cll staging

[alice111]

Prior to BR treatment my husband was staged at Binet C. He completed the Chemo in March and has been told he is in complete remission...and will go back to watch & wait,  seeing his Consultant at 3 monthly intervals. I must admit, until we saw a copy of the letter from the Consultant to his GP last week we weren't aware what stage he was, only that his FISH results were good. My question is , does this mean he is now stage A ? ...bit of a silly question I suspect ...

Thank you x

[Cllcanada Top Poster CURE Hero]

Not silly question at all... yes treatment is like hitting the rewind button on an old VCR.

So he would be Stage A again... post treatment... if he fits the criteria... which he appears to.

~chris

[alice111 in reply to Cllcanada]

Thank you for your reply Chris...that's encouraging....x

[wroxham-gb]

Alice

I have been waiting to hear. 

Complete remission is great news, has it sunk in yet? So very pleased for you both and long may it last.

Take care and remember the advice. You both now have your lives back.

My very best wishes are sent.

Sue

[alice111]

Hi Sue, 

Yes it was a good result, only slight cloud on the horizon is a leison on his right kidney which they had assumed was CLL related but apparently is not...he is being referred to Urology now...How are you? Hope all is well 

Best wishes, Alice xx

[wroxham-gb in reply to alice111]

Hope this proves OK Alice. What a dampener, until you know.

Take care.

Sue

[scarletnoir]

Hi there - 

I was stage 2/3 before BR treatment - May-Sept. 2012 - and am still in remission, now on 6 month checkups. Hope your husband also has a long period free from illness.

[alice111]

Thank you , so pleased that you have had such a good remission...hope my husband is as successful xx

[Jenferdog]

Hi, sorry I can't answer your question regards staging but wanted to wish you and your husband well and offer congratulations, but also ask a question if you don't mind? My husband completed 6 rounds of FCR in April, and a month later had a review and blood test with his consultant. The CLL was never shown in normal blood tests results but because he had enlarged nodes which have gone down, and his blood levels were normal, he deemed him to be in remission. In June he will have a CT Scan and another blood test but no BMB is planned, or cytometry test as far as I know, so I cannot see how they will know what kind of remission he will be in. What tests did your husband have? Hope you don't mind my hijacking your question.

Sue x

[alice111 in reply to Jenferdog]

Hi Sue , 

We asked about a BMB and the Consultant was quite surprised .. It appears they don't carry them out routinely .. only when a patient becomes resistant to treatment , or is in a clinical trial .. I found this surprising when you consider that the cancer is in the BM. Consultant felt blood tests and a CT scan were more than adequate . 

This approach appears to be the case in the UK .. 

Very best wishes for your husbands long remission . 

xx

[Jenferdog in reply to alice111]

Thank you, will let you know what the results of the next review are.