Peripheral T cell NOS Non Hodgkins lymphoma

13

Comments

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,803 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!

    arthritis

    Michelle,

    I used drugs different from your dad's, but many chemos do aggrevate arthritis, at least temporarily. Rituxan and WBC boosters (neulasta and the others) are especiually notorious for this.  I did chemo with severe arthritis, bone ossification from 18 fractures, and a broken back from years earlier, but got through it. I was younger (53) at the time, but it can be done.  At first the neulasta almost put me in the hospital, but the doc cut the subsequent doses to a fraction, and it still worked fine, and with only minimal pain.  Bless you and your dad,

    max

  • girliefighter
    girliefighter Member Posts: 232

    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?

    Headches

    Mallory's Mom,

    I am currently suffering from these headaches that you speak of.... I called my oncologist and she suggested that I go to my primary care provider snd get imitrex, that is just what i did yesterday. I was prescribed 100mg of imitrex, it is a migraine drug. It stopped my headache yesterday and to be honest there is only one other thing that has helped stop it one other time. My headaches will last for days and cause vomitting, motion sickness, I couldn't even look at anything with a pattern on it without feeling nausea.

    Praying for her

    XXXOOO

    Carie

  • michellelemon
    michellelemon Member Posts: 31

    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?

    Hi, Mallory's mom

    Glad to hear Mallory is gaining back strenght but not sure about the headaches, poor thing! My Dad did not seem to have that particular side effect, but plenty of others and they are probably different for all, depending on age and gender. I am glad that the doctors are treating this symptom and encourage you to be persistent about finding relief for her. Please keep me posted! Prayers!

  • michellelemon
    michellelemon Member Posts: 31

    arthritis

    Michelle,

    I used drugs different from your dad's, but many chemos do aggrevate arthritis, at least temporarily. Rituxan and WBC boosters (neulasta and the others) are especiually notorious for this.  I did chemo with severe arthritis, bone ossification from 18 fractures, and a broken back from years earlier, but got through it. I was younger (53) at the time, but it can be done.  At first the neulasta almost put me in the hospital, but the doc cut the subsequent doses to a fraction, and it still worked fine, and with only minimal pain.  Bless you and your dad,

    max

    Hi Max

    Thank you for your post and I am glad you got through it! Yes, the Neulasta was a staple, as I recall, so that makes sense. Thank you for pointing that out.  He did not have the initial reaction to it, about which we were warned, but most probably a cumulative effect. God bless you too, Max!

  • michellelemon
    michellelemon Member Posts: 31

    Headches

    Mallory's Mom,

    I am currently suffering from these headaches that you speak of.... I called my oncologist and she suggested that I go to my primary care provider snd get imitrex, that is just what i did yesterday. I was prescribed 100mg of imitrex, it is a migraine drug. It stopped my headache yesterday and to be honest there is only one other thing that has helped stop it one other time. My headaches will last for days and cause vomitting, motion sickness, I couldn't even look at anything with a pattern on it without feeling nausea.

    Praying for her

    XXXOOO

    Carie

    Hi Girliefighter

    I am sorry to hear about your headaches, poor thing! I hope that the imitrex helps! An aside thought, maybe be checked out for any inner ear problems, as well. I have found that people with inner ear disturbances are more prone to motion sickness, etc. and it is easily treatable. Sounds weird, but the crytals in yout inner ear can get out of place and it causes a loss of equilibrium which makes one more suscptible to motion sickness, etc., which I am sure is only compunded by the throwing off of so much which occurs with chemo.  Keep us posted and will keep you in prayers!

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

    Headches

    Mallory's Mom,

    I am currently suffering from these headaches that you speak of.... I called my oncologist and she suggested that I go to my primary care provider snd get imitrex, that is just what i did yesterday. I was prescribed 100mg of imitrex, it is a migraine drug. It stopped my headache yesterday and to be honest there is only one other thing that has helped stop it one other time. My headaches will last for days and cause vomitting, motion sickness, I couldn't even look at anything with a pattern on it without feeling nausea.

