the financial fall out and work issues that a diagnosis of cancer brings. We can all share what it feels like to wake up in the early hours of the night fearful about what the future holds for us and our loved ones.

 

As patients we learn about kidney cancer the hard way; we read various books and leaflets, we can research the disease on the Internet, we watch videos, and at hospital appointments we talk to clinicians and nurses. There is a lot of information about kidney cancer written for patients but there is not a lot of information that is actually written by patients, and we want to change that.

Our KCSN Patient to Patient Help Sheets are written by patients and carers; they do not constitute medical advice and should not be seen as such. They are not edited or approved by clinicians, nurses or health care professionals. They are quite simply a means of sharing our patient knowledge, our personal insights and experiences of living with kidney cancer. We do this in the hope it will make the lives of those who walk the same path as us a little easier.

Please do get in touch with us if you are a patient or a carer, and you have an interest in a particular topic associated with kidney cancer that you would like to write about and share your knowledge and experience with others.

Our KCSN Patient to Patient Help Sheets can be found in the table below. Please click on the + on the left hand side of each title to access the corresponding help sheet.

Sarah’s Help Sheet: NEPHRECTOMY

This is a simple guide, written by a patient, to help you understand what to expect when you have just received a kidney cancer diagnosis and the treatment option recommended is a nephrectomy.

Being told that you are about to have this type of surgery and planning your recovery can be a daunting prospect. This guide has been put together by speaking to other kidney cancer patients, who themselves have had experience of this type of surgery.

What is a nephrectomy?

Nephrectomy is the surgical procedure for removing the kidney, or part of the kidney and, for kidney cancer patients, most importantly the removal of the tumour also.

The removal of the whole kidney is called a “Radical Nephrectomy” – this involves removing the entire kidney and sometimes the adrenal gland that sits at the top of the kidney, together with the fatty tissue surrounding the kidney.

The removal of part of the kidney is called a “Partial Nephrectomy” – this is when only the tumour/ diseased portion of the kidney is removed leaving part of a functioning kidney.

In some cases surgery can be performed by laparoscopic surgery (keyhole) and this should be discussed with your Urologist when you discuss the types of surgery available.

What to expect prior to your surgery

You will be given a date for your surgery and, prior to that date, you will attend a pre-assessment appointment where you will normally have your bloods, urine sample, height, weight and MRSA swabs taken and usually an ECG is carried out.

You will speak to an anaesthetist who will take some background information from you and explain to you fully what will be happening on the day of the surgery, during your surgery and what to expect afterwards.

This is a good opportunity to ask any questions that you may have; leading up to this appointment can be an extremely anxious time and it is easy to forget what to ask at the appointment so it is a good idea to write any questions down and take notes with you to go through with the Doctor.

The anaesthetist will go through your medical history thoroughly with you and you will be asked about any current medications and other Illnesses and if you are a smoker.   If you happen to be taking supplements like vitamins, fish oils etc. it is advisable to inform the anaesthetist because some supplements may affect the anaesthetic so you may be advised to stop them prior to your surgery and not wear nail varnish.

You will also be advised to avoid alcohol and to stop smoking. You will be given a special bottle of surgical wash to be used prior to your procedure; this will be explained to you by the nurse who gives it to you.

During this appointment the anaesthetist should also discuss with you the risks of the surgery, healing times and what type of pain relief is offered. You might be offered either a patient-controlled analgesia (PCA) – which is a painkiller device that you can control and it releases painkiller into the bloodstream via a drip. Alternatively you will be offered an epidural – which is a painkiller and local anaesthetic given directly into the spinal nerve system and this involves inserting a very fine tube into your back at the time of surgery through which these drugs are given.

What to take with you into hospital

When packing your bag for hospital the following items have been suggested by other patients:

  • Two changes of loose clothing/pyjamas, front opening is advisable – no tight waistbands
  • Light dressing gown
  • Non-slip slippers
  • Book or some magazines
  • Wet Wipes (great for freshening up when you are not able to easily move)
  • Natural, unperfumed, soap and some disposable flannels
  • Small box of soft tissues
  • Earplugs (hospital wards can be noisy places)
  • Music/headphones/radio/iPad/mobile phone (set to silent or vibrate and check with the ward manager that they allow mobile phone use – which can be annoying to other patients trying to rest)
  • Your own favourite bed pillow in a coloured pillowslip to make sure it stays with you! (you will need to rest and get as much sleep as possible- hospital pillows can be uncomfortable).
  • Small clock rather than a treasured or special watch
  • Special photograph of family or friends for comfort.
  • Soft toy perhaps (to keep you company)
  • Straws for sipping small amounts of fluid when you have trouble sitting up straight.
  • Sanitary towels for ladies still menstruating (this type of procedure may cause an unexpected cycle)
  • Small change and £1 coins for telephone, internet access or newspapers (often a trolley comes around with newspapers for you to buy)
  • Vaseline or Lip balm for dry lips
  • Dry Shampoo (Washing hair can be very difficult at first, many use dry shampoo which is great for freshening your hair up)
  • Phone/Tablet/IPad (it’s advisable to check that there is a lockable cabinet next to your bed on the ward if taking in valuables)
  • Mints or fruit sweets or chewing gum (your mouth may feel very dry)
  • Notepad and pen for notes or to start a diary
  • Bottle of Ribena or similar fruit juice – you will be expected to drink plenty of water and this may make it more palatable
  • Small soft cushion is useful to hold gently against the wound(s) when you cough or need to move and for the drive home

 

What to expect on admission

Some people are asked to go into hospital 24 hours prior to their surgery and others on the actual day. Usually the anaesthetist visits you on the ward and in some cases the surgeon does too. You will have your abdomen marked where the incision will be and be talked through what is happening again in detail. This is your opportunity to ask any questions.

This can be an anxious time so it is advisable to have somebody with you.

You are likely to be fitted and put into surgical stockings. These help prevent Deep Vein Thrombosis (DVT) and some patients are fitted with a cannula on the ward prior to going to theatre.

When it is your allotted time you will be taken down to theatre (just because you may have stayed in overnight or been asked to arrive at 7am this does not mean that you will be first to go to theatre, it really does depend on how many procedures the surgeons have booked in on that day and theatre times etc so try not to worry too much if you are not first to go to theatre)

What to expect after the procedure

Everybody deals with this type of surgery differently and a lot depends on what type of surgery you have had but most people will say that you will inevitably feel uncomfortable afterwards. With the pain relief and help from the ward staff you will be made as comfortable as possible. Some people will go straight on to a ward and others may go into a high dependency unit (HDU) or intensive care unit (ICU), all depending upon what type of procedure you have had.

You are watched very closely immediately after the surgery. Usually the nurses come around throughout the night to take your temperature and blood pressure, this is reassuring and also an opportunity to speak to them if you are feeling any discomfort.

You will be “nil by mouth” immediately following surgery and will have a drip providing you with fluids until you are able to eat and drink normally. You may also have a catheter in place, which will be taken out after a couple of days usually. Sometimes, when a catheter is removed, you will have a bladder test, called the TWAT test. In this case you are required to drink a certain amount of water, go to the toilet and then a simple ultrasound of your bladder may be carried out (usually carried out at your bedside) to ensure that the bladder is working correctly.

You will also have a drain, which is used to collect blood, fluids etc. from the surgery wound site. This will usually be removed before you are discharged.

