Mantel cell lymphoma - any experience?

[VivaLeBeaver]

My dad was diagnosed with this last week. Drs reckon he's had it a few months.

He started chemo on Friday, retuximab?

He's not been told what grade it is but from googling I reckon it must be at least grade 3 because he has Lymphoma above and below the diaphragm. At least I'm assuming he does as he has lumps in his neck, armpits and groin.

Drs have told him its not really treatable. Dad says he doesn't understand what they mean by this. They are trying to treat it as he's having chemo. Do they mean they're not very optimistic? Dad says he's going to ask for a prognosis next week. I'm worried that the drs are basically trying to prepare him for the fact it's terminal and the chemo will just buy him a bit of time.

Gosh I am so sorry to hear about your poor Dad.

I'm afraid I don't know anything about this particular lymphoma - there is a comprehensive list of different ones on the Macmillan site (or might be CRUK - sorry, will have a look in a minute and link for you) which might explain more.

By saying it is not treatable they may mean it can't be 'cured' but that they can try and limit its progression. They ought to have been clearer when explaining this. And they may not mean this at all.

I am just sorry that you are going through this.

here is the link to CRUK's page on it.

You might find it a bit upsetting, I'm sorry. It looks like they are giving him the best treatment they have for it at present, though you should ask about his taking part in a clinical trial as these can often be helpful...basically they will be testing a new drug which they think has high potential to be effective.

There are links to various clinical trials on that page and information about Rituximab which is a biological therapy.

I'm not sure if this is helpful to you at the moment, once again I am so sorry that you and your family are going through this. It must be a big shock xx

Wikipedia has a very informative page as well.

Thanks Fivemonths, I'd actually already seen the CRUK and Wiki pages but thanks for linking them anyway. They're not very hopeful are they? From dad's symptoms, blood results, etc I'd say he's in the high risk group which according to Wiki has a median survival rate of 29 months.

Still more time than some people get, so fingers crossed he will get that long if not longer.

I'm really sorry. Yes they weren't very encouraging were they...but it does talk about median survival which means some folk will live a lot longer.

I know that in older people, cancer seems to work slower - their cells are dividing more slowly. So it could be that he will be luckier than that, after all someone has to be on the positive side of the stats.

Just sending all good wishes and best of luck to you both, and do remember we are here for you if you need a listening ear at any stage x

I'm sorry to hear this mate. Take care.

Thanks both of you.

Just had a phone call from step mum, not very good news. Dad has a mutated version of it and doesn't have very long. Maybe a few months from the sound of it. Though they're talking about stem cell treatment. But this would mean going to a hospital about an hour away.

Gosh you must be very shocked.

To be honest not very shocked. He's been so poorly for so long I've kind of been expecting it. Plus expected the prognosis to be poor as he's so frail.

I'm sorry to hear this, I really am.

I hope that his last few months are as good as possible xx