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CLL Support Association
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Due to start treatment but confused!!!

I am due to start treatment soon and have all the right markers for FCR. Would it be better to go into the Flair trial? This whole chemo thing scares me. If I was chosen for the Ibrutinib and it stopped working would I still be able to have chemo?

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I had the same choices this past summer. Definitely have to have chemo before Ibrutinib. If you try Ibrutinib first, the chemo usually does not work. I got my port, had 3 rounds of FCR. Felt fine...went well and reached remission. Did not need all 6. Got tested after the 3rd. Was a little tired and some appetite loss but other than that...did great. I had the Rituxin split between 2 days. If you can't then it must be done slowly over 5-7 hours.

I am 13q mutated. Just got port out...7 months remission. I didn't want to take a pill the rest of my life when I had this chance. I was 63. 65 and older they don't recommend FCR. I got second opinions.

Do you live in USA? 💕

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Thank you for your response. I live in the UK. No, I don’t really want to take pills for the rest of my life and by what I’m reading, these drugs seem to have a lot of side effects. I’m 57 and other than CLL am fit and healthy. My daughters said I should just have the chemo and be fine with it hopefully for a long time. It sounds like you tolerated chemo very well.

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I do not know what you should do. I will say as you get older most of us are taking one pill or another for something. besides my imbruvica i take 3 other pills for unrelated stuff

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Hi I am on the Flair trial. I drew the Ibruitinib and rituximab arm. I am doing really well. Yes there are side effects but mine are intermittent and manageable.

After a second opinion (which I would recommend to anyone trying to make this choice) I opted for Flair and let chance decide for me.

I felt I had nothing to loose going for Flair as the only other option for me was chemo, one arm of the trial. Medically, any of the arms were suitable for me at that point in time.

I also wanted to contribute to research. What ever arm of Flair you get it aids research into our condition in a way standard treatment does not.

The care I receive on the trial has been excellent another good reason for going on trial in my view.

On trial I am also followed up for life which makes me feel better, rightly or wrongly, in the long term. I feel this is important to me given the uncertainty of CLL and the political and economic climate we are in.

I wish you well which ever way you go.

Ann

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Thank you for your reply. Up until a few weeks ago I was all for the trial but as very little is known about the long term remission, it makes me very sceptical regarding the non-chemo arms. I am currently under the care of The royal mardsden in London and the CLL specialist that I see said it’s up to me but the long term remission, 20 years plus for a lot of people with my markers has made me think that maybe FCR is the best treatment for me.

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Completing Cycle 6 of FCR next week and I am already in remission. Side effects very from person to person but mine are brain fog and muscle ache's are the most common for me so far. I do get hives from time to time also. No one really knows how long the remission will last but I choose FCR too because of 6 months of therapy may buy me years of remission without seeing the infusion people for a long time. I didn't want to do years of treatment that some of the other treatments required either. Oh my age is 53.

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I’m like you, don’t want treatment for the rest of my life. I think, as you said with good markers this can more or less cure us. I will speak to my doctor on my next appointment but I think like you I’m a good candidate for FCR, it just scares me 😟

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Update... Completed Cycle 6 of FCR last Friday in CR. I was offered Rituxan by itself once every 8-10 weeks for the next two years as maintenance. The Doc claims it can increase CR by many years. I have issues. Here I thought I was finally done now I have to decide to take a half day off work every 8-10 weeks and get Rituxan for the next two years or take my chances that the FCR will last a long time. Not sure what to do. Is maintenance therapy common?

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Good to hear you have finished your treatment. I wasn’t aware that you would have to continue treatment for another 2 years, thought once you’d done your 6 cycles, that would be it. Probably worth investigating further before you agree to it.

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If you were chosen for Ibrutinib and it stopped working... I don't think you would go to chemo from there. That does not seem to be the pattern anywhere. But there are other new drugs you can move forward to. E.g., Venetoclax. That's the drug that I (in BC Canada) have been told will be my next recourse if ibrutinib no longer works for me. Have been on ibrutinib 18 months and am not having any side effects.

best to you and the decision you face,

kim

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Racing,

I am similar to Kim, and 14 months on Ibrutinib with negligible side effects.

Second line treatment for me as I originally had Chlorambucil back in 2007. In some ways I am glad there was little choice back then and I didn’t have to make a decision on treatment.

Been hanging around for 12 years now.

