Hello all CLL enthusiasts. I have just finished cycle 4 of my 6 cycle FCR treatment after being on 8-9 years W&W. I am on the FLAIR trial, but got randomly sorted into the current treatment. In hindsight I am not too disappointed as FCR is the current gold standard treatment, it hasn't been too bad to me so far - with the exception of feeling a bit rough and tired during and for a couple of days after treatment and the initial results after treatment 1 were quite remarkable and have been since (Lymphocyte levels from 277 to 4 and spleen from '7 fingers palpable' to virtually non detectable in one fell swoop). This has continued to improve and lymph nodes in neck, groin and jaw have also disappeared and no sign of Neutropenia thus far, so I am very pleased, thank you very much. I am certainly not bragging, but just hope to give some reassurance to those about to start on this venture as it is easy to write about the negative things we all go through - as I have done many times in the past. The only advice I can offer is to make sure you drink plenty of fluid (non caffeinated) during and after treatment and be kind to yourself i.e rest when you need to rest.
Anyway, to the topic in hand. I have suffered with Psoriasis on and off over the last 30 years (I am 52) and the treatment does seem to have made it worse, but I will grin and bare this until treatment has ceased and deal with that as a separate entity or as an excuse to go and have a couple of weeks in the sun ( making sure I use a suitable SPF cream, of course). but over the last couple of days- or since cycle 4 has finished- I have got quite itchy all over and have developed a itchy allergy rash over my torso, arms and hips. Following guidelines I rang my Haematology department and went straight in - on request - to have it assessed. The next bit surprised me as I would have thought they have seen it all before. The nurses and clinicians are quite happy it is an allergic reaction to something, but couldn't seem to decide on whether it was from the Septrin prophylactic ( apparently, common sense would dictate not as I have been taking the Antibiotic and Anti-viral for 4 months so it would have happened in the early days) or from something else. It was suggested I take an antihistamine like Chlorphenamine (Piriton), but I am personally loathed to do this as I like feeling 'good' in between cycles and it leaves me feeling like a zombie. So, I have started taking a non-drowsy Antihistamine (Cetirizine Hydrochloride) only because I found it in my medicine cabinet and I now hope I stop scratching like a dog with fleas. I have also been told to keep an eye on my temperature - which is always good advice to anyone on Chemo - in case it rises above 37.5 - 38 C.
My question is, has anybody else had this symptom develop during FCR, and if so what did you do/ or were told to do? Any advice would be much appreciated.
Here is to good outcomes to you all.
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Rich316
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Hope things settle down foryou soon and you feel not so itchy. Do you take ciprofloxin, this is the one that caused me to itch. Once I stopped things improved
No, I am on Co-Trimoxazole (Septrin) a Sulfonamides based Anti-biotic. As I said I have been taking it for 4 months at start of FCR with no problems, but there is information out there about possible allergic reactions. It may well be the cumulative effect of the FCR and something else I am doing/eating/wearing differently. Just a bit worrying at first and now annoying as I was looking forward to my 'in between' treatment time. Hopefully it will pass.
It was not until I was at the end of cycle 2 FCR that I developed a rash on my neck and torso. Also my scalp was tight. Told by Haematology nurse to visit GP a.s.a.p. This I did within minutes.
Put on antihistamine by the GP and since I was due my clinic appointment 3 days later told to report that it was thought that I had an allergy to Septrin.
I took photos of my rash . Antihistamines worked immediately.
At clinic I showed the photos and could also report that the rash was worse immediately after taking a Septrin tablet.
I was taken off Septrin and have been taking Pentamidine via nebuliser once a month at home.
No more rash so it was Septrin but took 2 cycles to show.
Had my last dose of Pentamidine yesterday. Aciclovir nearly finished must be coming to the end of my post FCR antivirals.
The practice nurse at Yarty did mention it could be the Septrin and mention taking me off it and on to Pentamidine - as you were. It was a call to Dermatology that convinced her that it wasn't as 4 cycles had passed. It does sound too similar not to be discounted. What Antihistamine were you put on? if it was an over the counter one I could try it for myself as they weren't too specific as to what I should try. The Cetirizine I tried today hasn't really touched it. If I survive (not in the literal sense ) until my next clinic I will bring it up again.
