Patty..continuing saga

[Guest guest]

Thanks everyone for the warm thoughts. For those of you who are new I am

post-transplant 4 years, diagnosed w/AIH in 1980. On & off prednisone, did

well till I hit liver failure 9/97. Then transplant 2/98. I have had

unrelenting adventures with my post surgiacal condition but the liver is

great, no signs of rejection working great. Best is no prednisone. I have

been feeling fine, work full-time (always did through AIH). Lately I have

had lots of back pain. The next part is rather long. Feel free to delete and

move along...

The story

The diagnosis continues to be Lesion at L4 (which is not really a

diagnosis). Dr. Harrington (hematologist) and Dr. Tzakis (transplant

surgeon) both believe it is a lymphoma caused by an opportunistic viral

infection. They think probably Epstein -Barr. This was very confusing until

I did a little literature search:

" The Epstein-Barr virus is thought to be responsible for a number of

diseases in addition to glandular fever (otherwise known as infectious

mononucleosis) and Burkitt's lymphoma. Diseases caused by the virus are

particularly common among people with reduced immunity . For example, the

virus is associated with 'post-transplant lymphoproliferative disease', a

tumour often found in organ transplant patients. The immune systems of such

patients are usually suppressed artificially by drug therapy to help prevent

the body from rejecting the new organ. Scientists don't know why the virus

causes a relatively mild disease like glandular fever in some people and

malignant tumours in others. "

None of the tests since the original MRI 3/13, have given much more

information. The bone scan 3/15, again pointed to L4. The MRI mentioned

possibility of a neoplastic process, the bone biopsy 3/18, results 3/25,

showed the bone was clear but there were malignant cells that were

inconclusive due to small samples. Dr. Harrington who I saw first on 3/26,

next did an MRI of the lumbar spine, a mammogram and a contrast CT of the

abdomen & pelvis, all on 3/27, which essentially said the same thing. He was

hoping to find a mass somewhere else to slice up for biopsy but there was

none (I thought that was good, I think he was disappointed). They have done

all types of blood work which comes back negative.

The transplant service has seen 20-30 post-transplant tumors in over 1000

transplants they have done. The tumors tend to show up on organs they have

never seen a spinal one. I understand the T and B cell ones are the most

commonly seen. They say they respond well to treatment. Dr. Harrington is

one of the Hematologists they refer to so he has seen them.

There appeared to be two alternatives left. An open spine proceedure to get

enough tissus to biopsy and find out what is going on, or assume it is a B

or T cell lymphoma, treat it as such and measure the response.

I was admitted Friday to Sylvester Cancer Center. First was to be seen by a

neuro-oncologist, then IV's of AZT and retuxin (a chemotherapy) also an MRI

with contrast to use as a comparison and see if the mass at L4 looked any

different. The plan wa to give me one treatment and see if there is an

effect.

Remember, we really didn't have anymore information than the first MRI,

except all these Scans confirm L4 is a problem. And, there doesn't seem to

be anyhing anywhere else.

First the hematologist wanted the neuro -oncologist to do a lumbar puncture

and take some cells for biopsy (he didn't expect to see anything but figured

why not since she had to go in...) and inject something (a treatment for the

lymphoma). She refused. She felt there was inadequate evidence to treat me

and that I should have a consult with a neurospinal surgeon. Dr Harrington

came in to talk to me, and sparing the details, the treatment pending any

other information seemed the best route to go.

I had another MRI Friday night this time w/contrast and the AZT. Saturday

things started off slowly. The neuro-oncologist is apparently married to a

spinal neurosurgeon, and they discussed my case (I suppose I was exciting

dinner table conversation).

I started the Retuxin about noon. Despite pre-treatment with benadryl and

solumedrol, About 45 minutes into the treatment I has a reaction, starting

with nausea they throat constriction, chest tightness and puritis (etc).

They stopped the IV and after a 2 hour break and much consultation with Dr

Harrington started over 250 mg solumedrol this time and less than half the

rate of infusion. They went for four hours then another 250 solumedrol and

finished up about 1AM. I had some mild reactions but no real problems the

second time.

Then I slept great, cleared all my labs and was home by noon. After Easter

dinner we had tickets to see Mamma Mia at the Jackie Gleason. It was great

and I had no difficulty with all that solumedrol!

Next... see Dr. Harrington on Tuesday, probably the neuro-spinal surgical

consult sometime this week and repeat contrast MRI on Thursday.

So, still no diagnosis. I still don't know what damage may have happened to

L4 during this process. I may never know why L4. The saga continues.

Today's news. My epstein barr virus test came back - negative!

The saga continues, thnks for all the support. And welcome to all the new

members and hang in there debby.

The reason no birds is they walk in their excrement in the cage and if

touched the excrement on a claw in contact with the skin is really

dangerous. I have not touched the kitty litter in four years. The best

suggestion is the mask gloves bleach and plastic shhets with holes, I think

it was Gayle, and she's right the transplant team would have a fit if they

heard me say this!

Patty (Miami)