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Anyone heard from Po18Guy

anliperez915's picture
anliperez915
Posts: 772
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: 2111
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: 678
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's picture
po18guy
Posts: 340
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: 678
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's picture
po18guy
Posts: 340
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: 772
Joined: Sep 2011

Hi Jim,

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

Sincerely,

Liz

po18guy's picture
po18guy
Posts: 340
Joined: Nov 2011

Hello, all! Even though I have been M.I.A. (www.cancerforums.net), a LOT has been going on. Let's see... discontinued Romidepsin in 2014 due to lack of response. We then had a stare-down with the stuff, which lasted a few months. Then it flared back up. One cycle of Belinostat, but stopped that to enter a clinical trial of Alisertib. Failed that, so went back onto Belinostat. Failed that, so went onto Pralatrexate. Failed that, with three PETs in a row showing "progression." I had about two dozen tumors and lymphoma in my small intestine. The lymphoma had split into PTCL-NOS as well as AngioImmunoblastic T-Cell Lymphoma (AITL), so time to get serious. Doctor tried TREC, a new and less toxic version of ICE. It is Bendamustine, Etoposide and Carboplatin. This is for T-Cell Lymphomas. B-Cell patients also get Rituxan in the mix. Thank you, Dr. Gopal at Fred Hutchinson! Complete PET/CT response in only two cycles. I went on to have a third cycle. But, the big news was NED once again.

We decided to push the button on the "nuclear option", as there were basically no lymphoma drugs left. I went into prep and had a haploidentical allogeneic stem cell transplant in July of this year. My son was the donor. So, up to this point, I have had 17 chemotherapy drugs in 8 regimens (4 drugs at least twice), 2 clinical trials, one long-term study, 35+ CT scans, 10+ PET scans, 4 skin punch biopsies, 7 or 8 bone marrow biopsies, one core needle biopsy (worthless), 4 lymph node excisions and total body irradiation. Now I am finishing the end of my 100 day transplant program in Seattle, temporarily living in an apartment so as to be near Seattle Cancer Care Alliance. I am tapering off of prednisone after active skin GvHD arrived, but still on Tacrolimus as an immune supressant drug. Oh, and I found out that before the transplant, my marrow had developed Myelodysplastic Syndrome, which is a cancer of the marrow that can transform into Acute Myeloid Leukemia.

So, glad to have brand new marrow and no sign of cancer. The challenge now is to control the effects of the transplant. Yet, I am delighted to be anywhere, and life is still worth living!

illead's picture
illead
Posts: 672
Joined: Aug 2012

We are out of town so don't monitor everyday.  Sounds like you have really been through it, we are so sorry but the end result sounds very good.  Hang in there and please know that we care.  You are definitly a fighter.

Again we care about you,

Bill & Becky

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1869
Joined: May 2012

My caption, in German, means "unbelievable!"

Your number of chemo drugs must be some sort of world record.

You are prooof that never giving up is always the right choice.   I stand in awe.

 

max

po18guy's picture
po18guy
Posts: 340
Joined: Nov 2011

07/08 DX Peripheral T-Cell Lymphoma-Not Otherwise Specified. 50+ tumors with BMI 
08/08-12/08 Four cycles CHOEP14 + four cycles GND (Cyclofosfamide, Doxorubicin, Vincristine, Etoposide, Prednisone & Gemcitabine, Navelbine, Doxil) 
02/09 Relapse.
03/09-06/13 Clinical trial of Romidepsin > long-term study. NED for 64 twenty-eight day cycles 
07/13 Relapse/Suspected Mutation.
08/13-02/14 Romidepsin increased, but stopped due to ineffectiveness. Watch & Wait. 
09/14 Relapse/Progression. Visible cervical nodes appear within 4 days of being checked clear.
10/06/14 One cycle Belinostat. Discontinued to enter second clinical trial.
10/25/14 Clinical trial of Alisertib/Failed.
01/12/15 Belinostat resumed/Failed 02/23/15
02/24/15 Pralatrexate/Failed 04/17/15
04/15 Genomic profiling reveals mutation into PTCL-NOS + AngioImmunoblastic T-Cell Lymphoma. Two dozen tumors + small intestine involvement.
04/22/15 TREC (Bendamustine, Etoposide, Carboplatin). Full response in two cycles. PET/CT both clear. Third cycle followed.
06/15-07/15 Transplant preparation (X-rays, spinal taps, BMB, blood test, MUGA scan, lung function, CMV screening, C-Diff testing etc. etc. etc.) Intrathecal Methotrexate during spinal tap.
BMB reveals Myelodysplastic Syndrome (MDS), technically a third cancer.
07/11-12/15 Cyclofosfamide + Fludarabine conditioning regimen.
07/16/15 Total Body Irradiation.
07/17/15 Haploidentical Allogeneic Transplant receiving my son's peripheral blood stem cells.
07/21-22/15 Triple dose Cytoxan + Mesna, followed by immunosuppressants Tacrolimus and Mycophenolate Mofetil. 
07/23-08/03/15 Blood nose dive. Fever. Hospitalized two weeks.
08/04/15 Engraftment official - released from hospital.
08/13/15 Marrow is 100% donor cells. Platelets climbing steadily, red cells follow.
09/21/15 Acute skin GvHD arrives. DEXA scan reveals osteoporosis.
09/26/-11/03/15 Prednisone to control GvHD.
To date: 17 chemotherapeutic drugs in 8 regimens. 4 of those drugs at least twice.
Knowing the redemptive value of suffering makes all the difference.