You will find that once you start passing wind this is when your bowels are returning to normal. Using your bowels, at first, can be a problem for some patients. Don’t strain to go to the toilet! Don’t suffer in silence; ask for something to help move things along if you need it.

Usually the Surgeon will visit you the day after your surgery to see how you are and discuss how the surgery went with you.

You will be expected to sit out of bed in the chair next to your bed as soon as possible, this is to aid healing and prevent blood clots. You will be expected to walk as soon as possible and to start walking around the ward within two days, or even sooner.

Going home after surgery

You will not usually be discharged until all drips and drains have been removed and you are eating, drinking and going to the toilet normally. You will also have a blood test and the results checked before discharge. A District Nurse may be put into place to visit you at home to check on and change any dressings, you will also be given any pain relief and other medications that you are currently taking.

Returning home after the surgery can be a daunting prospect. It is advisable to use a cushion/pillow for the journey home in the car as the seat belt can cause discomfort. Ensure that you have adequate pain relief at home.

Recovery is different for everybody. You have to take each day as it comes and, over time, you will notice that things do become easier. It can be frustrating if you feel that you are not recovering quickly enough but you must pace yourself, no heavy lifting for at least six weeks, gentle exercise, especially walking, helps.

Try to wear loose clothing, as it is easier to dress and undress.

Recovery time after abdominal surgery varies but generally you should feel improvements after 6-12 weeks. During the first 6 weeks though the following is advisable:

  • You should not drive until you are able to do an emergency stop and twist to look behind you (it is also advisable to make your insurance company aware of your situation)
  • Don’t pick up children, or lift any heavy objects or do any heavy housework or hoovering
  • Depending on type of work, avoid returning to any occupation that involves heavy lifting or too much exertion or constant sitting – a phased return to work is preferable – talk to your boss or HR Manager
  • Avoid getting the wound wet when bathing or showering (cling film is very good for wrapping around the waist to keep the wound dry).

Please help other patients:

Please keep us updated with useful information that will help other cancer patients. You can email us with your tips so we can regularly add to this resource.

Thanks to all the KCSN members for their input, and especially to Sarah for her patience and willingness to collate this information to help and support others.

Written May 2016

Download a pdf of this help sheet here: Nephrectomy guide

Rose’s Help Sheet: QUESTIONS TO ASK YOUR SURGEON/CLINICIAN PRIOR TO SURGERY

Here is a list of questions that you might like to ask you surgeon, clinician or hospital team before you have your surgery:

  1. Can you confirm yet whether I have kidney cancer, a cyst, or a benign tumour on my kidney?
  2. Is the cancer (tumour) in one kidney or both kidneys? Is it the left or the right kidney?
  3. Do you know yet what type of kidney cancer I may have? For example, clear cell or papillary etc.
  4. What exactly do my scans show? Has the tumour spread into the fatty tissue or nearby lymph nodes (this is called locally advanced kidney cancer) or is it contained within the kidney capsule?
  5. Can you tell me yet whether the cancer has spread outside of my kidney to any other parts of my body i.e. my lungs, liver, bones or lymph glands (this would be called advanced or metastatic kidney cancer) or is it contained within the kidney capsule?
  6. What is the size of the tumour on my kidney? Will you need to remove all my kidney (a radical nephrectomy) or just part of it (nephron sparing or partial nephrectomy)?
  7. Do you intend to remove my adrenal gland? If so, why is this?
  8. Will you remove any lymph glands/nodes to check if cancer is present? If not, why not?
  9. Will I need a biopsy taken or any additional tests before surgery? If so, what kind of tests and when/where will they take place? How long will I wait for the results of any new tests?
  10. Will I need surgery to remove my kidney and the tumour (this operation is called a nephrectomy)? If so:
    1. Can this be done by keyhole surgery (this is called laparoscopic surgery)?
    2. When will I have my pre-operation check?
    3. What date will the surgery take place?
    4. Will the hospital screen me for MRSA prior to the operation?
    5. Is the operation a complicated one?
    6. Who will carry out the operation? Will it be you or member of your team?
    7. How long will I be in the operating theatre?
    8. What are the potential complications of this type of surgery?
    9. What happens immediately after the operation? What after-effects will I suffer?
    10. How long will I have to stay in hospital?
    11. How long will I be off work or unable to work?
    12. How long will it be before I can get back to normal?
  11. If you do not intend to remove the tumour, please explain to me why not and what treatment will I have instead of surgery?
  12. How much experience do you/your team have of treating kidney cancer? Do I need to get a second opinion from a kidney cancer specialist at a cancer centre?
  13. Are there any other alternatives to surgery at this stage? Is surgery the only/best option? And could you explain any other options to me please?
  14. What is the most effective way of treating kidney cancer if it has spread to other parts of the body?
  15. How long after my operation will it take before I receive a copy the pathology report telling me what type of kidney cancer has been found? And the stage and grade of the cancer, and other details
  16. Will I need more treatment after my surgery? What will it be, when will it start, how long will it last, and what outcome can I expect?
  17. If I need drug treatment will it have side effects, and if so, is there any way of relieving them? Will I automatically get an appointment with an oncologist?
  18. Is there anything you or I can do to prevent the spread of kidney cancer to other parts of my body? Can I have more surgery if the cancer spreads to a new place?
  19. Will radiotherapy or chemotherapy be effective for my particular type of kidney cancer?
  20. Are there any clinical trials involving new approaches to the management of kidney cancer that might help me? Who can talk to me about kidney cancer clinical trials?
  21. Who do I contact if I have any queries about my treatment or if I get any new symptoms? Can I have a name and telephone number of the Urology Clinical Nurse Specialist please (or CNS for short)?
  22. What is the recommended follow-up/surveillance routine following my kidney cancer surgery? When will I have another CT scan? How often will I have CT scans and/or medical check-ups?
  23. How soon after my surgery will I come back to see you for my follow up appointment to get the results of the tumour pathology and to help me with any problems I may have?
  24. Do you have any leaflets or information about kidney cancer I can take away with me to read?
  25. Is there a local kidney cancer support group I can join?

We always recommend patients, carers and families read the most up-to-date patient information and support booklet about kidney cancer from Macmillan Cancer Support:

Understanding Kidney Cancer, Macmillan Cancer Support

Please help other patients:

Please keep us updated with useful information that will help other cancer patients. You can email us with your tips so we can regularly add to this resource.

Thanks to all the KCSN members for their input, and especially to Rose for her patience and willingness to collate this information to help and support others.

Written May 2016

Download a pdf of this help sheet here: Questions to ask your doctor prior to surgery

Martin’s Help Sheet: CHANGING TKI DOSAGE STRENGTH AND/OR CYCLE FREQUENCY

Many patients with secondary kidney cancer are put on drugs called tyrosine kinase inhibitors (TKIs), the main ones being sunitinib (Sutent), pazopanib (Votrient), or axitinib (Inlyta). Whilst these drugs are generally very effective, most patients suffer some side effects. Most drugs will have a dedicated website describing these, for example, Possible Sutent Side Effects.

For some, the side effects can have a severe effect on quality of life. It is, therefore, important to keep a balance between the clinical effectiveness of the drug, and the patient’s quality of life. If the patient is having trouble tolerating the drug, often changes can be made that allow the patient to keep taking the drug and have a decent quality of life:

Dosage strength (formally called dose titration)

These drugs come in a variety of strengths, and if you find the dose prescribed causes you severe side effects, speak your oncologist about reducing the dose. Often patients are started on the highest dose, but find they can’t tolerate it.

