Peripheral T cell NOS Non Hodgkins lymphoma

24

Comments

  • Podie1956
    Podie1956 Member Posts: 6

    So sorry
    I am so sorry to hear of his passing. God rest his soul and prayers for you. All I can offer, scientifically, is that although my father's was found in every lymph node, it was not found elsewhere? And he responded to CHOP, somehow, after three treatments? I know more information needs to be made known about this form - we were operating very much in the dark. Take care and I hope you are well!

    Hey Michelle
    I was thrilled to read your post as my 66 year old husband is about to have an auto SCT after five rounds of Hyper CVAD chemo for Anaplastic Large Cell Lymphoma. They are rushing to get him the SCT at his first remission so I pray this will do the trick. Reading about your father made me feel really good!
  • michellelemon
    michellelemon Member Posts: 31
    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.

    Thank you for the info! and
    I am glad to hear about these HDAC inhibitors for you! I feel with time, more options become available which is great! Prayers!:-)
  • michellelemon
    michellelemon Member Posts: 31
    Podie1956 said:

    Hey Michelle
    I was thrilled to read your post as my 66 year old husband is about to have an auto SCT after five rounds of Hyper CVAD chemo for Anaplastic Large Cell Lymphoma. They are rushing to get him the SCT at his first remission so I pray this will do the trick. Reading about your father made me feel really good!

    Hi Podie!
    So glad to be able to offer that encouragement! Prayers for you and your husband!:-)
  • michellelemon
    michellelemon Member Posts: 31

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

    Continued good news!

    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
    epicc Member Posts: 137

    Continued good news!

    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!

    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

     

  • illead
    illead Member Posts: 884 Member
    Hi Emily

    So glad to hear your mom is doing so well.  We've been wondering about her.  Benda/Rit really seems to be a winner.  Hope it is as easy on her as it was on Bill.  Hope you and the rest of your family are able to relax a little and that your mom is starting to feel human again.  Our thoughts Bill and Becky

  • epicc
    epicc Member Posts: 137
    illead said:

    Hi Emily

    So glad to hear your mom is doing so well.  We've been wondering about her.  Benda/Rit really seems to be a winner.  Hope it is as easy on her as it was on Bill.  Hope you and the rest of your family are able to relax a little and that your mom is starting to feel human again.  Our thoughts Bill and Becky

    Hi Becky

    Hi Becky,

     

    I was going to email you in a few days.  I'm still keeping my fingers crossed!!!  She came home just last week from the hospital. She did not want to go to Rehab again, so we made it happen.  She has a 24 hour aid.  Very pricey but worth it.  She looks GREAT!!  She is eating better and my dad gets her up several times a day to walk a little.  She went to her doctor's appointment today and everything looked great.  So my sister made sure that her chemo date is set for Thursday Feburary 7th and 8th.  She gets Rituxan and 2 days of Benda.  I have to tell you, the nurse once again tries to push things out with no reason.  My sister sat there and said, I'm not leaving unless her chemo is scheduled on the exact date she needs it.  Not sure why they do this.  Very scarey.  But anyway, it's scheduled.  Now we pray nothing happens until next week.  My stomach of course is in knots.  Please pray for us.  Hope all is well with you and Bill. 

     

    Love, Emily

  • michellelemon
    michellelemon Member Posts: 31
    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

     

    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

  • illead
    illead Member Posts: 884 Member
    good news

    I was hoping that was the news.  That is so much better than what your mother went through before.  You guys stick to your guns with the nurses.  We have such a wonderful cancer center here, they treat you like royalty, and we actually look forward to going. Everyone is on a first name basis including reception.  Wish it could be that way for all, I think it really makes a difference.  Your mom is older, but I am confident that she will make steady improvement and very possibly back to her old self again.  I sure hope so.  Keep on keeping on, our thoughts and prayers continue with you, Becky

  • gunadi1965
    gunadi1965 Member Posts: 1
    Jenna K said:

    PTCL NOS
    HI
    My Aunt was just recently dx'ed with PTCL NOS. From what I've read, we're completely scared out of our mind. We live in Los Angeles, CA. Where can we go to get the best treatment in Southern Calif? Any suggestions? What type or kinds of clinical trials are running in S,Calif? What is her outcome? Any comments or suggestions welcomed. Thanks and sorry for sounding so scared.
    Jenna K

    Help line

    I noticed you are in LA. My wife has PTCL and started her chemo two weeks ago. We realize there are symptoms that will only occur to her. What we are looking for is a 24 Hr info line so we can ask when to go to the ER or how to handle situations.

