What Next ?

[alice111]

My husband has an appointment with his Consultant on Thursday...his first since he finished 6 rounds of BR on 17th March. After round 4  he had a CT scan and we had a copy of a letter in which the Consultant says that he has had a good "partial remission". Last week he had another CT scan and we will get the results this week..however, he has never had a Bone Marrow Biopsy . Should he have one? What other questions should we ask ? Any help much appreciated.. ( he was told his FISH test was " normal " btw ) 

Thank you x

[ballyhoo]

Hoping your husband gets a long Remission. I had a bmb after treatment I think it is routine .

Best wishes to you and your Husband. 

[wroxham-gb]

Hi Alice, and good luck for Thursday. I Believe you will both walk out of the consultants office beaming.

Ididn't have a bmb after treatment stopped so again will depend on the consultant.

Has your husband started to feel better now? Just continue to be wary, you know whatI mean, around people, food etc. Infection of any sort is to be avoided if possible. It pays to be extra careful . we can all still enjoy life. 

Do not forget to let us know how you got on please. We like good news.

My thoughts and best wishes are sent to you both.

Sue

[alice111 in reply to wroxham-gb]

Thank you Sue, very good advice ...I will post again after his appointment....best wishes to you too..I hope you are stay in remission for many years to come x

[Jenferdog]

My husband completed 6 rounds of FCR last month. He was told that if he had any signs of CLL in the blood at all (ie partial remission) he would not need a BMB, but if there were no signs then he would. I am guessing because you husband is in partial remission then there is no need to do the BMB? My husband goes for his bloods next week to find out how he has done.

[alice111 in reply to Jenferdog]

Thank you Jenferdog, I hope your husband is recovering well from FCR and that he has had a good response. Thank you for telling me about the BMB...thats probably the reason he hasn't been offered one..I will ask on Thursday...Please let us know how your husband gets on next week..best wishes x

[Cammie]

Not everyone gets a BMB.

If he was going onto a trial one would be done but it's quite normal to simply look at the blood results.

I would certainly ask for details of the blood results and ask to compare with the tests prior to treatment.

If in partial remission there may be some cll cells left or one of his other measures may not be normal. This may not be anything to concern yourself about. As an example my platelets have always been low and continue to hover around the 100 mark even after successful FCR treatment. Because of this I am classified as partial remission even though all other readings are normal. My consultant used a slightly different phrase when he said"If it wasn't for the platelets I would class you as complete remission "

So ask the question what is causing him to say partial remission?

As we all know cll is classed as incurable at the moment.

Therefore even those classed as complete remission have a chance of relapse so partial remission isn't a bad thing it just means you will need to carry on through watch and wait to see what happens and with all the new treatments about it is likely one of these would be available if and when required.

My advice live life to the full don't worry continue taking appropriate measures to avoid infection and thank god we are starting all over again with a new lease on life.

Best wishes .

Geoff

[alice111 in reply to Cammie]

Hi Geoff, 

Thank you so much for your very helpful reply...its enabled us to get a bit more perspective , especially around the issue of "partial remission " ...

I have been keeping a record of his blood test results and will continue to do so.  

I'm hoping that we will be able to put CLL behind us for a bit !! 

Best wishes for a long and healthy remission. x 

[bronx77]

Hi Alice glad your husband is partial remission You can ask your consultant what is the % of his residual disease that is the exact count of remaining CLL and it is good to record this for reference later the BMB is good to confirm the fish test but more importantly to identify which cromazome mutations he has You will see various people on here discussing this deletion or that deletion or a combination of this is also important to know.it is also good to keep a record of all his FBC counts( full blood)

Best wishes for the future from the stem cell scouser 

[alice111 in reply to bronx77]

Thank you for your reply bronx77 ..I will ask about the % of residual disease....it seems that BMB is not carried out routinely in the UK unless you are in a trial...I have asked about mutations but my husbands consultant is not very forthcoming..in fact , she seems surprised that we we want to know anything !! ( she tells us most of her patient's don't which seems rather odd ) Good luck to  you...hope you have a long remission x

[bronx77 in reply to alice111]

Hi Alice she should always take the time to explain the answers to your questions

Adrian Bloor at the Christie in Manchester is excellent with CCL also the Marsden in London is very good

You haven't said which hospital you are at?? 

In Liverpool BMB is first line with all the Leukaemia to decide which coarse of treatment you need

[alice111 in reply to bronx77]

Hi bronx77,  My husband is not at a specialist hospital for CLL..although his Haematologist assures me that they treat lots of patients and that its their "bread and butter" !! I think he should have had a BMB prior to treatment...maybe they felt it was pointless as he couldn't have FCR and doesn't qualify for Imbrutinib as a 1st line treatment,  so BR was the only option ...I'm going to ask tomorrow but I suspect they will just use the information from his blood results and CT scan...I would have liked him to have a second opinion to be honest but he was reluctant to rock the boat x

[mehall51]

Hi Alice;

I completed 6 rounds of FCR for CLL in July last year. I had a BMB pre chemo to fully determine the level of infiltration, however my consultant deemed the post chemo BMB as unnecessary.  The blood tests and CT scan gave very indication that leukaemia cells were totally detroyed and all nodes and spleen were back to normal size.  Hence I was declared as being in remission (hopefully for many years to come).

Wishing you and your husband all the very best.

onwards and upwards

Mike

[alice111 in reply to mehall51]

Thank you Mike for your very positive reply...we are feeling a but nervous today...hoping for some good news tomorrow...

Wishing you a long and healthy remission.xx

[mehall51]

All the very best

Mike