Recently diagnosed with rare incurable cancer

FormerMember over 4 years ago

4 replies
28 subscribers
1032 views

Hi,

Not sure where to start really. In March this year i was diagnosed with Hepatosplenic T-Cell Lymphoma. It's quite a rare and aggressive type with a poor prognosis. I was hoping to find someone else with the same type, but search on the site hasn't turned up anything.

I have a young family (wife and 3 children under 5). So, yes, I'm concerned about my future, but also very much about their's too.

Anyway, not sure what else to say. Just wanted to say hi I guess.

Thehighlander over 4 years ago

Hi and welcome to the Community.

I was diagnosed with another rare type of T-Cell Lymphoma (there are a number).

1999 was when I was diagnosed with Cutaneous T-Cell Lymphoma and I have been through two Allo (Donor) Stem Cell Transplants and yes, this was my only hope

I see you have found our dedicated Stem Cell Transplant Group so come over and introduce yourself to the group.

The thing about SCT is it’s not all about the type of blood cancer you have as the SCT process is basically the same for all types.

Well done putting some info in your profile - this helps a lot and you can look at other members stories..... my story is rather long but I can say that SCT has saved my life and have now been in remission since Sep 2016.

I will keep an eye open for you in the SCT Group.

Mike (Thehighlander)

It always seems impossible until its done - Nelson Mandela

My cancer story

FormerMember over 4 years ago in reply to Thehighlander

Hi Mike,

thank you for the welcome.

I looked at your profile, and that's a full-on journey you've been on. There's lots of good advice about getting through the SCT process (I didn't even know it could be done more than once).

Even though I'm not there yet (I'm hoping to though), I'll head over to SCT and say hello.

FormerMember over 4 years ago

Sorry to hear that mate, I'm in your situation too, had this for years without problems, but I started to have night sweats recently and all of a sudden I'm so worried about my wife and kids.

FormerMember over 4 years ago in reply to FormerMember

Thanks .

I'm really sorry to hear about the night sweats. I'm pretty new to this (sounds like someone going on a first date), but that's one of the scary parts of this - when the disease turns the dial up a notch.

I've had a few hospitalisation type scares lately, and it got me back to focusing intently on my family's future. Thinking of ways to try and make it easier for them. Have you talked to Macmillan advisors about planning etc? I found it very helpful to have something positive I could actively do. I'm happy to discuss, if you like.