I just received result of my CLL prognostics markers. Unfortunately, I am positive for 11q deletion and am unmutated. From what I understand, 11q deletion is considered one of the 3 poorer prognostic indicators. This makes me sad and I'm disappointed, but I am negative for TP53 and 17p so that is good. After reading a bit on this mutation, it seems to be characterized by bulky lymph nodes.
I see Dr. Ian Flinn for management of my CLL and I trust him. His NP called me with the results and said that I wasn't currently at a point for treatment, but that I would likely need treatment within 2-5 years based on what is known about this mutation and it's more aggressive progression.
After much discussion about my ongoing GI symptoms she said she wants to discuss with Dr. Flinn to get his opinion on whether my GI symptoms may be equivalent to CLL symptoms.....since a biopsy from my colon polyp 9/2021 identified the presence of CLL within that tissue. In addition to recurrent diverticulitis, I have lost Approx 20 pounds over the past year and do have night sweats, though not drenching. Other than that, I feel good and tolerate an active life without fatigue.
This is a theory I have entertained as well, but had been reassured that the diverticulitis and the CLL are not related by both Dr. Flinn and my GI doctor. I have always wondered if the inflammation that occurs as part of the diverticulitis is actually CLL in my colon. The NP said that CLL in the colon is not common, but that CLL can affect pretty much anything since it is a systemic and constantly circulating cancer. That seems like a reasonable consideration to me. I have had 3 flares of diverticulitis within 1 year....with no real triggering event, other than stress maybe. I do think checking my IgG to see if there has been a further reduction from last year and a repeat CT would be warranted to see if my abdominal lymphadenopathy has worsened etc. I certainly don't want to undergo an unnecessary surgery for diverticulitis if it is actually being caused/exacerbated by lymphatic inflammation from CLL.
Any thoughts would be appreciated.
Thanks so much and have a wonderful holiday weekend.
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peacethruthestorm
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I agree more with you than the docs. There isn't "definitive evidence", but CLL is still considered rare, and routine testing doesn't include tests other than blood/bone marrow.
There are sprinklings of reports in the literature of CLL invading various organs, You had a biopsy verify that tissue is infiltrated. While there is "no proof" currently that the CLL infiltration is causing your GI symptoms, I think it's reasonable to assume it's possible for anything foreign (like CLL cells) in the GI tract lining to induce an inflammatory process. GI infiltration of CLL has been known since at least the late 1990's:
Here's a case study where histologically, it was concluded that a CLL patient anemia was not due to bone marrow effect, but CLL contributing to iron loss. These authors state " If a CLL patient has any symptoms suggesting a possible GI manifestation of the haematologic disease or anaemia not explained by bone marrow infiltration or hemolysis, the diagnostic evaluation should include endoscopies with adequate biopsies.". The treatment here was iron supplementation, but IMO if I was thought to have diverticulitis from CLL, I would treat the CLL not have surgery (if there was merely inflamed tissue; excessive/large abscesses would have me considering surgery if other treatment wasn't recommended) .
I'll also mention that I think I really can tell when I eat something containing some sort of chemical: flavorings, preservatives, stabilizers, etc. My gut is not happy with frozen meals, or packaged/boxed meals, or fast foods. We're talking, make a cheese sauce for Mac n Cheese. Bread is either made at home or from a local bakery with few ingredients. Most of this type of stuff isn't for me, but for family. But it's hard not to have some of it when it's around. I won't ask others to totally change their diet just so I am not tempted, but to have the "cleanest" forms of it around. Whatever extent all these chemicals in our foods affect us, they too will be spared.
I too have to be careful of what I eat. I can tolerate a small piece of homemade apple pie but even homemade cake is too much. I eat mainly unprocessed food except for Greek yogurt and oatmeal (not instant).
I have started buying einkorn, the original high protein lower gluten wheat found in nature that humans evolved on. The company, Jovial, also makes a sourdough cracker I can eat. The woman who started the company was looking for options in her gluten-sensitive daughter. Human intervention of wheat to make it cheaper/easier to mass-produce increased the gluten content of this grain. I find I like it much more than standard sterile white flour, but then again I didn't eat standard white bread growing up. It was always a hearty old fashioned pumpernickel or rye.
