Hi. My husband Raja has been diagnosed with CLL a month ago and put on wait and watch. His platelette count and RBC is good with WBC at 20,000 and spleen 20 cm.
We are interested in keeping his immune system healthy by taking the right supplements and eating clean. Any advice is welcome as the net is filled with contradictory information that can be misleading. We are grateful to have the support we know we will receive on this site and to benefit from the experience of men and women who have walked this road.
Thank you. Reem
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Reem-ayoub
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Thanks Chris! We are trying to limit our food to natural high fiber fresh food. We are Lebanese and our traditional food is rich in vegetarian dishes. I avoid frying and skip the sautéed part. Instead I add a little home made olive oil once the food is off the fire. We do love bread though so we are trying to limit our consumption. best regards
Add to the reply by Chris, several tea's (dandelion, burbock, matcha, etc.) have some theraputic benetics. I live on an anti-inflametory diet since May 2016. Diagnosed WBC at 19, Oct 2016 WBC at 13. Could just be normal flucuation of WBC counts but I like the results for now.
I drink matcha green tea. Loose powder, not a tea bag. Supposed to be the highest EGCG. Expensive so i buy the culminary grade and put it in a morning smoothie.
i think it is important to accept that diet and lifestyle can do only so much. And then do all one can. Moderate exercise, adequate sleep, hydration seem obvious. Also avoiding too much stress.
Supplements? who knows. Many people, especially those of color, are vitamin D deficient, testing for and correcting is very important. Not a lot of docs are aware of this so you have to be your own advocate.
Alkaline water, lots of hype, definitely helps with gastro esophageal reflux, i have found great relief from muscle tendon, joint pain which cropped up in treatment. it may have to do with reducing body inflammation. Inflammation, by the way can probably be assessed by testing C reactive protein levels.
Now what foods exactly to use in reducing inflammation, not quite clear on that. Dr Andrew Weill, a well known advocate of alternate medicine can be a resource.
Also consider the "peoples pharmacy"(two pharmacists, the Bradens, on public radio for years) as a source of really good information, not just on alternative medicine but cutting edge well researched approaches to medical problems which will be years getting to your doc.
Of interest, it takes about 7 years for solid medical advances to be used by most medical practitioners. Not experimental stuff, but really well established care. Could go into the whys, but point is we need to do our own research, bring it to out treating physicians to evaluate for safety. If nothing else, you will find out if your physician is comfortable with this type of discussion or not.
Lenny thanks for your advice! I was looking into alkaline diets and alkali zing agents such as Apple cider vinegar and baking soda. Is that what you meant? And I totally agree with you on doing some research and running it by ou physicians before we dive into the unknown. Best of luck to you too! Reem
Well said Lenny, thanks. So happen the one Doc. (I presently have 4) that i work with on the natural med. side is a medical MD. 3 hr. drive every month to Orlando, florida which is inconvienient. Just did iv. test 3 days ago for heavy metals. Results will help is determine next step.
My advice is to eat what you want and makes you happy. Having CLL since 2002 I feel exercise is important and staying active. Take a multivitamin and vitamin D every day. I don't do much soda pop or drink maybe 1a month. I do eat chocolate daily. I don't add salt to my food. But I do use it in cooking. You will find how you LIVE your life is what matters. Be kind to yourself and others always. Anna
Great advice Anna. We started vit D once a week. Will have to check Raja's levels first in order to determine dosage. Does any multivitamin work? Thanks!
I wrote it after several years of living with CLL and reading things on this site. It’s a collection of many people’s ideas and suggestions for living with CLL and making the most of the watch and wait time.
Most of the points are simple, practical things we can do to improve our prospects. Many folk say they wish they'd had such information when first diagnosed. I hope you find something helpful there.
Do feel free to ask any more questions, and let us know how Raja gets on.
Wishing you well, as you make your way through the CLL journey.
Hi Paula. I read somewhere about your ruptured spleen. Does that happen because if gets more enlarged or due to a trauma? I have a few questions to ask you. Our oncologist keeps telling us Raja may not need treatment for many years. By the way he is 49 years, something i forgot to mention before. When I read some of the posts I realize that by having an enlarged spleen and a few lit up nodes ( as per PET scan) then we should already be looking into treatment in the near future. Am I mistaken? Can I send you pet scan report so that you can give me feedback on whether the nodes are of concern. I understand this is based on your own experience and will not hold you accountable 😉.
You asked about reasons for the ruptured spleen. Good question! It's very rare for a spleen to spontaneously rupture - even a very enlarged one, but in my case there were several factors involved. I'll write about that later, as it was very complicated and I want to make sure I explain it properly.
Re your suggestion of sending me Raja’s PET scan report, I’m afraid I wouldn’t be any help in understanding it. I’m not a doctor or radiologist (I’m a retired community nurse). Some other folk on this site might have some insights re scans, but hopefully you’ll soon get a chance to discuss it with Raja’s own medical team. I realise your main concern is whether treatment is going to be necessary in the near future, and there are so many things to consider when that decision is made. A very enlarged spleen can be one reason for treatment to start, especially as you say he's got shortness of breath because of the spleen.