You really have been helpful today. I cannot thank you enough for replying.
I have just joined this group as I am about to be given my start dates for FCR on Friday - this will be the treatment if I am not part of a new clinical trial - all this will be revealed on Friday.Thank you for your initial comments - they have given me a lift although the worry is I am feeling as fit and healthy as I ever have so it is hard to accept that there is an imminent problem. Good luck with the psoriasis - not pleasant at all.
I know, it seems bonkers, doesn't it?, that you feel well in yourself and then being told you need treatment. I think I was probably ready for it though as I had some enlarged lymph nodes and was feeling tired, although I think a lot of that was mental fatigue from worrying about the CLL, and treatment, and working in an office environment ( as a 29 year career copper I was always an out and about person and hated being stuck in an office all day, but was put on light duties due to my CLL) - only because of the risk assessment of being in a conflict situation).
I was my own worse enemy pre-treatment.
I remember the weeks before treatment started. I was so anxious that my mind and body went into overdrive with the what ifs etc. Didn't sleep much either.
Once treatment started it was a bit of a case of, what was all that about? Okay, it isn't the most pleasant experience (especially the first time when you are taken through all of the procedures of the Rituximab drip and pre meds (****but only because it seems so scary****), and the follow up range of tablets for the next 5 days, but I think the mindset does change and you just get on with it. I know everyone is different , but in general, I honestly don't think it is half as bad as you may build it up to be.
I am no Pshrink or Zen guru, but if I may suggest trying some mindfulness exercises before, during and after, it may give you a bit of a break from the worry and stress. It helps for me. If you use a smartphone then there is an app called 'Headspace' that is great or there is also plenty of stuff online.
Also, if this link (below) makes it through the scrutineers of this website, have a look at this 2010 article on FCR. It is a big read and quite comprehensive. It is not only really informative, but quite encouraging. This was 6 years ago, when FCR was in its infancy. After reading this I was actually quite glad I was chosen for FCR in the trial, rather than Ibrutrinib + Rituximab.
Good luck with your treatment and let us all know how you get on.
I developed a rash during FCR it was diagnosed as a drug rash.
It was from head to foot!
I was given antihistamine and an aqueous cream.
I was finally hospitalised due to nuetropenia and was seen by a dermatologist when there. His view was that it was an allergy to penicillin based antibiotics which was a bit of concern considering I was having them pumped into me at the time lol
My view looking back is that I was getting so many drugs at the time due to treatment and having antibiotics due to nuetropenia plus several drugs for comorbidities that the interaction between them all was bound to have an effect. I stopped riveroxiban due to low platelets but when I restarted the rash flaired up again which led us to believe this may have been the drug that was reacting to treatment.
I think you are probably right. It is probably either an accumulation of 4 cycles of FCR and Prophylactics or the Septrin itself, which has also been mentioned. It was just a bit of a surprise that it had the Haematology nurses scratching their heads ( while I was scratching everything else ) over what it was and was essentially sent away with advice to take a antihistamine and some emolient cream. Let's see what happens.
I had a nasty reaction to Co-trimoxazole (Septrin) after being on it for five months for prophylactic reasons during FCR. The rash and swellings took several weeks to clear. The rash was very itchy. It's the only allergic reaction I've ever had.
Nice one, thanks Kaymac. It is certainly reassuring that my rash doesn't seem to be a new and wonderful phenomenon (had to spell check that).
I am not an allergy person (with the exception of a bit of hayfever and my cat - sometimes), so I think this may be the reason. Did you come off it straight away and go on to something else? I won't stop anything without being told to ( I am not that daft ), but I am definitely considering giving the unit a ring again after the weekend and insisting that they investigate it a bit further, especially as I am expected to stay on the prophylactics for 6 months after treatment ends.
I had exactly the same symptons as you after my fourth cycle of FCR. My GP diagnosed the rash as psoriasis and prescribed a hydrocortizone cream to be used for a week on the worst areas. He also prescribed a moisturising cream which helped greatly. I could only have 5 cycles of FCR and now three months after treatment I still have a bit of psoriasis but it is much improved through using the moisturiser. I also am on co-trimoxozole and have been now for 8 months.
