This is a wonderful community and I thank everyone who responded to my previos post with an opinion or just a message of support.
I have the opportunity to participate in a trial that combines ibrutinib with FCR for 6 months and after that ends i would continue to take the ibrutinib for 2 years. I’m a good candidate for FCR aline so could either do that at the excellent small hospital near my home and with my hemotologist or go for the trial at the famous cancer research hospital in the city. I feel fine - have no symptoms that affect my life but the tests show my bone marrow is intensely infiltrated. The trial sounds like a no-brainer in terms of the potential to lengthen remission and it also seems that blood counts dont go as low on the i + FCR as they do on just the FCR. However I love my local hospital and its small enough to be very efficient and personal as well as excellent for medical care. At the famous cancer research center I went today and although it is extremely impressive and nice, there were just a huge number of people being served in all areas I was in. It runs like a well-oiled machine but I’m worried I’ll just be a number there. Also although I know inbrutinub is a great drug, I worry that taking 4 drugs rather than 3 increases the possible effects and that because it is fairly new and the trial is small and only underway a couple years, stuff that happens wont be as easily diagnosible and treated as the plain old FCR, which has been around gor a while. Would love to hear people’s thoughts as I have to make this decision within the week!
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Haesl
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Hi Haesl, this is a tough decision but throughout your post I could sense a greater sense of ease and comfort from you about receiving FCR in your local hospital with a haematological team you clearly trust. That psychological aspect of care cannot be underestimated at a time when we feel most vulnerable.
I’d be asking if my chromosomal profile made me a good candidate for FCR alone and asking more questions about the benefit of the combined trial. I suspect you’ve already considered the usual concerns around FCR but also taken into account the possible side effects of Ibrutinib.
Ibrutinib is a great drug and would probably be available if and when the FCR remission ended. Trials give the opportunity for fantastic oversight however but clearly you simply felt like a number at the Cancer Centre and it sounds like it would involve much more additional travelling for you.
Sometimes we have to go with our instincts once we know the full implications of the choices. In your situation I’d need to be convinced that the trial choice was going to offer immense benefits over the FCR to make me choose it. I know others will disagree however.
Wishing you the very best for whatever treatment you choose.
Thanks so much for your response; it was very helpful. I still have nor decided as there are pros and cons to both, but I am glad to hear your support of my feelings about the hospital environments as my husband has a hard time understanding the importance of that aspect to me and I started to judge myself as a bit silly for feeling that’s important.
Hi Haesl. One other thing to consider with trials is that you don't necessarily have any say in what monitoring methods are used throughout the trial and how frequently they are used, whereas when you work in a clinical setting with your own doctor you do. CLL trials often involve multiple CT scans, for example, sometimes at 3-month intervals. I am a person who has so far in my life refused all CT scans (and with no harm to my health care as a result). I would not be able to do this if I were a trial participant. Some trials do allow some flexibility - e.g., an MRI instead of CT scan. You can always ask in advance what monitoring methods will be used in the trial.
Hi Haesl- I totally understand the local versus cancer center care. For various reasons, the CLL disease was behaving very aggressive towards me during the diagnosis. I had the choice to be treated locally versus the high profile Oregon Health Sciences University (OHSU). I chose the local services because at OHSU it was a well oiled machine. During my FCR treatment I developed relationships with the staff. Now that I'm in relapse and go back each month the staff know me and they are very sensitive to my needs and make me feel a valued person. This would never happen at the OHSU well oiled machine.
Indeed, that is my suspicion as well. Since Ive been going to the same hematoligist fir several years in the small hospital her staff all know me, greet me by name, we chat while they take the blood, etc. I’m a very social person so having to stay away from my students, my gym, meditation center, museums, etc to avoid infection I’m afraid Im going to get very depressed. My medical team is really enjoyable to visit with so I’m reluctant to give that up under the circumstances.
I opted for the FLAIR trial simply because I thought that if I had a chance of taking Ibrutinib it didn't sound as bad as FCR. Simple as that and probably not that much logic to it. Anyway at the last minute they decided that I couldn't take part in the trial anyway due to having chemo for Hep C 10 years ago.