You say that you are Lebanese. Do you still live in Lebanon?
I wish all the best for you and Raja, as you work your way onwards on the CLL journey...
Paula (in Sheffield, UK).
P.S. A quick answer to the spleen rupturing in my case, was a combination of the spleen being EXTREMELY enlarged (I waited too long before getting treatment), a slight knock to the stomach/spleen area earlier (which might have slightly damaged the spleen), and then the sudden stopping of Idelalisib when I'd only been taking it for 2 months and still had a VERY high ALC. (which caused the spleen to swell up dramatically only a couple of months after it had been shrunken by the Idelalisib). You asking me about it has made me think over the whole thing again, and I'll write more about it later. it is exactly a year (plus 2 days) since I had the surgery, and it was all very traumatic!
Thanks Paula! Your explanation was quite clear and sheds some light on what to discuss with Raja's oncologist/hematologist. The biopsy report will come out Monday and we will have more answers.
Yes we currently live in Lebanon where we have excellent doctors from both European and American perspectives. We definitely plan on seeking different opinions as W and W is a time for collecting data and looking into different options.
I do have one more question. If the spleen is enlarged it mean it is congested with white blood cells, right? Then is it common to have a normal red blood and platelet count?
Sorry to overdo it with the questions. I just worry that because CLL is such a unique and individualized condition, not every doctor is exposed to its different variations. I really have no idea how many people have it around here. Lebanon definitely has a high rate of cancer but not sure about CLL.
Might need to check out the UK sometime maybe. Who knows where the CLL road leads us.
Will leave you at that and tell you more on Monday.
Thanks for listening 😊
Have a great weekend!
Reem
PS I studied in UK and used to visit a cousin who lived in Sheffield ( small world) 😉
To answer your questions about the spleen, it can be considered a large, specialised lymph node and does indeed expand (like other lymph nodes also tend to do with CLL) as CLL cells continue multiplying. Because one of the spleen's important roles is to filter out of the blood circulation ageing blood cells and platelets, more filtering as it enlarges can be responsible for a drop in red blood cell and haemoglobin, platelet and even neutrophil counts.
You also mentioned to Paula about some lit up nodes on a PET scan. Because CLL cells only slowly grow, it is CT- scans, not PET scans, that are useful in assessing node size. (The radioactive sugar called FDG/fluorodeoxyglucosedye used in PET scans is taken up by faster growing cells, making them glow in the PET scan, CLL cells don't grow quickly enough to concentrate the radioactive glucose dye and shouldn't show up.) There are combined PET/CT scanners, so you need to determine if your husband had nodes that did show up under a PET scan, not a CT scan. If your husband has lit up nodes, he may have a different lymphoma than CLL.
Yes, the spleen is rather like a large lymph node (as Neil has said). It’s a place where lymphocytes tend to gather in vast numbers when someone has CLL. This causes the spleen to enlarge. The outer capsule of the spleen then gets stretched and becomes more fragile – and more vulnerable to rupturing.
CLL is a very variable disease though, and some people’s spleens don’t enlarge much. Their lymphocytes may be gathering in a lot of other lymph nodes throughout the body. These enlarged nodes cause various lumps and bumps – some can be felt from the outside, but some are enlarged internal nodes that can’t be seen so easily (except in scans).
In my case, it was the spleen that the lymphs seemed to favour (as well as staying in very large numbers in the blood). Because of that, one of the treatments first suggested to me was radiation of the spleen (which would shrink it). That wouldn't have been a permanent solution, but would have relieved the symptoms of the enlarged spleen (Uncomfortable abdomen and inability to eat “normal” sized meals).
You ask whether an enlarged spleen might mean someone could have normal red blood and platelet counts. Well I’m not a doctor but if a spleen is enlarged, I believe it filters more red blood cells and platelets out of the blood, so these would tend to reduce over time. (My haemoglobin and platelets improved when my spleen was removed).
Don’t worry about overdoing it with questions. That’s what this site is for. We won't always have all the answers, but we can share our own experiences and things we've learnt on the way.
As you say, there are so many different variations of CLL that most doctors won’t have had experience of them all. And some countries do have less folk with CLL than others.
Good to hear you have some excellent doctors in Lebanon, with perspectives from different part of the world. As you say, there are many different opinions on best treatments for CLL, with so much changing all the time.
Interesting that you studied in the UK and have visited Sheffield a few times. Yes, it’s a small world. If your path brings you to the UK again, hopefully you’ll come to this lovely city again! I’ve never been to Lebanon, but I know people who have, who speak highly of the lovely folk they met there.
I realise it’s tomorrow that you get Raja’s biopsy report. I hope you'll be able to discuss it with the haematologist as soon as possible. Do let us know how it goes!
Best wishes,
Paula
P.S. I was interested to read Neil's comments on CT and PET scans. I'm sure the "lit up" nodes on Raja's PET scan will be something you'll ask your doctors more about.