    She fainted in my arms today. She was sitting on the toilet and asked me to help her. She went limp in my arms and completely passed out. We need help to start understanding the actual things that happen.

    Thanks for any help you can offer.

    H Salinas

     

     

     

     

  • michellelemon
    michellelemon Member Posts: 31

    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

    Continued good news!

    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! :-)

  • michellelemon
    michellelemon Member Posts: 31

    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

    Continued good news!

    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! :-)

  • michellelemon
    michellelemon Member Posts: 31

    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

     
     

     

     

  • po18guy
    po18guy Member Posts: 1,461 Member
    Great news!

    Michelle, some of the chemotherapy can also cause or aggrevate arthritis, and combined with his injury, I guess a new knee(s) are not unreasonable to expect. But, he's clearly a tough one, and has great, loving family support, so he might as well go for it. Thank you for checking in - especially when it is reassuring news. 

  • michellelemon
    michellelemon Member Posts: 31
    Thanks for support

    Sorry - I am not sure why that last post posted twice? But yes, my Dad continues to be cancer free  - good news in and of itself! And yes, it is clear that the high dose chemo did him no favors with his knee joint issues, but we have to realize, little price paid comparatively.  He desires to live in the post-cancer world -of which I do not blame him! But I am aware of what occurred and I want to continue to be a voice of hope!   Frankly, he actually remembers little of his sojourn with the stem cell transplant. It just knocked him out that much - they bring you to almost zero of all counts of anything life sustaining but then bring you back up with the introduction of  the healthy cells. Fascinating stuff! But, as I began this all feeling hopeless, helpless and confused, I am so happy to offer hope for others!

  • Mallory's mom
    Mallory's mom Member Posts: 7

    Continued good news!

    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! :-)

    Looking for other with

    Looking for other with nonhodgkins T cell lymphoma NOS. My 28 year old daughter was diagnosed one year ago after suffering rash, fever and night sweats. She has completed six rounds of chemo and auto stem cell. Had severe headaches throughout treatment. Is now 2months post transplant. Continues to feel weak, has less intense headaches and some night sweats. Her doctor gives us only basic information and offers no emotional support. We are, of course, scared to death of relapse. How long before she should feel better after transplant? 

  • po18guy
    po18guy Member Posts: 1,461 Member

    Thanks for support

    Sorry - I am not sure why that last post posted twice? But yes, my Dad continues to be cancer free  - good news in and of itself! And yes, it is clear that the high dose chemo did him no favors with his knee joint issues, but we have to realize, little price paid comparatively.  He desires to live in the post-cancer world -of which I do not blame him! But I am aware of what occurred and I want to continue to be a voice of hope!   Frankly, he actually remembers little of his sojourn with the stem cell transplant. It just knocked him out that much - they bring you to almost zero of all counts of anything life sustaining but then bring you back up with the introduction of  the healthy cells. Fascinating stuff! But, as I began this all feeling hopeless, helpless and confused, I am so happy to offer hope for others!

    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. 

  • michellelemon
    michellelemon Member Posts: 31
    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. 

    So glad to hear!

    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:-)

  • michellelemon
    michellelemon Member Posts: 31

    Looking for other with

    Looking for other with nonhodgkins T cell lymphoma NOS. My 28 year old daughter was diagnosed one year ago after suffering rash, fever and night sweats. She has completed six rounds of chemo and auto stem cell. Had severe headaches throughout treatment. Is now 2months post transplant. Continues to feel weak, has less intense headaches and some night sweats. Her doctor gives us only basic information and offers no emotional support. We are, of course, scared to death of relapse. How long before she should feel better after transplant? 

    Hi, Mallory's mom

    From my experience with my Dad, it frankly takes a while. The transplant lays you pretty low and it takes some time to get back to oneself. Do not be discouraged by this. It took several months, honestly, before my Dad felt more himself. It is just the nature of it. It is not meant to be a "quick fix", but an intense treatment with some after effects to secure a healthy future. But with her youth and having taken these steps so early on, it will probably not be much longer until she is feeling better! Please keep us posted!

  • Mallory's mom
    Mallory's mom Member Posts: 7
    Hi, Michelle

    Glad to hear your dad is doing well. Prayers for everyone fighting this battle. My daughter is gaining some of her strength back. She continues to have frequent headaches which vary from mild to quite severe. Doctors wonder if this is hormone related and started her on hormone replacement therapy about two weeks ago. So far, no real improvment. We hope this will get better with continued treatment. Did anyone else suffer from debilitating headaches during their illness or treatment?