Hi Guys, I'm John,

First things first, i don't claim to be an expert on the subject, after having 2 biopsy operations in October, the first giving an inconclusive result, the results of the second one proved the ENT consultant to be right confirming that i have aggressive high grade non Hodgkins lymphoma. I had my first chemotherapy session last Wednesday, and so far seem to be coping well.

The thing i've found to be of biggest support has been to talk about it. Members on this forum, and others, have been a great help. It's only since starting to talk about it that you begin to realise just how many people have been/are effected by this and most importantly, just how many people have beaten it!

So to the point of this thread, talking about this has been a great help to me in dealing with it, so if anyone wants to talk about their experiences with lymphoma, if like me you're just starting out in beating it or maybe have a family member going through the same and need support, I've listed my email address at the bottom. I'll do my best to answer any emails i get in the best way i can.

Anyway, thanks for reading, and if i can be of any help get in touch.

Kind regards

John

john466roberts@btinternet.com

John and I have talked privatley about this and the same goes for me. Want to talk/advice just get in touch.

For those that don't know I had Diffuse Large B-Cell Lymphoma. I had surgery, chemo and then a Bone Marrow Transplant. Finished treatment 12 months ago.

i wish you both well and hope you win the up hill battle good luck lads

Years ago there was very little support for the families watching their loved ones go through the hell.

When your a kid watching someone close going through the chemo and seeing the effect of morphine is frightening, it changes you.

Keep on fighting, hope you both come out well.

I know what you mean, I've got two boys the younger ones 6 and to him it's all way above his head and doesn't really understand, the eldest is 11 and far more aware and what effect this is having him god only knows. Hopefully he'll see things are going to be OK and won't be too effected by it.

Thanks guys.

I had a Lymphoma caused due to metastasis from a testicular tumor.

Both the lymphoma (and a small lung tumor from the same source) were sorted out in 4 cycles of chemo - would have been 3 but I didn't react well the one of the drugs.

Chemo is no fun at all and tends to be cumulative so gets harder as you go along. But it can be quite effective.
Watch out for neutopenia as that's even less fun - had that on 3 of my cycles

Good luck with the treatment, my boys were very young and coped well, but the pick up on emotions so best to keep positive and open about the whole thing. My treatment finished 5 years ago and I'm fine now.

I had bladder cancer last year and was operated on but it came back this year so another operation (keyhole through the jap's eye) and chemo for 6 weeks. This is not like your treatment as the Mitomycin is injected straight into the bladder (intravesicular) and then you have to hold it for an hour before you go and do a purple pee. I had scans and kidney checks but it seems it was localised and caught early enough. Best wishes to you in your treatment and don't get depressed, I was till the catheter was taken out and I was back to normal functions.

John - I had fairly agrressive Non-Hodgkins Lymphoma back in 1995. Had radiotherapy, which probably wasn't all that necessary, chemo for 16 weeks and then a stem cell auto graft with high dose treatment. Touch wood, I've not had any associated problems since and I'm back flying as a pilot.

Things have come on a long way since then and I'm staggered by the progress. I think there was one apheresis machine when I was harvested, now they seem to be everywhere.

Anyway, enough of my ramblings - and all the best!

@ geoff
I had apheresis

youtube linky

[Edited on 16/11/09 by liam.mccaffrey]

I have to say i was expecting something far more elaborate, it never ceases to amaze me how simple some machines are considering what their intended use in hospital is.

Kind regards

John

Wish you all the best in fighting this!