When people are first diagnosed with CLL, they are usually told that nothing is going to be done about it. Many want to shout “What! I’ve got LEUKAEMIA and you’re not going to treat it!”
Even when they understand that “watch and wait” is usually the best approach, it can leave people feeling very helpless. We don’t want to just “watch and wait”. We want to actually DO something – something to help us “fight” this disease. If people were given a list of things that we CAN do, it could direct our “fighting energies” into something much more positive than just waiting (and worrying).
So, I’ve been making a list. It’s based on my own experiences of living with CLL, reading about CLL, and is seasoned by my nursing career. (I was diagnosed with CLL about 8 years ago, retired from nursing 7 years ago, and am expecting to start treatment fairly soon.) Many of the points have already been mentioned on this site, but I think it’s helpful to gather them together in a user-friendly way, especially for newcomers and those in early stages…
The list became very long, then grew even longer, as other people added extra things. So I’ve split it into three parts. This first part is about things that improve our general health. This is very important, because when we do need treatments, our general health will make a BIG difference to how we get on. (Heart, lung, liver, kidney and gastric problems can make some CLL treatments VERY difficult if not impossible).
Second part is more about RELATIONSHIPS AND EMOTIONAL WELL-BEING healthunlocked.com/cllsuppo...
Third part is more medical points. healthunlocked.com/cllsuppo...
* KEEP PHYSICALLY ACTIVE. Even if we lead sedentary lifestyles, we can schedule in times to be more active. I try to sit at the computer for no longer than an hour at a time – I get up and walk around, even if it’s just in the house or up and down the stairs.
* Taking up new sports or going to the gym isn’t for everyone, but it might be helpful for some, to give some structure and discipline to their activity. Very strenuous exercise is not necessary (and could be counter-productive). I just try and walk round the block twice a day - takes about 20 minutes each time.
I realise that some people have mobility problems, so for them, maybe “chair exercises” would be helpful…. Changing position, stretching, moving whatever bits of us we can move.
* GET UP TO DATE ON VACCINATIONS – as SOON AS POSSIBLE. As our disease “progresses”, our bodies don’t respond so well to vaccinations.
We must avoid all live vaccines (eg the present shingles vacc), but there are others that ARE recommended. The following link is very useful - scroll down to the second chart and look at the line for "weakened immune system". cdc.gov/vaccines/schedules/...
It could be helpful to print out the second chart in that link, to show to your doctor. In summary, this is what it says.
1) Annual vaccs for flu
2) Two pneumonia vaccs - first PCV 13 (also known as Prevnar 13), then at least 8 weeks later - PPSV23 (also called Pneumovax 23). The PCV13 (Prevnar) has only recently been put on the recommended list for CLL folk, but evidence shows that it is MUCH more effective than the PPSV23 (Pneumovax). Some doctors are still not aware of Prevnar and only give Pneumovax, so you need to check on this. Make sure you get the Prevnar, and get it BEFORE the Pneumovax. SINCE I WROTE THIS, some doctors now recommend the gap between these two vaccs be extended to six months rather than eight weeks.
3) Haemophilus influenzae type B (HIb). This is different from the annual flu vacc, and is well worth getting, as HiB is a nasty bug that can also cause Pneumonia and meningitis. ( According to the chart, this is only for post Haematopoietic stem cell transplant recipients, but most CLL doctors recommend it.)
4) Consider boosters for tetanus/diptheria/pertussis (whooping cough), if it's been over 10 years since previous vaccs for these.
5) Consider Meningococcol vaccs (There are different vaccs for different strains. I had vaccs for MenB and MenC, followed by boosters )
6) Consider Hepatitis A and Hepatitis B
There are some “considers” here, so it's always a good idea to check with your haematologist, in case there are reasons why you shouldn't have any of the vaccs listed. (eg. If you've had some of the vaccines before, or if you're in the middle of treatment, recommendations may be different).
Also, the guidelines for vaccinations change over time. There is a new shingles vaccine in the pipeline, that is non-live. it should be safe and more effective for us, but it's not available yet.
The list above gives the vaccs that are most commonly recommended by CLL specialists, but there are others that are also safe for us. A full list is given here (thanks Cllcanada).
This covers a wide range of vaccs that are “permissible”, but we don't usually need ALL of them (unless we know we face a particular risk of those infections.)
