Sorry to hear your news, but do hope that obtaining that second opinion has brought you some assurance that you are taking the right path. While we generally don't have to rush into CLL treatment, waiting too long is not advisable either. I hope the 18 months grace period has helped you prepare for this next stage in your CLL journey and that you will be one of those patients that quickly finds greatly renewed energy from treatment. Hold onto that hope that you may fall into that category of CLL patients that can be cured by FCR.
Totally at peace now Neil. Really confident in my CLL specialist who was both kind and smart. Have accepted it and I am really grateful - I got my daughter through her final second level exams and into college, handled a major house renovation project and got to move house before needing treatment.
You are also right - the idea of perhaps no longer feeling exhausted and walking around with huge lymph nodes is comforting!
Thanks....I am going to try turmeric...I am still in the wait and watch......
Did Fcr treatment. Not bad. Weak. Rested a lot. Never stop being happy. Several blood transfusions during first couple rounds. Doctor pleased with results.
After my first round of FCR, my lymph nodes went down A LOT and I felt like i had A LOT more energy. I too though have had some "hiccups in the road" after round 2 & now 3, definitely need rest (not as much as before though!) but to see the #'s is amazing...I haven't had this low of WBC since 2006- way before I was diagnosed. I wish you the best of luck and if you have any questions, I am going through it now. I am about done with round 3. I will be happy to answer anything I can!
That's brilliant - fantastic to be in touch with someone already in the road and great to hear sbout the reduction in lymph nodes and bloods. Hope the next rounds go smoothly for you and I will let you know how it's going this end.
Best wishes sent on the start of your FCR Journey. Always remember it is the gold star treatment and works well. You will be monitored closely and well looked after by all the clinical staff. Couple of tips, always report any side effects(if they do not know they cannot help), drink as much water as you can and keep away from too many people, ie big shops, crowds etc.
as I recall 70% get at least five years before needing further treatment after six rounds of FCR. All the best. oh by the way I started training for the London marathon half way through my FCR in 2007 (June to December). Completed the London Marathon in April 2008. Ran 10k in December 2007 in 66 minutes, a week after finishing FCR.
basically my experience was feeling very rotten for a week each month, and good for a fortnight each month. The first couple of rounds do most of the work and after that you can probably really start power walking and be fit after FCR. During the first couple of rounds if you can its probably a good idea to get outside for a gentle walk each day when you are not feeling sick (3/4 of the time).
Wishing you lots of luck on your new journey. Hope it goes smoothly for you and Will look forward to following your future posts to see how you are doing.
I was both sorry and pleased to read the news of your impending treatment. Sorry that it's become necessary and so soon following dx but pleased that it will give you the release from the fatigue and enlarged lymph nodes you're enduring.
What a shame it couldn't have started after Christmas for you though. The major thing is you sound to be psychologically reconciled to the idea and I think that's a real 'biggie' in this. Plus FCR can be spectacularly successful for the right candidates!
I hope that's you Kate and I hope it's uneventful. We'll be willing you on throughout and sending huge best wishes for a successful outcome.
What a lovely post New Dawn. Thank you. I am feeling reconciled to it all, hopeful but also a little fearful! Actually, now the decision has been taken I just want to get on with it and get out the other side. I hope others here will benefit from my posts through FCR as I'm planning. Keep well New Dawn.
I finished FCR in Sept 2012, and had far more energy even after the 1st treatment. Apart from feeling a bit rough for the first week it was OK. I had to stop the R due to an allergic reaction after the 2nd round. Three years on my bloods are all normal, I do get very tired if I over do things and it takes a few days to recover, but I live a normal life and do everything that I want to within reason. I had 10 days in hospital in 2013 with an unknown infection and was pumped full of antibiotics, but other than that I have had no problems. I wish you all the best with your treatment.
