FCR...the "gold standard" for CLL

[queencalabrese]

Well, after all kinds of advice and doing some serious research, I decided to go to OSU James Cancer Center for treatment. Dr. Byrd will give me FCR outpatient. I start Wed. May 3. I cant sleep or do much of anything. I am anxious but relieved to finally start treatment. I am trisomy 12 simple karotype mutated. I'd love to hear how others survived this "sledgehammer" chemo with all its toxic effects and life-threatening possible reactions. Thank you.

[AussieNeil Partner Administrator]

If the world recognised CLL specialist Dr Byrd considers you a good candidate for FCR (which indeed you are with your prognostic factors), then you can look forward to a very long remission and a high likelihood of being cured or not needing your next treatment for 10 years or more. You've done the serious research, so you know you've chosen your treatment path well - no regrets.

Yes, the next 6 months looks daunting right now, but in 6 months time, (not forgetting to be careful to avoid infections for another year), you'll be able to forget you have CLL. No side effects, no constant worrying about how to cover the cost of non-chemo maintenance treatments and free to get on with your life without living with the uncertainty that comes with Watch and Wait...

Wishing you well.

Please keep us informed of your progress.

Neil

[queencalabrese in reply to AussieNeil]

Aussie Neil, Yes! Thanks for the way you put it...so positive!

[Hidden]

Like all of us who have had FCR you are frightened of the treatment. For many it is do able with the odd small problem. The chemo team are there to make life as normal as possible and you must use them. It is not a"sledgehammer" treatment. On this site there is lots about taking FCR and tips so I won't go on about it but the amazing thing is by mid treatment you start to feel so well. At end of treatment plus 6 months you have a new lease of life. Yes, associated risks with chemo but daily life is a risk for anybody.

Have faith that you can do it and you will feel so much better.

[queencalabrese in reply to Hidden]

Devonrr, Thank you! I do have faith and yes I will fight! I am looking forward to next spring now...I love working in my flower beds in the spring. And with my new lease on life after all this I certainly will have a beautiful garden!

[Foggymind]

I am in my sixth year of remission after FCR so can vouch that the treatment was extremely effective in my case and let’s hope in your case as well. I did have a bit of a bumpy ride during my FCR treatment (details in my profile) but the end result was well worth it. I found the chemo nurses/teams very kind and supportive and was re-assured by their experience and understanding. Also meeting and talking with others undergoing the same kinds of treatment will be comforting for you. I am now on watch and wait with check-ups every six months. Drink plenty of liquids during treatment, cannot stress that enough.

Sending my very best wishes to you and hoping your treatment goes well.

Kevin – Essex, UK

[queencalabrese in reply to Foggymind]

Congrats on your remission! I am happy for you. Hope I also can say this in 6 years...no, in 15 years! Thanks!

[BellaBee10]

Some breeze through, others don't. Don't feel guilty if you're one of the ones who don't. We'll all be here to support you and we're all different. I'm very happy I was treated with FCR. All the best to you. Nic

[queencalabrese in reply to BellaBee10]

Thank you. I realize that it will be a bumpy road at times, jus hope it doesnt leave me with any lasting adverse reactions.

[BellaBee10 in reply to queencalabrese]

I don't know about lasting adverse reactions as I'm only 6 months past the last chemo, but for me, I would rather take a chance on something that can whack it back for a very long time. I would have hated to go on a long term drug as a first option. If it does come back, at least I know I've had a go. I'm not sure if that helps knowing how I feel, we are all different.

[queencalabrese in reply to BellaBee10]

Oh, yes. All responses have been great! And like you, I dont want to take pills for the rest of my life. They have some possible adverse side effects too. I am getting comfortable with my decision now. I am on allopurinal now too. Preventative. So am ready to take on Day 1 Round 1.

[virdieblue in reply to queencalabrese]

FCR is less effective in people with unmutated IGHV. I have that so am very willing to take pills everyday.

[Hidden in reply to virdieblue]

Crap, how did I miss this tidbit of information???? What test shows unmutated IGHV? I checked my FISH not mentioned, checked the other tests...nothing. Crap Crap Crap....I can't believe with the research I have done I missed this....please, what test shows this? Should be FISH? Right?

[AussieNeil Partner Administrator in reply to Hidden]

It's a special test difficult to do outside of specialist CLL centres, but if your FISH test shows CD38 negative and ZAP-70 negative, there's a good chance you are IGHV mutated.