So, whether the psoriasis is caused by the FCR or the co-trimoxozole remains unknown in my case.
Thanks Penkman. Yes, sounds very very familiar, but reassuring thank you. I have had Psoriasis for years, but never this bad ( started the big flare up after cycle 2 ). I now feel like the singing detective. Good to hear yours has now settled and I hope your bloods are where they should be - Here's to a good long remission.
I finished by six cycles of FCR in December. This past week I developed what looks like bug bites on my neck, face and a few on my chest and shoulders. They are sporadic, not a rash, but itchy as all get out. I called my Dr and was advised to see my dermatologist. Saw her on Friday and she had no idea what it was. Gave me a cortisone cream and Benadryl. It got a little better, but now two new "bites" appeared on my shoulder. Wondering if it could be the Bactrim I am on three times a week. Seeing my onc/hemo on Thursday.
Sounds a bit different, but you are on a different Antibiotic to me so maybe it has a different reaction - if that is what it is! I am seeing a Dermatologist tomorrow, but looking at the post replies and the fact that it does seem worse after soon after I take it I would wager it is the Septrin. I hope you get it sorted soon and get some well earned relief - especially after finishing your treatment. You don't need that.
How was your FCR? would you consider putting on a separate thread with your experiences, to give some reassurance to those embarking on this adventure?
It is really easy. Just go to the top of this or the home page. On the right hand side (within the purple CLLSA banner) is a little green 'write a post' tab/button. Click on it and fill in the title section and write a post section then just click on the submit button.
I found these posts really helpful when first diagnosed and was looking for information on what was to come. The experiences of others was very reassuring.
Hello all and thank you for your replies and advice. Thought I would put in an update 15 days after my original post for anybody with similar side effects to the FCR regimen.
A week after the itchy rash started I have been to see a Dermatologist and explained when the rash and itching is worse (about 1 - 2 hours after taking my Septrin prophylactic ). I was then told to stop taking it immediately. Lo and behold, within two days the rash and itching subsided. After a week there is now only a faint residual psoriasis rash (probably caused from the inflammation) which is also subsiding with an emolient and steroid cream. My Haematology team are organising the switch to Pentamidine. I am due to start cycle 5 of my FCR on Monday (30th Jan) and I am in a far better frame of mind about it than I was a couple of weeks ago.
I just want to say thanks to all for setting me on the right path in getting to the bottom of this.
Hello Rich, I have just found your post and these replies as I searched for FCR and rashes! I have developed a rash on my leg, but it is not itchy it is rather sore and painful (feels like a bruise when touched). I do not think it is an infection. Showed it to Haematologist yesterday and she did not know what it was and gave me some strong antibiotics to take, should I need them. I am wondering if it is phlebitis. So my question to you really is, was your rash more itchy than sore and painful? I am also taking Septrin for the past 3.5 weeks only. Will go to GP on Monday I think! Many thanks, Holly.
That sounds very painful and distressing. I assume as you are on Septrin that you have also started FCR. My rash was definitely itchy and also reactivated my psoriasis so a bit sore too, but never a bruised feeling. I am a bit surprised that, if you have started FCR, your Haematologist has not referred you for further investigation and just fobbed you off with some antibiotics - especially as she stated that she doesn't know what it is. I would definitely go and see your GP on Monday. I am sure it is nothing to worry about, but is best to just get it checked out, if only to give you peace of mind.
Hello Rich, yes I have had one cycle of FCR and am due to start another this week, except my neutrophils are not high enough yet so it might be delayed. It was not my usual consultant, she was standing in for her. A really nice person but I will be glad to speak to my own consultant with whom I have a telephone appointment this Tuesday. I am fairly certain the leg problem is not infection. It is not hot, nor has it spread much today. I think it might be phlebitis so I am going to make an appointment to see the GP tomorrow. The antibiotics I was given are described as "potent" and I certainly do not want to take them unnecessarily. Thanks for your response and hope all is well with you these days. Holly.
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