Post transplant lymphoma (Ptld)

[mousehold]

Does anyone have experience of this please?

[Tatjana]

I have had Liver Lymphoma - They thought it was HCC but when history came back it was Extra Nodal Marginal Zone Lymphoma of the Liver caused by HCV. I have not had a transplant. Does that help?

[mousehold in reply to Tatjana]

They said it was caused by HCv? That's interesting I didn't know that. I had a transplant because of HCV - they cured it with harmoni just before but now looks like the hidden cancer I had has come back either that or post transplant lymphoma caused by the immuno suppression. How did they treat your lymphoma?

[Tatjana in reply to mousehold]

Hi mousehold, they did not treat my Lymphoma, I had a resection in Jan 2013 and now I am on Harvoni Ribavirin and my HCV has remained undetected since the first two weeks test.

I think they put me on treatment because as you said C can be hidden (they cannot see it until it reached a specific size?) and they want to stop the C coming back.

I am watching your conversations with Robswife and will try and help.

[mousehold in reply to Tatjana]

The quicker you go negative the better sounds like you're gonna be fine. It cured me and I had done old tx 4 times had geno 3 cirrhosis and cancer! It's a miracle cure for us cos it targets the virus which old meds couldn't.

[Hidden]

Hello xxx no I hadn't heard of this (just done a Google) 😩😩

Looks like there could be a number of reasons ??? And it's quite bizarre as I have been having my own little stress at hubby's 'lump' in neck - being on the post-transplant side I haven't had to do as much (personal care etc) so although I had seen it before I just thought it was a spot coming up under the skin - mentioned it last week at consultants appointment and he has added it to his letter/notes ??? Didn't say much about it but now I am wondering if there is a connection ??? - it said on giggle 😂😂 about Epstein Barr virus ?? Have you had that or been tested for it ??? And also the other one CMV cytomegalovirus ?? I am sure Rob got tested for CMV on one of his post-transplant admissions but I was never informed that he 'had it' so to speak xxxxx

Will be interesting to see what the others say - I will keep watching 😘😘😘😘😘 what are your symptoms xxxxx

[mousehold]

Tests tomorrow but really waiting for lymph node biopsy, they making me wait ages for that. It's not in the liver (for once!) but I've got it in my lung and abdom. The ct scan showed it up - first one since transplant 14 months ago, they looking for cancer return and saw this. Think the immune suppressants stop T cells working so you can get all sorts inc lymphoma with or without EBV involvement. Not that anyone's told me anything of course. The treatment is a drug to stimulate T cells and withdrawal from immunosuppression for 4 weeks (bit dodgy sounding) but it's better than my other diagnosis liver cancer return/spread! Is there no end to all this worry?

[mousehold]

Btw I can't feel the lymph nodes but do have pain where the 2 lesions are.

[Hidden]

I had a look back on Robs 'letters' - they send letters after his appointments with his 'test results' in - because they know I will only ring up and ask - can't write word for word but his latest scan thing (can't remember already if it was MRI or biopsy) and he had enlarged lymph nodes in abdomen/spleen ??? (I only read it yesterday and can't remember 😫😫) - do you think I should be concerned ??? Nothing has been mentioned about it and it normally happens this way - I will have to say 'what about the lymph nodes?' and then they will say 'oh we will get that checked out' - is it normal ?? He still has enlarged spleen at 15cm which I presumed is normal after transplant ??? All his current problems (fatigue/itching/tiredness) have all been attributed to the Hep C 🤔🤔🤔🤔 xx I wonder what the treatment for hep c will do if these are lymphomas ??? Xxx

[mousehold]

My spleen is 16 cm they say it will never get smaller although before transplant it was 23 cm. A large normal spleen can be 13 so I think 15 is a good size! I am having lymph trouble but think it is different, they think I might have post transplant lymphoma but I have lesions in my body (not liver) so for me most likely my cancer spread before my transplant. I just don't know but seeing doc today. Isn't it awful just not knowing? I never felt really good after transplant and still live in bed, like I did before transplant. Sorry I can't help, I'm just moaning I suppose.

[Bolly in reply to mousehold]

Just butting in to admonish you Mousehold for saying you are 'moaning'. You dont moan, just sometimes you struggle a bit with the enormity of it all. You have been through Hep C treatment, cancer in your liver, transplant, and come out the other side. That takes one tough cookie, not someone who moans or feels sorry for themselves. Hope you get some clarity from your tests today (if its today) and bl**dy well get a move on Mousehold's doctors with her biopsy. Hugs ((0)).