I'm not sure anyone has tested them yet. And although I have read statements that einkorn doesn't provoke as strong an insulin response, I haven't seen any data. There are only a few sources of sprouted and milled flour in the US. I am looking more at overall glycemic load, in addition to the index. Foods high in fiber/natural inherent fat, tend to have a lower glycemic load as well as index. Since the cracker is fermented (sourdough) there's a bit of benefit in that, lowering the GI.
Animal studies suggest that einkorn can be part of a healthy diet. Since it contains other healthy compounds, looking strictly at "glycemic index" may not be optimal when determining if and how much one might eat. I am interested in how, unlike standard white or other flours, it seems to help a bit with a healthy gut biome. My husband loves pizza and grilled cheese and French Toast, so making sourdough breads and pizza dough is the best compromise I can come up with, for things that *must* have a white flour.
I'm sure you have noticed, but I like to use PubMed links a lot instead of a direct link to an article, since related links are there. For instance, I saw this 2022 link in the "associated link" underneath the late 1990's one.
Yes!! I believe that to be true....at least for myself. Would you think it a negative to begin treatment for the CLL with the hope of addressing and resolving the the GI symptoms, rather than waiting for the a drop in hemoglobin and platelets, etc...... that is the usual indication for treatment? Of course, I had hoped I would never need treatment, but I want be free from these GI symptoms, as that would improve the quality of my life a great deal. My CLL doc briefly mentioned that when treatment was needed V & O may be the route to take.
My personal belief, is to treat sooner rather than later. However, I have an aggressive variant that traditionally has had poor outcomes. I have had to treat symptoms not lab values. In someone who is otherwise non-symptomatic, with a generally benign variant, the potential side effects may be riskier than choosing not to treat.
But you are symptomatic, and there is a possibility that treatment will relieve the GI problems if they are indeed being caused by your CLL. The big question would be, what to take. Since your CLL is otherwise mild (you've only posted about GI problems, so I am assuming you aren't having issues with anemia or low platelets or neutropenia) I wonder why your doc isn't considering an oral BTK inhibitor. While we know resistance is possible, it generally doesn't occur immediately. If your CLL otherwise isn't affecting you, I would think avoiding CD20 depletion and the ability to make antibodies at this point in history would be a major consideration. I know that the rise of Covid, and how it is being handled, is a major reason why I didn't choose V&O. Along with, being in an area where people won't mask, we get a lot of tourists, and the hospitals are stressed. I wonder if a year or so on a BTK would tamp down the CLL enough to see if your GI problems start to resolve. It could be paused, to see if GI problems returned.
If you aren't seeing a doc doing or reading a lot about CLL research, they may not be considering these types of treatment options. Or others. There are a number of venetoclax/BTK inhibitor combo studies being done. These should have less effects on antibody production than anti CD20 therapy, while causing less resistance since it's not monotherapy. However, we won't be able to say for sure until the studies are completed, if the side effect profile as well as outcomes are better, worse, or the same as other combinations.
I have normal hemoglobin, and platelets and neutrophils count was with 4 or 5 I believe. I am active and generally feel well without fatigue - I walk 4-6 miles per day without any issues thankfully. My CLL doctor is considered an expert and participates in a lot of CLL research (Dr. Ian Flinn). Dr. Flinn mentioned V & O during a casual discussion about treatment, but also said treatment would depend on what the genetics/prognostics identified.
I like the idea of time limited therapy with V & O and would not want to ask for the problems associated with ibrutinib like bleeding or afib. I am no expert, but it seems if I were to treat with V & O with hope of achieving MRD for a long time.....if/when occurrence happens following V & O, I could then move to a BK2 inhibitor at that point. ??
Oh sure. Either way, I think. There are a number of ongoing studies, but I am unaware of any at this point in time saying a specific regimen would be superior for your variant. And there currently isn't any medical reason to say "if you have this, you can't have that" for the V&O vs BTK inhibitor issue, I think. Dr. Flinn would definitely be the person to ask about that haha. But if you want to try V&O, then use a BTK later if it came back, that seems reasonable. Pirtobrutinib is scheduled to be coming out for CLL soon I believe, which seems to have less side effects. And of course, further down the road there likely will be new drugs. Plus if you are looking for "mild, short treatment" perhaps doing V only (like I am planning on) might benefit. I am on the fence as to O use right now. I know the remissions with the combo therapy seem to be better than those with single agent, but I just don't know how affecting antibody production with Covid an issue will play out. Since it seems it will turn out to be relatively easy to tailor new vaccines for new variants, as well as make antibody mixes like Evusheld, my concerns may not be warranted.