    Praying for her

    XXXOOO

    Carie

    Headaches

    Girlie fighter,

    How are you feeling? I'm sure you never planned to be in this situation and I know how overwhelming it can be. My daughter's headaches continue, but seem less frequent. They did give her Imitrex once early on in her treatment. Did not work for her. Overall, she is feeling better. She even went back to work part time as an ICU nurse. It has been a tough road and I pray for strength and comfort for you during treatment. It is a great comfort to have the support of others who really know what you are going through. Please keep us updated.

    Love, 

       Mallory's mom

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

    Hi, Mallory's mom

    Glad to hear Mallory is gaining back strenght but not sure about the headaches, poor thing! My Dad did not seem to have that particular side effect, but plenty of others and they are probably different for all, depending on age and gender. I am glad that the doctors are treating this symptom and encourage you to be persistent about finding relief for her. Please keep me posted! Prayers!

    Hi, Michelle

    Mallory is improving. Continues to have headaches,but less frequently. Had petscan and bone marrow biopsy 100 days post transplant. Biopsy was negative. Scan showed slight activity in lymp node in her neck. Doctor feels this is probably ok. I pray she is right. We are thankful for your continued attention to this site. It is great to here about someone like your dad. You are a blessing!

  • soldierup63h
    soldierup63h Member Posts: 1
    ice

    Hello guys I have read your comments.. I am 25 years old and was diagnosed with peripheral t cell lymphoma unspecified.. I am in the Army and due to misdiagnosis over and over again, I was diagnosed at stage IV. My doctor sent me to MD Anderson. I was diagnosed in November 6 2012 at the age of 24 and the same day I did CHOP. I responded well and then stop responding.. I did finish all 6 rounds though, after not being cured I did GEMOX, I have been doing GEMOX for 3 cycles and my tumors in my liver disappeared but it didnt knock the cancer from my bone marrow. Tomorrow I get admitted to the hospital and I am going to do ICE, I have had so many set backs with this battle and it is emotionally draining. I feel normal now and I know that ICE will take a toll, I guess we will just see, it is nice to see that your dad is doing well, I am a candidate for an allo Stem cell transplant as well but they are still looking for donors because I have a rare marker in my hla, as rare as this cancer. I hope and pray that I follow yor dads path and mallorys path as well, have a great day guys.

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

    ice

    Hello guys I have read your comments.. I am 25 years old and was diagnosed with peripheral t cell lymphoma unspecified.. I am in the Army and due to misdiagnosis over and over again, I was diagnosed at stage IV. My doctor sent me to MD Anderson. I was diagnosed in November 6 2012 at the age of 24 and the same day I did CHOP. I responded well and then stop responding.. I did finish all 6 rounds though, after not being cured I did GEMOX, I have been doing GEMOX for 3 cycles and my tumors in my liver disappeared but it didnt knock the cancer from my bone marrow. Tomorrow I get admitted to the hospital and I am going to do ICE, I have had so many set backs with this battle and it is emotionally draining. I feel normal now and I know that ICE will take a toll, I guess we will just see, it is nice to see that your dad is doing well, I am a candidate for an allo Stem cell transplant as well but they are still looking for donors because I have a rare marker in my hla, as rare as this cancer. I hope and pray that I follow yor dads path and mallorys path as well, have a great day guys.

    There is hope

    Prayers for you. Are you seeing a lymphoma specialist? Mallory's doctor is Julie Vose,MD at The Nebraska Medical Center in Omaha,NE. She specializes in treatment of T cell lymphoma. Mallory is in a clinical trial using Pralotrexate. From everything I've read you really need a specialist. Don't be afraid to advocate for yourself. Most doctors are gifted and intelligent people, but they cannot have every answer and they have many patients. You must push to get the very best care for yourself! Stay strong. You are not alone in this fight. Please stay in touch.

