EBV after transplant

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TimCooper
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EBV after transplant

Postby TimCooper » 24 Jan 2016 01:06

Hi I'm a year past transplant and have developed EBV in the last few months. The doctors have been monitoring it monthly but now it's being monitored weekly. They say there's nothing to worry about but on further reading about it I see it can develop into a secondary cancer called PTLD and in worst case scenario non Hodgkin lymphoma.

Has anybody else had EBV after transplant before?
Last edited by TimCooper on 13 Feb 2016 20:36, edited 1 time in total.
lucy
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Re: EBV after transplant

Postby lucy » 30 Jan 2016 21:23

HI Tim,
I had a spike in my EBV levels about 6 months after my transplant. They shot up from 10,000 to over 100,000 in a week, so I was called in and given a dose of Rituximab, which is given intravenously over 4 hours. This caused the levels to drop back to normal straight away, although they still tested for it for some weeks after. The levels never went up again. This was nearly six years ago so protocols might have changed now. It might also be the case that your levels are not too high, so no treatment is needed yet. Good luck with it all.

Lucy
TimCooper
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Re: EBV after transplant

Postby TimCooper » 13 Feb 2016 20:36

Thanks Lucy,

I haven't had a blood test for a couple of weeks now so maybe it's levelled out or lowered. I'm in clinic in a couple of weeks so will ask then. It just worried me that the tests had gone from monthly to weekly suddenly.

All the best,

Tim.
johncaster
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Re: EBV after transplant

Postby johncaster » 19 Feb 2016 12:32

Is it similar to Lymphoma ?
TimCooper
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Joined: 20 Jan 2016 21:06
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Re: EBV after transplant

Postby TimCooper » 08 Apr 2016 22:52

Not a lymphoma in itself, EBV is a virus commonly know as Glandular Fever or Mononucleosis, it usually affects people in their 20's and early 30's but can attack people who have had transplants whatever the age. It can lead onto secondary cancers such as post transplant lymphoproliferative disorder or in worse case scenarios Non Hodgkins Lymphoma.

My Current EBV levels are around 2000 and I've been told to look for lumps in the usual places. I have a lump on my neck which they're keeping an eye on but it's not huge at the moment. I also seem to be losing weight quite quickly at the moment too and if it continues they'll send me for a CT scan to see if there are any hidden lymphomas.

I'm hoping everything's going to be OK as I've been through enough with the stem cell transplant and the complications that happened after.

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