Severe reaction to FCR

[Racing1961]

I posted a while ago regarding treatment options. In the end I chose FCR rather than entering the Flair trial as my markers met with a good outcome from FCR. Well, after one round it has been stopped as I had such a severe reaction to the treatment. 3 hospital stays for neutropenia and 1 hospital stay for such low red blood that I needed 3 blood transfusions. I was wondering if anyone has had the same experience and stayed in remission for a considerable time? My bloods are looking good at the moment but not sure for how long. Feeling really well with no nodes or enlarged spleen as I had before treatment. I am back on watch and wait again, attending regular appointments for blood tests.

[noeagaman]

I had a similar experience, but mine came after round four of FCR. All of my counts dropped like a rock and I could hardly walk. My wife and doctor said that my skin turned grey and I was admitted right away. I spent a week in the hospital getting multiple blood and platelet transfusions and IVIG's. After that I had to go in every other day for about three weeks for the same and then every five days for another month. Now after a year and a half since FCR my counts have not recovered fully. Platelets hovering around 100 and other counts a little below normal. My doctor said that he thinks I was allergic to one of the FCR drugs. I was neutropenic after each round and that got worse each time. I am in remission though so I'm thankful for that. Hopefully you will be in remission for a good amount of time, but I don't know any stats for one round of FCR.

Chris

[Racing1961 in reply to noeagaman]

Thank you for your response. I was the same, could hardly walk and felt very unwell. Didn’t really know if that was how I was supposed to feel, never having had chemo before. After blood transfusions I started to feel so much better. Also had a reaction to the oral antibiotics they gave me and was covered from head to toe in a nasty rash. Really hope this has worked as it appears I’m allergic to almost everything. Glad to hear you are still doing well.

[JigFettler Volunteer]

Hi Racing! I remember responding to your earlier post back along. FCR responses are unpredictable. Much depends on your original pretreatment markers. I know I tried to stop my FCR at round 4, but was persuaded to complete 6 for a more enduring remission - but I was having no reactions to FCR at all... after the first 5 days that is.

As to your question...remission depends on your markers and after 1 round of FCR - I dont know. Hopefully some one out there will respond.

Your experience is valuable - pls do let us know how you go.

Best wishes

Jig

[Racing1961 in reply to JigFettler]

Thank you. I think you are amazing for getting through 6 rounds. I don’t ever want to do that again. I presume that they will at some point give me another BMB to see how well the 1 treatment has worked. I will keep you updated.

[JigFettler Volunteer in reply to Racing1961]

I am hoping the very best for you!

Yes, you need a response check out.

🤞🙏

Jig

[Racing1961 in reply to JigFettler]

Thank you 😊

[JigFettler Volunteer in reply to Racing1961]

Just thinking this thru... I am not sure if you are in the UK, but it would be worthwhile getting a 2nd opinion from a Super Specialist in CLL. Especially if yr seeking info on your response to 1 round of FCR. You are clearly v sensitive to FCR... but to which bit? And can that information influence more treatment, which treatment, if indeed any treatment?

Means some proactive work, ie you pushing your Drs. I know how that works in the UK... if that helps.

Jig

[Racing1961 in reply to JigFettler]

I am already seeing what you call a super specialist in CLL Dr Iyengar at the Royal Marsden in London. They thought I might react more to the ritucimab but was actually ok with that part so it was either the f or c part that was the problem. He said to me last time I went that maybe such a drastic reaction could mean that it has cleared it out but only time will tell.

[bkoffman CLL CURE Hero]

With FCR it's the depth of the remission that matters, not how treatments it took to get there. Brian CLLSociety.org

[Racing1961 in reply to bkoffman]

Thank you. Will they be able to tell from a BMB? My specialist said it is very rare for someone to respond so badly after 1 round so I suppose nobody really knows how well it has worked.

[JigFettler Volunteer in reply to bkoffman]

That's my understanding, but why then was I persuaded that 6 FCR cycles better than 4?

Perhaps depth of remission is different to durability.

I found it so hard to get authoritative feedback on questions like that.

Jig

[Racing1961 in reply to JigFettler]

I suppose when this was first tested, 6 was the magic number. Some people on here though have had 3 or 4 and are still in remission many years later.

[bkoffman CLL CURE Hero in reply to JigFettler]

Some docs believe even in patients who are U-MRD, a deeper remission is better. Other doctors don't read the CLL literature and use a cookbook approach.

[Red49 in reply to bkoffman]

Hi Brian I am located in the Maritimes

In Canada and due to start FCR next week. Let’s say after the third dose I want to get checked for UMRD how long do I have to wait after that third dose but not before the fourth for it to be accurate? Is this done by a BMB? I did mention this to my DR but she said something about 6-8weeks after your final dose.

FCR is frontline here and I am young so not a lot of choices but if I can stop early I want too.

Thanks Brian

[bkoffman CLL CURE Hero in reply to Red49]

I am no expert but I believe the remission deepens over several weeks post FCR, so it would be hard to know the full depth of response before the next cycle is due.

[Red49 in reply to bkoffman]

Thanks Brian for your response. I am going to follow up with my specialist on this as I go forward.

