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Large cell lymphoma

daucan
Posts: 2
Joined: Feb 2010

My dad (52yrs) just got diagnosed with large cell lymphoma. its apparently very aggressive and the tumour that was meant to have been removed has mutated and resulted in him becoming HIV positive. How is this even possible? Can anyone help with advice or say that they've gone through the same? I am going out of my mind trying to understand how shingles can go to lymphoma to colon cancer and now to this?

LC48
Posts: 1
Joined: Mar 2010

I'm so sorry to hear about your Dad. I'm 48 and was recently diagnosed this last Monday with chronic LGL leukemia. From what I understand, it's also known as LGL Leukemia, so you might want to visit the Leukemia discussion board, enter LGL in the search field and you'll find it. How was this linked to shingles? Dr Tom Loughran at Penn State Cancer Center is one of the leaders in research. Chempath is a drug that seems to be helping some people with this disease. As you know the information on this type of cancer is not very abundant, hopefully you can find some answers. Prayers, LC

SusanFedorka
Posts: 2
Joined: Mar 2010

Hi,

I have anaplastic large cell lymphoma, and have been thru surgery (while it was cutaneous), chemo, and a full allogeneic SCT (matched sibling donor). I've never heard of it mutating as you say. Usually systemic aggressive lymphoma requires more than surgery as a tx.

I am on the NHLcyberfamily yahoo elist, and there are a few of us there with aggressive large cell lymphoma. The group owner is very knowledgeable and I think you'd get a lot of support there.

Hope you have more answers by now!

carrie_b
Posts: 5
Joined: Aug 2009

Hi SusanFedorka~~
was wondering if you have alk negative or alk positive ALCL. I have ALCL alk neg. Was diagnosed Jan. 2009, underwent CHOEP (chop with addition of etoposide) and radiation. Cancer relapsed 2 months later. Went on the SGN-35 study which put the cancer into remission after just 4 treatments. Recently underwent an autologous stem cell transplant...am only day 20, but doing well. I am interested in your treatments. Did you undergo an auto transplant before the allo transplant? They wanted to do an auto transplant in tandem with my auto SCT but my brother was not a match.
Take Care and God bless,
Carrie

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