I have felt like a human durability test, but I always remember that "Life is worth living"

lindary's picture
lindary
Posts: 338
Joined: Mar 2015

Reading all of that in a time line makes it even more amazing. If I read it right you were only in the hospital for Stem Cell about 2.5 weeks. My dr is saying 3 - 4 weeks for my Stem Cell. I hope you stay in remission for a very long time. 

po18guy's picture
po18guy
Posts: 340
Joined: Nov 2011

My transplant was designed to be outpatient, if you can beleive it. But, the schedule of the conditioning regimen, and post-transplant chemo (immune suppression) made a stay in the hospital necessary. But, this was at SCCA/Fred Hutchinson, where they are old hands at transplants. Just for your information, I am a moderator at another forum and they have just inaugurated a transplant forum there: http://www.cancerforums.net/forums/57-Transplant-Forum

All the best to you as you prepare for your transplant! 

lindary's picture
lindary
Posts: 338
Joined: Mar 2015

Interesting. Now that mine has been postponed until after the first of the year it gives me a chance to make more contacts. Thanks for the link. Reason for the postponement is that they found an abnormality in my bone marrow which means we have to go with a donor.

 

po18guy's picture
po18guy
Posts: 340
Joined: Nov 2011

That may actually be good news. A donor's immune system has never encountered your lymphoma cells, and so is much more likely to attack and kill them. Yes, there are some other issues to deal with, but they are not cancerous.  

lindary's picture
lindary
Posts: 338
Joined: Mar 2015

And they have drugs to deal with those other issues.

I'v done a little reading about donor t-cells but now I have to focus more on that. 

IrynMaydin
Posts: 2
Joined: Jan 2016

My husband is newly diagnosed PTCL NOS.  We've been scouring the internet for information and help.  My brother came across your success story and it's given me a small measure of hope.  We started at Medical University of South Carolina and quickly decided they would not have enough experience to give my husband a chance of survival.  We are in the process of getting a referral to Duke Medical University, but after further reading this weekend, believe his best hope will be at one of the top cancer centers and we're looking at Sloan Kettering.  I don't know how we'll make this work financially, but we get one shot at this so we have to find a way.  PO18GUY, are you open to communication?  My husband has many questions and I'd like to provide him with a resource, a survivor, a kindred spirit.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1869
Joined: May 2012

Iryn,

If you click on PoGuy's name, you will see that he last logged on January 16. Of course, members can visit without logging on, so he may have looked at things more recently.

You can attempt to reach any member by using the CNS Email feature, which may more rapidly get his attention.

I grew up in Charleston, decades before the Hollings Cancer Institute was ever begun (I now live up near the NC line, toward Asheville). Duke is excellent, Emory (in Atlanta) and Vanderbilt (Nashville) are next best in the Southeast. 

M.D. Anderson, Houston, Texas, is regarded as equal to Sloan Kittering in quality. M.D, Anderson has "satellite", associated hospitals around the country, which share expertise.

Good luck with your search,

max

IrynMaydin
Posts: 2
Joined: Jan 2016

Thank you for the info, Max.  I'm new to this site and haven't learned how to navigate it yet.  Reaching out to him directly is definitely the better option.  

po18guy's picture
po18guy
Posts: 340
Joined: Nov 2011

I know it's been awhile, but I hope that I can help in some way. 

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