One oncologist commented to a patient “each body processes what it needs then the rest of it wanders around looking for trouble”. For this reason, a lower dosage does not necessary mean reduced effectiveness. Some patients have had good results on a lower dose.

Patients respond to drugs differently because each patient is different, and each has a maximum dosage they can tolerate. For those taking pazopanib and axitinib, dose reduction may be the only option available for limiting side effects and continuing on the treatment, as these drugs are taken continuously.

For more information, please see the Votrient Dosage Guide.

Patients have said:

“Saw my oncologist on Wednesday and he has reduced my dose of XXXXX to 600mg due to very high BP and extreme fatigue. Second day of reduced dose and think I feel a little less fatigued……. Actually been shopping this morning”

“Definitely try reduced dose. I ended up in hospital after 2 weeks on full whack of XXXXX. Lower dose worked really well and although it was still hard going I managed to get through 11 cycles with an almost complete response!”

Although not a means of managing side effects, there has been a recent study that found that increasing doses above the normal recommended if the TKI has shown progression can extend overall survival and could be considered as a further treatment option. However, this will likely result in increased side effects, which at normal dose can be harsh for some, so should perhaps only be considered when other treatments have failed.

Sunitinib – Change of cycle profile

The recommended regime for taking sunitinib is to take one tablet a day for 4 weeks, then have a two week break, giving a 6-week cycle. Most patients are given a starting dosage of 50mg, which is the highest strength.

However, many patients have changed to a 2-week on/1 week off/2-week on/1 week off profile, still comprising a 6-week cycle. The total dosage over the 6 weeks is unchanged. A recent clinical trial found that the efficacy of the drug is as good on this regime, but patients found it to be a more suitable regime to cope with, because of lower toxicity.

Patient comments suggest this may be down to:

  • Not getting any side effects in the first week. With the traditional 4/2 regime this still means a 3-week block of side effects, which in some instances, such a sore mouth, can continue to get worse over that period. On a 2/1 regime, the patient only has to endure the side effects for one week before effectively getting a 2-week break. Both physically and psychologically, patients have found this regime kinder.
  • There is also anecdotal evidence from patients that when they have taken a longer break of say 3 or 4 weeks, they found the side effects more severe than they had been prior to the break upon resumption. It may therefore be that constantly taking a 2-week break will result in routinely experiencing more severe side effects than taking a 1-week break.

Please help other patients:

Please keep us updated with useful information that will help other cancer patients. You can email us with your tips so we can regularly add to this resource.

Thanks to all the KCSN members for their input, and especially to Martin for his patience and willingness to collate this information to help and support others.

Written April 2016. Reviewed October 2016

Download a pdf of this help sheet here: A guide to changing TKI dose and cycle frequency

Neil Feldman (1953 – 2015) was an active advocate and stage IV American kidney cancer patient who was very interested in what he could do to complement his prescribed kidney cancer treatment. He undertook a great deal of reading and talked at great length to clinicians and many other patients during the research he carried out for this booklet about diet and supplements. His approach was based on evaluating all dietary considerations in light of normal and abnormal cell metabolism. Some of it is based on information found in the 19 books and videos that he lists at the start of the guide, and which he suggests all kidney cancer patients would benefit from reading, while the rest is based on credible peer-reviewed articles and papers found in PubMed and similar online sources. These are Neil’s personal thoughts and ideas, and as he points out in his introduction:

The content and references contained in this guide are intended solely for the information and education of the reader. It is not to be used for treatment purposes; it is to inspire thought and/or drive discussions between patient and healthcare provider.

The information presented is not intended to diagnose health problems or replace professional medical care; nor should it be considered a substitute for seeing a physician.

A Guide to a ‘Proper’ Diet with ‘Appropriate’ Supplements

Sharon’s Help Sheet: EMPLOYMENT RIGHTS

A brief overview

Employment Law is very complicated!

However, as an employee you have certain employment rights which have to be adhered to by the employer.

If you started your employment after 5 April 2012 you would need to have TWO years’ continuous employment in order to claim Unfair Dismissal. If you started with your employer prior to 5 April 2012 then you would only have to have ONE year of continuous employment in order to claim Unfair Dismissal.

 

Disability discrimination

A cancer diagnosis would be considered to be a disability under the Equality Act 2010. This means that an employer cannot discriminate against you BECAUSE of your cancer. This includes dismissing you or subjecting to any other detrimental treatment. Disability is a “protected characteristic” as defined by the Equality Act; this means that you have the right to claim Unfair Dismissal, regardless of your length of service. This does not, however, mean that your employer cannot terminate your employment, but they are required to follow a fair procedure to do so.

If you are diagnosed with a serious illness such as Cancer most employers are very supportive and helpful…… but, unfortunately, not all are. An employer has to abide by the law but that does not mean that they have to give you anything more than your basic rights, although most will do.

 

Sickness absence

All employers should have a “Sickness/Absence Policy” in place, which should be freely available to all employees. If you need to take time off because of ill-health they should be able to provide you with a copy of that policy immediately if it is not widely available. ASK FOR IT!

The amount of sickness absence that an employer will provide at full pay differs greatly and depends entirely on the sickness policy that they have in place. All employees (who earn at least the Lower Earnings Limit) are entitled to Statutory Sick Pay for a period of up to 28 weeks, even if they are not entitled to any “paid sick leave”. Periods of less than 28 weeks may be “linked”, depending upon how long there is between the absences. More information is available on the HMRC website.

Keep in touch with your employer regularly. It is very important that an employer understands your diagnosis and that you keep them in touch with likely timescales of absences. For example if you are admitted to hospital for an operation let your employer know that you are likely to be off for XX amount of weeks etc. If you are feeling unwell and are unable to attend work then you must also follow the sickness policy and inform your employer as directed by that policy!

 

Termination of employment

If an employer decides that they wish to terminate your employment, even if you do not have two years’ service you have the right to claim unfair dismissal if the dismissal is directly because of your disability. Your employer must therefore carry out a fair procedure, obtain medical information and consider any reasonable adjustments they could make to your job and/or the workplace before making this decision. They must also give you the relevant notice (this may be paid at full pay, at SSP or unpaid, depending on the circumstances), and pay accrued holiday pay owed. Remember: If you are absent through ill-health you still “accrue” your holiday entitlement.

Again, the disciplinary/dismissal procedure should be set down in a formal policy which you should be able to freely access from your employer. If you are in that situation ask for a copy of their policy to be provided to you.

Please help other patients:

Please keep us updated with useful information that will help other cancer patients. You can email us with your tips so we can regularly add to this resource.

Thanks to all the KCSN members for their input, and especially to Sharon for her patience and willingness to collate this information to help and support others.

Written May 2016

Download a pdf version of this help sheet here: Employment rights guide

Martin’s help sheet: Treatment/TKI side effects on the mouth 

Many patients with secondary kidney cancer are initially put on drugs called tyrosine kinase inhibitors (TKI’s) such as sunitinib (Sutent) or pazopanib (Votrient). Whilst these drugs are generally very effective, unfortunately many patients suffer some side effects to a greater or lesser degree, one of which is the impact on the mouth. Have a look here at the Sutent manufacturer’s website.

