Hello there! Well I've started my first course of FCR and it's going ok. Only thing I've had to contend with was a bit of nausea. I read an article a few weeks ago on this site about length of treatment but I can't seem to find it now. As far as I can remember it was written by an American female Cll specialist. Can anyone forward it to me please?
Length of FCR treatment : Hello there! Well I've... - CLL Support
Length of FCR treatment
Can't remember seeing that article but so pleased its going well for you
I don't remember such an article, although it has been talked about in discussions a number of times. I think the maximum is six cycles due to toxicity concerns. Some people do have lesser cycles for a number of varying reasons. In my case results from peripheral blood testing looked good after four and five cycles, however the consultant recommended continuing to six to try to deepen the effect and get a better remission.
rob
Hi Rob, what reviews do you have after treatment?
Review was first day of following cycle. So, review of cycle 1 happened on first day of cycle 2 before starting treatment. Then day after end of sixth cycle and three months after end of sixth cycle. All had full blood test. On the end plus three months also had BMB and CT scan.
Thanks Rob, and from that you were given a MRD status? Still getting my head round all this.
I did not achieve MRD negative. I made remission and MRD positive, which is not as good as MRD -ve. The way I think it was explained to me is the deeper the remission (MRD negative being the best to my knowledge) the longer the remission could potentially be. Of course there are other factors but it is a good starting point.
What you need to remember is that the accuracy of checking is improving all the time so what appeared to be good say 20 years ago is not not considered so. The following bit I've worded a few times, hopefully it comes across OK.
20 years ago the monitoring could spot a football in a room, now it can spot a pea in a room. So, because we can see more now the treatments have to be much better to be able to say "cant see anything", which is of course good news for us. I hope that makes sense.
Warning: No medical training, just an inquisitive mind, others on here understand these things better than I.
rob
Makes perfect sense to me, thank you for that.
Having said that, things are always changing. Chris (CLLCanada) posted a 1m39sec video about MRD -ve in last 24 hours. Title of post is MRD- more complex now.
Worth a watch, basically saying MRD -ve valid for immunochemotherapies (eg FCR) but possibly not so for the new therapies.
Very short, however, very interesting.
rob
I was told six sessions of treatment. But after four my blood levels were back to normal. However my consultant recommended complete the six sessions for a longer period of remission. It was the last two however that gave me the worst side effects.
Foolish
The nausea is really the pits although some don't feel it I felt ghastly for the six sessions getting accumulatively worse as they went on. Have you tried travel bands? They are wrist bands available in any chemists for sea sickness but they work for any sickness by pressing on the acupressure point for nausea. Also avoiding all acidic foods, such as orange juice or coffee helped me. Good luck, hopefully the remission is worth it in the end.
My doctor in Kansas City had me stop at 4 because of toxicity. When I saw Dr. Thompson at MDAnderson, he was glad I stopped. My bone marrow showed 1 percent CLL cells, so I did not achieve MRD negatively, but that is still great. I just returned from second checkup, and am still doing well. Because I am unmutated, my remission will probably only last a couple of years, but then they will try vevetoclax and Ibrutinib. Just weigh side effects and toxicity with what you will achieve with six. Honestly, who knows if I should have, but so far 4 is working.
I have just finished round 5 of 6 FCR sessions. Not much in the way of side effects. As for the nausea hopefully you have been proscribed Ondansetron which is the gold standard for keeping it at bay. The other important pill to have available is Prochlorperazine which can be taken even though you may have taken the Ondanseetron as soon as any quesiness starts to knock it out.
My husband had 6 rounds in 2016 and is still in remission. Hope all goes well for you kenn.jenny uk