[Hidden in reply to AussieNeil]

Thank you for your answer. The only oddity I seem to have is a homozygous 13 deletion (10%-20%) vs Heterozygous deletion. No ZAP70 or CD38. Reason this is freaking me so badly is I have horrible incapacitating fatigue and called my Hematologist today and got an appointment next week to beg for FCR. I do not want to be irradiated...but I do not want to spent next 5-10 years W&W feeling like I died and just forgot to stop breathing. My life, what little I have is a wreck because of the fatigue and the worst part, as I said before, my numbers just not that bad overall.

[AussieNeil Partner Administrator in reply to Hidden]

Better homozygous 13p deletions than 17p, which would not favour FCR treatment. There's no irradiation with FCR - it's chemo-immunotherapy.

Unfortunately, when it comes to dealing with non-CLL medicos, with the exception of anaemia, CLL related fatigue doesn't show up in standard blood tests. Have you explored all other possible reasons for your fatigue with your GP? (Iron/B12/folate studies, vitamin D level thyroid function, sleep apnoea, etc?) In general, GPs are better at examining the standard reasons for fatigue than CLL specialists/haematologists. You would not want to put yourself through FCR treatment and see no improvement in your fatigue...

Neil

PS I see you have explored other potential causes of fatigue per your post: healthunlocked.com/cllsuppo...

[Jemisavs5]

Good luck to you!! I am also trisomy 12 and will begin treatment t soon. My doctor does not want to do chemo and would like me to begin oninutuzumab. Should I talk to him about FCR? I'm so confused.

[holly2 in reply to Jemisavs5]

Others may be more knowledgeable on this than I, but I would definitely be asking for your consultant's reasoning behind this treatment over FCR. I pushed my consultant to allow me to go for FCR over BR and happily it was agreed after they rethought it. I don't understand why you would treat CLL with only an anti-body and not the chemo back up?

Holly

[queencalabrese in reply to Jemisavs5]

I have been told by other sources that for FCR you should be under 65 and healthy with out other comorbidities. I am almost 65 1/2 yrs. old and I dont consider myself fit, healthy and I have a couple comorbidities. But Dr. Byrd is one of the top experts in the world and I trust him. I would rather have FCR (even though it scares me to death) than anything else because of the known long remissions. There are lots of possible side effects from all our choices of treatment, yet we know we have to fight this cancer. So hoping for the best. Talk to your doctor.

[Jemisavs5 in reply to queencalabrese]

I am only 53. I wish you the best!!!

[MsLockYourPosts Passed Volunteer in reply to Jemisavs5]

We are all so different, even with the same markers. Obinutuzumab / Gazyva was the right treatment for my particular flavor of CLL. FCR would not have been. Talk to your doctor about why obinutuzumab has been chosen for you. We have a responsibility to ourselves to ask questions and seek other opinions if needed until we are comfortable with what we are being told. It was, by the way, a very easy treatment - no chlorambucil with it for me.

[queencalabrese in reply to Jemisavs5]

Depends on your age and health. But ask because it gives you the best chance to beat this.

[holly2]

Queencalabrse, now you have a decision, I found that a relief in itself over the worrying about which treatment to go for. On this forum, I think I have read far more positive outcomes from people on FCR, tough as it is, than I have negative. As long as you heed the main advice like drinking plenty, keeping safe while neutropenic and, from my own experience, keeping your legs moisturised, hopefully you will be OK. All the best, Holly

[sallyplest]

Hi, I started April 11th and have a week to go til my second session. I found the waiting for the treatment to begin on the first day nerve wracking, only because I had no idea what to expect. But don't worry too much. I had rituximab infusion over two days very slowly and chemo tablets from day 1-5. The nurses are fantastic and understand how you feel. The greatest piece of advice I took from this site was to drink lots and lots of water to flush out all your dead cells! Also to take your anti sickness tablets before you feel nauseous as this isn't pleasant but can be avoided. As regards eating, during chemo week I didn't feel like very much to eat but some of the tablets are after food so I had a small meal of soup but nothing hard to digest as I found this stuck in my gullet. All in all after one treatment I feel good. Stick with the water even after chemo tablets are finished and get plenty of rest!!! I've rambled on abit sorry it's because it's so fresh in my mind. Oh and also I took Holly's advice and now moisturise my legs as I found some quite sore dry skin starting by my ankle. Invest if you haven't already in a thermometer, this is essential as I had a reaction at home a week ago but my temperature was normal and was reassured by that. I rang chemo emergency number and that was the first thing they asked. Don't do what I did which was to buy a rectal one by mistake (it's still in the box!). There is lots and lots of information and excellent advice on here from people who are experiencing or have experienced FCR and it has been the best thing I did joining. Good luck with your treatment.