FCR fell within the Christmas period for me too and although I was not up to eating our roast dinner (you can feel nauseous between days 3 and 10) I was fine during Boxing Day so made up for it! Having treatment around that time also resulted in the whole family taking over cooking duties, which was great!
I completed 6 rounds of FCR over 18 months ago, even with cardiac issues. But 6 rounds is not set in stone. Your bloods will be taken between each round to see how you are responding to the treatment so you may required fewer rounds. Many doctors seem to suggest 6 rounds to give optimum remission. The downside is that the toxic elements can hit your immune system too hard so that (like mine) it may never fully recover.
However, I gained MRD negative status which should give me a very long remission and I have more energy for our baby granddaughter. Treatment can give you a future. Hope yours is bright and long.
HI KateEvaLen - Sorry you're joining the club, but I hope and will pray that all goes well for you. I started FCR less than 60 days from my diagnosis, and am now on a 2 year maintenance program. Chemo was not as difficult or as dreadful as I had anticipated. Give your self time to slow down and rest during each cycle - and stay hydrated. It helps. Take care.
Thanks. Bloodwork is fairly steady. The program is Rituxan infusion every other month. 1year left on the program. Very much looking to getting done, but it's not bad. I am able to work, energy is good. Take care.
I started FCR December 2014, and had my last in May of this year. I tolerated the treatments very well, although I did lose some weight. Now the weight is mostly back, I feel great, and have the energy of someone several years younger! Life is good.
Hope all goes well for you, try and stay positive. 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 can be comforting. I had my FCR chemo in 2011 and am now feeling much better than I ever thought I would be. I had some ups and downs during my treatment but four years on and here I am. Good Luck and best wishes.
Hi KateEvaLen,I just wanted to let you know you will be in my thoughts and prayers and I look forward to hearing how you are doing.Good luck and best wishes for a long remission ,Pumpkin
I too will be starting my journey in December, but a slightly different path of Nordic Protocol chemotherapy to deal with the MCL aspect of my composite disease (CLL/MCL).
Hi Steve. Wishing you the very best of luck on your treatment path.
My specialist spoke about the FLAIR trial and a new trial in the works whose name I have forgotten! He also spoke at length about Ibrutinib, Idealisib, ABT 199 and the second generation drugs that are coming. Not soon enough for me though but hopefully for others who can wait a little longer!
I'm in a similar situation, although I haven't had a lot of time to get my head round it,only diagnosed 5 weeks ago and need treatment ,not sure what is the best if you know one day it will happen?
Have fantastic family and friends and have to also get my daughter through her A levels ,so have to stay positive.
Hope all goes well and keep us informed as to how you go as it scares me as to how i will feel.?I also have to decide whether to go for fcr or the flair trial.
Sorry to hear that you have to face treatment so soon after diagnosis. The only bit of advice I can give you is the good advice I received that is get a second opinion before embarking in treatment from a cll specialist.
Wishing you the very best and do stay in touch - great support and help on this forum.
I too had treatment 20 months after diagnosis. I had FCR last Nov- April 2015. It went well and my lymph nodes shrunk by the end of first treatment. Drink lots to keep hydrated and take meds as prescribed. Especially for nausea. I only had a mild loss of appetite for a few days but I believe the anti-nausea meds really helped. I too quite nervous about starting treatment- you just don't know what to expect but it really was ok. I didn't need any transfusions and definitely feel better. I hope you have a similar experience. JoanMary
Thanks for sharing your experience. It's very comforting and hopeful. It's amazing how good it is to hear from fellow CLL patients sbout their experience. I hope you have a long remission and all remains good!
Best of luck to you. I hope the side effects are not too hard on you. I'm just about to finish up my 6th and final round of BR and am looking forward to being treatment free for a good long time (God willing).
Just to reassure you ( and I know everyone is different ) but my husband (58) has just finished 6 rounds of FCR and we are awaiting results of how the last lot went, this week.