Please be aware that Venetoclax can cause GI issues in some people. I had ongoing bouts of diarrhea while on V. It was eventually somewhat managed through dietary changes thanks to a great dietician.
My case is very different from yours but just wanted to say that doctors are sometimes fast to say “ CLL is not the cause”. When I met my CLL specialist for the first time for a consult, I asked about kidney involvement. Was told the same thing as you, very rare, probably not the case for you. You guessed it, both my nephrologist and oncologist were surprised when my kidney biopsy results showed that indeed the CLL was causing my major kidney failure. I admit my case is extremely rare, only 2 cases have been written up but still don’t dismiss your gut feeling, doctors can be wrong sometimes and CLL can be complicated.
I agree. When docs get focused on "the literature" and those past numbers, and fail to realize that things can and do change especially as more knowledge is gained, this type of knee-jerk reaction occurs IMO. Someone who says "it's not been reported" or "I haven't seen it happen" is much much different then a flat "it's not possible." In your case, I would think "it's very rare, probably not the case, but let's see" would have been more appropriate. Keeping an open mind and all, y'know.
It's also why I "power dress", wear expensive jewelry, etc. when going to the doc. Womens' complaints and concerns are often dismissed. I now dress like a "CEO of something". Because in the past, I did dress casually and wonder if/how that affected interactions.
Sofia: I can’t imagine your complaints would be dismissed because you are a woman or based upon how you are dressed. You have a sharp mind and you clearly posses an extensive scientific/medical background. I just don’t see your opinions not being taken seriously. I hope I'm correct.
Ha! Thanks! IDK to what extent John Molloy's older Dress For Success research into how the way we dress affects perceptions is still relevant in this day and age, but I do think I am treated differently when I dress differently. If I stop at the grocery store after a doctor visit, panhandlers will ask me for money. They don't do so when I am dressed casually in jeans, no makeup, or jewelry haha.
And I did have an experience where I felt infantalized/spoke down to with one group (I no longer use). IMO it was a "the doctors are king, you don't question them" and "patients are to be babied and told everything by the nurses, and you don't question them either." This was not a teaching institution, which IMO have a distinctly diffent flavor. Some of the nurses there would argue with me about the correct way to do less painful, large volume, subcutaneous injections on me, using a protocol I had done before and I brought to them. They would try to tell me "Nursing Policy" and I would bring hard copy printouts from the American Nursing Association validating my point, which would anger them. As well as some other things. But I noticed the defense attorney a few chairs over, dressed like he was in court, got treated much differently. Hence my change.
Yes. But dressing casually or wearing inexpensive clothing would likely lead a panhandler to conclude a person (man or woman) didn’t have money and hence wasn’t worth soliciting. I agree with this line of thinking. However, this is different from a medical professional not taking the opinion of a woman seriously. I agree norms were different in the past but hopefully they have changed for the better.
I did have an experience early after my CLL diagnosis when I dealt with an older doctor (70+ YO) who saw me as a patient who should accept his approach to treatment without discussion. And as you may recall, he did everything wrong. He was also sexist. I remember him telling me a female NP giving me a physical would be inferior to him giving me a physical. I was in shock with my diagnosis and went along with his misguided approach. Anyway, I guess there are these still types of doctors in practice but I like to think they are few and far beyond in this day and age.
I have to add though that my specialist responded swiftly once my kidney biopsy came back. Did more tests than my nephrologist. Consulted with a Multiple Myeloma specialist at the same cancer center and presented my case to a group of CLL specialists to get feedback. My CLL has symptoms that are seen in MM but not in CLL.
This sounds like you have an awesome doc! I want to ask, was your FISH a "CLL panel" or a more expanded FISH panel? I ask because of your comments regarding MM symptoms. There are some reports of "mixed cancers" because some of our diagnosis is based on specific mutations and deletions. Certain patients are being found to have CLL in blood based on FISH/flow results, but organ infiltrates are getting a different diagnosis due to slightly different FISH/flow results for those cells.
