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FormerMember over 5 years ago

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5 subscribers
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Hi Everyone,

My name is Steve and I was last here three years ago when I had Nordic Protocol followed by an AutoSCT. I achieved FR after that and have been disease-free ever since.

I had two salivary glands removed two weeks ago and was quite surprised to find that the biopsy showed MCL. I’m sitting here in The Christie, Manchester, waiting to speak to my specialist.

I don’t know what he’ll say. I imagine it’ll be either watch and wait or scan. It could be the Ibrutinib versus allo discussion. We’ll see.

I think it is pretty standard for people to dip in and out of this forum, but now I’m back for a bit, I’d be happy to talk to anyone about my treatment. I was diagnosed in March 2014, W and W until November 15, then AutoSCT on May 10 2015.

Best Wishes,

Steve

Thehighlander over 5 years ago

Hi Steve, sorry to hear your news.

I am Mike Thehighlander and I help out around our Lymphoma and Stem Cell Transplant Forums.

I had a rare Skin Lymphoma..... actually you can see my story in my profile - but I have had two Allo SCTs with cells from my brother.

First was June 2014 and that did not work so went back in October 2015 for a second hit and eventually I found Remission and NED in September 2016.

Back in 2015 this was the only route for me to go but three years is a long time in drug development.

All the best with your discussions and we are always around to help out as best as we can

Mike (Thehighlander)

It always seems impossible until its done - Nelson Mandela

My cancer story

johnr over 5 years ago

Hi Steve, sorry to read that the MCL has returned, if they do have the Ibrutinib discussion ask about 2nd generation drugs (newer versions) as an option as they have fewer side effects and as its The Christie, they may be able to access them. Let us know how it goes and what they are suggesting.

The have also been some trials since 2015 looking at various options and combinations so may be worth exploring those too to see what else might be available.

regards

John

we all know this is a roller coaster ride, where we ride blind, never knowing where the highs and lows are

FormerMember over 5 years ago

Hello Steve,

I also have MCL. They started me out on BR, but body did not do well on bendamustine. They then switched me to ibrutinib and rituximab(low dose). After three months of ibrutinib ( with side effects) I noticed rapid heart beat within 2 hours of taking it. We switched to acalabrutinib (second gen)which has far fewer side effects. Im now at 16+ months into treatment with no minimal residual disease and CR by MRI/PET. I am feeling well and remain on A+R. We still do quarterly MRI just to check.

Hope this helps)

Best

Millie

FormerMember over 5 years ago in reply to FormerMember

Hi Millie,

That’s great news. Thanks for letting me know.

Regards,

Steve

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