FCR selected

[sallyplest]

I've been randomly selected for Flair trial with FCR starting 11/4. I have to have chemo orally first of all as my white count is high and needs to be below 100 before I can have intravenously. I feel disappointed but not sure why. I think it's because my consultant and nurses have spoken since treatment first mentioned as if I would get iR arm and I realise random selected so they didn't know what I would get. Stupidly I feel like I have let them down which I know is ridiculous but my head is all over the place.

[Newdawn Administrator]

Hi Sally, you're caught in a whirlwind of emotions at the moment and had probably pinned your hopes on being on the ibrutinib arm of the trial. But it's outside of anyone's control and of course you haven't let anyone down.

You'll know from the accounts on here that FCR can be spectacularly successful and effect deep and durable remissions for so many patients. Plus you have the amazing advantage of multi-disciplinary oversight whilst you receive it. I'd jump at that chance if I'm honest. Ibrutinib isn't without its side effects too and many quite serious.

You need time to assimilate all this and calm your troubled mind. It's certainly not a bad result but maybe just one you hadn't anticipated and had no control over.

Sending best wishes,

Newdawn

[sallyplest in reply to Newdawn]

Thanks Newdawn I feel better this morning. As said on here Flair is a trial to test IR on patients who haven't had treatment so I'm having tried and tested and am fine with this.

[DMary]

Hi Sally. I get it. I was sure I was to be in a different arm of the trial I'm in. The trial coordinator told me that there were 3 others enrolled at my site and they were all on different arms. That left the one I thought I'd be on - but that's not the way it went. It's difficult to sign the form and let chance make a treatment decision for you. I don't think disappointment is very uncommon.

Of course with a trial you can always chose to withdraw, but I didn't make that choice. Frankly with the reactions I've had I'm glad I'm only receiving one drug and not the two I had hoped for! Sometimes chance makes a better decision.

I wish you all the best and hope you experience the lengthy reprieve that makes FCR a "gold standard" treatment.

ps I wish they had found a way to decrease my WBC before treatment. The result of the rapid reduction was not fun.

[sallyplest in reply to DMary]

Thank you DMary I have had a long think today and realise that I am having the best treatment available.

[DMary in reply to sallyplest]

I'm so glad to see all of the helpful experience and support you have received!

Feelings change, and if you have another round or two of disappointment or discouragement you can always reread all of these hopeful responses. Take good care and I hope to read about your FCR/FLAIR progress as you go.

[sallyplest in reply to DMary]

Thank you I cannot believe the huge response I have received after voicing my worries and disappointment and I am so extremely grateful because it has helped me realise that I have been selected for the best there is at the moment.

[AussieNeil Partner Administrator]

Sally , you may be feeling disappointed just now - that's natural, but in just over 6 months, you'll be in remission and not have to worry about taking tablets daily for your CLL (though you'll be on antivirals a while longer). In a year's time, you'll be able to forget about taking anything for your CLL and have no concerns about side effects. Welcome to the growing FCR club!

Neil

[sallyplest in reply to AussieNeil]

Thanks Neil and for the welcome to the FCR club. I feel differently this morning because you are right about having just 6 sessions so it's all good.

[ap64]

Hope FCR will be good for you. No point in looking back now. Good luck and keep us posted.

[sallyplest in reply to ap64]

Thanks AP64 and good luck to everyone in whatever position they are in regarding treatment.

[terryI_uk]

Hi Sally, I was going to get FCR treatment anyway but was offered a place on the flair trial, I was selected for the iR arm but would have been happy if put on FCR, the upside being it only lasts for 6 months and still is the gold standard for cll treatment, good luck with your treatment and hopefully before long we'll be hearing about your remission, best wishes, Terry

[Hidden]

You have let none down. The whole point of trials is managing the trial and it's affects on people.

I thought FC was tablets in the UK and the Rituximab was intravenous. Rituximab is so good at time of infusion if you have high lympocycte numbers it can cause a major reaction. This I had. So I can see sense in taking just FC tablets for a cycle to lower the counts before Rituximab. I say a cycle because I went from 265 to below 100 after one cycle of FC and a very small amount of Rituximab.

Lots to read on this website, good and bad about treatment reactions but useful as tips.

You can do it. It is the best time to start treatment as winter ills have gone. Soon you will be in remission and this time next year tablet free and so full of energy.

[sallyplest in reply to Hidden]

I hadn't been aware of having to get wbc down before taking Rituximab and I was worried at first but I am in very good hands and will keep everyone posted.

[wroxham-gb]

My best wishes are sent Sally. I hope the treatments go

Well for you.

Looking forward to hearing your updates.

