As some may know, I am 25 years old diagnosed with CLL 11q deletion.
One of my recent consultants has been Dr. Aman at the James Center who works under Dr. Byrd. We had a phone call and he told me, as I've come to expect, that he would treat me with the next 50 years in mind vs. A traditional CLL patient where managing the disease is far less years. This of course has me very worried about my options for treatment.
From my understanding, traditional chemo therapies will not work on my subtype. I've narrowed it down to a few options:
1. One of the newly drugs like Ibrutinib. The problem that I'm finding is that this drug you have to take for the rest of your life, which isn't an option for me since I am so young. Money is definitely a reason, but is there any concerns with taking it long term (toxicity)? I believe there are studies going on to see the long term effects and the possibility of taking patients off it once they reach acceptable MRD. Does anyone have any information about this?
2. Clinical trials. Dr. Aman suggested that it would be worth it to me to go on a clinical trial before I actually need treatment. He said that my first treatment will be the most critical decision in my life, which has me taking most of my energy to think about. I know of ventecolax and acalabrutinib but are there some other drugs in the pipeline that have you all excited? Dr. Aman said he is coming out with a research paper in December that has him very excited, but didn't tell me what drugs would be included.
3. CAR T-Cell or stem cell transplant. These have me very interested because they appear to be our best chance of a "cure" which for someone my age is very appealing. My thought is, is it possible for me to be in a management mode for the next 10 years or so till these therapies are more refined? Is it something worth asking about now? My local oncologist, Dr. Winter, said that she wouldn't consider me for a stem cell transplant, but I assume that's because I haven't had any other treatments and have minor symptoms (just enlarged nodes).
Appreciate any input.
Best,
Nick
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Hi Nick M, I'm interested in long term use of Ibrutinib and any known risks. I'm being told it to soon to know yet. It will be interesting to see what's posted. Thanks for asking the question. Stay well
Thanks for sharing. Husband had 4FCR and now on ibrutinib. Actually FCR seems to got rid of 11q clone. It was not detected on last BM. He started treatment at age of 50 but might have had CLL for 15 years prior. He had many unusual infections and fatigue for last 15 years. His variant is SLL ( no blood abnormalities) only LN and spleen. His DNA indicates "British and Irish" according to 23andme and his father had multiple myeloma in his 80s
I've read that FCR is an option but for some reason my oncologist isn't considering it for myself. I think it's probably because of the other treatment options available I can afford to avoid chemo.
Nick, have you looked at the Related Posts on this site? If you are on computer, the column to the right of your post is 11q posts.
And, if you find a posting you'd like to know the outcome of (some of the posts are years old) you can click on the posters name which will take you to that poster's profile page--not often much profile, but all their posts will be viewable for you to see if they have reported any outcome.
Here's wishing you the best choice of any treatment and a looong remission with as few side effects as possible for your CLL.
CLL researchers are well aware of the challenges of long term drug use to control CLL (e.g. patient adherence, financial burden, side effects developing long term, drug resistance developing) and are actively working on finding combination therapies to achieve long remissions and hopefully a cure. What they are trying to find is a combination where the drugs are synergistic (working better together than the combined individual effect) and where the drugs hit the CLL in different ways, making it very difficult for clonal evolution to throw up a clone that is resistant to both drugs. The Venetoclax/Ibrutinib trial looks quite promising in that regard.
1) You'll find information on long term Ibrutinib usage posted here as the studies are published. I think we've got to about 6 years experience with it now, but that's only from low numbers of the initial clinical trial patients.
2) Acalabrutinib is a better targeted version of Ibrutinib, so there should be less side effects, but you still face the long term treatment issues. Venetoclax/Venclexa looks to get more patients into MRD than other non-chemo drugs and hence there's more likelihood of only having to stay on the drug for a limited time.
You'll get reports of how new drugs are performing in clinical trials regularly posted about to this community.
3) Stem cell transplant is a mature treatment, particularly for young patients. With newer, more effective drugs becoming available, it is less often used now, but you should still consider it, because it does offer the chance of a cure. However there can be long term complications and the graft doesn't always take. It's a procedure that gets more risky as you age, with a 20% risk of death at age 50 (Australian statistics from about 5 years ago). The process is using treatment to knock back the CLL and bone marrow and then perform the graft from a matching donor.