  • illead
    illead Member Posts: 884 Member

    There is hope

    Prayers for you. Are you seeing a lymphoma specialist? Mallory's doctor is Julie Vose,MD at The Nebraska Medical Center in Omaha,NE. She specializes in treatment of T cell lymphoma. Mallory is in a clinical trial using Pralotrexate. From everything I've read you really need a specialist. Don't be afraid to advocate for yourself. Most doctors are gifted and intelligent people, but they cannot have every answer and they have many patients. You must push to get the very best care for yourself! Stay strong. You are not alone in this fight. Please stay in touch.

    We are thinking of you too

    Sounds like you have a rough road ahead and you are probably young at that.  This is a wonderful site to get encouragement and support.  Mallory's mom gave you some good advice.  I know MD Anderson is very good with Lymphoma but don't know about the T cell.  We hope for the best, hang in there, Bill & Becky

  • michellelemon
    michellelemon Member Posts: 31

    Hi, Michelle

    Mallory is improving. Continues to have headaches,but less frequently. Had petscan and bone marrow biopsy 100 days post transplant. Biopsy was negative. Scan showed slight activity in lymp node in her neck. Doctor feels this is probably ok. I pray she is right. We are thankful for your continued attention to this site. It is great to here about someone like your dad. You are a blessing!

    Glad to hear!

    Good that the bone marrow biopsy went so well! In PETscans, my Dad had a couple of similar alerts at times, but they did not turn out to be anything worrisome. Glas she is improving! In my prayers!

  • michellelemon
    michellelemon Member Posts: 31

    ice

    Hello guys I have read your comments.. I am 25 years old and was diagnosed with peripheral t cell lymphoma unspecified.. I am in the Army and due to misdiagnosis over and over again, I was diagnosed at stage IV. My doctor sent me to MD Anderson. I was diagnosed in November 6 2012 at the age of 24 and the same day I did CHOP. I responded well and then stop responding.. I did finish all 6 rounds though, after not being cured I did GEMOX, I have been doing GEMOX for 3 cycles and my tumors in my liver disappeared but it didnt knock the cancer from my bone marrow. Tomorrow I get admitted to the hospital and I am going to do ICE, I have had so many set backs with this battle and it is emotionally draining. I feel normal now and I know that ICE will take a toll, I guess we will just see, it is nice to see that your dad is doing well, I am a candidate for an allo Stem cell transplant as well but they are still looking for donors because I have a rare marker in my hla, as rare as this cancer. I hope and pray that I follow yor dads path and mallorys path as well, have a great day guys.

    Hi Soldierup

    The good news is that I have heard that ICE can do wonders! My Dad was also diagnosed at a very late stage - his lymphatic system had almsot entirely shut down, before diagnosis. I am sure you will find a donor for the transplant; for instance, one of the other patients near my Dad received matching umbilical cord cells. Remind them to look into these options, I would suggest. I am sure it is all trialsome, but have hope and you are in my prayers!

  • michellelemon
    michellelemon Member Posts: 31

    ice

    Hello guys I have read your comments.. I am 25 years old and was diagnosed with peripheral t cell lymphoma unspecified.. I am in the Army and due to misdiagnosis over and over again, I was diagnosed at stage IV. My doctor sent me to MD Anderson. I was diagnosed in November 6 2012 at the age of 24 and the same day I did CHOP. I responded well and then stop responding.. I did finish all 6 rounds though, after not being cured I did GEMOX, I have been doing GEMOX for 3 cycles and my tumors in my liver disappeared but it didnt knock the cancer from my bone marrow. Tomorrow I get admitted to the hospital and I am going to do ICE, I have had so many set backs with this battle and it is emotionally draining. I feel normal now and I know that ICE will take a toll, I guess we will just see, it is nice to see that your dad is doing well, I am a candidate for an allo Stem cell transplant as well but they are still looking for donors because I have a rare marker in my hla, as rare as this cancer. I hope and pray that I follow yor dads path and mallorys path as well, have a great day guys.