Sally UK

[queencalabrese in reply to sallyplest]

Thanks Sally! Yes, I must pack a thermometer.

[MartyR]

Dear Queencalabrese,

Ok everybody is different and of course our bodies react in different ways to any drug.

I have not read all the other replies but my experience with FCR was positive.

As a precaution my wife was with me on my first FCR treatment but as I had no significant side effects -- on the other monthly treatments I was able to drive to and from the hospital daycare centre - with family and friends just popping in for "chats" to reduce the boredom.

OK the only side effect was maybe tiredness -- so as I was still working full time I asked for my FCR treatment on Fridays -- so i had the weekend to rest.

So I wish you well next Wednesday and I find that the Bible gives us all the support we need in so many situations.

Maintain a positive viewpoint. At Proverbs 17:22, the Bible says: “A joyful heart is good medicine, but a crushed spirit saps one’s strength.

Regards,

Marty

[queencalabrese in reply to MartyR]

Thanks Marty. Yes, I plan to listen to my Christian music on my earphones while there.

[Dddinah]

Dear queen...in 2011 I did chemo for 6 months (br). I jokingly asked for a little shot of morphine before first time. I was so nervous! But all went well. Did not lose my hair which (silly me) was one of my biggest worries. Nausea meds worked fine. Was in remission five years. Now just began ibrutinib and so far, so good. Wishing you well and praying for you. Dddinah

[MsLockYourPosts Passed Volunteer]

The longest 5 minutes of your life will be the 5 minutes in the infusion room before your treatment starts. Once things start flowing it gets easier. Make sure you have a driver until you know what the premeds are and how they affect you. UCLA wouldn't let me drive for 6 hours after IV Benedryl, and I wasn't comfortable doing so for about 8. If you even think something is off, even an itchy ear, tell your nurses. They can make adjustments in the pre meds and infusion rate to head off a bad reaction if one starts. Lots of other good advice here. Let us know how things go.

[queencalabrese in reply to MsLockYourPosts]

Thanks and I will.

[rcknow]

I wish you all the best for your FCR. I just finished six months back in late March and I am also trisomy 12 mutated. I was diagnosed in the hospital with severe anemia and needed treatment as soon as possible, once the FISH and IGHV tests were done. Since I had such bad anemia which required weekly blood transfusions, the first 2-3 months were rough, but between rounds 2 and 3, my hemoglobin rose dramatically to normal by round 6. I did have very low neutrophils a couple of times so i had neulasta after each cycle and I stayed healthy. I also had hand sanitizer with me wherever I went and was very diligent about cleaning any cuts or scratches immediately.

The chemo nurses are just amazing people and are there for you with any question. I had infusion at a place with nice windows where I could relax and watch the world go by.

Best wishes!

-Richard

[queencalabrese]

Thank you. Do you have a port?

[rcknow]

Yes. My consultant at Dana Farber recommended getting a port due to the combination of the IV FCR and the weekly blood transfusions. It has worked out very well and they are recommending I keep it in for a little while, but hopefully it won't be needed. When I first started getting the blood transfusions, I had to endure the wonderful nurses trying to find a vein in my hand, but after the port that was not an issue. The doctor who installed the port told me that it would also eliminate the risk of chemo drugs seeping into the tissue. The procedure was done with local drugs so I was awake but VERY relaxed during it. It took about a week to heal completely though I did receive FCR about 6 days after the procedure.

[queencalabrese]

Thank you. I will not have a port when I start on FCR tomorrow. Maybe later.

[MsLockYourPosts Passed Volunteer]

Start now drinking LOTS of water now. Your veins will be easier to access if you are well hydrated, and you want to keep drinking water after, as it flushes the chemo and dying cells out of your system. No coffee before they hook you up, as it can constrict the veins. I only went through multiple nurses (they get two pokes and then pass you to someone else at my infusion center) once, because I want in dehydrated. Number four got it. The other three were great nurses who I knew and who never had trouble with my veins before (or after - lesson learned).

[queencalabrese]

Thanks, yes, I am keeping well hydrated. Water only. I may end up with a Pic line due to small veins though. So far 2 treatments of FCR and I am doing surprisingly well.

[BambinoDan in reply to queencalabrese]

So glad to hear you are doing well! I'm starting next week. Love to hear an update! Thanks and God bless!