Can it get any worse

[sporti]

Hi

I'm just posting cos I've had some bad news and just wanted to write it down. Just a bit of background. Kidney failure since at least 1982 currently 12-14%. Got through ovarian cancer in 2003 without hurting my kidneys. A mammoth task. Just been put on transplant list here accruing time only. Today at haemotologist been diagnosed with lymphoma so off the list I spose. Life's a bitch

[AmandaClare]

I'm so sorry to hear your news, sporti. What a total bummer. You've had a really rough ride.

I'm sure you'll rise to the challenge over the next few weeks but just now you must be reeling.

Amanda x

[Tibbs]

OMG Sporti that totally sucks!

I hope that the prognonsis is at least good and you can get on with whatever treatment that's needed as soon as possible.

You know where we are should you need us.

[SKM23435]

Sporti

Read your post a couple of days ago. Wasn't sure what to say then and I'm still not sure now.
Except to say I agree with Tibbs.

Hope all becomes clearer in the next few weeks. Good Luck. We are all on your side.

Sue

[MandyA]

I'm so sorry, Sporti.

That is terrible news.

I wish you all the best.

Mandy

[jbell]

Sporti that is such upsetting news. I am really sorry and I hope they can help you, you have already battled through such a lot and sound a strong and brave person. If you want to let us know how things go, thinking of you ....Jan

[Dixie1]

Sorry to read that sporti, that really is crap. I wish you the very best with treatment and hope that you get back on the list again soon. Will you be accruing time whilst off this time? I don't know how these things work... Anyway, I hope so, otherwise it really is a double whammy. Good luck!

[sporti]

Hi

Dixie1 yes I am accruing time on the transplant list. I have a consultation with oncologist tomorrow. Despite telling me hes 99% certain I have lymphoma I have had the results of my PET/CT scan and it is unbelievably clear. The bone marrow biopsy will deliver the diagnosis but I always thought PET combined with CT were definitive. So im finding it confusing why they are used so much in cancer diagnosis and people rely on them so much for giving them the all clear after chemo.

[sporti]

Hi just an update - yes I have slow growing indolent non Hodgkin's lymphoma. No treatment as no symptoms. Treated as a chronic illness not like main cancers. Average is around 5 years for it to progress. They are trying to get me to Mt. SInai hospital in NY as they are researching different immunosuppressant drugs that won't agravate the lymphoma when transplanted. So one door closes and another opens

[Tibbs]

Wow Sporti - good news and bad news at the same time.

I hope everything goes ok, and please keep us updated, especially if you get to try out some new protocols.

[Dixie1]

Hi Sporti

As Tibbs says, good news (I think ). So, how does that leave you with respect to 'the list'?

[sporti]

I'm still on the list Dixie1 but just accruing time only. So if a kidney comes up I can't have it however if I am allowed fully back on list after a certain time I will be further up the list. I'm not sure if that's how it works in UK but that's what's happening in USA.

[Dixie1]

Hi Sporti - oh, I was just wondering/hoping that with it being treated more like a chronic illness they may have put you back on the list, but obviously not. Good luck with your appointment in NY, as and when it comes through. Let us know how you get on.

[Kenvj]

Hi Sporti, sorry to hear your bad news, I do hope things get better for you and that life gets a bit easier.
Kenvi

[AmandaClare]

Sporti, very glad to hear there's still a possible way forward with the transplant. Best of luck with that.