Here are some words about the flu vac, from Prof Chris Fegan (Consultant Haematologist at Cardiff University):
"... It's just as important to make sure those close to you have the flu vaccine too, as the most likely source of flu transmission to you is people close to you. They will respond to a flu jab better than you will, so they are protecting you by having it…” (In the UK, spouses, partners and carers are entitled to have flu jabs on the NHS.)
Sometimes doctors are not motivated to give us vaccinations - they say we won't respond well to them, because our immune systems don't work so well. It's true they don't work so well, but even when my CLL was quite advanced, I got surprisingly good responses to ALL the vaccinations that I had.
*THINK ABOUT WHAT WE’RE EATING… There are many different opinions on healthy eating, and I'm not a dietician. However, there are general principles such as eating plenty of fresh fruit and veg – especially green leaves. Some folk find "juicing" is a good idea, and it certainly can help increase our intake of fresh veggies. Whole grain products are better than highly processed ones. The “Mediterranean diet” is said to be very good (less meat, more fish, olive oil, salads, tomatoes, bit of wine). We can try to cut down on extra sugar and salt in our food.
It’s probably not helpful to change our eating habits too drastically - we won’t stick to it. But if we can think of some simple, do-able changes to our diet, it’s a good start. I now have a bowl of porridge oats with apricots for breakfast, rather than peanut butter & jam on toast. I eat less cheese and put tuna in sandwiches. And I add water cress to almost everything – into stews, salads, sandwiches (no not in the porridge! )
* GET TO THE RIGHT WEIGHT (not too fat, not too thin). The following link is helpful. nhs.uk/Tools/Pages/Healthyw...
* ALCOHOL IN MODERATION.. Too much binge drinking can damage the liver. If/when we need treatment for CLL, we need our liver and kidneys to be as healthy as possible.
* GET BLOOD PRESSURE CHECKED– get it treated if necessary. High BP can damage kidneys and limit CLL treatment options. Some medications can also damage our kidneys, especially if taken longterm. So check this out. eg. Longterm Ibuprofen and protein pump inhibitors (such as Lansoprazole and Omeprazole) are best avoided - not just because of the kidneys. They can also lead to osteoporosis and other things. While on the subject, it's good to talk over with our doctors, the possible side effects of ALL medications that we take longterm. Sometimes there are safer alternatives that will work as well.
* Do our best to CONTROL ANY CHRONIC INFECTIONS OR INFLAMMATION in our bodies, such as eczema, asthma, irritable bowels, sinusitis, rhinitis, stomach and urine infections. Try to avoid things we know we’re allergic to, or foods that irritate our stomach and/or bowels (Yes we probably do that already, but it becomes even more important when we have CLL). CLL is aggravated by inflammation.
* Try and AVOID CATCHING INFECTIONS – from people, animals, food, cuts and grazes, gardening, etc. (A book could be written on this subject, and a LOT has been written on this site that is worth checking out). Of course there is a balance between living in a bubble, and letting everyone with a nasty cold give you a hug. People have to work out what’s best for them, at different times. During treatments or in late stages of CLL, avoiding infections can be a matter of life or death. But even in early CLL, our immune systems are weakened (even though blood tests might not show it).
* GET A GOOD DENTAL CHECKUP – don’t leave pockets of infection in teeth or gums.
* Get blood tests for VIT B AND VIT D. Low levels of these are surprisingly common, and can usually be rectified with supplements. Boosting them into normal levels can make a lot of difference to fatigue (though some people cannot absorb Vit B12 orally and it needs to be via injections.) Vitamin D may possibly slow the progression of CLL. (Stay tuned for the results of a Mayo Clinic study on this.) Don’t get tempted to start taking a lot of supplements that we might not need, and could even be harmful. Green tea and turmeric might be useful for some, but caution is needed even with these – check first with doctors and make certain that your liver function tests are carefully monitored.
* STOP SMOKING (I’m sure everyone already knows that, but I’m saying it anyway). Chest infections are big killers of CLLers.
* FOLLOW UP ON ANY UNUSUAL SYMPTOMS such as unexplained pain, bleeding, abdominal bloating, lumps and bumps, skin lesions, moles etc, (secondary cancers are more common in CLL patients).
* COVER UP IN SUNSHINE- wear big sunhats and use sunscreen… (Skin cancers are MUCH more common in CLL patients).
* Try and GET ENOUGH SLEEP. This might mean taking naps during the day – works for me (though not for everyone).