The most common side effects reported by members of the KCSN are:

  • Dry Mouth
  • Sore mouth/ Increased Sensitivity
  • Mouth Ulcers
  • Taste changes
  • Difficulty Swallowing

These reactions are caused by mucositis, which is an inflammatory reaction of any or all of the mucous linings of the upper gastrointestinal tract from mouth to stomach (including mouth, lips, throat) and surrounding soft tissues. Inflammation in the mouth is called stomatitis and inflammation of oesophagus is called oesophagitis. See the Macmillan website for further information about side effects affecting the mouth.

Unfortunately, there is no drug available that can stop these symptoms, so it’s all about providing relief from the discomfort, until hopefully symptoms decrease. This Help sheet gives a list of remedies that have been found effective by members of the Network. The extent to which patients get the symptoms can vary greatly, so there is no guarantee that what worked for one patient will work for you, but hopefully by capturing all the remedies below, new members can find something that works for them.

Another important fact to bear in mind when starting on TKI’s is that many members have reported that the side effects do reduce over time, probably as a result of the body becoming more tolerant, so if you are finding it hard going to begin with, hang in there as things may improve.

 

Dry Mouth

The following have been found beneficial for those suffering from a dry mouth:

Glandosane: is a saliva replacement spray and is available on prescription

BioXtra Gel, available online

Glycerin Throat Pastilles are also good for the dry mouth problems.

Biotene Gel: available from Boots.

 

Sore Mouth

Often patients suffer from a sore mouth, which generally entails heightened sensitivity to such things as hot drinks, spicy or acidic food and toothpaste. The following are suggestions from group members to help with a sore mouth:

Avoid: sounds obvious, but avoid anything that will cause pain such as spicy or acidic food such as citric juices (tomatoes, oranges, lemon, etc.)and sauces and dressings containing vinegar. Often tolerance to heat is also reduced, so it’s not even possible to enjoy at hot cup of tea and coffee! Adding an ice cube may low the temperature to a level that be can be tolerated. Drinks and liquid medication containing alcohol (i.e. some cough medicine) if not essential, are best avoided – how much do you want that beer? Even drinking carbonated drinks can be unpleasant, although drinking through a straw may help.

The same applies to hot food, and unfortunately the time between it being cool enough to eat and becoming cold and unappetising can be all too short. To keep up intake (which is essential) either eat cold food or eat more often. Also some harder foods like biscuits can be quite “scratchy” in the mouth and hence uncomfortable to eat. Some members found Farley’s Rusks great as they melt in the mouth and taste good (apparently!) Also watch out for too much fruit because of the acidity of some fruits.

Difflam Oral Rinse: works by numbing the mouth, and is available on prescription. However, for some it can be painful itself, but some have diluted it with some water and some found it to be effective.

Gelclair is a concentrated oral rinse gel, made by Cambridge Laboratories and distributed in UK by Alliance Pharmaceuticals. It’s a gel in a sachet that you dilute in water and gargle. Some members found it to be beneficial to use before eating to coat the mouth before eating. Some found the taste unpleasant. It may be possible to get on prescription.

Manuka Honey: Some people find Manuka honey helps, take a spoonful – can also be rubbed on mouth sores directly. There are different grades available 5+,10+, 15+ in increasing expense, please let us know which works best .

Corsodyl Alcohol Free Mouthwash: rinse the mouth with the mouthwash as often as possible. Can be diluted. Available on prescription.

Ice: Some found sucking ice lollies or ice cubes gave some relief and pleasure (in the case of lollies!) This also helps with hydration.

Bicarbonate of Soda: Some used this diluted in water as a mouth wash.

Gengigel Gingival Gel: (try saying that!). Some found this gel worked well. Its available from any good health food store, Boots chemist or online

MuGard Oral Mucoadhesive: an Oral Wound Rinse that is rinsed around the mouth and reduces sensitivity. Available online

Salt Water Mouthwashes: cheap, but some found them very effective. Dissolve some sea salt in warm water – swill round and spit out

Frozen Pineapple Pieces: are said to be very good, soothing and healthy

Dissolvable Aspirin Mouthwashes – swill round, gargle in your throat is sore then spit out

Magic Mouthwash: is the name of a mixture prepared by a pharmacist using doctor’s specifications (there can be additions depending on the patient’s particular problems, like thrush for example). Pharmacists can make it for you if your doc will write the prescription. The basic mixture is 1/3 Maalox (so it sticks to the mouth lining), 1/3 Lidocaine (local anesthetic), and 1/3 Benedryl (eases irritation). Swish for 30 seconds to one minute and spit, or if the throat is also irritated, the product can be swallowed

 

Mouth Ulcers

Unfortunately it is also quite common to get mouth ulcers, particularly in the early stages of treatment, which can be a nuisance. Firstly check your toothpaste, as some have found SLS to be a leading cause of mouth ulcers and chronic inflammation of the cheek and tongue. So if yours has SLS, it may be time to change. See the section on toothpastes below.

Here’s some suggestions from members for helping with mouth ulcers:

Lysine: found in health food shops really helped. It may take a while to take effect.

Liquorice:   is supposed to help with mouth ulcers. If you don’t like traditional liquorice, there is the flavoured Australian variety. Beware it can be addictive, and too much can have you running to the loo, as it is also a remedy for constipation- eat in moderation.

Bonjela. Traditional treatment, available from chemists. Numbs the area,

Orajel: was also recommended. It also numbs the area.

Aloclair plus: Found by some members to give fast relief & healing for mouth ulcers

Nystatin: a prescription preparation for oral thrush, but members report good relief from mouth ulcers.

 

Taste Changes

Unfortunately TKI’s can cause changes to the taste buds, and for some things lose their taste, or have a metallic taste. For many this is a phase that tends to pass, but it can be tough forcing yourself to eat when there is no pleasure in it and everything tastes the same.

There are no specific remedies for this, but one thing to be aware of – using aluminium saucepans can heighten the metallic taste, so best to avoid if you can.

 

Swallowing

It is quite common to experience some difficulty in swallowing when on TKI’s, and for some this can be linked to incidences of reflux. Many of remedies listed above in the “Sore Mouth” section will assist with this. but if it becomes a real issue and is stopping you eating sufficient, speak to your oncologist about trying a:

Proton Pump Inhibitor: a tablet such as Omeprazole. This once a day tablet has completely fixed swallowing issues for some.

 

Toothbrushes

Just one piece of advice here – whether you use electric or manual, get a super soft toothbrush, or better still get a baby’s toothbrush as it’s much kinder.

Toothpaste

When the mouth is sore, using traditional toothpaste can be very painful- the reason being they contain Sodium Lauryl Sulfate (SLS), which is the foaming agent. SLS is used as a degreaser in garage floor cleaners, car wash soaps and many industrial cleaners. (enough said!). It strips the skin of its natural protective layers. So if you are having a burning tongue sensation or ulcerations that are irritated after brushing your teeth, check your toothpaste, and if it contains SLS, it’s time to change. Below is list of alternative toothpastes that members found worked for them:

Childrens Toothpaste: readily available and cheap – check ingredients although because it may still contain SLS. They will however, contain less fluoride, so are not as good for long term use.

Sarakan: A natural toothpaste, made from extracts from the Toothbrush Tree – yes there is such a thing!  Available online and at good health food shops

Aloe Vera Toothpaste: available in health food shops

Kingfisher Fluoride Free Toothpaste: available online and at good health food shops

Biotene Toothpaste: Primarily for those with a dry mouth, but was found by some to be tolerable. It is available at Boots, but is quite expensive. However some have got it on prescription.

