Hi. I am new to this group, and newly diagnosed. My CLL was a blaring red flag since 2017 and went undiagnosed until now (another story).........
But, I have read a few posts on this forum that recommended seeing a Hematologist that specializes in CLL, and I can't Thank you enough!
While awaiting the results of my FISH and Flow Cyt to be explained to me, I started reading to make myself literate about CLL. I could see the results of my tests online, and basically interpreted them myself. I had over a week, as the Hematologist was on vacay.
It turns out that I was correct in my interpretation. I have Unmutated CLL with no deletions. From my understanding, unmutated CLL can sometimes mean shorter time to treatment, and that some therapies are not as effective. I also understand that the gap between mutated and unmutated CLL are narrowing due to novel therapies, etc. I have read the posts of the real people in this thread with unmutated CLL.
Well, my Hematologist finally called me today to explain my results. He confirmed my unmutated CLL, with no deletions. But, then he went on to tell me that this is extremely rare, and that most of the time, the unmutated CLL will just go away on it's own. He never mentioned that I should have 2 pneumonia shots because my immune system in compromised, etc.
Basically, everything he told me was the complete opposite of everything I have read in Medical Journals, and everything I have read on this Forum from actual people with Unmutated CLL. (insert eye popping emoji).
I am waiting for my appointment with a Leukemia specialist next week. Wish me luck!
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Tracibfine
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I hope you will share with us your experience with the CLL specialist. I am glad you are taking proactive action to have a Dr. you can partner with to take care of your health.
Tracibfine, I know what you are going through. I've been down similar paths. Feeling puzzled at several stages of my initial medical care, I started reading online and found Healthunlocked. I too am unmutated but never knew until I persisted and found my present specialist in non Hodgkin Lymphoma and CLL !!!! Good for you, that you have persisted and I truly wish you everything good as you deserve it.
From what I've learnt about the US, it seems easier to persist in moving on to better doctors than in some other countries, but it still must take a lot of determination, work and soul searching. My Specialist put me on Ibrutinib over 4 years ago and about 2 months ago switched me to Acalabrutinib which has less side effects .. here I was not able to get the Acalabrutinib until 2months ago but its been available in the States for some time.
You'll know that you are absolutely correct in all you've said about your unmutated status not being the issue it might have been a few years ago. I had a good laugh about your Haematologist's view on the matter. Amazing!!!
I hope you like the Specialist you are waiting to see. I liked mine straight off. What a relief it was to hand my case over to someone who was obviously an expert in this illness. Good, good luck. I'm sure you have chosen carefully so doubt you'll be disappointed.
Hi Traci! Let me give you an imperfect analogy that may help a tiny bit. Compare needing to treat CLL as deciding whether or not to get a new car because of engine failure..... Assume you need the car to do things important to you in your life. There are a lot of factors than may or may not contribute to you ever needing a new car (need to treat). Some people get cars that a lot of things go wrong with, and need to replace (get treatment) sooner. Some things other than the engine (hematological system) like the radiator (kidneys) can develop problems that may or may not affect the engine. Sometimes one thing goes so radically wrong, a replacement part (treatment) is needed. But some cars seem to cruise along, over 150,000 miles, and are still running. Long running problems in any system may indicate a replacement (treatment) is needed.
So it isn't whether you are mutated or unmutated. It's not any specific deletion. It's more about if and how a number of factors change over time, and how quickly that change happens. This is not just in your blood parameters, but how your body overall (kidneys, liver, lungs, heart, skin) are faring and how treatments may affect them while clearing out the CLL. And with the new research coming out, "old" data represents thinking of 10 years previous, if not even earlier. Newer treatments, and decisions by CLL specialists, are becoming more and more patient specific. There are guidelines regarding "what others are doing" but since our numbers are small compared to other cancers like breast, colon, and lung, we don't have extensive experience with the newer treatments.
