I have been following and occasionally writing replies but have not introduced myself. This is a fantastic very supportive group and I am amazed but the helpful and very knowledgeable contributions my so many members.
I was diagnosed in 2014 with a routine blood test at the age of 49 by my PCP. Testing showed a chromosome 13 deletion and that I was muted the same “good markers” my sister in law had. She was on watch and wait for 30 years! In fortunately I developed progressive thrombocytopenia and anemia as well as severe fatigue. I used to do long distance running until beginning 2018 and have a very demanding job but was barely able to climb 2 flights of stairs and slept more than 12 hours a day on the weekends. I am treated at Dana Faber in Boston and was recommended FCR which has a potential cure rate of 50% with my markers. After several discussion with
my hematologist I decided for the phase II trial AVO with acalabrutinib venetoclax and obinutuzemab. I am now cycle 6 with some bumps on the road. Venetoclax load had to be stopped for a week with high LDH phosphate as well as severe thrombocytopenia down to 18k which did not respond to transfusion. Was loaded with high doses of steroids and they are now back to 78k :). Doing well at this point except for occasional black and blue spots on my skin. I was worried about secondary MDS and AML with FCR in the light that I have a 14 year old daughter. I am grateful for the care I am getting and being able to talk to my hematologist who was open for me to start the trial despite her initial recommendation for FCR. The team is truly fantastic and so caring. But did I make the right decision since there is no long term data available on this combination?
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schmitthj007
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Whether you made the right choice at this point is a good question for Nostradamus.
I have no future seeing powers, but in my lay, non-expert opionion, you made a great choice. There is good reason to believe the same category of folks who were cured or given long remissions with FCR will get similar or better results with the combo you are on with less toxicity. Good luck.
You obviously were advised to treat based on the best data available. This strategy increases the probability of success; however being the best strategy, it does not guarantee the expected outcome.
Take another look at the data with your specialists and move forward with the same approach. Increasing new data from clinical trials are showing multiple possibilities for desirable outcomes.
We want to see your PFS observed on the X,Y, look to the right and above the line.
Not sure if it’s the right decision but I had the same fears regarding FCR. I am 43, normal fish and IGVH mutated at 4.06% and FCR was recommended with the caveat that if can cause MDS/AML which is almost always fatal vs single agent Ibrutinib. I chose trial with ibrutinib and obinutuzumab with or without Venetoclax. I haven’t been randomized yet but am scheduled to start May 20. I’m at peace with my decision as is my family as well. Risks of FCR are too high in my mind especially when Ibrutinib has be show to be safer than FCR by the ECOG- E1912 phase 3 trial.
Is it the right decision? Who knows, but I’m happy to have options with the novel therapies.
Scott thanks so much for your input. I think it is so important to have a hematologist who is truly able the listen and take our concerns into account and walk with us. I remember that mine called me before I entered the trial that she is ok with me starting the trial but that she wants me to be aware that the long term data with FCR in my case looks good and we don’t have long term data with the combination of the newer medication. It was a good discussion and I truly feel well taken care of with her and the team always being available. Could not ask for more.
We have made the same decision you did for my husband who has the same markers. There is nothing showing that you can’t use chemo in the future so we are opting for the course that causes the least perm harm. Good luck!
As the others have said, no one can know for sure which is the right decision. However, the video posted today (I think it was today) was really helpful and may give you some comfort. It was called “Novel Treatment Options in CLL” with Dr Furman. If you can’t find the link it shows up in YouTube.
I have a philosophy about decision making: at any given time you make the best decision you can given the circumstances. It may not be the same decision you’d make today but it was the best decision you could make when you made it. Rather than spending energy wondering “what if”, redirect that energy into embracing “here I am; I’m moving forward”.
This is very good to hear Jenny and we mustn’t forget that for some people FCR works spectacularly well. It’s also not always a matter of choice especially in the U.K. or even on trials like Flair.
it is better than FCR because it attacks Cancer cells I was on a similar trial just With Ibrutinib First line Trisomy12 Im cancerfree since January2018
As others have said, it is impossible to know for sure if it was the right or wrong decision. However, you had two very good choices which makes the downside limited. Stay focused on the positives such as your excellent markers, the fact that you are at a world class hospital and the rapid advancements in treatment regiments which should ensure good options down the road should you relapse.
We would have made that choice as well. These new treatments show promise for the future. FCR still works for some patients really well, but it seems most specialists are moving more and more to these new targeted therapies. Best Wishes and keep us posted.
I think you made the best choice that you are comfortable with. I had same choice, only being over 65 they do not treat with FCR. I chose B+R chemo rather than Ibrutinib. My CLL Specialist told me when you do Ibrutinib, you can not do chemo after relapse on Ibrutinib. I watched a webinar on the May 4th featuring Dr. Jan Burger from MD Anderson. (Not sure of spelling on last name). In the nut shell view, doctor said in future most CLL patients will be treated with new novel agents rather than FCR. He did however state that a small group of younger patients will continue to be treated with FCR. FCR still continues to have a very good track record in terms of length of remission. The novel agents do not at this time have historical data that FCR has. Biggest issue with FCR was anemia. I will try to obtain a copy of webinar, was told we could get copies of slides, but don't know about audio.