I noticed my original FISH tested for numerous markers, since at that time it wasn't clear I had a chronic as opposed to acute leukemia going on. But the followup FISH I requested a decade later, was a "CLL panel" and only looked for 5 things. I wonder if the symptoms commonly seem in MM or CML you are experiencing, is due to some genetics more commonly associated with MM or CML. If your doc suspected CLL, and only a CLL panel was run.
I had a kidney biopsy which came back as kappa monoclonal gammapathy with high levels of deposits of IgG-G1 3+, A 2+. Also, elevated Calcium levels in my blood. GRF of 28 before treatment, urine protein levels at 14000 ml. BMB was tested for several different lymphoma’s including Waldenstroms and multiple myeloma, only came back positive for CLL. My doctor basically said you have a genetic mutation for which we don’t have a test for yet.
Yes, it does. I only started treatment in March. Because of my low grf, Calquence was my only option. Short term treatments were not an option, they were afraid my kidneys would not be able to handle it. My grf has improved, creatinine, bun, free kappa chains have gone done. Hg is back at 10.7 from 6.4. Hoping to add ventoclax after a year to see if I can get into remission.
Sadly I think your perceptions are correct on this. Every interaction with a power balance has a psychological component and doctors like every other professional with responsibilities have a sense of self preservation so they ‘assess’ the patient. Use of language and confidence is key. This is probably quite an unconscious process that we are all guilty of. I’ve noticed that mention of my profession and background can alter the balance in medical discussions though I’ve been less aware of the appearance element. I know however that being in a dressing gown greatly enhances and distorts the power balance! 😉
My husband is currently under a Dana Farber study for his CLL (he has TP53 and 17p mutation) and his CLL Dr is excited that a treatment will soon be studied to unmute these genes)! The CLL medical community all over the world) are improving the CLL treatments!PS before we went to Dana Farber- my husband previous CLL Expert never heard of the kidneys being infected by CLL - thank goodness for a second opinion) which is saving my husband's life (he is progressing well - only 4 months into the treatment and CLL decreased from 90% to 60%)
The study is specifically on my husband's type of CLL that combines Acalabrutinib-Obinutuzuimab Iv and Venetoclax (for a limited duration). The future study is very preliminary and I will share more once I find out the particulars
One must always remember that medical knowledge is constantly evolving as we collectively learn more. There was a time when stomach ulcers couldn’t possibly be caused by a bacterial infection because current dogma dictated bacteria would be unable to survive the high acid environment of the stomach. Then the discovery of H. Pylori. Current thinking is seldom the last word. I too am 11q deleted and unmutated and was diagnosed in 2008. The prognosis isn’t as poor as it once was. I have been managed quite successfully. Good luck. Tony
Although 11q and Unmutated prognostics are considered high risk markers, the less desirable outcomes are more weighted toward the old standard FCR therapy. The newer approved BTK and BCL-2 therapies are providing much more balance in the measures, and many of us are showing responses equal to or better than some in the past with favorable markers having had FCR. In addition, there is more in the research pipeline showing promise.
Take heart, and partner up with a specialist that is up to speed with the latest research data.
I hope you overcome the diverticulitis, as it can be very painful.
Thank you for the encouragement. I am ready to move forward with treatment if it helps resolve the gut issues that I believe related to CLL lymph tissue causing inflammation. It is the gut issue that keep me distracted and focused on my health as these functions can consume your time and attention. Thankfully, I've been able to continue to get out and walk 4-6 miles per day for my sanity.
I believe that progressive disease influences allot of quality of life challenges that include G.I. tract, skin, and sinuses. In my case, those challenges did get better after treatment.
I had diverticulitis in first year after diagnose of CLL, before treatment. I took ant-biotic for diverticulitis and cleared infection. After that I started taking Benefibr every day and have not had reoccurrence in over 3 years. I had a colonoscopy,showed 6 diverticulitis, which would not be unusual. Blessing it can be a pain.
