Original Coping strategies for Living with CLL - Part 1- Making good use of "Watch and Wait". Please read new version!

[PaulaS]

The updated version to this very popular post can be found here:

healthunlocked.com/cllsuppo... - Admin

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. (Pre-existing 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).

healthunlocked.com/cllsuppo...

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)

mayoclinic.org/healthy-livi...

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,

Paula

P.S. If you want to read more, see Part Two and Three

healthunlocked.com/cllsuppo...

healthunlocked.com/cllsuppo...

[splashsplash]

Thanks for the benefit of your gleaning since your DX, it's useful to have good advice summarised and shared.

[Justasheet1 in reply to splashsplash]

Well put. I could have used your post upon diagnosis.

Jeff

[PaulaS Volunteer in reply to Justasheet1]

Thanks Jeff. Yes I wish I'd had that sort of post too, when I was first diagnosed. That's why I've written it, and I hope to direct other newcomers to it - specially if I see them asking what they can DO..

Best wishes

Paula

[PaulaS Volunteer in reply to splashsplash]

Hi Splashsplash,

I'm so glad you found the post useful. Thanks for telling me,

Best wishes,

Paula

[Hidden]

Hello Paula,

Thank you for the great advice! And bless you for being so thoughtful.

[PaulaS Volunteer in reply to Hidden]

Hello Saxon-Pagan, Thanks for replying. I hadn't noticed you here before, and it seems from your profile that you only recently joined this group. So, welcome... I hope you'll feel at home here, and find it as helpful a community as I have.

Bless you too, in whatever situations you are facing.

Paula

[sun_flower]

Yes thanks ,very interesting read,I was diognosed with Stage A CLL 3 months ago,I had an infection when I had it for 3 weeks my GP did a blood test and my WBC was 11 its since gone down to 10.5,no symptoms and all other bloods normal.I am still in shock so its good to read others storys,I was a medicine dispencer for 19 years and never heard of it before.My GP told me its a good cancer [if there is such a thing] and I might never need treatment which I find hard believe,reading your post I am pleased to say i am a good weight,play bowls at least 3 times a week and walk every day,I do have naughty food sometimes but mostly eat well,I am tea total and have never smoked.I do have Osteoporosis which I will be having an IV Reclast infusion for the 1st time soon which I would rather not have.No body yet has offered me vaccinations yet only the flu jab so I will be finding out about that.Sorry to go on a bit and thanks its so nice to find this and know we are not alone. Regards Maggie.

[PaulaS Volunteer in reply to sun_flower]

Hi Sunflower, Good to hear from you. I love your photo - wish I could see it bigger. Looks like you have a little grandchild on your lap. I have a 5 month old grandchild too, so I could relate to that. I also noticed you said earlier that you are 66 - same age as me!

Interesting to hear that you play bowls... It's always nice to hear about other people's hobbies. Sounds like you already live a healthy lifestyle, but as you say, do check with your GP re other vaccinations, not just the flu jab. I was never offered any jabs apart from flu jab either, but when I asked about it, (and could show my GP the recommendations for immuno-compromised people - thanks to Cllcanada's links on this site), he gave them to me. When I told this to my haemo specialist at the hospital, he agreed that he wished all his leukemia patients could have those jabs (Funny that he never told me about them himself though. ).

Let us know how your osteoporosis infusion goes...

And thanks for your concern for my mother-in-law (that you expressed earlier). That was very sweet of you. She is doing a bit better, but it's not an easy time for her...

Best wishes,

Paula

[sun_flower in reply to PaulaS]

Hi Paula yes I have 7 grandchildren rangeing from 21yrs down to 2 yrs so they keep me happy,I will be asking about my vaccinations for definate,Ihave been bowling this morning out side on an all weather rink for a couple of hours so thats good,I was talking to the Osteo nurse yesterday so just waitng for the appointment I told her I was nervous about it because I have read so many negatives on it but she has reassured me.Pleased to hear your mum in law is feeling a bit better,she is lucky to have you I am sure you make her life easier even though you have the dreaded CLL.Nice to hear from you fellow 66er x

[PaulaS Volunteer in reply to sun_flower]

Hi Sunflower/Maggie,

So you have seven grandchildren. WONDERFUL. Yes I'm sure they keep you happy - and on your toes!

Have you had the Redclast infusion yet? If so, do let us know how you got on.