PS I 'got' Epstein Barr confirmed after having been on Azathioprine for nearly 2 years, seems these immunosuppresssants do make you susceptible to all sorts of new things you never had before, lol.

[mousehold in reply to Bolly]

Really? EBV? I know azathioprine is a tough one. Thank you for your admonition it's the nicest one I've ever had. Today I see liver doc for blood tests and to see if the link has been made so I can get biopsy done in Norwich and ASAP. I'm in local paper today (again) moaning (whoops) about the government stalling (again) about compensation for hep C from NHS in the 1970s 90s. Why isn't it surprising they're playing for time still? We'll all be dead of old age soon anyway.

[Bolly in reply to mousehold]

It was this summer when we had quite a hot spell of weather and i felt extra hot. On top of the hot flushes, the night sweats there was this extra internal radiator burning away. Hep looked at my routine blood results and said "whoa, you have either CMV or EBV". I said how do you know and he said it was to do with my lymphocytes showing as 'atypical' on the blood film, so he ran an immunoglobulin test for both CMV which came back negative and EBV which came back positive. I was never aware of any swollen glands, just fever and extra fatigue but so often we muddle along with symptoms thinking 'its the liver' or 'its the meds', so i just plodded along and eventually felt better, ha ha.

Three years ago next January one of 'routine' bloods showed an ALT spike to 660. I was rushed into hospital as they thought it was an AIH flare but a Hep E test came back positive and my levels dropped by themselves over a few weeks. Where did that ambush me from, i have no idea.

Oh yes, I've had so many weird and wonderful things happen over the last 5 years pretty much nothing surprises me!

Whats happening with the Skipton fund, has it been mothballed or run out of money?

[mousehold]

Found out yesterday I do have secondaries, so must have had them before transplant! He gave me 2-3 months. I keep walking round feeling unconcerned about all the worries of the world, stop the world I'm gonna get off! And it feels sort of right cos I'm totally sick of my social life for last 10 years which consisted of hospitals endoscopies and needles! Plus they said I can have any drug I want! Imminent death has got it's up side.

[Hidden in reply to mousehold]

Sorry to hear that. I hope you can get whatever support you need.

[Hidden in reply to mousehold]

Whaaat ?? Did I read this right 😩😩😩 xxx oh Hun 😭😭😭 ❤️❤️❤️❤️

[Bolly in reply to mousehold]

Damn damn damn. Not the path we were hoping for. Please keep in touch on here Annie and know we are cyber supporting you. Hugs ((0))

[Alicja_mb in reply to mousehold]

So sorry to hear xx

[MisterX in reply to mousehold]

I'm so, so sorry, it's just not right

[Catfishjumpin in reply to mousehold]

Live like you have forever. Try to. I hope you can find some happiness. You helped me saying honestly you are sick of it all. I have refused being put on the transplant list. I do not want all of my life to be about searching for more cancer. You really are helpful here. I am sure no one thinks you are moaning, its just so damn tiring keeping up with all the hoops we have to so we can live at all. Big hug from Hawaii

[Buddy1982-33]

Hi mom buddy I found out my mom has cirrhosis of the liver she had hepatitis C and they gave her a medicine called Harvini I doubt that is spelled right but anyways so she doesn't have hepatitis C anymore but she has had blood loss and they don't know where the blood is going or coming from so they gave her something iron infusions and I think home wanted two occasions they gave her some blood but anyways she has stage 3 going into 4 practically a 4 but and the doctor says just lose some weight eat healthy you'll be fine but if that's the case I mean to discuss putting her on any medicine for it I mean they didn't say nothing else as everything is going on they haven't put nothing together I don't do anything she don't know anything so were like lost so we're making her an appointment and I'm going with her she said she wants me to go so we can try to find out something I mean it is literally me and my mom my mom is all I have I mean I have a couple brothers and a sister but we don't talk its always been me and my mom against the world so I'd hate to lose her any thoughts I know I'm rambling on

[cscudder]

PTLD - Posttransplant lymphoproliferative disease. Diagnosed with stage 4 lymphoma in July 2015 after 17 yrs on kidney transplant immunosuppressives. The docs at Johns Hopkins blamed it on tacrolimus (Prograf) which I had been taking since the tx. Are you saying they aren't treating you? I was cured with 4 months of chemo. They also took me off the Tacrolimus.