Look what I found when I entered "hiv leukemia" into google search engine!

I'm amazed by the treatment advances being announced. It may be that my search "hiv leukemia" would be of interest to this forum.

Out of interest I am today; Easter Tuesday, on day 6 of my 2nd course of FRC. I was totally unprepared for the reaction I had! My 1st course was almost event free. However, days 3,4 and 5 on Sat, Sun, Mon but less so today I was so drained of energy that I lay in bed a lot of the time. Nothing else except the debilitating fatigue.

While I know we as individuals all have differing reactions it would be most welcome to hear from those who have experienced FRC -

Do the side effect become more prominent as the courses progress?

Perhaps my shock could be lessened by the knowledge of what may be ahead of me come treatment 3 on May 15!

Regards to all and thank you for being there!

14 Replies

oldestnewest
  • Hi Bribin,

    Hope you're feeling better. Are you referring to the 6 year old girl who was given a form of HIV to cure her ALL? It's just that you haven't added any link.

    Regards,

    zentangle

  • Hi zentangle

    This is the news item I found america.aljazeera.com/watch...

  • I think he is referring to CART19, currently in small clinical trials for CLL. There are a number of different T cells being explored, both at UPENN and at Sloan Kettering, the NIH and Fred Hutchinson... MD Anderson should be launching its ROR1 trials soon as well.

    This is still experimental and years away... it might replace stem cell transplants one day, but much needs to be done.

  • Hi Bribin, That's pretty impressive by anybody's standard! I think you should make a clear post with the link on here.

    Regards

    zentangle

  • Hello Bribin,

    I am responding to the second part of your post about experiences of FCR. I am having a similar experience to you although it is early days. I had my first dose a week ago and for the first few days I was wondering what the Dr had been going on about fatigue. Then day four I started feeling really tired and achey. I had gone to an Easter meal with the in-laws but by the time of having dessert I could barely keep my arms up and had to make my excuses and leave pretty soon after to go home to bed. Day 5 was the same, I was able to get up showered and dressed but then had to spend the whole day on the sofa and turn visitors away. I was wondering if anyone else experiences a particular ache in their joints, the only way I can describe it is as if there is acid building up and resting doesn't help, feels like I need to move to pump it out. Day 6 I felt stronger and was able to attend a meeting with my employer to discuss my future contract and today I feel almost normal again. I have noticed that my lymph nodes have reduced in size already. I am more apprehensive about round two because this time I know what to expect! Any other experiences would be welcomed especially about what to expect as we enter the later cycles (just realised how much I have waffled on about my own!)

    Sarah

  • Hi Sarah. I sympathise with you! All I can advise is be prepared and don't despair. Think of the positives (see sparkio's post in this conversation). I don't cherish the thought of my ongoing treatments but if there is light at the end of it, then bring it on.

  • Hi all, I completed my FCR in February and was told I am in remission in March. FCR worked very well for me ( I have SLL ), in fact I always doubted whether it would work at all. But those deep down concerns, that genuinely frightened me if I am honest, were due to the lack of confidence I had in the treatments that we are given today, and were totally unfounded. As regards my own personal reaction to FCR (which do affect us all differently!! ) were not good. Regimens 1 and 2 were pretty much trouble free, number 3 I was very sick for days 3,4,5 & 6 and very tired. I was given different anti sickness drugs for the last 3 regimens that stopped me being sick but did not stop the nausea. My fatigue, nausea and the taste of metal in my mouth got worse after each of regimens 4,5 & 6. After regimen number 6, the last one, I was very ill for 2 weeks and very, very low mentally. Now 2/3 months later I feel fantastic, fit ,healthy and totally back to normal. The FCR treatment was not very pleasant for me personally and you guys may react differently to me . If you don't, I do want to assure you that it is totally worth it, I am 43 and totally back to the person I was ,running, MTBiking, and fitter than ever. Lets be honest, chemo is not good, but it has given me a chance to go and enjoy my life.

    The best of luck to you all in the future, regards Mark

  • Hi sparkio. Glad to hear your great result. It's like my grannie says "take your medicine - it will do you good"

  • Good post Mark, haven't heard from you in a while. Hope you're keeping well -certainly sounds like it.

    Regards

    Steve

    zentangle

  • All good mate thank you, not been on for a while. Spent the weekend over indulging on stella artois

  • Hi Bribin, I have just complete 6 rounds of FCR. I struggled a little during the first 3 rounds (partly because I have a heart condition) and also because my neuts fell dramatically resulting in a reduced dose of the 'F' component for rounds 2 and 3.

    Once I was stabilized the final 3 rounds went well. The only difference I noticed was that the nausea increased for me during the final round. Fatigue was less of a problem as I kept as active as possible (walking to shops, general household jobs, small garden tasks etc) though I did feel exhausted following some activities. I'm in my 60s so all things considered I surprised my doctors by even completing 6 rounds of FCR. I'm now attending the gym twice a week.

    Get my final results in 2 months but I'm feeling optimistic. Hope all goes well for you and all those in or approaching treatment.

  • Hi fieldmeadow really hope your news will be good. Alas, like Sarah, there were times when it was a struggle to keep my head up! It made fear the follow on treatments but I am buoyed by sparkio and his trials and ultimate reprieve from the doldrums.

  • It's good to hear others experiences because although my approach is to remain positive and strong, I also like to be realistic! Sounds like a bit of a rollacoster that we just have to ride. I am 29 so am hoping that will help me cope with chemo but am also keen to remain as fit as possible by walking and cycling when I can. It's great to hear Sparkio and Fieldmeadow feel so good so soon after finishing the 6 cycles, which was going to be my next question as I am so keen to get this out the way & continue with my newly married life and hopefully be fit enough for children as soon after as possible.

  • Hi I too had a bad experience of FCR. It made me very sick but was given six different anti sickness pills to help. My blood levels got so low (even with injections to bring them back up for the next cycle) that cycle 5 + 6 were given at 75% dose. I still have low bloods but no sign of the cll 4yrs later. Good luck with the treatment.

You may also like...