FCR veterans

[kel555]

hi all iam due to start fcr on the 11 august on flair trial not realy happy due to the covid ,well my question is will it work i have been on w&w for 7yrs i have no tp53 and others and i dont know if iam mutated or un mutated could i be mutated if i have had cll for this long, realy need some answers guys iam 57yrs old ,,,kel

[AussieNeil Administrator]

You are more likely to be IGHV mutated if you have lasted 7 years in watch and wait. Have you ever had a FISH test? Being CD38 and/or ZAP-70 negative increases the likelihood that you are mutated.

Neil

[kel555 in reply to AussieNeil]

hi neil thankyou for replying your very good iam cd38- checked for TP53 and ATM deletion not detected is that good or bad. ive been to the christie hospital manchester today my hb is now 91 ,,spleen 20cm ,,wbc 212000 ,a few nodes showing now on ct scan the doctor thinks i will do well on fcr ,what do you think neil ,iam up every morning and still working never had night sweats ever ,,,,kel regards

[AussieNeil Administrator in reply to kel555]

With haemoglobin at 91, you do need to start treatment soon. I agree with your doctor, I think you'll do well on FCR. Look foward to starting a long remission in 6 months time when your treatment is done .

[kel555 in reply to AussieNeil]

cheers neil

[mjcavanaugh in reply to AussieNeil]

And something I did to save my life...I noticed my platelets jumped back to 261 from 30 after the 4th month of FCR. I immediately told my doctor to stop the treatment.

We need to manage it ourselves in the US to survive because they get kickbacks for chemo - and my doc tried to push the 6 months, because it was proscribed. I have a beautiful remission for 5 years - perfect blood now. I was at stage IV when I discovered it. By the way...beware of glyphosate.

I used research from this site to help me survive.

FCR was only harsh the first month. It did not affect hair either. I also chose FCR over Gayza, and am glad I did.

Bless you, and prayers sent your way!

[GMa27]

I did very well with FCR. Only needed 3 rounds. Very uneventful. Hope it goes as well for you! Almost 2 years in remission!

[mjcavanaugh in reply to GMa27]

Actually, me too - it was after 3 rounds my platelets jumped to 261 from 30. I stopped after the 4th round, and it is as if I am cured. I do have this issue now where I need to remind myself to drink fluid now. Other than that, the two poisons to kill the cells, along with the wonder drug - rituxin - made all the lumps disappear that first treatment. It made my head itch a little, but it was a minor reaction.

[very]

My husband did well on FCR , 5yrs in remission.

Jenny uk

[mjcavanaugh in reply to very]

Same here! I was 52 stage IV, and now I am 57 with a perfect CBC every time...just a very slight lymphocyte climb - but well with the normal range.

[Mandy56]

Hi Kel,

I was going through FCR two years ago at the Christie! Are you seeing Dr Bloor?

I had been on W&W for 8 years. WBC was 34, platelets around 70, as my spleen was 25cm. That was the only reason they started treatment. Otherwise I was fit and well, working full time, no night sweats or other symptoms.

I was told, before treatment, that FCR for “younger “ patients (I was 57), who are fit and well, is cautiously being talked of as a cure. Let’s hope.

Just be aware of any side effects and contact your team for advice. If you become very breathless and weak, you may be severely anaemia and need a blood transfusion.

Good luck. Keep us updated.

Mandy

[mjcavanaugh in reply to Mandy56]

That’s right, you will get weak - weak to walk and hard to get enough oxygen. After the second round, I had to get a blood transfusion to keep me going. My anemia was very severe. I think I am one of the ones actually cured by FCR.

[Cheshire2016]

My husband is about to start cycle 5 next week.

His response to treatment so far has been described as ‘excellent’ by his consultant.

Have a look at my posts for more details of each cycle so far.

Good luck!

[MF79]

FCR 2016- 6 rounds (Also Flair trial) and now 4 years remission. I was in my mid 50’s when I started treatment.

[mjcavanaugh in reply to MF79]

Me too - but 5 years and all good

[bettyba]

Hi I have finished 6 rounds of FCR and I have been given a full remission and hope it's a long one. Just ask all the questions you need to and be mindful of any changes in your body and don't be afraid to ask for advice and help if anything feels odd. All the best.

