Hi All,
I hope you are 'well'. This is my first post.
I was diagnosed with CLL in 2011 aged 44yrs. Have considered myself very fit enjoying long hikes and swimming. In June 2016 I did a 5k charity open water swim in 90minutes.
I now find myself, next week, requiring a 6 x 1month treatment with FCR.
Can anyone help me please with future expectations regarding fitness? I don't know how the drugs will effect me during treatment or the future!
Kind regards,
Robbie
Welcome, From what I have seen on this forum most younger patients do very well with FCR. Most are able to work during the treatment with only a few days off. I would hope your doctor would have good suggestions on when during the cycle to take it easy.
Just wondering if you sought out a second opinion with a CLL specialist? The treatment and testing options have changed a lot in the last few years, and continue to evolve. A hem/onc that does not take an interest in CLL may not be the most up to date.
Best of luck in your treatment.
Nathan
Thanks Nathan,
I appreciate your reply. I got a second opinion from another consultant and he recommended the FCR option also. I have a 7yr daughter and I want to be able to stay fit for her I.e. I want to be fit and active for her but need to manage my expectations.
Any thoughts out there please
What prompted your treatment decision? Seems a bit sudden in the normal course of CLL.
I would ask for a second opinion from a CLL specialist ...you don't mention anything about test you have had, like FISH for example...
Younger age is a HUGE plus factor, however.... everyone handles treatments differently and frankly comparisons don't amount to much.
Its important to stay fit during treatment, it made the road back to good health in my case, fairly easy...
You are in the UK ?... treatment options are a bit different than the U.S.
~chris
Hi Chris,
Thanks for your reply.
I have had several tests e.g. CT scans, bloods etc.
My wbc count is 150, platelets 75, Haemaglobin low, spleen 50% enlarged and several lymphs at around 4cm! I am diagnosed as stage 2 CLL!
Interested to know general effects of FCR and if I can regain my current level of fitness which is very good?
Platelets under 100 is one of the triggers for starting treatment. Your fitness and age should put in an excellent position to start treatment. All the best.
Neil
Diagnosed Stage 2 April this year at age 56. Weight lifter and yoga enthusiast since teens. Spend a ridiculous amount of time outside with greyhounds.
I have experienced tremendous amount of weight loss and feeling just bone weary tired. Espresso helps but... anyway, I just keep pushing on.
After changing diet, specifically what written in Leviticus, and there are several books that back up the science behind it. I've managed to drop to Stage 0. Inflammation of spleen, liver and lymph glands have subsided.
Performance wise in the gym. I work out with weights I typically warmed up with but using different techniques to get the most out of each set.
Another follow up Feb 3 to see if I remain stable. My best to you and this will be a challenge.
Hi Rob,
I am 48 and have just completed my 4th cycle of treatment! Yes you can still remain active but don't expect any personal bests! I speed walk to keep fit and before treatment was averaging 25000 steps a day! Everyone reacts differently to treatment and you will need to pull back and get a feel for what your capable of. I am averaging 18000 steps currently but just after treatment I have 2-3 low days as I ease right back as you will lack energy and your body will have plenty on the go with the drugs they have given you. There will be plenty of time to get back to your best once treatment has been completed. Two pieces of advice I got on day 1 of my first cycle was drink plenty of water to flush your body of the toxins and to remain active. Follow these two to the letter and your recovery between cycles will be smoother. You will need to consider sun protection as you will burn real easy. I was advised to give swimming a miss as your skin will be sensitive to pool chemicals.
You have two good things in your favour! Your young and fit!
Cheers
Brett
Robbie,
I was diagnosed with SLL (stage 4) at the age of 39 in 1994 and had a auto stem cell transplant in 1996 (they wouldn't do this today) and 6 x FC in 2007. In both cases I was told to stay out of the swimming pools until my immunity was back to something like normal levels. I normally swim twice a week and play squash 3-4 times per week and feel reasonably close to where I was before diagnosis. Given that I'm now approaching 62 some drop off in performance is inevitable but I'm still giving the youngsters a hard time both in the water and on court.
Jacques
Hi Robbie,
My husband was diagnosed in 2013 with stage 3 CLL at age 29. He was given the summer to enjoy and then 6 rounds of treatment started late summer (only was able to do 5 rounds). He was very fit before, during and after treatment. Playing Hockey, ball hockey, baseball, gym, swimming and roller hockey. I do recall him wanting to bike home from hospital on one of the hottest days after treatment....I was not in agreement. He took one year off work for treatment but was able to attend all sports activities (go figure!). Our daughter was in her first year of life so while I went back to work, he was able to spend months of quality time with her between treatments. Since treatment he continued to enjoy all regular activists with no restrictions. He does get tired quicker then before but all in all I would say nothing has changed for him in his physical activity. He has been in remission for exactly 3 years now. I do know everyone is different but I too like to hear how others have done. Hope all goes well for you!
Hi.
My husband was diagnosed at 55 and is now 59.
He had 6 months of FCR last year, finishing a year ago.
There are far more informed people on here ( and they've been so helpful and supportive) than I, and I will say what we're always told, that it is different for everyone!
We are in the UK and the staff at our hospital were great.
Paul was advised to have 6 months off work if possible and he was fortunate enough to be able to do that.
He has always been relatively fit, playing a football match 2 or 3 times a week and cycling every day. not quite such an athlete as you, but not bad for his age and I really believe it helped enormously to be fit before chemo started.
We have always eaten a pretty healthy diet most of the time and were completely shocked when he was diagnosed.
The treatment wasn't anywhere near as bad as we imagined but he found he was extremely sick for about 4 days or so each month, felt queasy for a couple and then back to being ok for the rest of the cycle and he had a nasty, itchy rash all over his body.
It wasn't great, but certainly manageable.
I would advise having a chart for when to take medicines, we found that extremely helpful and on the odd occasion when he had to go to the hospital for an slight infection, the doctors thought it was wonderful, because they could see very easily what effects Paul was experiencing each day ( we made a quick note on each of the days); this was also helpful when I rang for advice from their helpline - they really want you to call with any doubts.
He hasn't been able to start back to playing football (he's nearly 60!) because he has been having palpitations, which are being investigated at the moment, but is hoping too!
If I can answer any questions, please ask.
Good luck and regards,
Fran ☺️
Hi All,
Thank you all for your replies and information.
I guess it's a case of fingers crossed and try and remain; fit/healthy and positive minded over the next 6 months.
As suggested I'll keep a diary and will blog information as I go along. Any dietary advice?
Best to all for the New Year,
Robbie
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