Sue

[abikaasa]

I am a month ahead in flair and felt like you do. However on reflection I am ok with FCR as it is a tried and tested treatment and the other one can be held in reserve. Let's fingers crossed for good outcome for both of us. By the way cycle 1 was fine for me, in fact I felt better than I have for months. Cycle 2 starts today so I am hoping for a repeat this month. Thinking of you stay fit and drink lots of water!

[sallyplest in reply to abikaasa]

Yes fingers crossed for everyone having treatment that it is successful and I intend to drink gallons of water to flush those toxins away!

[thebigdipper]

I am on the Flair trial, too. FCR last year. The whole reason for the trial is to see what Ibrutinib can do for treatment naive patients - hopefully really well, but we'll see. Getting selected for the FCR arm is supporting the trial without being a guinea pig for the new treatment and being given the well-established treatment for your CLL. Good luck!

[sallyplest in reply to thebigdipper]

You are right. I have had time to reflect now and am grateful for a tried and tested treatment. Thank you for your comments.

[Rich316]

Hi Sally,

I hope you have been reassured by the replies to your post. I am on the FLAIR trial and on my last week of FCR (Cycle 6). I too was disappointed about not being selected for IR and quite anxious about starting chemotherapy. A bit of research shows that FCR really is the current gold standard of treatment (As already stated in your replies) and in hindsight I am now quite pleased that I am on FCR - and my bloods are responding well - as I should be able to look forward to a good long remission. In that time they can evaluate and adjust IR and any other new treatments so that they will be available for when I may need it next time.

The added benefit on being on a trial - even on the 'control' drug - is that you will be looked after and have the extra monitoring before, during and after the treatment so that they can assess the new drug.

My WBC count was 277 before my first cycle and dropped to just over 5 after my first cycle (and down to normal readings after the second) so the Rituximab really went to work on my CLL cells. The secret is to make sure you stay hydrated during Chemo week and wee when you need to so your body can clear out the remnants of dead cells and residual FCR. The Allopurinol in week one will help with this.

If you really want a good read on CLL I will add a link at the end to a good report on FCR - from a U.S CLL workshop. It is long, but very informative. There are some potentially worrying bits ( for the anxious reader) , but remember it was written in 2010 when it was a fairly new treatment and a lot of the concerns the author mentions have been assessed and addressed - so look on it with an open mind and remember that 1000's of patients have been successfully treated.

If I may also add some reassurance. FCR was not half as bad as I thought it would be. You may feel a little tired during chemo week, but you will have good (normal) weeks in-between. I had a few problems with the Septrin prophylactic, but that was dealt with accordingly and I was put on an alternative anti-microbial. Be kind to yourself, stay hydrated and rest accordingly. I hope you have a long and healthy remission - good luck!

updates.clltopics.org/2515-...

[mehall51]

Hi Sally;

I was in the same position in 2015 and while disappointed I didnt make the Ibrutinib trial, they reminded me that FCR is the NHS gold standard. Now 18 months on post FCR and all is well. Stay positive and rest assured that you are getting first class treatment.

Onwards and upwards

Mike

[Foggymind]

Hi Sally,

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

I had my FCR chemo in 2011 and am now feeling much better than I ever thought I could be, in my sixth year of remission now. 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.

Take care

Kevin – Essex, UK

[Hoffy]

Sally ,

It should be fine.

Do you know your genetics? You said you're not P 53 mutated but do you know if you are 11 Q or 13 Q or trisomy 12?

Do you know your mutational status as mutated or unmutated?

.

[Peggy4]

Hi Sally. I'm not at treatment stage yet but when discussing the future treatments available, my consultant said that FCR was still condidered the gold standard treatment and extremely effective without the unknown effects of long term Drug use. Naturally we are all very excitrd by these new drugs but Don't lose heart, it may very well be the best thing yet.

Peggy

[holly2]

Hello Sally, my mind was in a whirl over treatment options including whether to put myself forward for the Flair trial. outside of flair I was allocated BR at first and was very disappointed knowing FCR to be the gold standard. Then had discussion over Flair with my consultant but opted not to go down that route because she said I would face long delays before treatment would start, and as I was 96% bone marrow infiltrated, I wanted to get on with treatment. Eventually my consultant said she had thought again and spoken to colleagues and I could go for FCR.

Have recently completed cycle 2 and should know my first blood test results after this cycle tomorrow. It is no picnic but I have not done too bad so far and very glad I opted for FCR not BR.

And as someone said above, we still have IR up our sleeve for a later time (much later I hope) if necessary.

So, welcome to the FCR club and I wish you all the best.

Holly.