CAR-T is experimental and for now in the 'when all else fails' category. Definitely a technology to monitor and again, you'll find regular posts about it here.
You have time on your side and are living at time when we regularly hear of new and hopefully better drugs becoming available, with each drug offering the promise of a cure, particularly when used in combination with one or more other effective drugs. For now, given your CLL appears to be stable, it's probably wise to keep an eye on developments so that you are in an excellent position to have an informed discussion with your specialist team should you need to start treatment.
Take hope - you have an excellent chance of living into a cure.
Hi Nick. Excellent questions you are posing. One thing I would say about Ibrutinib needing to be taken for the rest of your life... I don't think this will prove to be the case in a few years, although it currently is. Ibrutinib is simply too expensive to keep an increasing number of CLL patients on permanently. It costs the system (govt or private insurers) at least $120,000 per year per patient. Probably more in Canada where I am. There is a lot of pressure to find a way to make Ibrutinib not be lifelong. Moving people from Ibrutinib to Venetoclax, and then off all drugs altogether after Venetoclax delivers its remission to each patient is one thing that is already starting to happen for some patients.
I just started Ibrutinib 2 weeks ago. Like you, my primary reservation about Ibrutinib was the "lifelong" part. That sounded like a really bad idea, given my dislike of taking any pills ever. But the more I am reading about this, the more I realize that the Ibrutinib people will almost certainly be getting off Ibrutinib at some point by some other method that will deliver a true remission.
Thanks Kim. I'm hoping if Ibrutinib becomes an option for me there will be more evidence for taking people off it. Maybe the newer iterations that are coming out.
I think coming off Ibrutinib will always involve adding or switching to a second agent (currently venetoclax), since ibrutinib can't on its own deliver an MRD neg status, and perhaps can't even deliver a complete remission, just partial remission no matter how long it is used. But other new oral agents (like venetoclax right now) can.
I'd like to offer a small correction. Dr. Furman is reporting that a few patients- possibly 20% are able to reach MRD neg & PR (Partial Remission) after 5 years on Ibrutinib, a smaller % are MRD neg & CR (Complete Remission), and have stopped the drug.
Mono Venetoclax has a slightly higher % of MRD neg and CR at 1 year. Combinations of Ibrutinib and Venetoclax are getting much higher % of MRD neg and CR at one year.
Thanks for the correction, Len. I am heartened to know that these remissions are possible on Ibrutinib. I don't understand the phrase 'MRD neg & PR'. Wouldn't MRD neg suggest no detectable CLL is present, whereas partial remission means some is left - maybe 30% even? How can one be both?
The PR usually comes from one or more lymph nodes that don't shrink below 1 cm. Some Doctors feel that the node is empty of CLL cells, but is scarred or permanently stretched and cannot shrink fully back to its original size.
Dr. Furman has recently promoted the idea that the 1 cm or 1.1 cm bench mark is the problem and not the patient's disease state. He feels these should be considered CR and if MRD neg, then treatment should be stopped.
The field of treatment in CLL is advancing rapidly... who knows what will be available in 5 or 10 years, likely about the time you may need to consider treatment.
Hopefully we will have a lifelong control or cure, its not outside the realm of possibility. Watch the new cirmtuzumab (ROR1) and various combinations...
I had a 14 year active surveillance period and things were totally different from diagnosis to treatment, and they have progressed remarkably in the past 5 years...
This is not cranking up the hope machine... it is simply fact...
Hi Nick,. my 64 year old husband, a patient of Dr Byrd, is in a clinical trial that has Dr Aman as PI. The trial is for high risk, unmutated CLL patients treated with ibutrinib early in their desease , instead of w/w. The rationale according to Dr Byrd is that if you start treatment early before the bone marrow is heavily infiltrated with CLL cells you can clean the bone marrow of CLL and thus allow the T cells of the immune system to keep the CLL under control. Dr Byrd says that in his opinion in 5-10 years all unmutated CLL will be treated early, with ibutrinib , only for a few years and then you will be able to stop the ibrutinib.
My husband has been on the trial for one year. Before starting the trial he was going from one infection to another requiring antibiotics very frequently. When he started the trial his bone marrow was about 20% infiltrated with CLL. Since he started ibrutinib he has not needed antibiotics at all. He is expected to stop ibrutinib in one more year at the end of the trial.
