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ALCL or any other T Cell Lymphomas

brooklynboy
Posts: 4
Joined: Jan 2015

I was hoping to chat with some others that may be being treated for or have been treated for these types of lymphoma. I have been on this site and few others but seem to be flying solo. All posts seem to be two to three years old. A part of me is happy that so few people have to deal with this type of NHL, but any feedback from others, patients or caregivers would be greatly appreciated.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3307
Joined: May 2012

Welcome,  brooklyn.

You are correct in noting that T-cell disease is rare, and does not get as much discussion here as the predominant forms of B-cell lymphomas.    It would be great if someone with T-cell experience would respond to you.  There is a certain amount of overlap or commonality between all strains, however, and for instance your drugs may also be used on B-cell disease, in which case posts regarding B-cell forms would be relevant and helpful to you.   You mention having received EPOCH in 2012.  Are you in remission now ? If not, do you have a treatment plan in place ?  Or you may be in a "watchful waiting" scenario, which is also fairly common

These questions might be something others out there are currently dealing with.   Most people read and scan what is active here, without writing, but I hope someone will get back to you soon. 

Good luck with your treatment, if you are currently receiving some form of treatment,

max

http://chemocare.com/chemotherapy/acronyms/epoch-r.aspx#.VNzxQl05C70

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brooklynboy
Posts: 4
Joined: Jan 2015

Hey Max,

Thanks for responding. I've been following and reading almost ALL of the Lymphoma discussions on several sites looking for any similarities and really very few. Yes, the treatments and a few of the onset symptoms are the same but ends there. I know that my specific type of lymphoma is fairly rare. I've yet to read anything about Lymphedema, ALK status, tumorous rather than nodular.... To answer your question, I'm in what you called a "watchful waiting". I never had any swollen lymph nodes, rather a soft tumor in and on my Iliacus muscle. The tumor was/is inoperable. I did have two CT guided biopsies taken post chemo that did collect some necrotic tissue. My doctors were not happy with the amount of tissue removed and from where it was removed. They were hoping to get samples from the center of the tumor rather than the perimeter. My last PET/CT is still showing metabolic activity in the area. So, really not sure what's going on. Post Lymphedema I was left with RSD, not fun at all! I take quite a bit of Morphine and Neurontin to help with the pain. I can go on and on. This all started with a pain in my right thigh and something that I thought was a virus. Again, thanks for responding and happy you are doing well.

Neil

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3307
Joined: May 2012

Some of the T-cell folks will show up soon. I suspect they check in less often, but will come around.

 

max

po18guy
Posts: 1005
Joined: Nov 2011

Sorry to hear that you are a member of this small club. Sounds like you have ALCL? If so, is it ALK+ or ALK-? There is a big difference in treatment and outcome. What sort of biopsy was used to diagnose you? I hope that the surgery was for purposes of biopsy only, as lymphoma tumors are considered to be "soft tumors" and quite different from all other cancers. Normally, they are not dealt with surgically, the exception being if the tumor is pressing on an internal organ or nerve. Are you in NY? If so, I hope that you have consulted with Dr. Steven Horwitz at MSKCC. He is one of the acknowledged best in the US as to T-Cell cancers. 

brooklynboy
Posts: 4
Joined: Jan 2015

Yes I am ALK-. My doctors tried to do a CT guided needle biopsy of my tumor to see if it was dead. After my six rounds of chemo (EPOCH), as there was very little shrinkage. I believe they were just trying to see if the tumor was affected by the chemo treatment. As the tumor is sitting, as I understand, in and on my Iliacus muscle. The tumor is affecting two groups of nerve centers that prohibit me from picking my leg up when sitting. No more driving! I also had 25 rounds of radiation.I am currently being treated at the Monter Cancer Center on Long Island. It is part of NorthShore/LIJ. I am very happy with my doctors but would consider treatment at MSKCC. I've had many complications from the get go.... Immune system, Lymphedema, that has resulted in RSD.....

po18guy
Posts: 1005
Joined: Nov 2011

The ALK- version of ALCL is an aggressive, difficult to treat (as you well know) variety. ALK+ responds to CHOP, but ALK- is just plain difficult, and treatment and prognosis are similar to other T-Cell Lymphomas. The fact that it is extra-nodal and appeared in soft tissue is also unusual. As close as you are to  MSKCC, I would certainly seek a second opinion there, as T-Cell Lymphomas are not normally W&W propositions. After both chemo and rads, that tumor "should" be greatly reduced, if not gone.  

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