I'm sure you'll be fine- he had a not very nice month for the first one but in subsequent rounds the only problem (easy for me to say😊) was the nausea, which lasted only a few days each month. I suggest you start taking the anti nausea Meds before you feel sick - they work much better like that😉
If you have any questions that I can answer from our experience, again, please ask- happy to tell you anything .
Thanks Fran and I will take you up on that offer. WHEN your husband gets good report from his final cycle, please do share as it will give me, and I'm sure others, hope.
Hoping you both get to enjoy life together cancer free for years to come.
Thanks. Will do! He's been the love of my life since we were 15, 38 years extremely happily married, so it was an emormous shock but we've been through it together and are hoping for positive outcomes, like everyone else. Good luck! Fran 😊
Hi I wish you all the best of luck but remember that each of us are different and some of us experience a very difficult time so be prepared for that as well. Best wishes
To wish you well and to thank you for your positiveness. Reading your posts and others responses is so helpful. I think it is obvious this community will be thinking of you.
I am in W&W and being informed by yourself and others. I will follow you posts with interest.
Thank you and you are right - it is empowering for all of us to share real experiences in this safe environment and I for one would be lost without the knowledge and support of all contributors but most especially Aussie Neil and New Dawn.
Firstly, congratulations on getting through all of those milestones with CLL! And for your positivity. And secondly, wishing you every best wish and success for this next part of your CLL journey. We will all be thinking of you. It would be great if you could keep us updated on how it goes (when you feel ready to!). I hope it's not too tough going and of course the reason for treatment is to make you feel better!!, so I'm delighted for you that you will be out power walking again very soon and able to enjoy life to the full.
On a personal level, selfishly it's great to hear that you've got a good consultant and I'd be really grateful if you felt comfortable in sharing his name (and of course understand if you'd rather not).
Take care, I'll be thinking about you, sending you hugs - and high fives for how great you'll be feeling soon, please God
Sorry to hear your news about CLL, but rest assured FCR is the gold treatment standard, tried and trusted.
Like you my consultant suggested 6 cycles of FCR, I only need 4 as they were pleased with my blood results after that cycle.
I would also suggest avoiding large crowds such as shopping centres, pubs,
travelling on public transport especially during rush hour, drink lots of water and carrying hand gel with you when you go out. If you have to go to places go when it quieter in the week.
One other point try to get someone to drive you to your appointment and pick you up, I found care to drive a voluntary organisation here in Ireland a God send as it was one less thing on mind after treatment.
I am now 2.5 years in remission after my FCR treatment and still going strong.
Just to say I hope your treatment is going well and you get great results. Your post and subsequent replies have cheered me up a lot as my dear mum who is 58 is about to start FCR in January (if she doesn't choose to do the FLAIR trial or get accepted and even then there's a 50/50 chance she'll get FCR). She is so worried and nervous about the treatment and what might lie ahead, but I will read her some of the positives here to make her feel less scared.
Please god your mum gets the new drugs but if it is FCR it is not easy but very manageable. She is very lucky to have such a caring daughter - my daughter is 19 by the way so I know how important your support is to your mum. I'll tell you something I'm sure she would tell you herself - do give her every support but also look after yourself. Enjoy life, see your friends, laugh and have fun, travel, do whatever brings you happiness while keeping space for your mum too.
All will be well. Treatments are bearable and their are lots of options coming on stream. Don't worry too much.
I'm just home from the hospital from day one of cycle two of FCR and I'm fine. A little woozy but grand. I plan to do a post when the worst if the nausea is over - probably Sunday! Take care of yourself and thank you - it's good to know that my posts helped you. It gave me a real lift in spirits tonight.
Good luck to you KateEvaLen, do be careful to avoid crowds, airplanes etc. Be vigilant and get treatment right away if any fevers etc. FCR is very powerful and I understand still the most effective tool against CLL, but it is fearsome all around. I hope for the very best results for you.
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Fcr update