Colette

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Yes, I agree. I would rather of been told this is the treatment and got on with it. Having a choice makes it so much harder. I think I have over researched every option and am back to square one 🤦‍♀️

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Yes you can’t undo now ! I used to subscribe to the ‘ignorance is bliss ‘ school of thinking, but now I am second line I thought I had better know a little more and read my blood tests.

I am at Kings and the Marsden is very good so I would be inclined to ask your Consultant for guidance.

Wishing you well for next month.

Colette

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Thank you. I have another appointment on the 15th to check my bloods so I will speak to the doctor again.

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Hi Racing1961,

Good genetics is good genetics and whatever treatment you choose you will probably do better than most other people but there is no way of knowing for certain, that's the whole point of the FLAIR trial.

FCR brings with it the additional concerns of bone marrow damage and possible myelodysplasia and leukaemia in years to come - something I was very keen to avoid. I drew Ibrutinib in the FLAIR trial and it doesn't bother me taking the pills every day, I find it reassuring. Nothing is without side effects but the Ibruitinb side effects diminish over time and are manageable. If you drew Ibrutinib there is an 80% chance of you being progression free at 7 years.

Whatever you choose I wish you well and a very long remission

Jackie

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Thank you. I know that chemo is a harsh treatment but do we know the long term effects of the non-chemo treatments? I will probably go with the trial and what will be will be. Thank you again for your help 😊

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The truth is we do not know what is the best sequence to treatment in the really long term.

That uncertainty is what led me to volunteer for FLAIR. I got given FCR (completed this month) and it seems so far to be working really well for me (even tho I’m unmutated).

We in the uk are fortunate that the NHS will now fund Ibrutinib or venetoclax second and third line for everyone rather than repeating FCR again and again until it stops working.

All the arms of the FLAIR trial have a high likelihood of causing at least some response in the vast majority of people who take them. It’s possible to create a pro and con list for both FCR and Ibrutinib. I know coz I did so when I was thinking about what I should do (click my name and look at my old posts if you are interested in seeing how not was thinking at the same phase you are currently).

The UK will now fund venetoclax and rituximab as a second line option so if you drew Ibrutinib in flair that might be an option down the line if you needed an alternative.

Ask your consultant your question about whether second line chemo after Ibrutinib is an option. As I understand it there is little evidence base either way so I’m not sure why another commentator said it was definitely not an option.

We are also blessed that lots of other treatments are being trialed at the moment. So by the time our first treatment whatever it is requires replacement (which in some cases may be many many years or even potentially never) we will probably find a very different y landscape with new options available.

Remember a clinical trial is not for everyone and the choice is yours. Nobody will mind if you decide to just go for FCR as you mentioned as a possiblity.

If you decide to go for the trial, you will need to try and embrace whichever arm you get given, and take the rough with the smooth. And remind yourself that even just a relatively few years ago FCR wasn’t even available. We are grateful to those who have volunteered for trials in the past.

For me personally I am happy to have been able to volunteer for a trial now, knowing that I have had an equal chance of getting what will turn out to be the best treatment for me, that rescue options are available if and when I need them, that the availability of all these treatments have been shown to extend the average lifespan of people with CLL, and that they

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Hugs and best to you.

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We are also in the UK, and my husband had FCR 3yrs ago and is in remission. He did have a couple of infections but nothing major, in fact, he tolerated it chemo very well. I do think being on the flair trial was good for him.

Jenny uk

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Thank you. I am thinking the Flair Trial would be best. Just have to wait and see what I get.

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What is your age? Are you fit? Any other medical problems?

These are important factors for FCR. FCR effects are unpredictable.

It remains the only treatment about which a lot is known. The new stuff is coming on line, but the data just does not yet support use as 1st line in all cases, in UK. Hence the FLAIR Trial.

2nd opinion may help. I saw Prof Hillmen in Leeds. Excellent.

For what it's worth, I had the same dilemma 12 mths ago. Saw Prof Hillmen, went FCR. It was brilliant for me. Aged 62. Otherwise fit strong and well.

Now I have venesection for Iron overload, lost 25% blood in 14 days (2 pints) my chemo hammered marrow is keeping up it seems... at 5th month since stopping FCR.

It's hard navigating thru the choices. The right choice for you may not be obvious. It's worth remembering that with FCR HOW we manage ourselves and the infection risk during FCR is very important. Infection / sepsis is a big issue. I was brutal in my self care... given I do understand infections.

If you are looking at yr 1st treatment and have not had a 2nd opinion from a CLL expert... you should!

Keep in touch. Talk to us, share.