Hi Peacethruthestorm - I am also 11q deleted, unmutated, (as well as some other less favorable markers like Notch 1 Positive, Trisomy 12, ATM). I was diagnosed with SLL at age 53 and had 22 months in watch and wait before starting a clinical trial with Acalabrutinib monotherapy. I am in partial remission 5 years in. Treatment commenced due to severe fatigue and lymph nodes in my abdomen the size of a grapefruit, orange and lemon - I call it my citrus basket! I also have diverticulitis (found in a colonoscopy) but am not symptomatic so am untreated for that condition. I got salmonella from the JIF peanut butter recall but otherwise no persistent abdominal issues. I deal with acid reflux and that may change the course of my CLL /SLL treatment at some point due to contraindications with Acalabrutinib and Prilosec (PPI). I agree that treating the CLL/SLL might be the answer for you rather than treating the diverticulitis. Wishing you well and wanted to let you know my experience as we have similar profiles. All the best to you.
Very important to listen to all the above advice I think. My bowel symptoms were weird. I had pancreatitis, then 4 years of every investigation under the sun for horrendous diarrhoea & abdominal pain. It was terrible after eating. All was attributed to post pancreatitis. Raised white cells and crp were continually said to be reactive. It was only when I saw colorectal surgeons for a colonoscopy that I was diagnosed with CLL. They had to cancel my colonoscopy, and I just had a sigmoidoscopy, because they were worried I might have a diverticular abscess, or a lymphoproliferative disorder. An MRI scan confirmed enlarged lymph nodes &spleen, and a haematologist then confirmed.
We now have 5 people in family who have had CLL, and coeliac disease is also very common, including my brother and his daughter. I had had traditional antibodies blood tests done for coeliac, which were negative in the years before.
The low fibre diet before and after the planned colonoscopy (things like pasta and white bread, which I never eat) made me very very ill. I decided to try cutting out gluten in case I too had coeliac. I didn’t want an extra potential source of inflammation now I had been told I had CLL. My brother told me to persist for 6 weeks before deciding if there was a response. At 6 weeks all my bowel symptoms disappeared. It was like a miracle! I now find that even a tiny bit of exposure to gluten gives me diarrhoea and abdominal pain within an hour.
I discussed it with my drs, that I didn’t want to go back on gluten just to be retested. They said I was wise to stay off gluten.
It is known that someone with low IgA can fail traditional antibody tests for gluten. At the time of testing I had a normal level of IgA but was it was low shortly after CLL diagnosis, and I feel it probably wasn’t working well anyway.
I now get bowel discomfort from a large spleen but gluten exacerbated all my symptoms, and I am still so so much better.
I tried stopping gluten just to see if I improved. This is not relevant to lots of people but people with CLL and low IgA will not show up positive to normal coeliac blood tests. Endoscopy would still show up positive if someone was coeliac, and on gluten with CLL.
I am also 11q deleted, unmutated, (as well as some other less favorable markers like Notch 1 Positive, Trisomy 12, and ATM). I have had two bouts of Diverticulitis treated with antibiotics two months before I started on O and V. I completed treatment on March of 2022 successfully and am now UMRD. I still have stomach issues but they have improved somewhat since I completed Venetoclax. I had a bout of diverticulitis over four years ago before I was diagnosed with CLL. I have had diverticulosis for several years.
Hi peace thruthestorm lady, I didn't see all the replies as I just looked at last nights health unlocked email until I sent you my reply. The one thing I can tell you is that I had other physical issues-severe sciatic pain for almost a year that went away once I started O and V treatment. Some other minor issues as well. The post from Analeese should be very encouraging. Stay strong!
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I also have diverticulitis (found in a colonoscopy) but am not symptomatic so am untreated for that condition. I got salmonella from the JIF peanut butter recall but otherwise no persistent abdominal issues. I deal with acid reflux and that may change the course of my CLL /SLL treatment at some point due to contraindications with Acalabrutinib and Prilosec (PPI). I agree that treating the CLL/SLL might be the answer for you rather than treating the diverticulitis. Wishing you well and wanted to let you know my experience as we have similar profiles. All the best to you. 
Are there possibilities other than stem cell transplant in Canada for CLL with 11Q deletion?
SF3B1 Mutations
13Q Deletion and ATM Mutation 
Prognostic markers and the future. Genetic testing.