[SueeB]

Hi Kel555

I was diagnosed in 2009 unmutated CD38 and Zap 70 positive So, not the best prognostic markers. I required treatment FCR in 2013 and have been good ever since. My immunoglobulins have remained low but no other signs and symptoms. I did find the FCR treatment hard going with severe nausea but the fact that I have been 7 years symptom free it was worth it. I am working 3 days a week and am a 62yr old granny so life is full and busy! I hope this helps. More prone to sinusitis and shingles.

[Cheshire2016 in reply to SueeB]

Its brilliant to hear that you are unmutated and still in remission. Gives us a lot of hope that my husbands treatment will give such a good response!

Thanks for sharing this x

[sue2412]

Hi, I completed my FCR in December, currently in remission. I’d been on W&W for nearly 6 years when I started. I had quite severe reactions to the treatment, including sepsis twice, chest Infections, neutrophic. I was unlucky, the majority on people don’t have these reactions, I would still do it again to get rid of my symptoms and to go into remission, and you forget these things very quickly.

Good luck with your treatment, remember to take things to keep you amused as you will have a long day 😸

[JigFettler Volunteer]

Hey!

It does look like you need treatment.

I am FCR 2018 vintage. It was a very good year for me. My response was fast and full. Cycle 3, blood and CT full remission. Had 6 cycles. Low white cells and Immunoglobulins, I have been protecting my self from infection ever since. But back to full fitness. I had very few issues with FCR.... mountain biking cycle 4. LoL... carefully!

The Christie, Dr Bloor CLL expert, are you seeing him? I wouldn't hesitate if they are offering you FCR. Under FLAIR you will be well monitored.

As Mandy56 suggests. Know FCR, and the precautions you must take. Always ask if unsure. Temperature over 38° you need hospital admission, I hope hope they will tell you to ring the ward and not 111!!!

Pls keep in touch, tell how you get on.

Best wishes

Jig

[Hidden]

Hi kel555

I was diagnosed in around 2007 and needed treatment in 2011 which was six rounds of FCR. It was hard going for me, but well worth it as I went into full remission and still am. Its only my immunoglobulin levels that are low now. I am 58 now.

Good luck

Diana

[Sutto in reply to Hidden]

Born the same year and diagnosed the same year as me!

Good health to you!

[Sutto]

My FCR adventure began a few months after I was admitted with pneumonia. 1 had been on w&w for 7 years. Spleen was hugely uncomfortably enlarged as well as enlarged nodes in neck armpits and groin. I had 6 sessions & carried on working a week after each session. I responded really well. It even cleared my very painful psoriatic arthritis! I became a new person!

My advice to you is look after yourself afterwards!

Good luck with it all.

[mjcavanaugh in reply to Sutto]

It feels good to be a new person

[Sutto in reply to mjcavanaugh]

It certainly does! Like a second chance at life 😊

[TheFrog]

Kel,

I was diagnosed with SLL aged 39 in 1994 and needed treatment within 6 months, if you want the details they are in my profile. I relapsed in 2007 and had FC (no R on the NHS at that time) and have been in remission ever since. I can't give you my markers because FISH testing wasn't being carried out in the UK at that time. I'm feeling terrific and hope my remission continues indefinitely.

Jacques

[Oleboyredw-uk]

Hi Kel555,

I did FCR (at The Christie) in 2012. In my opinion it went well. I did relapse in late 2016 and went onto the CLARITY trial.

Never quite made MRD negative from FCR and I’m 11q deleted.

Happy to answer any ‘personal experience’ type questions.

I was in The Christie for a checkup about three weeks ago. Even now, despite COVID-19 and all the precautions it is one of my positive places to be. Such a great team.

Best to all, rob

[kel555 in reply to Oleboyredw-uk]

hi thankyou for your reply.can i ask you your markers thankyou,,,kel

[Oleboyredw-uk in reply to kel555]

Hi Kel,

11q deleted, unmutated, not ideal for FCR in terms of remission length, however FCR was best on offer in 2012 for my profile. I will say that the six cycles of FCR went well, with little side effects.

best, rob

[megsy]

Hi kel555.

I was diagnosed with CLL in 2010 and had FCR in 2011. I tolerated it very well , just needed blood transfusion for anemia at one point. I am now 69 years old and still in remission. Good luck with your treatment.

Megsy