* AVOID STRESS as much as possible (Easier said than done, but worth trying). These days I try to limit stressful things in my life to the strictly unavoidable stuff, or stress that is actually challenging and fun (like scrambling up snowy hillsides ).
* FEEL FREE to rant at times.. . Life can be cruel and it’s no good pretending all is well when it’s not. But after the rant, try and relax. I try and watch DVDs that make me laugh…
* ENJOY LIFE!! We don’t want to let CLL control us or define us. Enjoy our friends, families, pets. Love, laugh, be grateful, forgive... Make the best of the times we have…
Some additional points (thanks for these, Cllcanada, Msuteg, AussieNeil, SeymourB).
* TELL ALL OUR DOCTORS AND DENTISTS that we have CLL, and encourage them to communicate with each other about our diagnosis. Be quick to tell them if we have new symptoms - things can go wrong more quickly with CLL patients than other people.
* TELL OUR DOCTORS ABOUT ANY SUPPLEMENTS we might be taking - it might be more relevant than we think... This is specially important during treatments.
* Try and get a REFERRAL TO A DERMATOLOGIST and see an ophthalmologist annually... CLL patients are 8 times more likely to get skin cancers, and CLL infiltration into the eye, while rare, can occur...
* Ask your GP to TEST YOU FOR H. PYLORI, a gut bacteria, that has a connection with low platelet counts in CLL.
* KEEP COPIES of all your medical records and take them to any new specialist you see. (especially Blood tests and scans). Communication between different medics is sometimes very poor.
* MAKE A LIST OF ALL SPECIALISTS you have seen, when, and for what, plus their contact info.... Also make a list of all medications and who prescribed them. You can hand this to new doctors or the emergency room, should the need arise.
* CONSIDER WEARING A “MEDICAL BRACELET” containing information about CLL and any other health issues. It should list all medications you're on, mention your immuno-compromised status, and if you’ve ever had treatment with one of the "purine analogue" medications (eg Fludarabine (part of FCR treatment), FCR, pentostatin, cladribine or bendamustine/rituxan,, it should explain that any blood transfusion you’re given, must be IRRADIATED blood. This could be life saving if you are unconscious and being treated by people who don’t know about your illness…
* Find out WHO TO CONTACT if you have a CLL-related emergency. Sometimes we have to use GPs and A & E (aka emergency rooms). However, my haematologist gave me the phone number of the hospital haematology ward, that I can ring for advice. He is also happy to answer email enquiries. Ask your own haemo doc what he/she thinks about these things.
* SHINGLES IS ALWAYS AN EMERGENCY for CLL patients. Learn the symptoms of shingles, so you can recognise it immediately, and get treatment AS SOON AS POSSIBLE. Every hour can count, and can make the difference between complete recovery, and painful permanent damage to the nervous system.
* Make sure you DRINK ENOUGH FLUID. If urine is colourless or light yellow, we're probably drinking enough. But dark urine is a sign we need to drink more. Eight 8 ounce glasses (just under 2 litres) are recommended for healthy people, but it's not a hard and fast rule. During hot weather and times of strenuous exercise, more is needed. Plain water is best, but other drinks also count towards the daily total. Food also contains fluid, especially fruit and veg. (Watermelon and spinach are apparently at least 90 percent water)
We need to follow our doctor's advice re fluid intake. During chemo, or kidney infections, it's best to drink as much as possible. But certain conditions may mean that fluid intake has to be reduced.
* New point - just added Feb 15th 2016. Be aware that on the NHS in the UK, prescriptions for cancer patients are free. I think the criteria is that the prescriptions have to be for something related to the cancer, but this is open to interpretation. Many medications prescribed for CLLers (eg antibiotics) are related to the CLL even if they are not specifically a cancer treatment as such. I'll look up more details and clarify this later...
I reckon the things above would be good health advice for anyone. But with CLL, there is much more at stake…
I don’t want people to think that if their CLL does get worse, it is their own fault for not “fighting” it better… We have to be realistic - most CLL cases will get worse over time, whatever we do. I believe it depends largely on genetic factors, that we cannot change. But in improving our basic health, we may be able to slow things down, and we’ll be doing our best to increase our chances in the CLL battle.
Please let me know if there are things here that you disagree with, or want to add.
Best wishes to you all,
P.S. If you want to read more, see Part Two and Three