I'm 62 unmutated at just under 2% but my doctor at Froedtert is recommending FCR because of my otherwise perfect health, (she doesn't know about my bout with Melanoma, (I see here next week)). She tells me the benefits of being off of any treatment for a number of years after. I've thought about this for almost a year and I have to say that the thought of getting off treatment is very attractive to me. I think it's a gamble either way. But after all, life itself is a gamble. Good luck.
I'd strongly encourage you to seek out a specialist opinion prior to starting treatment even just using the CLL Society's online program if there isn't one near you. There is a vast amt of data showing why specialists are not using FCR for unmutated patients (in the USA where alternate options exist). healthunlocked.com/cllsuppo...
Thanks for the link. I've never ran into a lecture with that much information about the difference between treatment effects on mutated verses unmutated. I will definitely bring this up next week at my appointment.
If you do one of the combination trials they can also be time limited. I concur with Mideterm that you should get an opinion from a CLL expert at a major research/teaching hospital as options are changing fast.
I am unmutated also and was given BR chemo first line when I didn’t know any better. If I could go back in time I would have gone to a major research hospital and looked at trials. Yes, FCR can potentially work for an unmutated person but why not consider all of your options? Please get educated by an expert before making a decision.
In my opinion, any US based oncologist/hematologist who doesn’t refer a patient with CLL to a CLL expert is not working in his/herbest interest. There is nothing wrong with a doctor saying I don’t have the expertise to properly evaluate treatment options for you since options are changing too fast for me to keep pace.
Thanks all of you. I consider doctors consultants. I believe your input has changed my course. I'm only 3 hours from Chicago and 4 hours from the Mayo Clinic. I think I'll look into other possibilities.
Acalabrutinib+Venetoclax+Obinutuzumab is potentially a powerful cocktail against CLL, but little or nothing is known about its effectiveness, as indicated by the fact that your clinical trial started recently.
What is known, is that Ibrutinib (similar to acalabrutinib) with or without rituximab (perhaps obinutuzumab) is better than FCR in IGVHC unmutated patients, and about as effective in mutated ones. However, the AE of FCR are worse.
I think you are receiving what is possibly the best treatment available, as it seems that the combination of acalabrutinib (ibrutinib) with venetoclax leads to negative minimum residual disease, which does not mean cure (yet). Whether or not obinutuzumab will help is another matter, as there is some conjecture that BTK inhibitors may also inhibit the anti-CD20 action of rituximab or perhaps obinutuzumab.
Good choice. My markers are high risk, but when first diagnosed, FCR was recommended by both my diagnosing onc and the second opinion. I was uneducated at the time. But later learned that ibrutinib was only two years away from approval and still in trials. If I had been as well informed as you are I would have jumped at those trials. You are smart to consider a clinical trial right up there with approved treatments. In fact, it’s more cutting edge and the care is superb, much more that one can reasonably expect from a community oncologist. I am now in a clinical trial. This by no means an “experiment” in the sense of great risk. The science at this point is too remarkably precise to pose significant risk, IMHO. Good journey ahead for you, fellow traveler.
Thanks so much Bud. I was lucky that this trial was offered and available at the time I needed treatment. I read a lot and some experts believe that clinical trials might be a great option in a very rapidly treating landscape. I am so grateful for that and for my outstanding treatment team. Wish you all the best
While I don't have an opinion on your question I would like to add that Dana Farber is a great resource of knowledge for CLL patients so I'd think you are in very good hands there.
My local oncologist in VA is not a CLL specialist but I did visit Dana Farber for a second opinion two years ago. I saw Dr Jennifer Brown and her associate Dr Ben Lampson, the extra bloodwork tests they gave me were very revealing and the follow up on the results was within 6 hours. My doctor easily accepted their recommendation to add Ibrutinib to the B/R chemo and my results have been very good. I still send Dr Lampson my bloodwork results and he will respond to any questions I have even thought I'm not a current patient.
Dr. Jennifer Brown is one of the brightest minds in CLL. Her educational background is beyond impressive: BS & MS in molecular biophysics and bio Chemistry summa cum laude from Yale. And an MD and PHD in in molecular genetics from Harvard. I'm usually not impressed by degrees but to attain that educational background there is no doubt she is brilliant. Plus she has over 20-years as a researcher in CLL with 150 published articles. She isn't my doctor at Dana Farber but I am comforted and thankful that she is leading Dana Farber's research efforts.
Could not agree more. She is fantastic, upfront and so knowledgeable. My local hematologist referred me to her after the first visit to be plugged in a few years back. She watched me like a hawk during my venetoclax load which was done as outpatient and called me with results and instructions later at night when I was back at my hotel. I cannot say enough good things about her!!!
Hi, thank you for your post and the question. I’m newly diagnosed this year with similar markers as yours and would like to follow you, so I know what decision to make when it’s time to make it. Please keep us updated.
Glad to read that you’re running again and your fatigue is gone. Best wishes for a complete recovery!
Hopefully you won’t need treatment anytime soon and when you do even more treatment options will be available. Will keep you posted and update my profile accordingly. Next big day will be June 18 with restaging (bone marrow, blood work and CT) after cycles 7 is completed. All the best to you
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ASH 2018: ECOG trial shows superiority of Ibrutinib and rituximab over FCR
Flair Trial - FCR first dose
Severe reaction to FCR