Best wishes,

Paula

[sun_flower in reply to PaulaS]

No I havent had it yet waiting for appointment still,I read in your notes about avoiding Omeprasol,I do take one of these a day ?? I was also wondering about the sun I spend a lot of time in my conservatory and it gets quite hot in there at times is this a danger to my skin do you think ?? sorry if this is a sillt question

[AussieNeil Partner Administrator in reply to sun_flower]

I'm on omepraozle long term and don't see a problem with that provided my haematologist is aware of it and the possible effect on red blood cell formation. (I've just had a blood test to check for that and should have my results soon.) It comes down to the risk/reward balance. I've already had one operation to widen the bottom of my oesophagus as it had narrowed from acid scarring so that swallowed food could not easily enter my stomach. Taking omepraozle daily should prevent that (I've had no recurrence in 6 years) and there's a definite risk of developing oesophageal cancer from gastric reflux.

With regard to your question about the danger to your skin from time in your conservatory, glass significantly blocks UV radiation, so your time there is not the equivalent of staying in the direct sun. (This is why photochromic glass lenses don't darken in a car). Have you ever noticed your skin becoming pink (i.e. starting to sunburn) from time spent in your conservatory? If so, then you definitely need to at least cover up, wear a hat and perhaps use sun block.

Neil

[sun_flower in reply to AussieNeil]

Thanks Neil I will remember that and will begin to wear sun block , my haemotolagist is aware that I take one Omeprazole a day.

[PaulaS Volunteer in reply to sun_flower]

Hi Maggie,

I was glad to see that Neil has answered your questions.

As he says, when taking any drugs, you have to weigh up possible risks against possible rewards. And when people have problems with acid reflux, then they have to do SOMETHING… Omeprazole is one of the safest drugs around, that has been used for a long time so is well tried and tested.

However, because it’s considered to be very safe, sometimes doctors leave people on it indefinitely, when actually they might not need it any more, or might be OK on a reduced dose. There are other drugs that also cut down acid (eg Ranitidine). It might be helpful to discuss this with your doctor.

I was on Lansoprazole (a similar drug to Omeprazole) for many years. It worked fine, with no apparent problems. Then I developed a sun sensitivity/intolerance, that was affecting my life drastically. I asked many doctors about it, but they would look at me blankly and had no ideas. Then one day I mentioned it to a dermatologist (whom I was seeing re a wart). He asked what meds I was on. I replied “Just Lansoprazole”

“Ah”, he replied. “Stop the Lansoprazole. In a tiny proportion of people, it can cause sun sensitivity.” So I stopped it, and within a few weeks I could walk in the sun again (albeit with sunhat and sunglasses).

It doesn’t sound like you have a problem with sun sensitivity, but this showed me how unexpected side effects can come from drugs, that doctors don’t always know about. And I think that when we have CLL,we are more likely to be vulnerable and have reactions that are rare in the general population.

It’s also possible that for some people, prolonged taking of PPI drugs (eg Omeprazole and Lansoprazole), can reduce absorption of vitamins and minerals from the stomach.

I suspect (though it was never proven) that I became low in Vit B at one time. After several years of taking Lansoprazole, I had become quite depressed, and couldn’t understand why. Someone suggested taking Vit B complex tablets, so I bought some from the chemist. Within a week, the depression lifted. It was amazing… As I say, there was no proof, as I didn’t get blood tests done. But it made such a difference to my life – I will never forget it.

Soon after that, I stopped Lansoprazole, and also stopped the Vit B complex tablets, and I haven’t had that sort of depression since. (I get times of feeling sad and fed up, but it’s a very different feeling to the longterm depression I’d been having).

Dare I go on? I will probably need treatment for my CLL soon, and my choice of treatments might be limited, because tests show that my kidneys are not that brilliant… They’re not too bad for my age, but they could be a lot better. When I queried the reasons for this, the doctor was a bit vague and said it was just “aging” of the kidneys. (High blood pressure could cause it, but mine’s always been low). However, when I read it up later, it seems that certain medications can have an “aging effect” on our kidneys. There’s a long list of drugs that are suspected of possibly doing this, especially if taken in high doses for longterm. Lansoprazole and Omeprazole are on that list. Again, I don’t think it’s a problem for most people, but it could be a factor for some – especially for those who might have a bit of weakness in their kidneys already.

Sorry to be so long-winded in my reply… It’s just that my own experience of taking Lansoprazole longterm has made me very wary. I now just take Gaviscon twice a day - especially after meals that I know are likely to give me problems, like curries, highly spiced and acidic foods. And that is working well for me.

However, who knows, maybe someone will tell me that Gaviscon causes problems too. And maybe I could now go back on Lansoprazole without any problems, seeing as I've had a long break from it. (I'm not sure about that though).

I hope this hasn’t overwhelmed you. I'm sure you'll be fine with Omeprazole, but it’s good to be aware of different aspects of it, in case you want to discuss it with your GP at some time. You've told your haematologist that you’re taking it, so hopefully any effect on your red cells will be checked.

