Am I just unlucky? The start of the FCR went so well, though I was breathless from the first dose of Rituximab. That went worse as time went on and my heart felt like it was labouring. I constantly had palpitations for two weeks and even a blackout
Went to my GP last Monday, who sent me to local hospital for blood tests. Turns out I was dangerously anaemic and neutrophils 0.2. Needless to say I am still in hospital, having antibiotics through drips every day and irradiated blood transfusion last night. Also filgrastin (?) injections each day to boost neutrophils. This is week three though, I should be able to enjoy this week and next week and instead I’m stuck in solitary confinement. Next FCR in 10 days or so, when it’s all downhill again.
Anyone else had this reaction and did it happen every time?
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Mandy56
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I needed blood transfusions from the time I was diagnosed in September 2016 until shortly after I completed my third round of FCR. My hemoglobin was very low at 4.7 when I was diagnosed and for the next four months, it struggled to reach 7 even with transfusions ( 2 units/week for about 2 of those months). By mid January, it started to climb again and I no longer needed the transfusions.
I hope things go well for you. It's tough to be in the middle of treatment.
Ugh I’ve been in solitary confinement since January with little contact with humans lol I have neutropenia for 5 months - this is frustrating and shitty but part of the process- this is a means to an end and hoping and praying for all - seriously read positive affirmations and watch funny tv and don’t feed into the negativity your brain is sending you - trust me I have some horrible moments of self pity but things could always be worse and if we put all out problems in a pile I would still take mine back- truly wishing you better days ahead xoxo I know the hell on earth you are experiencing right night
Thanks darlin no more FCR for me it was too detrimental on my marrow so when I get normal blood again and figure out the autoimmune part will hopefully start a newer type of chemo and immunotherapy.... hang in there we are all warriors and so much tougher than we think even mentally after a breakdown which we are entitled to we get back up to fight another day!! I highly recommend grace and Frankie on Netflix it really brightened my days lol
Sounds like we are in the same boat. I only got 2/6 if FCR and had to stop and start on prednisone for autoimmune hemolytic anemia and after a month of bone marrow rest I am starting back with just rituximab.
Ugh I’m sorry ! I’m happy to not receive the FCR but being so called neutropenic is messing w my social life lol I am also told I have polymyalgia and Epstein’s Barr but still waiting on results..... I’m not pleased with the attention I’ve been give as it’s been since February since my chemo and not any answers that are truly being addressed. Let me know how next line of treatment goes for you! Wishing you all the best for healthy days ahead xoxo
I wasn't able to complete BR treatments 6/12. Low cbw and neutropient. So, I started maintenance therapy with rituxan 3 treatments and they were postponed due to sinus infection and bronchitis.
Now Oncologist said that base on blood test i am Hematologically in remission. 5/22/17. I have an appointment June 7th
Praying that I have remained hematological in remission. No real issues slight fatigue, eye infection and sinuses.
I really hope you have remained in haematological remission and treatment can go ahead. Like you, I have an eye infection, as i’m prone to blepharaitis. It’s been really bad over the last few days, hoping it will clear for next treatment of 31 May. I suppose we have no resistance to anything at the moment. Sending you best wishes and healing thoughts.
Thanks for your response. I’m starting to feel a bit let down by the hospital treating me. If I hadn’t gone to me GP, I’d have struggled along until the next round of FCR. Surely they should have been arranging blood test checks on me after my first round of treatment?
Initially I thought it was all part and parcel of that period of feeling awful. I called my key worker (specialist nurse) around 10 days ago, but couldn’t get through to her, so it drifted another day or do. Then called again and she said she thought I was anaemic and I should get to my GP and get my bloods checked. I couldn’t get in that day or the next at the doctor’s. I’d not been instilled with any sense of urgency. Then it was the weekend and I felt worse so phoned the Macmillan helpline and it was only then they stressed to me to urgently get my bloods done, which I managed to do on the Monday and ended up here.
When it’s your first and you don’t really know that to expect, I think you should be told in what circumstances to get in touch urgently and I really think my bloods should have been checked at least 2 weeks in. It costs me £500 for train tickets and accommodation for each session for husband and self to go down. If I then arrive and can’t have FCR, that’s a serious waste of money. Dent in the wallet as well as the health and can’t afford either.
Thanks B.B. I will be doing. Probably a conversation first, indicating my disappointment and then a n email to both the hospital team and the Flair team. You’d think one of them would have looked after me.
Hi Mandy I’ve just been reading this thread and sorry to hear you are feeling a bit let down by your Flair team but it shows that it’s good that we can compare our experiences so that at least now you can sort this out with your team. As well as the trials Nurses phone contacts I was given a 24 hour hotline number and told to ring it if I felt unwell in any way or had any concerns. Also could you discuss the possibility of getting your bloods done at you own gp in between appointments to save on the expense on travelling and accommodation? I’m not sure if they were just being extra careful with me this first round getting my bloods done a week after 1st treatment due to my very high lymph count but it was reassuring to have it and I’ll be asking for the same in next cycle. Hopefully you’ll be home soon and can get these issues ironed out with your team.
