Flag ida treatment

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Hi All

My wife is to go into worthing hospital for a 4th time to receive Flag treatment on Monday as the mutation is still present in the NPM marker. We've also got to go to UCLH tomorrow for bone marrow biopsy and see consultant .

Sadly we have been informed that despite the Flag treatment that it is highly likely that SCT will be required following, very upset and frightened of the forthcoming months as we thought the mutation was so small that conventional chemo would do the trick.

Any help on what to expect with high dose Flag would be welcomed.

Nick

Thehighlander over 5 years ago

Hi Nick, sorry to hear your news but for some this ends up being the journey that some go on.

I am sure that those who have had FLAG and any further salvage and SCT conditioning will come in past but I would suggest you also post in the Stem Cell Transplant Forum as you will also connect with folks who have been through or are on the rollercoster.

From a two times SCT veteran, for some it can be hard work, for others it’s not but it is all do-able.

Always around on the SCT Forum to listen and help.

((hugs)) all round.

Mike (Thehighlander)

It always seems impossible until its done - Nelson Mandela

My cancer story

parkrun mark over 5 years ago

Hi Nick

I had 5 days of the flag ida in Feb this year as they had spotted the NPM1 marker rising. I found it a bit harder than the 7 +3 regime. Was a little sick on a couple of days and also had temperatures which delayed my discharge. Managed 4 nights at home before being re admitted to my local hospital for 10 days with a blood or line infection.It took 5 weeks for my neutrophils to get to 0.7 about a week longer than previously.Today is six weeks since finishing chemo and my neuts were 1.3 a couple of days ago and I am feeling good again,taste buds good, enjoying a glass of red and walking up to 3 miles.I had a biopsy on Tuesday no results yet. I am meeting up with the transplant team in 2 weeks so assume the transplant will be a couple of weeks later.I may know more when I see my consultant next Thursday.Flag ida is definately more powerful and designed to put the MPM1 marker firmly into touch.

Mark

Fulhamboy over 5 years ago in reply to parkrun mark

Hi mark

My wife Went to uclh today for biopsy and see consultant. Decition is now final. Going into worthing for FLAG Ida on Monday and the follow up biopsy will be done in London not worthing as the consultant wants to start the SCT IMMEDIATELY following the FLAG. apparently this system has yet to be published but apparently the sooner after FLAG the SCT is carried out the better outcome is expected. As far as % is concerned for success is 60%. There will be no delay in biopsy results prior to SCT as the NPM marker will still be present but unable to rise whilst waiting, giving better chance of complete remission. Praying this works.

Nick

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Flag ida treatment