Hello Dear Support Group, I had intense FDR in 2010, had to stop because of toxicity. I did not loose my hair, but my hemotologist told me I would. Is it common not to loose hair during cll treatment? Also, shy of unmutated illness and without other flags, I am a basic cller, indolent, but my lymphnodes were large at diagnosis and a biopsy concluded stage 4 sll. I wonder if any of you had long remission with FDR and what happens if it comes back just a little, not showing many positive cancer cells in flow cementry. I have my next check in December, but if statistics I read on this site are correct I could be in w&w for a long time. I guess I have three questions.
1. Does anyone lose their hair? 2. If I am not aggressive, zap 70 or mutated I have the liberty hood of living a normal life? 3. If it is only a little bit back w&w could be a lifer?
Thank you, anything you can offer would be tremendous help. Thank you, Kimsome
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Kimsome
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I think your treatment was FCR. Some patients do experience hair thinning, but total hair loss would be very rare... and even if you had thinning the hair grows back in a few months after treatment... often more than previous to treatment.
FCR for many patients has given them exceptionally long remissions, upward to 12-14 years, but this is a select group, of 13q and mutated...
Nobody can say how long they will live... healthy or with CLL...but new treatments are less toxic, but it is still too early to say if CLLers will have a normal life span.
CLL is incurable, so it is always with us... how much it returns after treatment or remission is anyone's guess, but there are new treatments becoming available that should keep it in check for some time...
By FDR do you mean Fludarabine monotherapy? When Fludarabine is combined with Cyclophosphamide and Rituximab (FCR), hair loss can occur, but is not common. Hair loss is considerably more common with other cancer chemotherapy treatments than it is for CLL treatments. Surely your other questions are far more important - after all, you didn't lose your hair .
Do you know your present status with regard to Zap 70 or mutated/unmutated, etc? You really need to know your latest results after treatment for a better answer. Even that can only be a guide for a group of people with the same markers. With our current understanding of CLL prognostic factors, it will be many years if ever, before predictions for individual CLL patients are possible.
Try not to worry about CLL returning and get on with enjoying your remission.
Hi Kim - I had six rounds of FCR with no significant hair loss. I had very slight thinning that only I would notice. No-matter what your age it is a relief to retain your crown of glory! Hope this helps.
I was told thinning hair possible but really didn't have a problem.
You should be trying to live a normal life in so much as doing the things you want to do,enjoying any family and friends etc.
As far as remission is concerned this varies greatly and as detailed in the post by Chris great results have been obtained with FCR with many getting 10 plus years but that does vary with individuals.
As was also said CLL is currently incurable so the chance of it returning is always there!
The best thing us CLLers can do after successful treatment is live our life to the full whilst we can! This may be for a short or longer time but if you are getting the most out of life it doesn't really matter. We can always do the next treatment then start our life all over again.
My view is that I will live with cll if it reoccurs I will deal with it again then get back to living life to the full.
Don't want anyone to feel sorry for me because cll has made me value my time and those periods where I am well and can enjoy things. Before diagnosis I was working all hours, totally involved in the rat race, never had time for my self nor my family. Today I spend time with my family when I can, play golf with my mates take holidays when I can afford them never say no to an invitation etc.
If this lasts for a few years we will kick its butt again and start again!
If things are not good at least I would have lived during my good times so will have lost nothing!
Hi kim, following my fcr treatment my hai thinned quite a bit. This lasted some time but others rarely noticed. I'm now ten months after treatment and have started running again. Life is good so enjoy. Lol do11y.
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