Enjoy your weekend,

Paula

[sun_flower in reply to PaulaS]

Hi Paula,I had a word with my surjury nurse regarding Omeprasole as I get indigestion she said to not stop but take it every other day,I know as a former Pharmacy Technition that it is not good for the bones,when I was diagnosed with Osteoporosis the doctor assured me it hadnt been proven and I could take more than one a day but I wouldent want too. I had my kidneys tested before I have the Reclast infushion also my Vit D and Calsium levels they are fine as I have to take Calsechew D3 Forte every day,Ihave had a lovely family day today my 3yr old grandson had me playing football HA HA

[PaulaS Volunteer in reply to sun_flower]

Hi Maggie, Great to think of you playing football with your grandson Go for it...

I was interested to hear that Omeprazole is not good for bones... As you already have Osteoporosis, of course that will be specially relevant to you.

When I read the long lists of possible side effects that might occur with almost any medication I'm prescribed, I find myself sighing and taking them anyway. I expect most of us do the same. However, there are times when it's helpful to check out the possible side effects, especially when we're taking the meds longterm/indefinitely. Sometimes doctors can be rather dismissive about these things, as yours was. But it's us who have to live in our bodies...

I found the following link helpful. It mentions the osteoporosis issue, as well as lots of other things.

netdoctor.co.uk/digestive-h...

Anyway, I hope you get on OK as you reduce your Omeprazole doses. When I stopped Lansoprazole, my indigestion returned, and I needed antacids to cope. It got much less of a problem over time, but I still take Gaviscon regularly. I'm sure you'd already thought of that, being a Pharmacy Technician, but I thought I'd mention it.

Keep enjoying your grandchildren.

Best wishes,

Paula

[sun_flower in reply to PaulaS]

thanks Paula xx

[Cllcanada Top Poster CURE Hero]

Great overview Paula!

I would just add that newly diagnosed need to inform all their doctors and dentists that they have CLL, and encourage them to communicate with each other about your diagnosis... when required. Tell your doctors everything, always.

Further, 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...

Get your GP to test you for H.pylori, a gut bacteria, that does have a connection with low platelet counts in CLL.

~chris

[PaulaS Volunteer in reply to Cllcanada]

Thank you, Chris. Those points are very important.. All are things that should be reasonably easy for folk to do, yet can make a LOT of difference. I will add them to the article.

Best wishes,

Paula

P.S. They are now added...

[ballyhoo]

Thank you

Paula, Great advice for all you are so right .

I hope that when you start your treatment

all goes well . Thank you again for your Kindness.

Bless you

[PaulaS Volunteer in reply to ballyhoo]

Thanks for replying, Ballyhoo. It was nice of you to thank me for my kindness, but I actually enjoyed gathering all those points together. And it reminded me of certain issues that I myself could be working on...

Best wishes,

Paula

[alexmcg48]

Thanks for your sound advice. It pretty much fits in with my approach as I start on this journey, although I'd like to up my exercise levels, but I'm finding this difficult because the old back & knees are showing signs of wear & tear. Still I'll be keeping my fitness regime going for as long as I can. Interesting on the Vitamin D scenario, because one of the good sources of this the good old sun itself, but I suppose it's about not being silly & a bit like everything else, doing things in moderation.

Stay strong & positive & I hope any treatment you receive allows you to keep this disease a bay for as long as possible.

[PaulaS Volunteer in reply to alexmcg48]

Hi Alex mcgy48,

Yes it's hard to up our exercise levels when our joints are complaining.. I try to refer to it as "activity" that is good for us, rather than "exercise", because some people see "exercise" as always being very strenuous, and therefore impossible.

Interesting that you mention how sunshine is a good way to get Vit D levels up, yet for CLLers, sunshine can be dangerous... But as you say, it's probably a case of doing all things in moderation.

Take care,

Paula

[AussieNeil Partner Administrator]

Great summary Paula. It's good to see so many responses appearing so promptly from others sharing their journey after diagnosis.

Thanks for taking the time to do this from both your professional and personal experience.

Neil

[PaulaS Volunteer in reply to AussieNeil]

Thanks Neil. And thanks for your earlier input too, specially re the Vit B and Vit D.

Take care,

Paula

[Newdawn Administrator]

Excellent advice Paula and thanks for taking the considerable time to compile it for us all. You may be intending to cover it in your second instalment so forgive me if I'm jumping ahead but I'd also want to add that any cancer diagnosis can trigger feelings of shock, fear and utter bewilderment. It can also badly impact on families and relationships generally. I'd say take time to absorb the shock of the CLL dx before disclosing widely and find meaningful support from the people who genuinely care. Feel pity for the people who give up on you because their own fear and selfish needs make it too onerous for them to cope.

Don't ever feel guilty about the dark times but be very careful to seek professional help if they dominate. Depression can take many forms including anger and disengagement. And never be afraid to consider counselling and support...it's not a weakness, it's a strength at times of intense crisis.