    Hi Soldierup

    Prayers for you - the good news is that I have heard great things about the ICE treatment! And also, please remember to keep in mind that there are options such as umbilical cord stem cells - which was the transplant case with my Dad's hospital neighbor. I am sure they will find the right one for you! I know it's a bit of a rough road but there is hope! God bless and keep us posted1

  • michellelemon
    michellelemon Member Posts: 31

    Hi Soldierup

    Prayers for you - the good news is that I have heard great things about the ICE treatment! And also, please remember to keep in mind that there are options such as umbilical cord stem cells - which was the transplant case with my Dad's hospital neighbor. I am sure they will find the right one for you! I know it's a bit of a rough road but there is hope! God bless and keep us posted1

    Good news!

    I keep all of you in prayers and wish to continue to offer encouragement! My Dad just had another routine follow up CTscan and we have great news - all is continued clear! He just met his youngest great grandson, baby Christopher, after having dealt with prostate surgery last week... he recovered well and quickly and all was quite successful. There is a constant reminder for him, in that he still has a port in his chest, which they flush regularly, but still do not want to remove. Prayers for all!

  • po18guy
    po18guy Member Posts: 1,461 Member

    ice

    Hello guys I have read your comments.. I am 25 years old and was diagnosed with peripheral t cell lymphoma unspecified.. I am in the Army and due to misdiagnosis over and over again, I was diagnosed at stage IV. My doctor sent me to MD Anderson. I was diagnosed in November 6 2012 at the age of 24 and the same day I did CHOP. I responded well and then stop responding.. I did finish all 6 rounds though, after not being cured I did GEMOX, I have been doing GEMOX for 3 cycles and my tumors in my liver disappeared but it didnt knock the cancer from my bone marrow. Tomorrow I get admitted to the hospital and I am going to do ICE, I have had so many set backs with this battle and it is emotionally draining. I feel normal now and I know that ICE will take a toll, I guess we will just see, it is nice to see that your dad is doing well, I am a candidate for an allo Stem cell transplant as well but they are still looking for donors because I have a rare marker in my hla, as rare as this cancer. I hope and pray that I follow yor dads path and mallorys path as well, have a great day guys.

    Soldierup63h, Did they mention HDAC Inhibitors?

    My PTCL-NOS was highly resistant to chemotherapy. I was also mis-diagnosed and was finally at stage IV with "innumerable" nodes and bone marrow involvement. At Fred Hutchinson, I had four cycles of CHOEP-14 and four cycles of GND back to back and it relapsed immediately when my health was too poor to receive any more chemo. I was offered a clinical trial of a drug in the category known as HDAC Inhibitors. The drug Romidepsin (Istodax) and it put me in remission. There has been no sign of the lymphoma for just over four years now, and I continue in treatment with the drug. Romidepsin's toxicity is quite low and there is one man who has received it for 5 years now. I am right behind him at 4+ years (54 twenty-eight day cycles).

    Here is a T-Cell Presentation that is worth watching. The doctor is a T-Cell Lymphoma specialist at Fred Hutchinsdon and I credit him with saving my life twice now. 

    http://www.presentme.com/audio2012/20121111LRFShustov/

  • michellelemon
    michellelemon Member Posts: 31
    I kind of don't like this

    Dad has been doing quite well, but is this week displaying an unexplained rash on his legs and is very fatigued. I recall all too well how this all kind of started with rash and fatigue. Primary care doctor is aware of this and just said to keep an eye on it - but she also did not see the signs initially. Dad is still - after all he has been through -in "just a rash - no worries - wait and see" mode. But I want him to see oncologist! In fact, insisting upon it tomorrow! Thanks for prayers that it is nothing major  - his CTscan showed no signs of anything just last month, so we hope it is just a reaction to meds he has had to take after prostate surgery or something else of the sort. All in my prayers!

  • Mallory's mom
    Mallory's mom Member Posts: 7
    How is it going?

    Praying that this will turn out to be nothing serious. I understand though why you are concerned. What did the oncologist say? Please give your dad a hug and keep us updated.

  • rabdoog
    rabdoog Member Posts: 3
    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.

    questions...

