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Peripheral T cell NOS Non Hodgkins lymphoma

michellelemon
Posts: 29
Joined: Dec 2009

Anyone out there with this? My father was diagnosed with this 5 months ago - stage 3 - no organs involved thus far - just finished 5th treatment chemo (CHOP) - handling it fairly well - regression in all of his nodes - 6th round will be in early January, 3 weeks later a CAT scan to see where we are - and he is expected to go through a stem cell (autologous) transplant soon after. Just seeing if anyone has experience with this... Thanks!

michellelemon
Posts: 29
Joined: Dec 2009

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!

Mallory's mom
Posts: 7
Joined: Mar 2013

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!

michellelemon
Posts: 29
Joined: Dec 2009

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!

soldierup63h
Posts: 1
Joined: May 2013

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
Posts: 7
Joined: Mar 2013

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's picture
illead
Posts: 474
Joined: Aug 2012

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
Posts: 29
Joined: Dec 2009

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
Posts: 29
Joined: Dec 2009

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
Posts: 29
Joined: Dec 2009

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
Posts: 237
Joined: Nov 2011

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
Posts: 29
Joined: Dec 2009

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
Posts: 7
Joined: Mar 2013

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.

michellelemon
Posts: 29
Joined: Dec 2009

Dad's rash seems to be subsiding - and all attempts at my insistence that we notify the oncologist ( I said , at least we could just simply call the nurse there just to get her take), were met with little enthusiasm or cooperation.  It's a delicate balance between helping and taking over, which I am trying to embrace... His energy level is better too so we pray that it is/was nothing major. Will hug him for sure!:-) How is Mallory?

michellelemon
Posts: 29
Joined: Dec 2009

So what do I get for my 77 year old, peripheral t-cell, NOS cancer/stem cell transplant survivor father for Father's Day? So glad he  is here! with us and doing pretty well. He needs new knees - the spirit is willing, but his knee issues are inhibing his mobility somewhat. It is not a new thing - he was rejected, after being drafted for the Korean War (!), due to his knee issues (old football injury), and they have come back to haunt. I have suggested knee replacement surgery several times, and he is not adverse to ti, so we shall see.... He has to keep up with 83 year old Mom!:-) The love and bond they have - unbelievable - after 55 years of marriage! Prayers for all!:-)

michellelemon
Posts: 29
Joined: Dec 2009

Have not been on here in a while but keep all in my prayers!  The latest is that they did a biopsy on Dad's skin rash issue and it turned out to be nothing of major concern - just a reaction to a medication, but he is still cancer free! He has gained back so much weight that he unfortunately was diagnosed as borderline diabetic again. But Mom has him on a strict diet and he has already lost weight and they are giving him the chance to lose more before they put him on medication for it. Good problems to have, I guess, in light of all? His knees are a continued issue and the orthopedist said he was reticent about knee replacement, due to Dad's two previous pulmonary embolisms. Bothers me as there has to be some solution, as he is healthy otherwise but not as mobile as he could be.... but I try to keep the main focus. Cancer free still and basically healthy otherwise, after this bout with Peripheral T cell NOS lymphoma and a stem cell transplant! At 77 now! Continued hope!

michellelemon
Posts: 29
Joined: Dec 2009

When I initially contacted this website, we were not very hopeul, as I scoured the net for survivors of this, finding none. I was watching my father dying, his lymph nodes all cancer ridder and his lymphatic system shutting down. I do not take a moment for granted that he is here with us, still cancer free and doing well. I wish to offer continued hope  to new diagnosies and pray for those and their families who have not had as much good fortune in dealing with this.

michellelemon
Posts: 29
Joined: Dec 2009

I hope all are well and able to enjoy a lovely Christmas. So blessed that Dad is still doing well, cancer free, and able to look forward to all three of us children and several grandchildren for Christmas. We do not take these things for granted. Prayers and good thoughts for all who have struggled/are struggling through this.

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