Many people receive their diagnosis by accident whilst seeking answers about other medical conditions and so many of us have pre-existing conditions which can be more challenging on a day to day than the CLL.

But my biggest piece of advice nearly 3 years post diagnosis is, - don't ever surrender your needs to the ego of any medic. If it doesn't feel right, it's not right and a good doctor will understand that and help you. That's how I got my melanoma dx against all predictions. Learn as much as you can and be your own advocate.

And lastly but very importantly, support each other on here. You'll find that you can make special friendships that way.

Many thanks Paula and hope all is going well for you as you contemplate treatment.

Newdawn

[PaulaS Volunteer in reply to Newdawn]

Thank you, Newdawn. Very relevant issues, that will touch a chord with lots of people. I've mentioned some of those things in my Part Two, but not all. So I'll add your points to it before I post.

Thanks again,

Paula

[Ernest2]

Hi Paula,

Great list. I think 'enjoy life' is the key one for me.

Look forward to part 2.

Ernest.

[PaulaS Volunteer in reply to Ernest2]

Thanks Ernest, Part 2 will follow soon...

Keep enjoying life,

Paula

[Rex12]

Thank you for your post. I found the list of what I can do most helpful. I will read and retread it so that I don't feel helpless in dealing with this cancer.

I must say after 13 months I am still trying to come to terms with the diagnoses. In the meantime a family friend 15 years my senior is diagnosed with pancreatic cancer, is treated and goes into palliative care this week, life expectancy from time of diagnosisb3 months. Making sense of the cards we have been dealt is the hard part for us?

[PaulaS Volunteer in reply to Rex12]

Hi Rex12,

I'm so glad you found the list helpful. I've added a few extra points now, that are also important in our dealings with this cancer. And I'm going to add Part 2 tomorrow (hopefully).

Yes, it can be very hard to come to terms with the diagnosis... It's never what anyone wants... As you say in one of your earlier posts, outwardly we try to get on with our lives as best we can - be good company, laugh and smile. But sometimes the hidden fears and other emotions come to the surface...

I'm so sorry to hear about your family member who has pancreatic cancer... That is a particularly difficult cancer to treat successfully.... You're right - making sense of the cards we've been dealt is hard - often impossible. We just have to play them as best we can... We'll probably never know the "whys" of cancer, but we can try and work out the "hows" of how best we can deal with it.

In your earlier post, you mentioned "drinking in every moment I have with my grandchildren, holding those little things close to my heart". I think you've really hit on something there - the way the little things, like holding our grandchildren, become even more precious after a cancer diagnosis... I find myself becoming more grateful for those "little things" that maybe I took for granted before... The spring flowers coming after the winter snow, the warmth of family and friendships, the beauty of music.. Yes we always appreciated those things, but they seem even more precious now...

Wishing you well,

Paula

[OzzieNick]

Brilliant PaulaS - Thank you!

We have a saying in our family... "If something is wrong we can do anything you want to try and fix it - that is, anything except nothing."

Good luck, Paula!

Nick

[PaulaS Volunteer in reply to OzzieNick]

Hi OzzieNick,

Good to hear from you. I liked your "family saying" about fixing stuff...

Good luck to you too,

Paula

[DocM]

Thanks Paula, I found this very helpful and informative

[PaulaS Volunteer in reply to DocM]

I'm glad you found it helpful, DocM. Thanks for the feedback,

best wishes,

Paula

[Hidden]

What a terrific post Paula, a great starting point for anyone newly diagnosed, and a good reminder for us all.

Thank you so much for putting this together, especially as you may be starting treatment soon and no doubt suffer from the usual tiredness.

I too look forward to part 2, and wish you well as do we all.

Bubnjay

[PaulaS Volunteer in reply to Hidden]

Hi Bub,

Good to hear from you. Thanks for writing, especially when you yourself are in the middle of treatment and still recovering from surgery.

Wishing you well,

Paula

[Firefly14]

Wow Paula, thank you! What an incredible post! So positive and great to see all of this helpful info together in one place. Shows that there really is lots we can do ourselves. I've been doing some of this since diagnosis and your post makes me feel very good about myself now thank you so much!

Firefly x

[PaulaS Volunteer in reply to Firefly14]

Hi Firefly,

Thanks for your encouraging words. I'm so glad my post made you feel good about yourself.

I hope you're doing OK, and getting enough rest. As you say in an earlier post, you are very young to have CLL... When I was your age I also had two small boys, of similar ages to yours. That was almost 30 years ago now, but I remember how busy life was... It was very tiring, even without having CLL...

Wishing you all the best,

Paula

[Firefly14 in reply to PaulaS]

Hi Paula,

Just decided to re-read your fab post to check that I'm on the right track in making the most of watch and wait! No harm in reminding myself every so often! I think of you often and your 2 boys, grown up now (I can't imagine!!). Hope you are doing ok.