 

Mouthwash

The general advice is to avoid mouthwashes containing alcohol. Here are a couple of recommended ones :

Biotene Mouthwash: quite pricey, but can be got on prescription. Available at Boots.

Sarakan Mouthwash: Natural mouthwash available online at a reasonable price and at good health food shops.

 

Please help other patients:

Please keep us updated with useful information that will help other cancer patients. You can email us with your tips so we can regularly add to this resource.

Thanks to all the KCSN members for their input, and especially to Martin for his patience and willingness to collate this information to help and support others.

Written March 2016

Download a pdf of this help sheet here: Treatment side effects on the mouth

Martin’s Help Sheet: PATIENT SURVEY OF TIME OF TAKING TKIs AND DIARRHOEA

Background

The most common treatment for patients with secondary kidney cancer are drugs called Tyrosine Kinase Inhibitors (TKIs), which are a type of biological therapy called protein kinase inhibitors. Protein kinase is a type of chemical messenger (an enzyme) that plays a part in the growth of cancer cells. TKIs block the protein kinase to stop the cancer growing, thereby stopping the growth of a tumour or shrinking it. The main TKIs are sunitinib (Sutent), pazopanib (Votrient) or axitinib (Inlyta).

Whilst these drugs are often very effective, most patients suffer side effects which can have a severe effect on quality of life. This survey is intended to assist in managing one of the main side effects, diarrhoea, by informing the choice of when to take the drug to minimise diarrhoea.

Survey

A total of 38 patients or carers responded to the survey, a relatively small sample but hopefully representative. Of those responses, 13 were taking sunitinib (34%), 18 taking pazopanib (47%) and 7 taking axitinib (18%)

When the drug is taken

Looking at the time of day/relationship to food when taking the TKIs: Only 5% take the drug with food (2 persons), but both only had none to mild diarrhoea. 82% of patients took the drug on a presumed empty stomach (patients who responded either: before food or before bed or first thing). Of those, 57% suffered none to mild diarrhoea. Of the 82%, the most common approaches were: take before food (32%), take before bed (26%). In summary, the majority of patients favoured taking the drug on an empty stomach.

Sunitinib and pazopanib are taken once a day, whereas axitinib is taken twice a day, which may mean that a different approach is taken for each tablet.

Relationship between when the drug is taken and diarrhoea suffered

Looking at the relationship between when the TKI is taken and the amount of diarrhoea suffered, considering high levels of diarrhoea, the highest percentage of moderate to severe diarrhoea suffered is those who took it first thing (75%). The lowest percentage of moderate to severe diarrhoea was suffered by those taking the TKI with food (although only 2 patients). The next lowest percentage of moderate to severe diarrhoea was suffered by those taking the TKI after food (generally presumed to be 2 hours after food).

Of those patients who suffered no or mild diarrhoea, the 2 patients who took it with food were the highest percentage (100%), both of these were on axitinib, but of those who took it at other times, 80% of those patients also only suffered no to mild diarrhoea, so there is not considered to be a significant advantage in taking axitinib with food.

Of all the patients with little to mild diarrhoea, the next highest percentage was those who took it after food (77%), followed by those who took it before food (67%). In summary, with any of the TKIs, the majority of patients who suffered none or only mild diarrhoea took the TKI on an empty stomach (2 hours after food to just before food, or at the beginning or end of the day).

Comparison of different TKIs taken and diarrhoea suffered

Analysing the degree of diarrhoea suffered for each TKI, for those patients on sunitinib, 10 of 13 (77% ) have none to mild diarrhoea, with only one suffering severe diarrhoea. Of the 10 patients with little diarrhoea, 5 took it before bed (suggesting that this may be the most beneficial approach), and 3 first thing in morning, 2 after food.

For patients on pazopanib 8 of 18 (44%) have none to mild diarrhoea, with 5 suffering severe diarrhoea. Taking the tablet before food was the most popular, favoured by 9 patients (50%), and of those 6 had none to mild diarrhoea (66%). Second most popular was before bed with 5 patients, but of those 4 suffered moderate to severe diarrhoea, so this is perhaps not recommended. It would appear the most beneficial approach may be to take the tablet before food. There was a much higher incidence of moderate to severe diarrhoea for patients on pazopanib, compared to sunitinib and axitinib, suggesting that diarrhoea can be more problematical for patients on pazopanib.

For patients on axitinib, 6 of 7 (85%) have none to mild diarrhoea, with one suffering moderate to severe diarrhoea. This would appear to suggest that diarrhoea is not such a problematic side effect for those on axitinib, although the sample size is small. No particular time of day was strongly favoured, with a spread between the various times, although “after food” had the most responses, at 3 patients. This would appear to suggest that axitinib is less sensitive to when the drug is taken, which is perhaps fortuitous, since it has to be taken twice daily, allowing less flexibility.

The table below gives the correlation between time the TKI is taken and level of diarrhoea.

 

Diarrhoea Suffered (no of patients/%)
Tablet taken No of patients % None % mild % moderate % severe %
Before food 12 32% 2 17% 6 50% 2 17% 4 33%
with food 2 5% 1 50% 1 50% 0 0% 0 0%
after food 9 24% 3 33% 4 44% 2 22% 0 0%
before bed 10 26% 4 40% 1 10% 4 40% 1 10%
first thing 4 11% 2 50% 0 0% 2 50% 1 25%

 

Table 1: Analysis of when TKI is taken and diarrhoea suffered.

 

Please help other patients:

Please keep us updated with useful information that will help other cancer patients. You can email us with your tips so we can regularly add to this resource.

Thanks to all the KCSN members for their input, and especially to Martin for his patience and willingness to collate this information to help and support others.

Written December 2016

Download a pdf of this help sheet here: Patient survey of time of taking TKIs and diarrhoea

Julia’s Help Sheet: TRAVEL INSURANCE FOR KIDNEY CANCER PATIENTS

We are repeatedly asked about where to find travel insurance at a reasonable cost following a diagnosis of kidney cancer.

This ‘Patient to Patient Help Sheet’ has been put together to pull all the recommendations regarding reasonable cover for travel insurance into one place. It is important you have details of your medical condition to hand before speaking with insurance companies or brokers as you will need to fully disclose as much information as possible about any pre-existing or existing medical conditions ie. diabetes or a heart condition.

Please note the KCSN does not recommend any specific insurance company or broker. This help sheet has been compiled using information provided by other cancer patients or their families. The companies listed below are not guaranteed to provide you with insurance cover, they are companies that have been recommended by other patients based on their own individual experience.

Travel Insurance Companies

Cancer patients have recommended the following companies provide cover for a pre-existing or existing medical condition based on their own individual experience:

Insurance With

www.insurancewith.com

Tel: 020 3829 3875

 

MIA Travel Insurance

www.miatravelinsurance.co.uk

Tel: 0800 999 3333

 

All Clear Travel Insurance

www.allcleartravel.co.uk

Tel: 01708 339295

 

Blue Bear Travel Insurance

www.bluebeartravelinsurance.co.uk

Tel: 0344 482 3404

 

Go Panda Travel Insurance

www.gopandainsurance.co.uk

Tel: 01702 427 274

 

Staysure

www.staysure.co.uk

Tel: 0800 033 4902

 

Good To Go Insurance

www.goodtogoinsurance.com

Tel: 0330 024 9949

 

J.D. Travel Insurance

www.jdtravelinsurance.co.uk

Tel: 0844 2474749

 

The European Health Insurance Card (EHIC)

If you are travelling to a country within the European Economic Area (EEA) or Switzerland, you should carry a European Health Insurance Card (EHIC).