[AussieNeil Administrator in reply to Red49]

It makes sense with FCR that the remission can deepen for a while after the last dose, because Rituximab has a very long half life. In this study bloodjournal.org/content/11... it was determined to be 22 days (range 6.1 to 52 days) and the elimination rate decreased (meaning a longer half life) with more cycles. So with a half life of 22 days, three half lives is close to 2 months (66 days) after which you'd still have 1/8th or 12.5% of the rituximab dose circulating in your blood, mopping up any remaining CLL cells.

Neil

[Red49 in reply to AussieNeil]

Thanks Neil that is certainly food for thought regarding how many cycles. More completed could potentially mean longer remission, that is of course assuming I can tolerate all of them.

[gingerlovesal in reply to bkoffman]

Hi, do you have a good reference on what to experience during FCR cycles—physically and otherwise. Also do you know if the counts are expected to drop to normal values immediately or over time? It’s difficult to find info. Glad you are a Cure Hero. Thanks!

[bkoffman CLL CURE Hero in reply to gingerlovesal]

I am no expert in FCR, but I think that the depth of remission can deepen over a few months both FCR, so often restaging is done 6-12 weeks after the last dose. I doubt it continues to deepen much after that, but ask your doctors.

[Big_Dee]

Hello Racing1961

Good question. I did 6 rounds of B+R with some manageable side effects on rounds 1 & 2. I was in remission after round 1, I wanted to know why I had to do rounds 2 thru 6. I did not get great response, but was encouraged to continue. I was worried about my immunity dropping to much but did nuelasta and it worked out. Only time will tell. Blessings.

[Racing1961 in reply to Big_Dee]

Hi Big_Dee,

Is nuelasta the injections they give you to boost your white blood cells? I had them for a few days and my count went to normal range 5.1. When they stopped it dropped to 3.1 and are still low. As you say, only time will tell. I’ve tried to find information on 1 round of FCR but have had no luck so far. Are you still in remission?

[Big_Dee in reply to Racing1961]

Hello Racing1961

The neulasta did boost my white blood cells and they are bouncing around low normal and seem to be staying 4-6. Yes I am still in remission, but have only finished treatment first week of April, so not much to go on. Blessings.

[Mandy56]

Hi Racing 1961

I too saw Dr Iyengar at The Royal Marsden and started FCR last Year in April. My blood results were not too bad prior to treatment, but my spleen was 25cm and so platelets had dropped to 60. When I read your symptoms, that could have been me. I had 2 blood transfusions, as I was so anaemia and I had the horrible reactions to the antibiotics as well, which they subsequently changed. I was given GCSD to boost my neutrophils as I was neutrophenic. Sound familiar?

However, maybe my bloods improved quite quickly, because they decided to go ahead with more FCR and I had the full 6 rounds, despite being neutrophenic throughout. Neutrophils still not back to normal.

Given they are not suggesting any other sort of treatment, it sounds like you are in a good place and maybe the one dose is all you needed to get remission. I sincerely hope so and wish you good health and good times ahead.

Mandy

[Racing1961 in reply to Mandy56]

Wow, we were definitely in a more or less identical position. I have great faith in Dr Iyengar, very laid back. My bloods are slowly recovering and I presume they will do another BMB at some point to see how well it has worked. To be honest, if they had suggested going ahead with more treatment, I think I would have declined; never felt so ill in my life. Hope you continue to do well x

[Fiona2014]

Presently undertaking same treatment regime. First cycle - experienced extreme nausea (prescribed medications did not address issue). Positive note- enlarged lymph nodes dissipated with rituximab infusion. Cycle 2 - rituximab injection yielded reaction (skin reaction at injection site)- on IV antibiotics for 1 week (temp of 39.2 ); follow up lab work indicated low counts (cycle 3 on hold for 3 weeks). Cycle 3 - Dr. reduced FC component (due to blood levels) and implemented R via infusion. Big time skin reaction (like a full body sun-burn)- Dr. is discontinuing R- contemplating end point of FCR treatment.

While writing this post- sun burn like rash as turned into a tactile rash- very itchy! Will wait for next blood lab results in a couple of weeks (hopeful levels will note some improvement). Most pressing questions- will cycle 3 yield a remission status? Will blood levels improve? Query if other treatment options will elicit same reactions?

As I and other others have noted- regarding CLL and CLL treatment plans - one needs to be prepared for an individualized experience!

[Racing1961 in reply to Fiona2014]

Well done for getting to 3 cycles. You must stand a better chance of remission than I do. Are you allergic to penicillin? My rash was the same as yours, extremely itchy. I ended up with swollen feet and hands as well which took weeks to go. It’s very worrying because the chances are we will react to all the targeting drugs as well.

[Fiona2014 in reply to Racing1961]

Hi, in terms of 3 cycles- "here's hoping". Like you, I am really concerned that targeting drugs will elicit same response. I've been relativity healthy until the CLL diagnosis- since then- I feel that by body is really letting me down

[Racing1961 in reply to Fiona2014]

Same here. Never had any health issues and rarely went to the doctor. The one time I did go, boom 💥 Leukaemia!!!!

Hopefully we will both prove them wrong in that we don’t need 6 cycles and both have a very long remission, fingers crossed xx

[Fiona2014 in reply to Racing1961]

Fingers crossed as well. All the best to you