Relapsing after remission

[dianejoyce]

I've been in remission for about two years now. Just came from a routine 6 month check-up. My Hematologist noticed that my platelets have dropped below normal and that my absolute lymphocytes are above normal. I will checked again in three months. Has anyone relapsed from remission? If so, did they go back into watch and wait or did they start treatment. I realize that everyone and everyone's treatment is unique to them

[Hidden]

how did you go into remission-was any therapy used, how far below normal are platelets,how much above normal are absolute lymphocytes.

[Hidden]

Not the results you wanted but we all know it’s part of our cancer at present. I was told by a U.K. consultant that when I relapsed the process of watch and wait continues until bloods and symptoms warrant treatment.

This hasn’t happened to me yet but it’s always a thought lodged at the back of my brain.

Best Wishes

[dianejoyce in reply to Hidden]

Thank you so much. I was in watch and wait for many years before treatment and hope to do the same again if my numbers are consistently out of range.

[Jm954 Administrator]

Dear Diane, I’m both sorry and surprised to hear your CLL might be relapsing after such a relatively short time after FCR, especially with your 13q markers. I’m not sure if you had your mutation status tested but if you are unmutated then that could account for your shorter remission.

This might be just a blip in your counts but if it’s not, then yes, there will be a period of watch and wait again, the length of time will depending on how quickly your CLL is relapsing.

If you need treatment again, please make sure you have your genetic markers done again for 17p etc and the CD49d marker. Chemo-immunotherapy would not be a good option if you need further treatment but there are plenty of non chemo options as you know.

I’m hoping it was a blip and you have many years of remission yet.

Jackie

[JigFettler Volunteer in reply to Jm954]

Good point Jackie. I know in the UK markers will always be retested b4 further treatment.

Jig

[dianejoyce in reply to Jm954]

Thank you very much for your kindness Jackie. I'm hoping that it's just a blip. But if it isn't, I'll just move forward. I'm a tough old bird! I really appreciate the information concerning retesting for deletions. My Hematologist is excellent, so I'm sure he will do that if and when that time comes.

[Jm954 Administrator in reply to dianejoyce]

A good doctor is the most important thing

The CD49d is not often tested for - it's a flow test and a positive result is likely to be predictive of a poorer response to Ibrutinib - worth knowing if you have a choice of treatment.

Keep us updated on how you are, all the best

Jackie

[Big_Dee]

Hello dianejoyce

We are all on W&W forever.

[ETFitz1]

Hello,

I have relapsed from remission 3 times. I was never at Watch & Wait status but went directly into the newest treatment. Fortunately, I've had lasting success with Imbruvica and have been happily in continuous remission for 5 years.

Best of luck. I'm happy to give you more information if you'd like.

Jennifer