The EHIC is not an alternative to travel insurance. It will not cover any private medical healthcare or costs, such as mountain rescue in ski resorts, being flown back to the UK, or lost or stolen property. It is also not valid on cruises.

It is therefore important to have both an EHIC and a valid private travel insurance policy in place before you travel. Some insurers now insist you hold an EHIC, and many will waive the excess if you have one.

Further information about the EHIC can be found here.

 

Helpful Online Resources

The KCSN knowledge forum has a section where patients can add their own experiences to help others: KCSN Knowledge Forum

MoneySupermarket has a really useful online tool to compare prices and policies for those with pre-existing medical conditions. It also has some useful information regarding travel insurance for those with a diagnosis of cancer. You can access the page here. 

Cancer Research UK has a very helpful page all about travel insurance and the options for people who have or have had cancer. The page includes information such as why it is important to have insurance, the European Health Insurance Care (EHIC) and what you need to tell insurance companies. You can read it here. 

Useful Tips

When considering taking out travel insurance remember to consider the following:

  • Include reimbursement/cancellation costs should you need to cancel your trip due to ill health
  • Potential medical expenses (including GP, drugs and hospital) should you require treatment whilst abroad, including repatriation (being flown home in an emergency). Many airlines will not repatriate patients taken ill whilst on holiday on normal scheduled flights, it is quite likely a medical flight, including accompanying doctors nurses and equipment will be needed to get you home.
  • Your carer & any travel companions should also be covered in case they need to return with you if you are taken ill either before or during your trip.

Please help other patients

Please keep us updated with useful information that will help other cancer patients trying to get reasonable travel insurance. You can email us with your tips so we can regularly add to this resource.

Thanks to all the KCSN members for their input, and especially to Julia for her patience and willingness to collate this information to help and support others.

Written: February 2017

Download a pdf of this help sheet here: Travel insurance for kidney cancer patients

Martin’s Help Sheet: SORE HANDS AND FEET ON TKIs

Introduction

Many patients with secondary kidney cancer are initially put on drugs called Tyrosine Kinase Inhibitors (TKIs) such as sunitinib (Sutent) or pazobanib (Votrient). Whilst these drugs are generally very effective, unfortunately most patients suffer some side effects to a greater or lesser degree, and one of the more common ones is hand- foot syndrome or palmer-plantar Erythrodysesthesia (PPE). Information about other common side effects of TKIs and how to deal with them can be found on the Sutent website.

What Is Hand-Foot Syndrome?

Hand-foot syndrome (HFS) is a side effect of TKIs. It primarily affects the palms of the hands and soles of the feet, where skin cells normally have a high rate of regeneration.

hand-foot1   hand-foot2

What Causes It?

According to Oncolink, no one knows for sure what causes HFS, but there are a few theories. The most widely accepted theory is that the small blood vessels in the palms and/or soles break due to use, pressure, or increased temperature, causing an inflammatory reaction and possibly releasing the drug into the area.

Symptoms of Hand-Foot Syndrome

Common symptoms of hand-foot syndrome include: Tingling or numbness, burning, redness, swelling and tenderness. Whilst uncomfortable, these may be tolerable, but in severe cases the skin becomes dry and flaky and may blister and peel or develop sores or ulcers, which can have a major impact on quality of life, affecting the ability to use hands to do tasks and can in extreme cases make it very painful for people to walk on the affected areas.

It is also worth being aware that prolonged use of TKIs can cause fingerprint loss, although rare. The peeling and blistering of the skin over time may cause the fingerprints to be erased. This gained much media attention in 2009 when a Singapore man was detained at U.S. Customs for not having fingerprints. His condition was related to taking Xeloda (capecitabine) for three years. 

Measures to Control or Prevent HFSred face

There are some measures you can take to lessen the risk of HFS and control it if you get it, such as: 

  1. Avoid overheating skin

Avoid overheating skin with hot water. You will find your skin particularly sensitive to it whilst on TKIs. If you have a hot shower your skin will probably come out in red blotches due to the heightened sensitivity of the skin. It normally disappears once the skin cools, but it is a sign that your skin doesn’t like to heat. Try turning the heat down a little if you can tolerate it.

 

Also try and wear footwear that doesn’t cause your feet to become hot. 

  1. Avoid direct friction on the skin

Anything that involves applying friction to the hands or feet is likely to result in stripping skin off the affected areas. It is definitely recommended to wear gloves for gardening or DIY and fitness activities which involve lifting or gripping hard. The first time you strip the fingers or thumbs you’ll wish you wore gloves! Prevention is definitely better than cure in this respect.

 It’s best not walk in bare feet as this is likely to result in damage to the skin. Natural fibre socks or soft slippers are the best way to protect your feet. Ideally wear comfortable shoes with cushioned soles. One of our patients said:   

“…try getting a pair of Havaianas flip flops to wear indoors – the best thing is they cushion and they are the only things that helped me walk at times. No other flip flops worked for me” 

Another patient said:

“Bought myself a few pairs of sketchers go walk with the yellow GOGA foam insoles, feel good especially with the sore feet side effects, being on sutent (4th cycle nearly done) like walking on air, and easy on the feet.” 

  1. Consider not wearing rings

To limit friction, it may be preferable to avoid wearing rings on your fingers, although this a personal choice and perhaps something to be aware of and stop wearing rings if it looks like they are causing skin problems. 

  1. Stay well hydrated

Dehydration is also a cause of dry skin, so it is important to keep well hydrated by drinking lots of water.

  1. High dose vitamin B6

Oncologists often recommend short-term use of 50 to 150 mg of vitamin B6 (commonly known as Pyridoxine), which is considerably higher than the daily recommendation. However, a 2015 meta-analysis (a review of studies published to date) failed to find that vitamin B6 actually helped with hand-foot syndrome, but it may be worth considering and discussing with your oncologist.

  1. Treating the skin

This is perhaps the most important preventative measure you can take. The most common treatment is to apply an emollient cream. These are specialised moisturisers that soothe dry, cracked, and irritated skin thereby helping to maintain the skin’s softness, smoothness and elasticity. These should be applied several times a day. Here’s what our patients recommended: 

  • Udder cream

“My husband was advised to use Moo Cream which in effect is udder cream as above. He doesn’t use anything else. He was given initial tube by someone at Addenbrookes but now buys it from Amazon. Must contain Urea though, that’s very important”

“Battles Udder Cream, available from amazon or if you check on google it will tell you if there is a stockist near you. Available in farm supply shops and horsey shops.”

“Do the udder balm massage eat least three times a day, and last thing at night then get some plain 100% cotton socks and let them get impregnated with the cream and even sleep in them. the trick is to start early before you have any problems and keep applying.”

“We got it from the local horse tack and fodder shop. Two types bright pink or white. The pink stained but was a better consistency. The white was stiffer but thicker.”

  • Diprobase

“I get Diprobase from my oncologist with my other drugs. You need to apply it several times a day. It tends to be greasy for a while afterwards which was a problem for me as I used crutches, then I read their website and it said can be used as a soap. So now that’s what I do. Every time I wash my hands I’m creaming up, and by constantly applying it, it works a treat.” 

“I get Diprobase prescribed by my GP – works better than anything for my sunitinib feet!”