The CLL specialist is likely to have the best available information regarding how likely an unmutated, no deletion, CLL diagnosed patient fares overall compared to a local hem-onc. But I can easily believe an unmutated, no FISH deletion patient has an immune system technically dysfunctional enough to get classified as "Chronic (not likely to cure) Lymphocytic (where it is) Leukemia (abnormal growth and development of lymphocyte cells)", and may not affect one's body enough to ever need treatment. If you don't have or develop a lot of symptoms that negatively impact your quality of life, if your bloodwork (platelets, red cell parameters, neutrophils, etc.) is relatively normal or at least stable enough to not need treatment, you may indeed never need treatment. Just caution, as an immune compromised person.
I understand your frustration when getting outdated and possible erroneous information from a doctor but this really highlights the importance of being on top of our own situations .... Much easier said than done!When we are not well it feels good to have a doctor who we trust making all the suggestions but even then we still must be aware and ask questions... That’s another reason that this site is so special .... Keeping us aware and updated so that we can communicate with our doctors and be a partner in our treatment plan ..,
There is tons of confusing data around the prognostic markers, and every few months another research paper suggests a new method to rank CLL patients using a different combination of FISH, Next Gen Sequencing and CD markers.
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Some days it seems like using prognostic markers is similar to a long range weather forecast for next month. And most are using statistics that apply ONLY to a large group of people, but never to only one person. Remember Disraeli: en.wikipedia.org/wiki/Lies,...
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According to the CLL expert researchers using Next Gen Sequencing in the last 5 years, there are over 200 genetic changes (mutations) that have been found in CLL cancer cells. The standard FISH test looks for only 4 of them, 13q, Tri 12, 11q and 17p. Those cover around 70% of CLL patients, and the remaing 30% that have different deletions/mutations are described as "Normal" or "Not Found".
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But for most patients, having 13q and Mutated IGHv is the best predictor of a long Watch & Wait before treatment. Patients with 17p and UnMutated IGHv usually have a much shorter time between treatments, and don't respond well to Chemo treatments. "Normal" falls in between those extremes. See:
The deletions can change over time, so testing just before treatment is highly recommended see: cllsociety.org/cll-101/test...
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The only test that is thought NOT to change over time is the IGHv test, where unlike most other test results, having MUTATED IGHv is good, being UnMutated on that specific test is not as good. But this often gets confused with all the other deletions and mutations.
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All these statistics are far less reliable than the actual data that can be collected for one individual patient by observing the "tempo" of that patient's CLL. See this video of Dr. Lamanna discussing how she determines when to treat CLL.
I was diagnosed in late 2020, very early stages in the disease with very low numbers. I thought to be immunocompromised your numbers had to be over a certain level. My hem-onc said I was “like a normal person.” (??). When I asked about vaccines, he seemed unconcerned and said to get them at the age-appropriate time. I’m 63 so 65 for pneumonia vaccine. I guess my question is what makes a person officially immunocompromised? Also vaccinated, so safe to go maskless if not technically immunocompromised??
Your hem-onc is not doing you any favours in telling you that you were “like a normal person.” with regard to your immune system status. CLL specialists recognise that immune compromise actually begins with the precursor stage to CLL, high count Monoclonal B - cell Lymphocytosis (MBL). From Monoclonal B-cell lymphocytosis and early-stage chronic lymphocytic leukemia: diagnosis, natural history, and risk stratification ncbi.nlm.nih.gov/pmc/articl...
"Although individuals with both high-count MBL and CLL Rai stage 0 are at increased risk of infections and second cancers, the risk of progression requiring treatment and the potential to shorten life expectancy are greater for CLL." (my emphasis)
You can get some idea of your degree of immune compromise and whether it is worsening, by checking your immunoglobulin and neutrophil counts and trends, but CLL adversely impacts the immune system in a myriad of ways. Good blood counts don't reflect how well the white blood cells and immunoglobulins actually function! For example, you can have good T cell counts and a healthy CD4:CD8 T cell ratio, but it takes specialised testing to determine how exhausted those T cells are from CLL cell messaging.
Stay safe and take precautions to reduce your infection risk, including getting up to date on your vaccinations healthunlocked.com/cllsuppo... , including having both prevnar and pnemovax pneumonia vaccinations as soon as you can schedule them as recommended for immune compromised folk. Your immunity is not going to improve until (hopefully) some time after you start treatment.
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