Hope this is helpful. We're very pleased with our treatment at OHSU.
lleana, this is very interesting. I didn't speak to Dr. Aman exactly why he would want me to get treatment before I need it, but it would make sense if that's their rationale.
if i was you i would insist on sct!! they didnt do it on my triplet sisters one of the went along with him and is now with god. so i insisted on it for my other two sisters said if i would go to the newspaper so dr did it. under nsh. now they are doing well and now they are watch there other eight sister growing. including two sets of twins (am a twin and love. my sister was young than you.
Hi Nick, you sound as though you're getting to grips with this diagnosis and are taking a proactive response which is great. Your Dr is right that your first treatment will be the most critical decision. I'm going to answer as if I was you and what I would do but this is complicated, with no straightforward answers, so I hope I don't seem all over the place as I answer.
It's early days yet and although you know about the 11q, you don't know how quickly you're going to need this treatment. You haven't given us any details about your results but it will almost certainly be years away yet. You did mention your Dr suggesting a treatment trial before you need treatment. This is tricky as, even in the days of targeted treatments, we have no evidence that earlier treatment gives better outcomes. It can, however have a devastating effect on your wallet. The trial would have to be specifically for people who didn't need treatment as you probably would not qualify, at this stage, for any other trials. Please don't get too excited about what Dr. Aman said and the research paper. Many of us have seen 'wonder drugs' in research papers that never live up to the hype or expectations. Your life is too young and precious to rely on a research drug that is unproven.
In addition to the 11q, you may have other clones of cells that are, as yet, too small to detect. Treatment can sometimes suppress the main clone which may lead to expansion of the small clones which are more resistant to therapy. So early treatment comes with potential pitfalls as well as potential benefits.
Transplant could be an option that may cure you but also leave you with GVHD side effects that make life very, very miserable and can lead to death. You need some GVHD to assist with the eradication of the CLL but it's hard to fine tune it.
There are some new drugs in the pipeline (m1.wyanokecdn.com/2755a7a8d... ) but Ibrutinib and venetoclax in the first line setting are proving to be spectacularly effective and achieving MRD negative responses and treatment can then be stopped. I would not trade these two together for an untested 'new drug' but there may be new, proven better drugs by the time you need them.
In my previous answer to you I suggested you do everything you can to be ready for treatment when the time comes. If you don't know your mutated/unmutated status get that done and I would also have my NOTCH1 status checked as both are informative regarding your long term prognosis. This is an old paper but still useful bloodjournal.org/content/11...
I know this is a scary time but you're doing everything right in learning about CLL and seeing a specialist. Time is on your side at the moment so try to enjoy life and don't let this consume you.
Thanks Jackie. After my first response I had a ton of stuff on my mind I needed to get out. The decision about when to start treatment is definitely the big thing that I am thinking about. I appreciate your response!
Nick, I was diagnosed with 11 q at age 56 but I probably had it for 20 years or more. When it finally took off it did happen quickly. I went on Ibrutinib which really helped. I also took Gazyva which helped more. I have been off Ibrutinib for almost a year due to side effects of Ibrutinib. There is no 11q in my blood right now. All my tests are good except immunoglobulins which are extremely low. When it comes back I will go on Venetoclax. Hopefully there will be something new after that.
That has me thinking of a hypothetical for my doctor. Say I paid no mind to my swollen neck and didn't get this diagnosis. How long would it be before I actually need treatment? What if I can just hold out 10 years from now and see what is available then? Something I've been contemplating.
Quite likely that you (or rather your body) can go 10 years before the CLL progression requires you to do something about it. It's hard to predict the pace. You (and your doctor) will know when you must do something because your quality of life and/or health risks from the progression have reached a certain stage. For some people treatment is triggered by lymph nodes that have become so bulky they are causing pain or pressing on other organs and affecting body functions. For others it can be a dangerously enlarged spleen. For some it is very high sustained lymphocyte count. For some I think even extreme fatigue can be used as a grounds to start treatment. In my case I had none of the above, but I had developed extreme cytopenias (anemia and neutropenia) because my marrow was 95-99% infiltrated at that point. So in theory your progression should be slow enough that you could hold out 10 years until there are even better treatments and possibly a cure. Just keep monitoring your body symptoms, nodes and blood... and enjoy your life.