“I got some Diprobase yesterday and started to use it. It is good and works fairly quickly to relieve the pain when standing on your feet. It is paraffin based and is quite thick and clear but leaves a coating on the skin.. They gave me four tubes and one of them will be with me all the time.” 

  • Aveeno cream

“Try aveeno cream from the chemist it’s the only thing that works for me.” 

  • Heels Genius Soap and Glory Cream

“Got it from boots in a pink tube. I use it every day and i sleep in socks find my feet go really dry at night and get sore otherwise.” 

  • Flexitol

“I use Flexitol. It has high urea content. Good for diabetics too.” 

  • Henna

“Henna is also good for some people. I also massage a blend of essential oils into them twice a day.” 

“When my feet did get sore henna worked a treat.”

“I found that henna helped.” 

  1. Repairing damaged areas

The following were recommended for treating damaged areas: 

  • Sudocrem

“When the skin on my thumbs strips off, I apply Sudocrem and plasters and it does repair the damage within a couple of days.” 

“I didn’t want to put the udder cream on sore areas so put sudocrem on instead! Guess what? Tonight the sores are nearly gone and the pain is minuscule! Not saying it will work on everyone, but maybe its worth a try! Just going to pirouette into bed now!” 

  • Scholl Cracked Heel Repair Cream

“Until this cycle I’ve never blistered, but this cycle either I’m turning into a lizard or my skin has gone exceptionally dry. I can literally peel the skin off !! Anyhow I’ve discovered Scholl Cracked Heel Repair Cream which works wonders.” 

  • Salt water

“I found the sea water helped on holiday even though i wore sea shoes so since we’ve been back I’ve been bathing my feet in sea salt flakes then creaming too been lots better.”

 

Please let us know if you have any other remedies or preparations which you have found useful and which we can add to this sheet to help others. Email us here.

Thanks to all the KCSN members for their tips and information and especially to Martin Price for his patience and willingness to collate this information to help and support others.

 

Please help other patients:

Please keep us updated with useful information that will help other cancer patients. You can email us with your tips so we can regularly add to this resource.

Thanks to all the KCSN members for their input, and especially to Martin for his patience and willingness to collate this information to help and support others.

Written February 2017

Download a pdf of this help sheet here: Sore hands and feet on TKIs

Background

In the past decade, the treatment of kidney cancer has become more successful and patients are now living with advanced disease for on average around 2 years, but in some cases much longer. With the introduction of targeted therapies (see below), overall survival has been extended considerably, and the advent of modern immunotherapy drugs has offered a lifeline to those patients who had come to the end of the line with respect to treatment options. The ultimate aim of researchers is to personalise each patient’s drug treatment plan to improve overall survival, and with tolerable side effects to ensure a good quality of life.

BiomarkerDespite their efforts, researchers have been unable to identify a reliable biomarker for kidney cancer treatments. This is mostly due to the large number of different types of cancer cell (heterogeneity) in kidney cancer tumours. A biomarker is a naturally occurring substance, gene, or clinical characteristic (e.g. blood pressure) by which a particular biological process or disease can be identified, and is often measured and evaluated to examine a biological response to treatment.

Identification of a biomarker would help to personalise treatments: Only patients who are likely to benefit from the drug will be treated, thereby potentially increasing average benefits from treatment across large groups of patients. For example, about a third of patients derive very little benefit from treatment with sunitinib (Sutent); knowing who these patients are in advance would spare them an ineffective treatment and the side effects of sunitinib. These patients could then be treated straight away with another drug, which could potentially offer them significant additional benefits without wasting time on an ineffective drug.

What is personalised medicine?

Personalised medicine is medical care in which the treatment is tailored for an Personalised medicineindividual patient based on their predicted response. Optimal treatments are selected based upon a person’s genetic makeup and how their tumour grows. Using these data, doctors can find treatments that may be more effective and have fewer side effects than standard treatment options. By performing genetic tests on the cancer cells and on normal cells, doctors can tailor treatment to each individual patient’s needs.

Personalised medicine can help doctors to:

  • Determine the chances that a person will develop cancer and develop screening programmes to lower the risk
  • Match patients with treatments that are more likely to be effective and cause fewer side effects
  • Predict the risk of the cancer coming back (recurrence).

 

Currently, a one-size-fits-all approach is used for the treatment of kidney cancer: Most patients with kidney cancer received the same treatment, and some treatments worked better for some patients than for others. For some types of cancer, developments in the field of genetics has led researchers to identify genetic differences in people and their tumours, which explains the different responses to treatment. This is currently not the case for kidney cancer; however, researchers are currently looking for biomarkers in kidney cancer tumours that will identify which patients might respond to particular drugs.

There are three main types of personalised therapy:

 

More information about personalised therapy can be found on the Cancer.net website.

What is targeted therapy?

targeted-cancer-therapyTargeted therapy is a treatment that targets and blocks specific proteins, called receptors, on cancer cells that enable the cancer cells to grow and survive. Researchers are finding new targets each year and creating and testing new drugs for these targets. Treatment with a targeted therapy depends on finding out whether the tumour has the specific receptor by testing a sample of the tumour.

Targeted therapy is used for the treatment of breast cancer, colorectal cancer, gastrointestinal stromal tumour (GIST), lung cancer, melanoma, multiple myeloma, some types of leukaemia and lymphoma, and kidney cancer. Examples of targeted therapy that is used for treating kidney cancer include:

 

More information about targeted therapy can be found on the National Institute for Health (NIH) National Cancer Institute website.

What is pharmacogenomics?Pharmacogenomics

Pharmacogenomics is the study of how genes affect the way a person processes and responds to drugs. This relatively new field combines pharmacology (the science of drugs) and genomics (the study of genes and their functions) to develop effective, safe medicines and doses that can be tailored to a person’s genetic makeup.

The way a person processes and responds to a particular drug can influence how effective and safe the drug is for that person. For example, some people may process a drug more quickly than others. These people would require a higher dose of the drug for it to be effective. However, someone else’s body may not process a drug as quickly. The drug would then stay in the bloodstream for a longer time and may cause more severe side effects.

An example of the use of pharmacogenomics for cancer treatments is as follows: Some people with colorectal cancer have a specific altered (mutated) gene, which makes it harder for them to break down the drug irinotecan (Camptosar). This can lead to serious side effects. Patients with the mutated gene are prescribed a lower dose of irinotecan to avoid the serious side effects.

More information about pharmacogenomics can be found on the Cancer.net website.

What is gene therapy?

GenesGene therapy is an experimental technique that uses genes to treat or prevent disease. Gene therapy will eventually enable doctors to insert genes into the cells of patients to give the cells a new function, or to restore a missing or inappropriate function as a result of cancer or a gene mutation. This will reduce the need for drugs or surgery.

Researchers are testing several approaches to gene therapy, including:

  • Replacing a mutated gene that causes disease with a healthy copy of the gene
  • Inactivating, or ‘knocking out’ a mutated gene that is not functioning properly
  • Introducing a new gene into the body to help fight a disease.

 

Although gene therapy is a promising treatment option for a number of diseases (including inherited disorders, some types of cancer, and certain viral infections), the technique remains risky and is still under study to make sure that it will be safe and effective. Gene therapy is currently only being tested for the treatment of diseases that have no other cures.

More information about gene therapy can be found on the Cancer Research UK website.