I'm now on my fourth cycle of FCR and it has been going very well indeed. Before treatment my ALC was 333. A few days after the first cycle ALC went down to 33. Now everything is back in the normal range and as far as I can tell all my swollen lymph nodes have gone back to normal. I have nausea which I must admit is very unpleasant but only lasts for a few days each cycle. The tablets manage that most of the time but I have been caught off guard a few times. I have been feeling fine for the other 3 weeks in between cycles. Maybe not 100% but have managed to keep working 3 days a week with no time off so far. Still cycle to work and gym although not as much as normal. I know I need to take care and try to avoid infection (so far so good) as I'm only just over half way through my treatment. The doctors are really pleased and are saying that maybe 5-7 yrs remission is possible.
Only you can decide which treatment you have and I don't want to influence you either way. I'm sure that both treatments will work well anyway. I just wanted to tell you my story. Hope it helps in some way. Must admit the care I have had at Manchester royal infirmary haematology dept has been wonderful. It has been good to build up good relations with nurses and doctors there.
Thanks so much for your reply; it is helpful and I’m glad to hear youre doing so well. I assumed the gym would be out of bounds due to the risk of infection so I’m hopeful from your post that I might still be able to do that! There are only 2 spots left in the trial so I may have a similar experience to you where I decide to accept the opportunity but then its falls through. If that happems I wouldnt mind as then the decision is nade -
I work with children which is a high risk occupation so I didn't see any point in over worrying about other places. So far so good I haven't been ill.
Also although I was warned that my hair might grow thinner I haven't noticed any changes yet. I am only just over half way through the treatment though. 4 down 2 to go.
Like I said the worst thing is the nausea and fatigue that goes with it. I am very lucky to be able to decide my own work schedule so that I get enough days off each month to recover from chemo. Full time work would have been impossible I'd say without taking some time off. You will need to make some changes but it doesn't have to completely take over your life.
Once again I wish you all the best for your treatment.
FCR vs clinical trial of Ibrutinib and Fludarabine with famous research hospital. this too was my crossroads for CLL/SLL. After touring my regular oncology dept where the FCR would be given, it looked like a assembly line. As the side effects of the FCR were being explained the nurse was handing me a catalog for hair wigs and head wraps saying you WILL loose your hair.... to make a long a story short, I was accepted on the trial of 6mo ibrutinib adding 2 rounds of fludarabine in the 3 & 4th month. Best decision for me. side effects and very very minimal and the couple I did have lasted a couple days in the very beginning. my level of care is amazing. being on a trial, the team is very attentive. I did have a CT and Bone marrow biopsy at the beginning and one will be at the end of the 6 months. the monitoring is for 2 years or longer if the patient chooses to continue. Anything outside of the trial I see my regular oncology dept or PvP. just something to think about ....
hi Kmc383 - thanks for your response - it is very helpful and encouraging to hear you have had a great experience with the trial. May you continue to do well, and thanks again for responding!
As a nurse once told me there are always new trials coming. I skipped a trial once and then hit the jackpot (hopefully )with a trial that combines Imbruvica plus Venetoclax.
It's important to make sure that you are of the correct mutational status to do FCR.
It's important to look at the long-term side effects of any treatment as well .
The CLL society website has a lot of good information
both my doctor and the one at the cancer research center agree that i will need to start treatment within the next few months. I do have the correct mutational status to do well on FCR; thanks for asking about that. Its impossible to know the long-term effects of the Trial protocols since the study only started in 2015. Thats one of my concerns about participating in the Trial- that the long terms effects are still unknown
If you are unmutated it is definitely not good to do FCR or any type of cytotoxic chemotherapy in my opinion. Are there any targeted therapy options available to you?
Thank you Kelly for your response! My choice is between FCR, and FCR + Ibrutinib, so in either case I’ll be getting the FCR. For a person my age and in good health it is still the best proven treatment for longest remission; they are experimenting with what happens when they add the inbrutinib to the mix. I’m glad to ear the Ibrutinib is working well fir you!
I am on the FCR & Ibrtutinib trial you are considering. I've been on it about 2 years. And achieved CR and nearly MRD negativity. Still hoping for that. My side effects have been manageable - with fatigue being the greatest. However, one most always consider prognostic indicators. You need to ask if this is the best course of treatment today for the deepest/longest remission for your particular indicators. I am happy to chat with you one on one.
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