P.P.S. I mentioned that enlarged spleens are more fragile and vulnerable to damage, but I must add that it's very rare for them to spontaneously rupture. In my case there were several other factors involved (as I explained earlier). I wouldn't want anyone to panic when their spleen enlarges - just try to avoid blows to the abdomen. (My slight "blow" to the abdomen came from a big photo album I was carrying through a narrow doorway. Somehow the album hit the doorframe and bounced back into my abdomen. Although my spleen didn't actually rupture till later, it was probably a bit damaged by that knock, so more susceptible to later problems).
Paula thanks again for taking the time to write this. Yes I do have a list of questions to ask the hematologist tomorrow. He is Chief of Onco/hemo in a major hospital here with a French background. He has followed up my niece who had hodgkins at 14 and sister in law who had cervical cancer at an advanced stage and both have been over 5 years into remission. Will be checking another US accredited Dr once we have the results.
Will also try to find out more about vitamin deficiencies and vaccine protocols. again two very controversial subjects here it seems. I already came down with a flu and hoping Raja would not catch it.
For now Raja is healthy and getting more fit by the day.
Till tomorrow my new-found friends! Have a blessed Sunday!
Thank you all for your heart felt advice. We will do all of the above and see how things go. We will keep you posted with any new information we receive about Raja's biopsy as we were misled in the beginning into thinking it was Mantle Cell Lymphoma by one of the labs when we did the flow cytometry. Don't ask me how that happened even our hematologist/ oncologist was shocked. We repeated it and they confirmed CLL. But, just to be sure we did the biopsy. Raja is working out 3 times a week for a start with a personal trainer in order to get his strength back cause he went through some symptons like shortness of breath, drenching night sweats, and severe chills, diarrhea and a flu all at once for a period of two weeks ( which is why we did the blood test to begin with). All of these symptoms have disappeared since then. The Dr believes that the last two just coincided and came in parallel with the more common leukemia symptoms( namely night sweats and chills). Shortness of breath is the only thing remaining due to enlarged spleen.
Is it ok to take whey protein? And if so any recommendation?
Paula, I will look into the beginners' guide and try to make more sense out of where we stand now!
Paula, Chris, Lenny,Neil and Anna and all who have read our post...
Raja's biopsy report pointed to indolent Mantle Cell Lymphoma. It did not come as a shock thanks to this group and Neil's insight. I dug back into the blood tests only to find out that CD23 was a very slight positive pointing towards MCL. The next day the Dr's report confirmed it.
So now back to square one. We are looking into different treatment options as one doctor is advising R-CHOP followed by R-DHAP and then autologous stem cell transplant; while another is saying Bendamustine and Rituxan consolidated with high dose chemo and stem cell transplant.
Again any insight or direction from you would be greatly appreciated. If you know any one who has experienced MCL or any form of lymphoma and if there is a support network for that it would be great.
So I guess we will not be continuing this journey with you but will hold you in our prayers!
Hi Reem and Raja, I'm glad it wasn't too much of a shock for you, that the biopsy is pointing towards indolent Mantle Cell Lymphoma. But it does mean different treatment options.. not easy...
Another member of our group ( zentangle ), had a similar experience about a year ago. You might be interested to read his story. He was diagnosed with CLL at first, then it turned out to be a combination of CLL and MCL. He had an autologous stem cell transplant and the last we heard he was doing well, though he had some tough times along the way.
Sorry you won't be continuing your journey with us on the CLL train, but do keep in touch. It would be good to hear what treatment is decided on, and how Raja gets on.
Hello CLL friends! Just want to update you on Raja's case! Since rediagnised with MCL, we are finally starting treatment on Monday the 14th. Raja will be getting Bendamustine/ Rituxinab for six rounds. Each round will be two days. After that he will be assessed for SCT and we will go ahead with it. We finally have come to terms with this disease and are happy to begin
Thanks for the update, Reem. I'm glad to hear that you and Raja feel you've come to terms with the disease now, and are happy that he's starting treatment on Monday. Even though MCL is different to CLL, many folk with CLL have treatment with Bendamustine/Rituxamab, so will understand how it is.
All best wishes for Monday - let us know how Raja gets on.
Hi Paula, hope this holiday season is treating you well! We finished two rounds of Bendamustine/Rituximab. It has been brought to our attention that Bendamustine might have a negative toxic effect on stem cells which might put the success of the auto stem cell transplant at risk. Just thought I'd ask If any one has heard of that. I know as CLL you do not deal with transplant but just thought I'd ask!!
Hi Reem, Sorry I don't know anything about Bendamustine having a bad effect on stem cells (which might add risk to the transplant.) But it's not a subject I know much about.
You might like to post this question as a new post so more folk will see it. Many on this site have a lot more knowledge than I do. Some of the younger and fitter CLL folk have had transplants.
It must be very unsettling for you to hear these things about Bendamustine at this stage... I do hope you get some reassurance about it.
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