MRD negative

[Fowey2009]

After 6 rounds of FCR (2 rounds of 5 x days F&C, and 4 rounds with just 3 days of taking the tablets) we got the results of my husband's bone marrow biopsy yesterday. It was the best possible news - he is MRD negative ( minimal residual disease) ie complete remission. It was tough, but obviously worth it

(Background info - he was diagnosed March 2013 (aged 56); started treatment Jan 2015. FISH undertaken before treatment shows he has Trisomy 12 - which apparently responds very well to FCR)

I hope this will give hope to others facing a similar situation

Beryl

[Cllcanada Top Poster CURE Hero]

Wonderful news Beryl!

Couldn't get a better response...

~chris

[Fowey2009 in reply to Cllcanada]

Thank you. And thank you and Neil particularly for all your informed postings on here. We have learned so much from them

[AussieNeil Partner Administrator in reply to Fowey2009]

Beryl, that is indeed fantastic news and I hope you can both celebrate having your lives back, after observing your husband's worsening CLL require treatment less than 2 years after diagnosis.

Our community now has many thousands of years of collective experience of living with CLL, so thanks for being a part of that and providing reassurance to those of us following in your husband's footsteps - including me. Unlike Chris and many others here, I'm still treatment naive. That's the beauty of this community; we can all learn from each other and rejoice when we hear good news like yours.

Neil

[Fowey2009 in reply to AussieNeil]

Thank you - as I said above, we are particularly grateful to you and Chris. I have joined other support sites, but this is by far the best in terms of evidence based information (I describe it as the difference between reading a broadsheet newspaper and a tabloid newspaper - not sure however if that is a particularly British analogy or even particularly relevant nowadays!).

One of the least researched areas seems to be the emotional effect of the disease - diagnosis (often of relatively 'well' people), living with watch and wait/ worry (sword of Damocles), the dilemma of when to treat and with what, when to search for a CLL consultant etc etc.

My husband's haematologist is not a CLL specialist, but has been willing to discuss all options, is obviously very up to date and most importantly was prepared to consult colleagues. We did discuss with him the possibility of stopping after 3 rounds of FCR - he researched the papers, and recommended continuing to 6 but with reduced dosage. He seemed particularly pleased with the result - he obviously thinks he called it correctly and we agree!

[Complicated]

You must feel on top of the world!

[Fowey2009 in reply to Complicated]

Thank you - funny mixture of feelings. we are of course delighted and relieved, but also quite emotional - suspect 'having held it together' for 9 months the emotions are all coming to the top.

Since diagnosis we have always felt that we had the 'sword of Damocles' hanging over us. We are feeling that at least this is lifted for some years (hopefully a long time)

[Peggy4]

Brilliant news. You must feel on top of the world. Peggy.

[Fowey2009 in reply to Peggy4]

thank you

[Oleboyredw-uk]

What an excellent result, congratulations.

rob

[Fowey2009 in reply to Oleboyredw-uk]

thank you

[prosecco1]

That's great news, so pleased your Husband is in remission.

Elle 😀

[Fowey2009 in reply to prosecco1]

Thank you (love your user name!)

[prosecco1 in reply to Fowey2009]

Yes, I do like a Prosecco or 2 LoL

[Cammie]

Great News

Enjoy your new found freedom!

Geoff

[Fowey2009 in reply to Cammie]

Thank you - we will!

[manzelka]

Brilliant news

[Fowey2009 in reply to manzelka]

Thank you

[wroxham-gb]

Good news for both of you.

Sue

[Fowey2009 in reply to wroxham-gb]

Thank you

[wiganfan]

It is very reassuring to hear positive outcomes to treatment like this, I am really pleased for you both.

[Fowey2009 in reply to wiganfan]

Thank you

[fieldmeadow]

I too was fortunate enough to gain MTD negative status and I too had the Trisomy 12 arm. Sixteen months on my immune system remains a little on the low side (so continuing with some meds for now) but I feel very well.

Remission is so good! But for some, the early months of remission can be a time of "looking over your shoulder" wondering when the cll will return. This often passes as you return to relative normality - but some folk start to party immediately! I hope your husband is one!

So good to hear such wonderful news.

[Fowey2009 in reply to fieldmeadow]

Thank you, that is such good advice. People around us are celebrating, but we are both feeling very low key about it (delighted of course) - I suspect that we have held it all together for the last few years, that if we let go now, we will fall to pieces! So thank you for that reassurance....

[London_Girl]

Thats great news Beryl !

And yes, it gives us all great hope.

I hope you have a lovely time celebrating !

Maria x

[Fowey2009 in reply to London_Girl]

Thank you

[carol_h]

Excellent news, Beryl! Thank you for sharing. It's great to hear positive results!

Many Blessings for continued good health!

Carol

[Fowey2009 in reply to carol_h]

Thank you

[Fran57]

Hi. Brilliant news. My husband is just on day 3 of the 5th round of FCR and we hope it continues to go well. His results have been very good until now, so we have our fingers crossed! (Neutrophils a bit low this time).

Really pleased for you about the MRD negative.... I don't think our consultant does the testing for that, so I'm not sure what we'll be told about the final outcome...

Hope everything continues to go well for you both!

Fran ☺️

[Fowey2009 in reply to Fran57]

Thank you Fran. I hope you have a good result too. The biopsy has given us an element of 'certainty' about MRD so you may wish to ask your consultant about how they will assess the outcome of the FCR.

Best wishes to you both

Beryl