CLL Support Association

What next

OH has now had 4 cycles of FCR, and last blood test show almost complete (but not quite total) success. Haematologist is now saying stop, as treatment is more toxic than residual problem.

Question - any ideas how long a remission is likely to last?

Also how long before he is going to be firing on all cylinders? Generally very fit and strong, but chemo has been hard for him to endure because of fatigue.

We are both full time alpine ski instructors, winter is 3 months away - hoping to be fit and ready to start again on skis then.

Any input would be helpful, thanks.

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It's great to hear that your OH has responded so well to FCR after only 4 cycles, but as to how long his remission will last, it could be anywhere from months to indefinitely - as in 10 years plus. There are prognostic indicators that can narrow that down statistically, but I couldn't find any mention of them in your previous posts. If you are able to get a report on his Minimal Residual Disease status (lower correlates to a longer remission), or his IGHV mutation status (or failing that his CD38 and/or ZAP-70 results) or any other FISH test results, then that can narrow down the likely remission time.

Recovery time also varies considerably, though being fit before starting treatment also correlates with a faster recovery time.

I hope you are both on the slopes per usual this winter.

Neil

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Thanks - I have all the info, just not easily to hand. Need to sit down and sift through the paperwork ...

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I was stopped after cycle 5 because of the excellent results.

Yes very possible to be on the slopes again in 3 months but care is still needed to avoid infection and rest days will be needed.

Everyone is different in response and recovery but fatigue gradually goes.

At 6 months I felt that a cloud had been lifted and for many years I'd lived in a lifeless fog. You will notice a new husband who needs to take it step by step.

Remission times? Me 1 year on and AlC still below 1 apparently that is a good sign.

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My husband was stopped after his 3rd round of FCR. It's been 8 weeks now, he's regained a good bit of strength and just wants to go fishing. We still have to be cautious due to compromised immunity and possibly bruises or bleeding. He's not 100% but much improved.

We are looking at being placed on Ibrutinib though in near future. Waiting now on Medicare here in US.

Enjoy your ski trip. Be gentle on him if he only has half strength though.

Sincerely,

Farrpottery

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Hi there - just in the middle of my 6th cycle of FCR. Apparently it is proving successful although consultant appointments in October and November will say one way or another. I always feel fine after two weeks, ready for anything, then typically overdo it and crash again. I've been told remission might be years - certainly that's what I'm hoping!

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Hello there - have dig out some of the figures, in the hope they mean something to you:

IGHV/Allele - IGHV4-30-4*01 (IgG)

Percent identity to germline 94.16%

Mutated

The CLL specialist in Sothampton said 'results are consistent with low risk 13q deletion and mutated IGHV).

Last blood test has CD38 at 14%

So if you can throw any light on this, I'd be extremely grateful. Seeing usual haematologist next week, but we have to take into actual language and cultural differences - we are Brits in France - good language skills, but you always want to be extra certain when talking seriously.

Thanks in advance for any insights.

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It appears that he is 13q mutated, and this group does extemely well on FCR, often obtaining 10 year plus remissions in about 80% of patients as Neil mentioned.

However, every patient is different so there are no guarantees and remissions can vary due to other factors, some which are not fully understood.

As far as recovery, again huge variation, but your OHs immune system will be out of wack for at least a few months, and one aspect his CD4T cells, could be reduced for up to a year...

So, he needs to learn his physical limits and stay within that box... it will improve over time, however.

~chris

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Thanks - biggest problem is persuading him that he is no longer superman! He's always been very fit and active; am now working hard to convince him to start slowly, and that he probably won't be functioning at 100% for quite some time. But is guess his body will tell him that as well.

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