In fact your point above about getting rest has reminded me that 2 people at work today told me I looked very tired - so I should put away the Internet and go to bed!!!

Take care

Firefly x

[PaulaS Volunteer in reply to Firefly14]

Hi Firefly,

I'm so glad my post is helping you make the most of watch and wait. That makes the time I spent putting it together, feel so worthwhile.

I'm doing OK thanks - on the verge of starting treatment (but I'm going to write a new post about that soon)

My boys are also doing well. They've had their worrying moments over the years, but right now are on an even keel. Phew...

Sorry to hear you had a tiring day yesterday (and that people at your workplace noticed). Are you working fulltime?

Anyway, I hope you had a good sleep last night, and were able to recover.

Wishing all the best to you and your family,

paula

[Firefly14 in reply to PaulaS]

Thanks Paula. Thinking of you and sending you love and hugs as you begin this next chapter of your journey and know that I (and of course everyone else here) am with you and hope that treatment brings good health (as well no doubt as a dose of worry and apprehension and whatever else..) and a feeling of wellness so that in time (hopefully very soon) you can enjoy life as much as possible.

I am lucky that since I had my boys I have been able to work 3 days a week, which has of course been an added benefit since diagnosis last year.

I'm not sleeping too well in general at the moment but I am putting it down to my dodgy thyroid needing to be checked again. Nothing that can't be fixed by altering the dosage of my medication hopefully. I am not worried about it - as you said before, having small children is tiring at the best of times so its not worth thinking too much about

Know that you are in my thoughts and I look forward to hearing about your treatment and progress.

love

Firefly x

[msuteg]

A wonderful chapter! I like the advice from someone about linking all the medical professionals, so each knows what the other is doing. Only thing I would add is learning to be a water drinker. Two to three quarts a day is necessary during chemo, and for several days after. Certainly two quarts a day is minimum for the healthy person.

[PaulaS Volunteer in reply to msuteg]

Hi Msuteg,

Thank you for your reply. Yes, it was a key thing that Chris mentioned, about getting the medics to communicate with each other. I've now added that, as well as his other points, to the article.

I'm glad you brought up the matter of how much water we drink. It got me thinking... I realise that during chemo, people have to drink MUCH more. But while we're still in watch and wait, it's more a case, as you put it, of "learning to be a water drinker". As you say, two quarts (just under 2 litres, or eight 8 ounce glasses) is usually recommended for healthy people. But it's not a hard and fast rule, as it depends on how hot the weather is, how much a person is exerting themselves, other health issues etc. I suppose "keeping well-hydrated" is the main thing. People with diarrhea will need more water - people with kidney problems sometimes have to have less. But it's a good thing to bear in mind... I will add it to the list

I notice that you are on FCR at the moment. I hope it's going well, and that you are eating better now. (And enjoying that shortbread you put in the oven )

Wishing you well,

Paula

P.S. I have now added the issue of drinking enough fluid, to the list.

[AussieNeil Partner Administrator in reply to PaulaS]

Good advice Paula, on how much water to drink. I remember being told during work wellness campaigns - and not that long ago, how we should drink 2 litres of water daily and that tea, coffee and other drinks didn't count - even if they were 99% water. That didn't make sense to me at the time and I was subsequently pleased to see the guideline changed to more sensible advice along the lines you've mentioned. The guideline also didn't take into account the varying water content in our meals - or that much of our food is converted into water when we burn it for energy. (Carbohydrates and protein are largely composed of carbon, oxygen and hydrogen after all (hence the name carbohydrates!). So they break down to carbon dioxide, which we breathe out and water which we also breathe out, sweat and excrete. It is funny how these ideas become so accepted and ingrained into medical advice - often without underlying studies to back them up.

It's strange too to see your comment about those with kidney problems sometimes needing to drink less, but it makes sense when you appreciate that it is your kidneys that have to work to maintain your hydration balance - so they need to work harder if you drink more. That helps us flush out toxins from drugs, with chemotherapy uppermost in our minds, but if our kidneys aren't working that well due to some illnesses that impact their function, then reducing our water intake makes sense. It's also why checking your urine colour is a reasonable guide to whether you are drinking sufficient water. If it is darker, ie there's a higher concentration of waste products, then you probably need to drink more.

This question of how much water is right for you, is also a good example of why we need to be cautious of what we read or are told and it might be wise to check some health related information with a health professional. As you pointed out, for someone with a kidney complaint, they could be harming their health by following well meaning advice on how much they should drink!

Your article is shaping up well. I'm sure there are many now eagerly awaiting part 2!

Neil

[PaulaS Volunteer in reply to AussieNeil]

Thanks for your thoughts re water, Neil. Yes, the "official" advice is less rigid now, re amounts we should drink. I just found the link below, which is VERY helpful.

mayoclinic.org/healthy-livi...

