After the third dose of the treatment, I think my body got over the treatment more quickly. I felt very nauseous for 5 days, but then much better and more like myself.
Has anyone else felt the same? Maybe my body is better at dealing with the chemo now?
Still neutrophenic after the treatment though, so back on the injections.
Mandy,
I was the oposite. My first treatment of FCR was not bad at all and they got worse as the months went by. I only made it through four months because all of my blood counts dropped like a rock and I was hospitalized for a week. My doctor said that I can never have FCR again because it has a bad affect om me.
Good luck with the rest of your treatments. I hope they continue to get more and more tollerable.
Chris
Good for you Mandy - though each round of FCR can be different even for the same patient, I am pleased to hear you are dooing so well. Good luck and may your remission be a long one. HALF WAY THERE ! ! !
Hi Mandy
Been thinking about you! I plan to update my experience after I see my doc on Friday. I just finished round 2 of FCR. So I can't help with after 3rd.
Went well but noticed the little bit of tiredness I only had for one day after first chemo, the second time was 2 days. Waiting to see what happens today. I was never nauseous but felt more like "indigestion". More burping, slight knot in stomach for 2 days. Less appetite for 3 days instead of the 2 first time around. I took one zofran to help then never needed again. Neulasta shot went well. No reaction. I am thinking my 3rd cycle will be more accumulative if I am going by the second experience.
I was spoiled first treatment cuz I was admitted to hospital 4 days so I constantly had blood work to show my progress. Now I have to wait a week to see them. Then weekly tests till next round.
Glad u got thru the nauseous days. Hopefully rest of the month is back to normal routine.
You mentioned neutropenic...what shots and how often do you take? Does that mean you get blood tests more often to check? How was your blood test and did your nodes shrink? Hugs!
Nice to hear from you and glad that your second round has gone OK, even though you have more reaction, it doesn’t sound too bad.
The injections are CSGF, a sort of growth factor that stimulates the bone marrow. I did give them myself last time, but have chickened out this time and the district nurse calls each day instead. It’s a week’s course. The blood test a week after the FRC was a bit low - HB 88, WBC - 0.8, neutrophils 0.5, platelets 139. I go back next week for more blood tests before next chemo, so hopefully there’ll be a big improvement. I didn’t really have any nodes before treatment. One under my arm I couldn’t feel. My spleen was huge though and it has shrunk to pretty much normal now, so things appear to be going in the right direction. Keep us posted on your progress and hugs and best wishes to you. X
Fab news Mandy to know you’re starting to keep bit better
Ask about Akynzeo. Made a big difference on the sickness/nausea front. X
Thank you, I will. Xx
Hi Mandy
I was also thinking of you. I’m so glad your feeling good. I haven’t done treatment yet and hope when the time comes it’ll be good.
Please keep us posted.
Love
Flavia
My experience was the same as yours.
I have completed three of six FCR treatments. The third was a lot easier than the first two. I still walked around like a zombie for a week, and had the nausea and headache while taking the CR. But my recovery was quicker and stronger than on the first two occasions.
Next treatment at the end of July, and I am looking forward to getting that one behind me in the same fashion!
Fingers crossed for us both that the pattern continues!
I am 2 weeks into round 3 FCR. Feel fine. I felt no change in responses cycles 1 thru to 3. Also neutropenic. No injections, yet.
FCR affects in different ways. My enquiries suggest 25% to 30% have no major reaction, feel well. I know 20% fail to complete cos of side effects.
The big question we need to ask is "Do we need the full 6 cycles?" And how best to assess response to treatment. MRD... Minimal Residual Disease NEGATIVE is what we want. How is that tested?
All of us on FCR need to ask that question of our CLL specialists. And share the answers.
If we are MRD neg at 4 cycles, further FCR will more harm and no good.
My haematology team are pushing me to 6 to achieve "deep remission". What is deep remission? How is that tested? I've asked. Waiting for answer.
Please share thoughts.
Thank you for the post!
I am not sure if it's locked though.
Jig. UK
I asked after round 1 (when my lymphocyte count dropped to near zero) why it was necessary to complete more cycles (I was a bit naïve then). My consultant simply said 'it's because research shows that 6 treatments is the most effective and has the best outcome.' In the event I had 5.
Take care, John
Thanks, that’s really interesting. I asked my oncologist the same question, as my WBC dropped to normal after the first session and he also said that six had been shown to have the optimum outcome and also, if they stop stopped at one treatment, the counts would probably rise again. I’d like to ask him about the research that shows that six can be harmful if the MRD is good after 4 treatments. Would you be able to send me a link or name the source for that, so I can refer him to it?
Thanks so much for your reply.
I don't have that link.
I will share my journey tho -
Await a post or 2 in a month or so.
I have the same question. I'm feeling great after 4 cycles of FCR and my blood counts good. With the increased risk of secondary cancer from FCR, why continue if I am already MRD negative (which I don't know yet)?
Here are some references regarding stopping FCR early upon reaching MRD negative :
Minimal residual disease (MRD) in CLL: Is it clinically relevant?
youtube.com/watch?v=q6YH1ok...
Eliminating minimal residual disease as a therapeutic end point
bloodjournal.org/content/12...
Eradication of bone marrow minimal residual disease may prompt early treatment discontinuation in CLL
bloodjournal.org/content/12...
I have decided to get an evaluation of MRD in the bone marrow and will only continue further cycles of FCR if I am MRD positive.
Thanks very much for that and I’ve read the paper, or as much of it as I could understand! The conclusion appears to be that for MRD monitoring to be a reality, more sensitive monitoring detection equipment is needed. It also said that this was a small study and more, larger, studies are required. I don’t think my oncologist is going to be either willing or able to tell me if I am MRD at stage 4, if I’ve read this correctly. Does anyone else have any experience where they have had MRD testing after session 4 of FCR?
Hi Mandy
Check out these posts
healthunlocked.com/cllsuppo...
healthunlocked.com/cllsuppo...
healthunlocked.com/cllsuppo...
My doctor has informed me that, despite being a university hospital in a major city, my hospital does not do MRD testing. So I have asked for a second opinion at a hospital that does.
While the data supporting stopping once MRD -ve has been reached do not come from a clinical trial, you have to balance imperfect information against the risk of developing a secondary cancer from FCR (10 to 15% higher as I understand it) as well as the potential damage to the immune system. I have read posts on this forum from people who had transfusions and other treatments to deal with a weakened immune system post-FCR.
I have yet to come across studies or information which demonstrate that stopping early when MRD -ve has been reached has negative consequences.
Thank you so much for all that information. It is pretty compelling if we in the UK can just get an MRD test. You mentioned that your hospital doesn’t do the test, was it tricky to find one that does?
My request for a second opinion was sent last week. Being mid-summer I expect it will take some time before I actually see a doctor for the second opinion, then have the test and so on... À suivre, as we say in French.
FCR soon/confused
FLAIR Trial - FCR for me
Outstanding third opinion.
FCR Round One Down - 5 to go....
CLL 11q del, CD38+ unmutated and my bumpy ride during the FCR treatment.