The future of personalised medicine

Not all types of cancer have personalised treatment options, and in a lot of cases, personalised medicine is still experimental and only available through a clinical trial. Genetic testing of patients and tumour samples can be costly and time-consuming, and is not available within the NHS. Finally, personalised treatments, such as targeted therapies for kidney cancer, can be expensive for the NHS.

However, personalised medicine is evolving and doctors still don’t know all the genetic changes that occur in a cancer cell, and how some of the new cancer treatments work. Research is yet to discover a reliable biomarker for the treatment of kidney cancer, and understand why patients stop responding to promising treatment with targeted therapies. The advent of immunotherapy for kidney cancer is a breakthrough with respect to how doctors can harness the power of the immune system to fight cancer. However, as with targeted therapies, response to immunotherapies is also personal, with about one third of patients experiencing overall survival of 4+ years. With an improved choice of effective treatments, the aim is that doctors will eventually be able to personalise treatment plans according to specific disease history and contraindications, thereby enabling the best possible quality of life for individual patients. 

 

Please help other patients:

Please keep us updated with useful information that will help other cancer patients. You can email us with your tips so we can regularly add to this resource. Please email us.

Thanks to all the KCSN members for their input, and especially to Sharon for her patience and willingness to collate this information to help and support others.

Written March 2017

Download a pdf of this help sheet here: Personalised cancer medicine

Julia’s Help Sheet: WAITING TIMES FOR CANCER

A question we repeatedly get asked is: ‘How long will I have to wait for……’

When a cancer diagnosis is suspected, we know how distressing it can be; the wait to be referred; the wait until you get an appointment with a clinician; the wait to actually be seen; the wait for tests/scans appointments to come through; the wait for surgery. The waiting seems endless. Days can seem like weeks in the period from being told you may have cancer to getting a scan/test to confirm a diagnosis. This can be a really distressing period for the patient and their family, as we all know the sooner a cancer is detected and treated, the better chance the patient has for a successful outcome

For patients in England

The NHS has set maximum waiting time standards for access to healthcare. In England those for cancer fall under two headings:

Individual patient rights (as per the NHS Constitution)

Waiting time standards to which the Department of Health holds individual providers and commissioners to account

Individual patient rights (as per the NHS Constitution)

The current maximum waiting times for patients in England for cancer care and their rights are set out in the NHS Constitution and the Handbook to the NHS Constitution.

Patients with suspected cancer have the right to:

  • Access certain services commissioned by NHS bodies within maximum waiting times, or for the NHS to take all reasonable steps to offer you a range of suitable alternative providers if this is not possible
  • Be seen by a cancer specialist within a maximum of two weeks from an urgent GP referral for suspected cancer.

 

Government pledges on waiting times include:

  • A maximum one-month (31-day) wait from the date a decision to treat (DTT) is made to the first definitive treatment for all cancers
  • A maximum 31-day wait for subsequent treatment where the treatment is surgery
  • A maximum 31-day wait for subsequent treatment where the treatment is a course of radiotherapy
  • A maximum 31-day wait for subsequent treatment where the treatment is an anti-cancer drug regimen
  • A maximum two-month (62-day) wait from urgent referral for suspected cancer to the first definitive treatment for all cancers
  • A maximum 62-day wait from referral from an NHS cancer screening service to the first definitive treatment for cancer
  • A maximum 62-day wait from a consultant’s decision to upgrade a patient’s priority to the first definitive treatment for all cancers
  • A maximum two-week wait (2WW) to see a specialist for all patients referred with suspected cancer
  • A maximum 2WW to see a specialist for all patients referred for investigation of breast symptoms, even if cancer is not initially suspected.

 

Source: Delivering Cancer Waiting Times

 

Latest national statistics on waiting times in England

The latest national statistics on waiting times for suspected and diagnosed cancer patients accessing NHS services, produced by NHS England can be accessed here.

Concerned about your own waiting time?

If you wish to discuss your own waiting time experience, you should contact your local Clinical Commissioning Group (CCG), which you can find via the NHS Choices Website.

How long should I wait for scan results?

Waiting for scan results can take time and will depend on the type of scan you are having and why you are having it.

Currently there are no limits on how long you have to wait for scan results

The Government has set a target to have the results of diagnostic tests ready within 28 days of referral by 2020.

TIP: remember to ask your clinician how long before the results are back. If the results are not back within the time indicated or after a couple of weeks ring the clinician’s secretary for further advice.

 

For patients in Scotland

For patients in Scotland, there are currently two cancer waiting times standards, which are detailed below. From 2011 the cancer waiting time targets, as decided by the Scottish Government, are as follows:

62-day target from receipt of referral to treatment for all cancers. This applied to each of the following groups:

  • Any patients urgently referred with a suspicion of cancer by their primary care clinician (for example GP) or dentist
  • Any screened-positive patients who are referred through a national cancer screening programme (breast, colorectal or cervical)
  • Any direct referral to hospital where the signs and symptoms are consistent with the cancer diagnosed as per the Scottish Referral Guidelines (for example self-referral to A&E)

 

31-day target from decision to treat until first treatment for all cancers, no matter how patients were referred. For breast cancer, this replaced the previous 31-day diagnosis to treatment target.

Latest statistics on waiting times in Scotland

The latest statistics on cancer waiting times in NHS Scotland can be viewed here.

Concerned about your own waiting time?

Contact your local Health Board

 

For patients in Wales

For patients in Wales, there are currently two cancer waiting times standards, which are detailed below.

The Welsh Government aim is to ensure that all those patients with suspected cancer undertake diagnostic tests as quickly as possible to minimise any anxiety that they may be feeling.

There are two pathways that a patient may follow:

Patients suspected of having cancer and urgently referred by their GP, should wait no more than 62 days for their treatment to commence

Patients who have been newly diagnosed as having cancer, not through a GP referral should start their treatment within 31 days of a decision to treat.

Concerned about your own waiting time?

NHS Wales advises you should contact either the Waiting times department in the hospital you have been referred to or the Health Board.

Latest statistics on waiting times in Wales

The latest statistics on cancer waiting times in NHS Wales can be viewed here.

 

For patients in Northern Ireland

Ministerial Target for Cancer Waiting Times

The 2016/17 Ministerial target has three components associated with cancer waiting times:

  • The Ministerial Target on waiting times for treatment following an urgent referral for suspect cancer states that, ‘from April 2016, 95% of patients urgently referred with a suspect cancer should begin their treatment within 62 days’
  • The Ministerial Target on waiting times for cancer treatment following a decision to treat states that, ‘from April 2016, at least 98% of patients diagnosed with cancer should receive their first definitive treatment within 31 days of a decision to treat’
  • The Ministerial Target on waiting times for a first assessment with a breast cancer specialist states that, ‘from April 2016, all urgent breast cancer referrals should be seen within 14 days’

 

Latest statistics on waiting times in Northern Ireland

The latest statistics on cancer waiting times in Northern Ireland can be viewed here. 

Concerned about your own waiting time?

Contact your local Health and Social Care Trust or contact the Patient and Client Council.

 

Further reading

For additional reading CRUK have published an excellent report providing an overview of cancer waiting times including definitions for each of the devolved nations. You can access the overview here.

 

Please help other patients:

Please keep us updated with useful information that will help other cancer patients. You can email us with your tips so we can regularly add to this resource. Please email us.

Thanks to all the KCSN members for their input, and especially to Julia for her patience and willingness to collate this information to help and support others.

Written April 2017

Download a pdf of this help sheet here: Waiting Times for Cancer

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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