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Anyone heard from Po18Guy

anliperez915's picture
anliperez915
Posts: 742
Joined: Sep 2011

Hello everyone,

Just wondering if anyone has heard from Po18Guy (Jim)? Last time I saw a post from him, he mentioned that he had relapsed. Take care everyone (((Hugs)))

Sincerely,

Liz

jimwins's picture
jimwins
Posts: 1984
Joined: Aug 2011

I checked and he was last online here Nov 22, 2013.  I sent him a quick message inquiring.  Hopefully we'll here something soon!

Happy Holidays and hugs back,

Jim

Rocquie's picture
Rocquie
Posts: 465
Joined: Mar 2013

Hi Liz! Hi Jim! I hope you have enjoyed your holiday season. . .

I have wondered about Po18guy (Jim) myself. I hope he is doing well and that we hear from him soon.

Blessings,

Rocquie

 

po18guy
Posts: 237
Joined: Nov 2011

Thank you for asking! Yes, after experiencing numerous odd symptoms in July, and stumping several specialists at the state university hospital, my wife found an article written by my own hematologist on AngioImmunoblastic T-Cell Lymphoma. The symptoms were almost precisely what I was experiencing. I had too much inflammation for a PET scan, and the suspected tumors were too deep to excise any of them, so we are proceeding on the assumption that it is a relapse based on symptoms. My treatment was ramped back up to full schedule, so I have had a few more side effects to deal with. After two rounds, I received mixed results on the CT scan, but overall it is a response. So, for the time being, we are proceeding as we did back in 2009. As well, I have accepted a moderator position on another forum, so have been busy there in Leukemia and Lymphoma. Everyone tells me that I look great - but you know, before I had cancer, no one ever told me that :-D 

Rocquie's picture
Rocquie
Posts: 465
Joined: Mar 2013

I am glad to hear from you. Thank you for the update. Back to "full schedule"? Big time chemo again? Well, if you can do it once. . .

I know what you mean by people telling you that you look great. I hear the same thing and it makes me wonder. I often hear about how great my skin (!) looks yet when I look in the mirror, I still see the same ole face. Well, my Mother always told me to simply say, "Thank you", and so I do.

What is your other forum? I'd love to visit there. . .

Hugs and prayers,

Rocquie

 

po18guy
Posts: 237
Joined: Nov 2011

So far, I have avoided chemo, and there are relatively few agents out there that the cancer has not already defeated. So, it appears that I will soon have 5 years on Romidepsin. What I have might be classed as an unknown sub-type of AngioImmunoblastic T-Cell Lymphoma and it is known to mimic an auto-immune disease when it either arrives or relapses. However, simply ramping up the Romidepsin treatment from a single monthly treatment to three per month has caused those symptoms to subside. I had too much inflammation for a PET, and the nodes were too deep for biopsy, so we are proceeding on the assumption that it was a relapse. Hoping for a better 2014 for all of us!  As to where I have been, I am usually found at www.cancerforums.net on the lymphoma and leukemia forums.

anliperez915's picture
anliperez915
Posts: 742
Joined: Sep 2011

Hi Jim,

Good to hear that you're still doing relatively well considering the circumstances! Hope this New Year is better for you and for everyone here at the board. Please keep us updated...Take care

Sincerely,

Liz

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