Hi Helen, thank you so much for your post and it’s been invaluable to compare notes as we go through this. Yes, I will definitely get my hospital/trials team to arrange bloods part way through with GP. I haven’t felt up to that complaining phone call to trials team and hospital yet. Good night’s sleep and i’ll be up and at ‘em tomorrow.
I arranged the same when my platelets were dropping quickly and I needed regular blood tests. My gp faxed the results through to the consultants secretary at Christie’s.
Just checked my discharge letter. It said to my doctor I would be reviewed “in clinic” in 2 weeks. Well that didn’t happen. If they’d spent a moment considering it, did they really expect me to go all the way to London just have bloods. They should have liaised with my doctor about it. Very cross.
Agree they should let u know what to expect. I was wondering why they told you to go to regular doctor, but now I understand your treatments are far from home. 💜
I was surprised you were left like that. You seemed to have been sent off with very little back up or advice. I would feedback to them directly. If you want to write an email ahead of your next appointment, I'll help you. X
It’s really important to tell the hospital, as it may be that they haven’t got a protocol for following up, or it wasn’t followed, and they need to know.
Thanks Chris. I’ll definitely be following this up. No-one else should have to go through my last few days - including me! So i’ll try and make sure of that.
I was severely anemic and neutropenic when I started FR (no C in my case). I only had one cycle of FR. My anemia and neutropenia didn't get worse, but they also did not improve, even when doctors waited an additional 2 weeks. So that was used as grounds to switch me to Ibrutinib, which I would not qualify for otherwise in my province of Canada since I don't have 17p deletion. It's possible something similar will be done for you if the FCR has such an effect on your marrow, and so swiftly. I have been super happy on the ibrutinib (7.5 months now) and am glad things worked out this way.
Those in the U.K. can better advise you about your options if you "fail" FCR. Your next round should be delayed until your counts are more stable. In some cases a lower dose works. In others this will qualify you for one of the newer treatments. Someone "across the pond" will have to explain how that works. Hang in there!
Hi Mandy. I had a very dramatic change in my neutrophil count immediately after my first round of FCR. It dropped from 3.6 to 0.3 and bounced up and down for months. My HGB was relatively stable which is a bit ironic as I’ve had 3 bouts of AIHA - am currently still having 12mg of Prednisone daily. Best wishes, Rob
I was given FCR in 2016 and had two sets of bloods taken in each round. One shortly after the drugs - to measure the damage. One just before the next round - to check I'd recovered enough for the next go. I'm on the Flair trial, but I got the impression that this was normal practice for my hospital (Royal Bournemouth).
Thanks for your input. I did have a blood test before I left hospital straight after the FCR. Presumably that was ok. Another lady who is a week behind me a different hospital, went back yesterday for bloods to be checked , so midway between treatments. I’m going to double check my discharge letter when I get home, then speak to them and say i’m Not happy.
Hi Mandy, I needed a blood transfusion prior to my first round of FCR due to being too anaemic. Following the first FCR, I was instructed to have a blood test three weeks later prior to my second round of FCR which was due the the following week. I was called back to the hospital the day after my blood test to have a further two units of blood as I was too anaemic and neutropenic to have the second round of treatment. This second round was delayed by a few days and after having that I no longer needed any more transfusions through the course of 5 treatments in total although my neutrophils remained low at times necessitating a couple of courses of injections at home.
Hope you soon improve and wish you well through your next courses of treatment - hang on in there and look forward to when you have completed the treatment and be able to live a normal life again.
Thanks so much for your reply and good wishes. I’m happy to hear that despite that shaky start, you’ve battled through and come out the other side hale and hearty. Long may it continue! X
The normal range for women is lower for women than for men, but below 10 your doctor should start monitoring closely and below 8 was the cut off for a transfusion in my hospital.
Both docs said no transfusion...when I was 9.9, I asked about transfusion....both said chemo. I wonder why some get transfusion and some don't. Thinking it has to do with my IG levels?
Just to say that I've been following your FCR story with great interest (and sympathy). I've never had FCR so can't comment on things, but wanted to wish you well.
I do hope things start to get better for you soon.
My husband became severely neutropenic after his first infusion of BR (chemo) and it lasted for 6 weeks. His neutrophils were 0.0. It happened again after his 4th infusion, and it lasted for five months. They stopped his chemo, and we began Ibrutinib. I hope you are feeling better, and they are careful with your next step of treatment. (My husband was restricted to home during these times, and could not be around large numbers of people or sick grandchildren...hard times.)
Hi Mandy, I've never had FCR but it sounds like you've really been through the mill with it. I hope with your hospitalization and infusion that the next round will go a lot easier for you. Fingers crossed!
No. I’m a self employed locum lawyer, so have to be able to agree when I am able to work with companies in advance. At the moment can’t plan anything, so will just have to enjoy the sunshine instead. 🙂
My husband has P53/17 deletions. The FCR nearly killed him with bronchial pneumonia type infections and having to take Levaquin until his platelets crashed. He’s now on Ibrutinib and doing extremely well.
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FLAIR Trial - ErnieUK Bloods before round 2 FCR
Should I get a blood transfusion?