It says several of the things that you have said...

1) All fluids count towards the daily total, not just plain water. I quote: "...beverages such as milk and juice are composed mostly of water. Even beer, wine and caffeinated beverages — such as coffee, tea or soda — can contribute, but these should not be a major portion of your daily total fluid intake. Water is still your best bet because it's calorie-free, inexpensive and readily available."

2) Our food also contains fluids - "...many fruits and vegetables, such as watermelon and spinach, are 90 percent or more water by weight."

3) If urine is colourless or light yellow, we're probably drinking enough. But dark urine is a sign we need to drink more.

4) "Some conditions, such as heart failure and some types of kidney, liver and adrenal diseases, may impair excretion of water and even require that you limit your fluid intake".

We tend to assume that drinking extra water is good for us, as it flushes out toxins from the blood and possible bacteria from kidneys and bladder. But my comment on people with kidney problems sometimes needing to drink less, was based on the time I was nursing in a kidney dialysis and transplant ward, and our patients with very reduced renal function had to be very careful not to drink too much... We measured out their daily fluids very carefully..

So, thank you Neil, and thank you too, Msuteg, for bringing this up.

Happy drinking,

Paula

[AussieNeil Partner Administrator in reply to PaulaS]

Thanks for doing the extra research and expanding on the "how much water to drink" question Paula. I felt very sorry for kidney patients when I heard that some are limited in what they're allowed to drink. Must be difficult feeling constantly thirsty, particularly in hot weather.

It's amazing that even a simple thing like drinking fluids can be dangerous to our health for some of us.

Neil

[happyclappy]

Nice one, Paula!

I'm seeing my GP tomorrow so I'm making notes. Looking forward to chapter two.

Keep well.

Happy Clappy

[PaulaS Volunteer in reply to happyclappy]

Hi Happyclappy,

Thanks for your reply.

How did you get on with your GP yesterday?

I'm glad you're looking forward to Chapter Two.. At the moment I'm still replying to responses from Chapter One, and have made some additions to it, because of people's suggestions. I'm hoping to post Chapter Two tonight, when I've incorporated some other extra things that people have mentioned here.

You keep well too,

Paula

[Carpenters52]

Thank you Paula,

Very wise words indeed!

All the best to you, when your treatment begins,

Regards

Kelly

[PaulaS Volunteer in reply to Carpenters52]

Hi Kelly, good to hear from you. I hope you're feeling more relaxed about your diagnosis now. Not that we're ever completely relaxed about it, but I found it got a lot better with time. Well, most of the time... I think everyone still gets their wobbly moments.

I hope you've been able to keep up with your cycling. This snowy winter we've just had hasn't always been kind to cyclists

Take care and keep safe on your bike,

Paula

[Carpenters52 in reply to Carpenters52]

Hello Paula,

many thanks to you for kind message.

Yes I have relaxed in to it all a little now!

although the CLL support web site, is always the first Email read of the day.!

So many wise words on this site, many from you., !

Last week I joined, and had my first evening meeting. With the "East Dorset"

Leukemia & Lymphoma. Fund raising team! They are a lovely. Bunch,!

Only a few members, and 2 with some 40 odd years in the group!

Which is really fantastic, but they do need some younger members as in their own words, "they are not as young as they used to be! " And had never heard of CLL before, and were very interested in hearing all about it.!

All the best Paula.

Kelly

[PaulaS Volunteer in reply to Carpenters52]

Thanks Kelly. I'm sure you'll do a good job educating that Leukemia and Lymphoma team about CLL. Great that you met them. I expect they were very pleased to have a young person like you, to join them. (Though of course no one's pleased anyone has leuk or lymph).

This website is usually my first internet read of the day too. Not sure if that's sad or not, but it's become a big part of my life now. I'm not complaining - it has enriched my life so much.. Not just in teaching me about CLL, but in hearing real people's stories, and making unexpected new friends.

Best wishes,

Paula

[jangreen]

Hi this is what is missing when you are told you have Cll. How to make sense of watch and wait while carrying on as if everything is normal when your whole life has been thrown into chaos. Best wishes.

[PaulaS Volunteer in reply to jangreen]

Hi Jangreen,

Yes, that is certainly missing when we're told we've got CLL. It would be great if someone could sit down with us at the start, just to listen, giving us plenty of time, Then maybe talk through ways to help us cope with the shock of getting the diagnosis, and the grief of having to change our ideas of our futures, and to adjust to not being the people we used to be. Not everyone will want that, but some would probably find it very helpful.

Some people have friends and families who meet this role - for others, it may not work that way. It will be very different for different people though, as we all react in different ways, and have different needs at different times, re emotional support.