    Hi ..my name is Cathy.  I was diagnosed with PTCL NOS in July of '12 and did 6 rds of CHOP...2 mos. late it was back.  I am being treated at Cancer Center of America in Zion, IL.  they tried ICE on me in plans of a SCT, but I couldn't rebound from the ICE, so I only got 2 treatments.  In March I started on the Romidepsin.  I couldn't have it on the normal schedule as my platelets always run in the 20Ks, so I have it about ev. 2 - 3 wks.  My question is...

    how often do you have your treatments?? How often do you get a petscan or a ct?  Another question is .... how do I find responses to my replies?  I repled to someone else and have no idea of where to find his reply.

      Thank you...and God's best.I also am doing a protocal out of a book called Cancer Free, by Bill Henderson.  It is a lot of immune boosters, vitamins and a mostly vegan diet, but also no sugar, dairy or gluten.

      Thank you...and God's best.

  • po18guy
    po18guy Member Posts: 1,461 Member
    rabdoog said:

    questions...

    Hi ..my name is Cathy.  I was diagnosed with PTCL NOS in July of '12 and did 6 rds of CHOP...2 mos. late it was back.  I am being treated at Cancer Center of America in Zion, IL.  they tried ICE on me in plans of a SCT, but I couldn't rebound from the ICE, so I only got 2 treatments.  In March I started on the Romidepsin.  I couldn't have it on the normal schedule as my platelets always run in the 20Ks, so I have it about ev. 2 - 3 wks.  My question is...

    how often do you have your treatments?? How often do you get a petscan or a ct?  Another question is .... how do I find responses to my replies?  I repled to someone else and have no idea of where to find his reply.

      Thank you...and God's best.I also am doing a protocal out of a book called Cancer Free, by Bill Henderson.  It is a lot of immune boosters, vitamins and a mostly vegan diet, but also no sugar, dairy or gluten.

      Thank you...and God's best.

    Monthly

    Hey, Cathy! Not surprising that it relapsed immediately. CHOP is a real hit or miss regimen - but there is no recommendation for PTCL. I had dose intensive CHOP plus Etoposide (CHOEP) for four cycles, followed immediately by four cycles of GND (Gemzer, Navelbine and Pegylated Liposomal Doxorubicin). Mine relapsed immediately, as well. That is when the clinical trial of Romidepsin (Istodax) opened up. I entered the trial and went into complete response. I have remained there now for over four years. I was receiving infusion for 3 weeks in a row, then a week off for my blood to recover. After a bit over a year in remission, I dropped to treatment every two weeks. Another year after that, and I went to single monthly treatments, and scans are still clear. Where we go from here is anyone's guess - we simply don't know, as we are experimenting.

    Be careful with all alternatives, and please run them by doctor! Immune boosters are fine, but skipping sugar has zero value. Why? Our blood requires sugar for cellular and organ function. Our blood sugar level is very closely regulated or we become diabetic, or hypoglycemic. The same with alkaline water and other supposed cures. If we were in a Petrie dish, all of this might work, but our bodies function in a very narrow and precisely regulated range. If we starve the cancer, we also starve our body - there is simply no way around this, since the cancer is a part of our bodies. Now, targeted therapies like Romidepsin single out the tumor cells for destruction and basically leave the healthy tissues alone.

    Here is a T-Cell Lymphoma presentation that was put on by my doctor, a T-Cell Lymphoma specialist at Fred Hutchinson: http://www.presentme.com/audio2012/20121111LRFShustov/

    Yes, CSN is not asy to find replies on. Best to begin your own thread and check it daily for posts. Thank you, as prayer has sustained me.

    Jim 

  • girliefighter
    girliefighter Member Posts: 232

    Headaches

    Girlie fighter,

    How are you feeling? I'm sure you never planned to be in this situation and I know how overwhelming it can be. My daughter's headaches continue, but seem less frequent. They did give her Imitrex once early on in her treatment. Did not work for her. Overall, she is feeling better. She even went back to work part time as an ICU nurse. It has been a tough road and I pray for strength and comfort for you during treatment. It is a great comfort to have the support of others who really know what you are going through. Please keep us updated.

    Love, 

       Mallory's mom

    Just Checking in

    Mallory's Mom,

    Just checking in to see how things are progressing. I am praying this finds you all doing well.

    XXXOOO

    Carie