day 1 fcr ,,but un-mutated

[kel555]

hi thankyou for all your replys,well it was day 1 today on fcr everything went smooth day 2 tommorow hope it goes the same ,today i asked the nurse what my mutation was she replayed and said im un-mutated now is it ok to be on fcr if you are unmutated just made me feel a bit worried i asked her before the treatment but she never got back to me ,the question his will i get a good remission and also the nurse said that both mutations markers are similar,iam on the flair trial ..many thanks kel

[bennevisplace]

If you're concerned I think you should ask your haematologist to clarify your IGHV mutation status. What you've gathered from the nurse doesn't sound convincing. Whatever the verdict, the point has been made before on HU: although mutated is statistically more favourable, FCR can give long remission times for 13q unmutated patients too.

[MareeM]

I am also unmutated, I have had 4 rounds of FCR which successfully shrank my tumours.

There was a 4 month delay in getting the ighv results back due to Covid..... and due to the size of tumours (12cm) Haematologist didn’t want to delay treatment. Once we got the unmutated verdict and found tumour shrinkage Doc stopped FCR. I relate it to having a snake in the woodpile, instead of Nuking the whole woodpile with lots of Chemo we wait for it to it to show itself before chopping it’s head off.

[kel555 in reply to MareeM]

hi maree thankyou for replying i like the snake bit lol,,can i ask you did you take the FandC ,,chemo tabs together or apart thankyou ,,kel

[MareeM in reply to kel555]

Hi Kel, I had my FCR through infusion (port) in the 28 day regime of

Day 1, Rituximab, Cyclo, Fluoro

Day 2, Cyclo, Fluoro

Day 3, Cyclo, Fluoro

Day 4, GCSF injection

I found Day 5 to Day 10 to be a bit rough.

On the whole I think I came through it fairly well 😊

[GMa27]

I had IV FCR- 3 rounds.

13q mutated.

I did hear recently that you can have FCR even if ur unmutated.

[AdrianUK]

Hi

In October it will be two years since I started FCR as an 13q UNmutated person. My lymphocyte count remains under one. My nodes remain low. The post treatment bone marrow scan showed my disease as being “undetectable”. In short it worked for me. I was told I’d havd a ⅔ chance of getting a nice long remission of at least five years once I’d been shown to be at the undetected status. It is true that people who Are unmutated have less chance of getting one of the —-really—- long remissions some people get wirh FCR (here I’m talking 20 years plus). But the good news is that if you do need another treatment at some point the NHS will fully fund either venetcolax plus Rituximab or Ibrutinib monotherapy at the moment and new drugs are coming through down the line too. So whilst FCR is a pain it is only something you’ll ever have to do through this one set of doses. I wish you well. Look out for signs of infection. And get help if so as they suggest. And make sure they are giving you strong enough anti Sickness tablets. If you have questions ask to speak to your doctor or nurse agsin. That’s what they are theee for. But know that in the Uk it is routine for mutated and UNmutated to be given FCR.

[bkoffman CLL CURE Hero]

FCR is a successful therapy for many, especially if you are mutated and a smaller but real number of unmutated also do well too with long remissions. Some folks love the 6 months and done protocol. However we have clear statistically significant evidence since 2018 that the unmutated group do better with ibrutinib frontline than with FCR. FCR is also associated with an increased risk of MDS. Ibrutinib works best when used frontline. Venetoclax has similarly high response rates with the promise of a limited duration of therapy. For all these reasons, I argue in favor of a targeted therapy frontline for all patients. I know that in many countries, choices are limited and if chemo must be used first for healthy folks <65 years old, FCR is the way to go.

[Smakwater]

kel555,

In commenting in general to the post and responses -

Please correct me if I am wrong, I believe that the data shows influence of 17p del in addition to being unmutated to be the no go rather than being unmutated with either 11q or13q.

These analytics can get deep quickly when comparing a variety of risk marker combinations and patient subgroups.

JM

[kel555 in reply to Smakwater]

hi are you asking if iam 17p because i dont know if i am or not i dont what del i am ,,and thankyou for the reply ,,kel

[Smakwater in reply to kel555]

I was not asking if you were 17P kel555, however, It is a very good question for you to ask.

Within the responses posted here, there are statements discussing the success of FCR for patients that are unmutated. In addition, there is a statement that indicates mutated status as being more favorable than unmutated with regard to FCR.

My comment is to submit that where the data shows the greater successes in treating unmutated patients with FCR is with the cohort of patients studied not having the 17P deletion. Those who have both 17P and unmutated IGVH have by in large poor outcomes.

It is my understanding that 17P with unmutated IGHV patients should not be treated with FCR.

[kel555 in reply to Smakwater]

hi yes your right i hope not surely they wouldn't give me fcr if i was 17p unmutated would they aim on the flair trial manchester, thankyou