I'd like to think that for some people, having a list of things like I've written above, would be helpful for them to put their minds towards, as a way of using W&W time in some constructive ways. I realise that many of the points will be stuff people already know and are doing already. But there might be a few things that they can pick up on.

The things I've mentioned in Part One of my list (above), are mostly about practical ways of improving our general physical health. In Part Two, I've written about things more specific to CLL, including more psychological and social aspects. Newdawn has mentioned some very important aspects, that I'll add to it.

In these lists, I'm trying to gather together ideas of things we can actually do, or ask others to do, that will help us in the CLL battle/dance. I'd be interested to hear any more suggestions you might have.

With best wishes,

Paula

[Hidden]

Hey Paula you missed off loads of Sex

[PaulaS Volunteer in reply to Hidden]

Lots of possible responses to that comment have buzzed through my mind, AmericanFlyer. But I won't write them here...

My final point on the list was "Enjoy life... Love, laugh, be grateful, forgive... Make the best of the times we have…" That will cover a whole load of things...

[prosecco1]

Hi,

Thanks for your post, I found it really helpful

Elle

[PaulaS Volunteer in reply to prosecco1]

Hi Elle,

I'm so glad you found the post helpful. Thanks for telling me - it's always encouraging to know people have been helped by it.

I notice you live in Glasgow! A wonderful place. One of our sons lives there, and we always enjoy visiting him and exploring that city.

Wishing you all the best, as you adjust to this new world of living with CLL.

Paula

[prosecco1]

Thank You, looking forward to chapter 2. Your Son will also no doubt be "enjoying" the usual Glasgow summer, rain, rain and more rain 😁

Take Care

Elle

[AussieNeil Partner Administrator in reply to prosecco1]

Hi Elle,

Paula has indeed done a great job summarising all these useful tips. Regarding "chapter 2", there are links to parts 2 and 3 in part 1. Did you miss these?

Neil

[prosecco1 in reply to AussieNeil]

Hi,

I did miss the link, I've been reading so much about CLL that I think my brain has stopped taking in information and even seeing things that are right in front of me.

Thanks

Elle

[PaulaS Volunteer in reply to prosecco1]

Thanks Neil, for replying to Elle on my behalf.

Elle, you're not the only one who feels their brain gets overwhelmed with an abundance of CLL information. I like to read everything on this site - but sad to say, a day or two later I've forgotten most of it. By the time I've read the same thing a few times, it's more likely to "stick" in my brain though...

best wishes,

Paula

[Peggy4]

I've printed mine out and often dip into it, such a useful thing to have. Thank you again Paula.

[PaulaS Volunteer in reply to Peggy4]

Hi Peggy,

I'm so glad you're still finding it useful. Thanks for thanking me.

Wishing you well,

Paula

[jan1780]

Thankyou so much for all this valuable information, I too could have done with this information when diagnosed.

At moment struggling with horrendous fatigue, doctors struggling finding a cause.

So pleased I stumbled across you

Thankyou so much

Jan

[PaulaS Volunteer]

Thanks for thanking me Jan. I'm always encouraged to hear that people find this information helpful - though of course I wish they didn't need it... And welcome to the site. I'm sure you'll find it a lifeline, the same as I have.

Sorry to hear about the horrendous fatigue. LOTS of us suffer from that. It's good that your doctors are trying to find a cause, and not just shrugging it off. Sometimes things show up that can be treated fairly simply (such as vitamin deficiencies or chronic infections). However, sometimes no cause can be found, and we have to learn to adjust and pace ourselves... Not easy...

There have been lots of posts here, on fatigue. Here is just one of them. The writer is talking about sleep problems, but amongst the answers there is a lot of stuff about fatigue generally.

healthunlocked.com/cllsuppo...

Wishing you all the best,

Paula

[jmd4]

Paula above seems to record sensible precautions to take,so good on her! Iam in the watch & wait category coming up for two years now. would any one know if CQ10 therapy has any CLL treatment advantages, please? jmd4 Brisbane Q.

[PaulaS Volunteer in reply to jmd4]

Hi, jmd4, Thanks for writing.

I'm sorry but I don't know anything about CQ10 therapy. If you posted the question as a new post/question, then more people would see it, and you might get some more responses.

I've just realised that you're fairly new to this site, and haven't written much yet. So, welcome to the group that no one wanted to join but most are glad they found it..

best wishes,

Paula

[AussieNeil Partner Administrator in reply to jmd4]

Hi jmd4,

FYI, our member Pkenn happened to mention in another CLL forum the following about Co-enzyme Q10:

"Please discuss adding CO Q10 (or any other supplement) to your routine! The Mayo Clinic post about it includes warnings about possible issues that it can cause.

Coenzyme Q10 Background - Mayo Clinic

mayoclinic.org/drugs-supple...