Hi Nick, If nothing is bothering you you should stay as you are. For me, I did have a swollen neck but that is not why I had to start treatment. My lymphocytes started doubling in a weeks time. My nodes were popping out all over and one in my throat was making it difficult to swallow when lying down. I had fevers every afternoon of about 100 degrees and I was extremely fatigued. After dinner I would start shivering till I got to bed. going on Ibrutinib at that time changed my life. So I think you should get yourself educated about treatments. But I am not sure why you should be scared to death about which to start first. If one doesn't work you could switch to another. I think it is people with 17 del that have the issue with not going on FCR. However, I don't really know for sure. None of us are substitutes for your doctor.
Just wanted to add in. It is such a pain not knowing the path that your life will take. It is hard to make plans because you always wonder if you will end up being sick or continuing on as is. I totally understand that and I still can't get over that feeling after almost 4 years. But this is something that is important to work on. I am getting a little better at trying to live my life with a future in mind. I guess it just takes some time to get over the shock and then the ambiguity of treatments, prognosis etc. God bless you.
It looks like you are doing good prep in understanding CLL and options. I would like to correct one thing, FCR will work on 11Q patients. I am 11Q and was treated in 2012 with FCR. It might not be as effective but it got me 3.5 yrs of remission.
I relapsed late 2016 and am now eight months into Ibrutinib/Venetoclax trial.
best, rob
Hopefully, by the time you get to needing treatment other new more effective drugs will be available.
CART is a gamble that costs $500k for a chance that you are one of the 65% that survive longer than 3 mo. A return of the cancer from cancer stem cells is untreatable and is a rapid disease. Bone marrow transplant survival is much worse, these are both last resort.
B-CLL can be treated with curcumin in vivo (MD Anderson) and green tea polyphenols. My wbc was declining at 1500/ day before chemo with this, which I leaned about from Mayo clinic publications.
Imbrutinib has allowed me to get to normal wbc 3 times with supplemental polyphenol taken in concert. Imbruvica is pricey at $900 per day, so unless you have private insurance (and can get it free). Imbruvica causes side effects for me, quite severe at times, skin lymphoma, basal cell carcinomas, arthralgia, roaming edema (fingers, the bottom of my feet, knee or face) a so I do not follow the advice of the doctor and reduce my dosage according to my symptoms. As far as toxicity, I cannot say that I have read much about statistics. Just know that the average age of the population is above 50yrs for men and is DIET RELATED. But do to the veggie slander law all drs can advise is to eat "healthy". I have changed my diet drastically in the last 5 yrs. The Andrew Weil school of oncology has a nutrition treatment program that treats cancer with diet! I have four out of six markers 17P, Mutated, etc.. that say I should not be around now. I had less than 10% bone marrow not involved 5 yrs ago(May 2012).
There are some good threads on cllforum.com with discussions between trial participants, most of them in combination trials at OSU or UCSD. You might want to check those out and throw your post out there, also. If I were in your position I would probably look for a second opinion from one of the other research centers which has multiple trials running - UCSD, MD Anderson, NIH, and others before committing to early treatment - certainly before committing to a stem cell transplant.
I was diagnosed in 2003. I recently, while decluttering, found my first LLS CLL booklet. As Chris said, treatment has changed a lot, and new approaches are proving to be very successful. In 2003 my doctor thought that there would be a vaccine treatment soon, then everyone was talking about Campath. Along came revlimid and a few other things. The race for approval between Ibrutinib and Idelasib changed things drastically, and the newer combinations look even more promising. There are patients, like Len, now reporting that they have been able to go off of prescriptions that were thought to involve a lifetime commitment.
Take things one step at a time. You don't have to commit to anything right now, so focus on learning about what is in development. You will be in a better position to make a decision if you have a broader knowledge base about what is in trials now and what the different centers are looking at as being the next step. Someone somewhere posted to be careful about "treatment bias" when dealing with the big centers. Not something I had really thought about before, but good advice. You are being seen at one of the leading CLL research facilities, but OSU may end up not being the one which can offer you the best trial for your particular case. You will find a lot of experienced patients here and on the Forum sharing their experiences with the various treatments, both currently approved and in trials, as well as posts about some of the newer research that may make everything happening today old news in the not too distant future.
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Urgent question: low platelets 
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