Peripheral T cell NOS Non Hodgkins lymphoma

po18guy said:

Amazing success for CHOP.
Given PTCL's reluctance to respond to the old-line therapy of CHOP, your father's response is excellent. What a blessing! PTCL-NOS (or US) is actually a quite wide variety of unknown sub-types of PTCL. Thus, some respond to CHOP while others simply do not. There is no known regimen to which any given variety will respond, so doctor guessed correctly. And, the Auto SCT during first remission gives him a pretty good chance of remaining disease-free for the remainder of his life. Since my variety was highly resistant to chemo therapy, and either was not eliminated by chemo, or relapsed immediately, I do not have the option of an Auto SCT. Neither do I have the option of an allogeneic SCT, as there is no known donor. However, a new class of drugs has emerged, with great promise: the "inhibitors." I have received HDAC inhibitor Romidepsin/Istodax (histone deacetylase inhibitor) now for over 3 1/2 years, and have been in full response almost as long. There are other HDAC inhibitors available, and other "inhibitor" drugs in trial. A new variety is the Aurora Kinase Inhibitor, which along with the HDAC inhibitors, either forces or restores normal cell division. These drugs are far less toxic than conventional chemotherapy and can be tolerated for longer periods of time. Something to keep stored in the back of one's mind just in case. However, we hope and pray that this never happens.

michellelemon said:

Hi Podie!
So glad to be able to offer that encouragement! Prayers for you and your husband!:-)

My Dad, at 76 now, is still doing well - cancer free and just living his life! There is hope! We no longer live in the cancer world - no more regular scans, etc. - not the focus any longer -  but it was ours for quite some time and we do not take it for granted. He prefers not to dwell on it and just look forward. I get that but also want to continue to offer encouragement where we once had little!:-) I think he is just glad to have it all behind him currently and wants to look forward! This year, he traveled to his granddaughter's wedding and also met his two great-grandchildren from his oldest granddaughter for the first time! And has had many lovely experiences since;-) Yes, my parents are gettting older - Mom was a "cougar" - 7 years older than Dad, at 83 now - but still beautiful and amazingly vibrant and active - she has been Dad's primary caregiver all of this time -and they celebrated their 54th anniversary this year! Mom is also a cancer survivor - 18 years since in remission from stage 2 colon cancer. Hope is alive! Pryaers!

epicc said:

Great Story

Hi Michelle,

I have enjoyed reading your journey.  My mom at 82 was recently diagnosed wih Stage IV Intravascular Lymphoma (in the blood).  It has been a very tough 3 months for my parents and my sister and I.  She was just in ICU last month with a blood clot just like your dad.  I was told very common in older patients.  She had started with R-CVP instead of R-CHOP.  They were worried that R-CHOP would be too strong.  R-CVP was not working very well and they changed her to bendamustine rituxan which as worked very well and she looks great this month.  Before she got sick she was very active and had never been sick before.  My mom is 82 and My dad is 76.  My mom also a "Cougar".  LOL  Just wanted to share.  So happy your dad is doing well.  It has given me some hope that my mom could possibly reach some kind of remission.  Prayers to you and your family.

 

Emily

 

I am so sorry to hear that your Mom is going through this, but glad to hear that she is responding well to her latest treatment! Yes, the blood clots, I have learned, are fairly common - and I wonder why, upon treatment designation, blood viscosity is not checked to prevent them? But I am so glad she made it through those also. It all bodes well. I am glad to be able to offer the encouragement. And how cute that your Mom is a "cougar" too! Love it! 

Please keep us posted! Prayers to you and your family as well!

Michelle

michellelemon said:

Hi Emily

I am so sorry to hear that your Mom is going through this, but glad to hear that she is responding well to her latest treatment! Yes, the blood clots, I have learned, are fairly common - and I wonder why, upon treatment designation, blood viscosity is not checked to prevent them? But I am so glad she made it through those also. It all bodes well. I am glad to be able to offer the encouragement. And how cute that your Mom is a "cougar" too! Love it! 

Please keep us posted! Prayers to you and your family as well!

 

Michelle

I keep all in my prayers and hope for the best for all. The latest on my Dad is that he had a routine follow up visit to the oncologist the other day and all went well! He will be 77 next month! And we look forward to celebrating this birthday with him! Our concern now is his knees; he had an injury to them years ago and has had issues over the years; the arthritis it is causing now, though, is limiting his mobility and we are looking into knee replacement surgery. No sense going through all he has been through, only to be limited by something so non-life threatening, considering the vibrancy and wellness otherwise he has re-attained. When I look back on all he has been through and more than survived, I agree - let's do this!. Surgery will require cutting back on the coumadin for a brief period. But all will be kept in mind by the doctors. I keep recalling him, after being in remission after initial chemo, but him knowing he had to do more to save his life, walking into that cancer clinic, well dressed in his Tommy Bahama shirt and shoes, laying on that hospital bed, saying "do what you have to do". And it was not pretty after that. But he endured it all to great result! So I think he deserves new knees to keep up with daily walking routine with 83 year old Mom! :-)

po18guy said:

4 years and counting

Great news! I received a call from the clinical trials nurse Wednesday. She advised me that my scans of last Monday (March 18th) showed no evidence of disease. That makes 50 cycles of Romidepsin and four years in response. Michelle, I pray that your dad never faces relapse, but if he does, Istodax (Romidepsin) is a very viable option. 

I am so glad to hear that for you!! Great news, indeed!! And great advice. My dad continues to be in remission as well - three and a half years now ( he went into remission 3 months after initial chemo and has remained there, through it all.) Hard to believe, but we celebrate his 77th birthtday in two weeks! Thank you for prayers and will keep you in mine:-)