Very best wishes, I so do know what you're going thru!

Jig, also UK based.

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Thank you for your response. I am 57 with no other health issues. It’s ironic really, I work in the gambling industry and this is probably the biggest gamble I will undertake. The Riyal Marsden is my second opinion and I am very happy with the CLL specialist I see. I will speak to him again when I go on the 15th April. With the problems you have had with FCR do you think you would have made a different choice in hindsight?

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Hi! Perhaps uv misunderstood me.

I had no problem with FCR! The immunity issues are normal, neutropenia and infection risk is part of the deal. I felt well on FCR. Apart for some transient nausea. I felt that well, in fact, during 4th cycle I was cycling big hills! All my lymph nodes, spleen and lymphocyte counts went to normal in 14 days. It was incredible. A deliverance from CLL. A gift of life.

My iron over load now is unrelated incidental issue. I mention it cos FCR hammers the marrow... marrow failure is a rare side effect risk. I am simply saying in my case it is regenerating my blood, which a relief to learn, after FCR, venesection being the treatment for iron overload.

25% approx will have a 'easy' time with FCR. 20% will stop due side effects and poor tolerability.

I worked hard on my fitness during FCR. At home. Static cycling, rowing, some resistance work. At the beginning FCR pedalling 5 mins at 20% effort, by the end 30 mins at 90%. I got fitter during chemo. It was my choice. Not for everyone. I put on 10kg. Steroids and my appetite increased, paradoxically. LoL

The other thing was I did not need to work being retired. That was good for me. I know many of us CLL warriors need to work thru chemotherapy. That's tough. Raises the infection risk.

So... yes in retrospect I made the right choice with FCR. I have the other drugs for future need.

In the end my decision was not entirely rational, I just FELT it was the way for me. It happened late in the process. I had delayed treatment by 5 months due to my procrastination.

Marsden is a top hosp!!

Very best wishes

Jig.

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Sorry, I misunderstood your first post. As I can’t really decide, I will probably take the Flair trial and see what I get. I do work full time but if I get the chemo arm of the trial I will take six months off. As you say, the risk of infection is the biggest concern with FCR. I do like the idea of getting it out the way and hopefully putting it behind me. Thank you for your help 😊

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Hello

In my experience (FCR April to September 2018) the "6 months and done" is not realistic. A couple of my monthly infusions were delayed by a week or two because of insufficient recovery in my blood. If I recall correctly, my neutrophils were too low. So the treatment is 6 months plus..

Secondly, it takes time to recover once the treatment is finished, unless you are in the 25% who have an easy time of it. In my case, I suffered from fatigue, my hemoglobin levels dropped so much (80) I needed a blood transfusion, and I had a cold/cough that lasted 4 months. It took three months before I was ready to return to work starting 2 days a week in early January. I was back to full time in the second week of March.

For context, I am 63, no commodities and as an amateur athlete, was in good shape prior to treatment. At this writing, I can manage the work day without any problems but I have to be careful regarding the amount and intensity of exercise.

This is not to argue against FCR, it's about adjusting expectations and life planning. I will judge the success of FCR by whether the length of the remission was worth the investment of time, energy and discomfort required by the treatment. I figure 5 years at a minimum.

Raymond

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Thank you for sharing your experience with FCR. 25% is quite low. I feel whatever path I chose isn’t going to be easy. Although my bloods say otherwise, I feel absolutely fine. Wondering if I should put a hold on treatment if I can.

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Hi there

I had the same dilemma. Have all the «good markers » and needed treatment. Living in the US and had a long discussion with my CLL specialist who is a leading expert over here. She recommended FCR pointing out that we have long term data of a possible cure with patients who are mutated (50% long term remission without récurrence over 10years). This sounds very enticing but I was mostly worried about long term side effects including secondary malignancies. I opted for a clinical trial instead (acalabrutinib, obinutuzemab, venetoclax). I asked her if this is unreasonable and if I could get FCR later if this does not work. She said that it is not unreasonable and that we could try FCR later telling me that she had patients doing that. I think the trend is clearly away from FCR but we do have good long term data in patients with good markers who are mutated. This long term data is still lacking with the newer targeted medications. Time will tell and there are a lot of trials ongoing right now.

All the best

Heiko

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Here is an excellent website for clinical trials in the UK. There are a number of newer trials you might qualify for...

ukctg.nihr.ac.uk/trials?que...

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Thank you for your help. The hospital I go to seem to be attached to the Flair trial but I’ll mention these others when I next attend.

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