I am 13q mutated. 80% involvement in narrow. Diagnosed in oct 2011, started CVP in June 2012 due to doubling time. Went from 30k to over 60k in less than 6 months. In Nov 2012, I started rituxan. Treatment once every 3 months. First 3 treatments went fine. Then they had to stop because of severe myalgia. Fast forward to today. Numbers are creeping up again. I was 10.1alc in Oct 2018 and yesterday it was 17. Dr said I may need to start treatment because of doubling time. He wsnts another blood draw in a month. That is my only symptom. He is not a cll specialist and didn't even know how to tell if I was mutated or not. My numbers are still relatively low even though they are increasing. Does it seem right to look at treatment when numbers are low and that is my only symptom? And he said I would probably start taking ibrutinib. So my next question is, is ibrutinib typically used for cll with 13q del mutated?
Treatment necessary? : I am 13q mutated. 8... - CLL Support
Treatment necessary?
Hi MyCLLJourney and welcome! 😊
This is one of the clearest cases of where a CLL specialist needs to be consulted. Obviously we don’t know your full circumstances but your specialist sounds very over cautious and keen to treat numbers in the absence of other factors.
You have the best prognostic profile with mutated 13q and chemo is often a good, durable regime but the timing needs to be right. Don’t concern yourself that he didn’t know your IGHV status because many people don’t receive their hyper mutation status and here in the U.K., it’s very difficult to obtain.
Ibrutinib works well across the board but please seek a second opinion before embarking on second line treatment.
You may also wish to restrict your post to the community.
Best wishes,
Newdawn
Hi MyCLLJourney,
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On this page please find the boxes labeled "Related Posts" and "Pinned Posts" there is lots of good information for you.
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The best answer is here: healthunlocked.com/cllsuppo...
In the videos Dr. Lamanna and Dr. Thompson each answer your question.
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We are not certain which country and medical system is yours, but please check out these tips especially item #10 :
healthunlocked.com/cllsuppo...
And then let us know where you live and we can help you find a CLL expert for a 2nd opinion.
Len
Yes, see someone else. My husband would be on his 4th round of FCR now if we hadn’t consulted a specialist. Now we are back to W&W and he won’t be given FCR as he is unmutated. It’s so important to have enough info to know whether treating is at the right time and the right kind of treatment.
I am 13 q mutated. CLL experts said FCR chemo for me. Had treatment this summer . Got a port. 3 cycles and I was in remission. It was uneventful. Did fine. I was under 65 so chemo was first recommendation. Ibrutinib was second. I wanted to be done in 6 months or less. Not a pill for life.
Get second opinion. 💕
Good advice!
What chemo did you get?
I had no traditional chemo. I had targeted drugs Imbruvica plus venetoclax on the captive trial.
Sorry for the slow reply.
Be well,
Hoffy
I'm with Newdawn .. time for a CLL expert. It appears CVP is more often used as a treatment for foliclular lymphoma than CLL and with the addition of Rituxan every four months .. sounds like more treatment better suited for FL. If your IGHV mutation status was done, there should have been mention of which germline you are mutated on. There are a few (VH3.21 being one) where mutated behaves like unmutated. I just mention that so everyone is aware that all "mutated" are not alike and germline of mutation status in general can be informative. Finally and most important .. I cannot believe that a CLL doc would consider an ALC jump from 11 to 17 as doubling unless I am reading something wrong. I had always heard not to start the "doubling" calculation until the ALC reaches 20 or 30. And truly fnally, I'm sure Len's recommended videos are more informative than my post, but just wanted to get in my 2 cents. Wishing you all the best and do share your location so this group can perhaps recommend where you might get a good consult.
Thanks for your response. I thought I saw something previously that the doubling was not considered until it was at a higher number. Your comment about mutation status is interesting. I'll have to look back at my records and do some more research. I know there was something that said my mean time to first treatment would be shorter (and it was) , but after that it would be normal for 13q. In under 65 and live in the usa. Nearest cll specialist is 4 hours away and I work full time. I've told myself when the time comes I would have to switch doctors.
E-Lynn and MyCLLJourney,
CLL management guidelines recommend lymphocyte doubling time be calculated once the lymphocyte count exceeds 30 (thousand), with under 6 months being the point of concern. Specialists would not consider treatment if the patient has no other symptoms and is otherwise we'll.
Neil
Hello MyCLLJourney,
I wish you well with your decisions ahead...
My biggest take-away since being diagnosed last year is how tricky it is to deal with the medical system. Doctors are trained to have answers and to be self-assured. Their answers are usually to prescribe a medication treatment of some sort (without suggesting lifestyle prescriptions like exercise and better general health, even when those are useful). Unfortunately, this is a relatively infrequent diagnosis, and the treatments are changing very rapidly. I would strongly urge that you see a CLL specialist.
A friend with CLL that advanced rapidly had awful experiences with doctors who seemed like they ought to know the best practices, but did not and caused harm instead. These were general oncology people, but not CLL specialists. Studies have been done that have shown that people who see CLL specialists actually have longer life expectancy than those who see generalists.
Given the side effects and given the costs of medicine (at least here in the US), it is my goal to postpone treatment as long as I can. I'm early stage and am without symptoms so far, and I'm taking better care of my health than I ever have and feel better than I ever did. I'm 13q deletion, unmutated, and expect one day I will need medicine, but from what I've learned there's no advantage to starting early, in fact the opposite is true.
Best to you with your journey!
Lynn
I can relate to what you said, nutrition and exercise are so extremely important. I avoid the bad foods and try to get 2 miles of hiking in a day. That hasn't happened the last few days, but with good reason, it's was 35 below this morning. I remember when I went to a class at the oncology clinic relating to getting chemo. They asked if I wanted something to drink. My friend said "you mean like pop (soda)?" And they said yes, or... and mentioned other drinks that are loaded with sugars. My motto has been to stick with single ingredient foods. If you can't pronounce an ingredient, it's probably something you shouldn't be eating!
I hope you can live your life without ever needing treatment!
I hope we both can! Sounds like you know more about healthy lifestyle than most doctors I've crossed paths with. Have you seen Glenn Sabin's book,"N of One"? It's interesting... suggesting we need to find our own paths and tap medical doctors for all that they offer, without expecting them to be expert in an orientation they aren't trained in. He's a proponent of Integrative Medicine, which I experienced very positively at Cleveland Clinic. I hope that catches on in my lifetime.
Here's to our good health!
Good stuff. I am vegan now to hopefully help my on going MRD negative status.
I drink a lot of high quality green tea as well. I like the rishi super match tea by rishi out of Milwaukee. Japanese green tea is very good.
Be well ,
Hoffy
Combo type clinical trials with targeted non chemo therapy appear to be the best option these days.
Check CLLSociety.org for a lot of good information.
Be well,
Hoffy.
Look for a CLL specialist before any decision .... it is very important !!!
I agree with all seeing a CLL specialist is so important. If you are working and the closest is 4 hours away, you might want to check out cllsociety.org/cll-society-... a teleconference service that connects you with a CLL specialist. Hoping this might give you more information on your treatment or no treatment choices.
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