"

Neil

[AnjiP]

wow!! thank you so much for all this information....and yes, wish i had been given information like this 5 years ago!! I knew i wanted to be fitter and healthier and have tried (to a point!!) but there are some things that are just so hard to improve, such as stress!! I have had a really awful couple of years which got really worse recently, and surprise, my CLL worsened massively (Consultant cant say it was due to the increased stress, but thinks it is probably linked)....now i am trying my best to de- stress, and wonder if the CLL will stabilise at the same time?? time will tell.....

[PaulaS Volunteer in reply to AnjiP]

I'm glad the info was helpful, AnjiP. I keep meaning to "tidy it up" and repost for newcomers, but never get round to it.

I'm sorry you've had a rough couple of years, and that things have been even worse for you recently. Yes, increased stress is never good for us... At the CLLSA meeting last week, a lady from the Penny Brohn centre gave a talk on that sort of stuff, and gave some ideas for breathing exercises to help people relax. I don't know where you live, but there is a Penny Brohn centre in Bristol, and maybe other places as well.

canceractive.com/cancer-act...

togetheragainstcancer.org.u...

However, I suspect that de-stressing, though always a good idea, doesn't necessarily help our CLL to stablise. I remember one summer I had one of the best, relaxing holidays I'd ever had, and was convinced my CLL would be all the better for it. I was very disappointed to find that after that summer, my lymphocyte count had taken a much bigger jump up than ever before. And it continued to get worse quite rapidly from then on... (It had been rather "indolent" up till then.)

I don't want to discourage you by saying that, but I think it does indicate that if our CLL starts to get worse, it's not necessarily because we've been too stressed. CLL has its own unpredictable way of working...

I wish you well in your de-stressing. It should help your sense of well-being, and boost your immune system, and that can only be a good thing.

Maybe you could start another post, asking people for things that have helped them through stressful situations?

Wishing you well,

Paula

[AnjiP]

Thank you for that Paula, and yes, historically i have found that my count does not seem to reflect always how i am feeling - it does seem to just 'do its own thing'....

Good idea on the suggestion of a post...lol...when i am not so busy and stressed!!!

I am in Lincolnshire - not heard of Penny Brohn centre's but will look them up, thank you. I am thinking i might well go to the next main CLL meeting in London, there may well be information that is of benefit and its been a while since i attended one, but now my condition is starting to worsen, i think i ought to be taking greater care of myself instead of coasting in the easy lane thinking all is fine.....

cheers - Angela

[PaulaS Volunteer in reply to AnjiP]

Hi Angela,

I hope you do get to the next CLL meeting (in London). I'm sure you'll find it very helpful, especially as you're getting closer to needing treatment. It's not just for the information given out, it's the sense of companionship with so many others, and meeting some folk personally, who we've only known online. I'm very glad I went to the Bristol meeting a couple of months ago.

Yes, it can be easy to coast along in the easy lane, thinking all's well, then suddenly things aren't so good any more. It's hard to adjust to that...

I noticed your responses to John Donogue's words (a couple of weeks ago, on KateEvaLen's post. I thought it was amazing that you could say your CLL was like a double-edged sword of a "gift" in your life. That is a very helpful and precious attitude... I try to think like that too.. Sometimes it works, sometimes I struggle...

I do hope all goes well with you, as you face the changing situation with your CLL.

Take care,

Best wishes,

Paula

[loran6t8]

Thank you so much for posting all that valuable information. I am coming up to my first year of diagnosis and I'm finding the advice invaluable. I've felt so helpless on W&W and have so far gleaned snippets of information throughout my last year but this has pulled it together nicely.

thanks for sharing

Loran

[Name-1]

It is very useful!

Thank You!

[PaulaS Volunteer in reply to Name-1]

Glad you found it useful, Olga. Thanks for thanking me...

Best wishes,

Paula

[numc]

Thanks Paula, great information and advice in a very readable format.

Kind Regards

Nuala

[PaulaS Volunteer in reply to numc]

Hi Nuala,

I'm so glad you appreciated the information. I keep meaning to rewrite and repost the article in a more succinct form, but haven't got round to it yet. I do update stuff from time to time though (especially re the vaccinations).

I see you've only recently joined the site. So, a warm welcome to the group none of wanted to be part of, but are very glad to have found!

Please feel free to introduce yourself and ask any questions...

Best wishes,

Paula

[chollie]

Thank you!!

[PaulaS Volunteer in reply to chollie]

Hi Chollie,

Nice to hear from you - thanks for the thank you!

It looks like you're new here and this is your first post. Welcome to the group! Please feel free to introduce yourself and ask any questions.

Best wishes

Paula (in Sheffield, UK).

P.S. The post you've replied to is actually from 4 years ago, and I've written an updated version since then.

healthunlocked.com/cllsuppo...