subcutaneous panniculitis like t cell lymphoma

hallo I am from italy my husband aged 37 was diagnosed with subcutaneous panniculitislike t cell lymphoma alfa beta cd8+ last february.He underwent 6 cycles of promace cytabom and ended mid july.

The first pet exam (made late may) was ok, it seemed he reacted good to chemio. He will make another one in August to see if he is free from it.

Doctors say prognosis is good for this kind of lymphoma, is there anyone who can say something to me? A doctor or someone diagnosed with the same disease?  

thank you and pls apologise my English

patrizia

Hi Patrizia,

My roommate also has non-Hodgkin's lymphoma, and is in the latter stages. When lymphoma is caught early, it does have a good cure or remission success rate. Do you know which stage your husband's cancer is? It would be 1, 2, 3 or 4, with 4 the very last stage.

My roommate has a very low platelet count; it dropped to just 1000 a few days ago, so they did plasma pharesis, and now it's 5000. Still critically low, but at least a little better. I hope your husband's blood counts are OK.

Foods that may help are red meat, lemon and grapefruit juice.

Wish you both all the best!

Lisa in Arizona, USA

Dear Liza

tears came to my eyes when reading your message as I really suffer when we are so many people suffering with our beloved.

MY husband has a T cell and since it is a cutaneous one they did not give him any stages. They only made hime the bone marrow aspiration and tac before beginning the chemio and they found out no visceral involvment was there so that was good. His kind of lymphoma is vary rare and doctors say curable but of course your life changes. HIs blood counts are better now, he ended the chemio one month ago and in september he will see doctors again. The second  p.e.t he made last week was negative so I pray e.thing will come to an end, but I am always afraid things will not be good, I think this is normal....sorry for my English I am sure I cannot write what I really mean but I am sure you can understand. I have two young girls (2 and 5), what about you? My thoughts  are with you even if I do not know you personally and I hope something good will happen to you.

I wish you all the best

patrizia from italy

Hi Patrizia,  I am an 8 year survivor of panniculitis like t cell lymphoma.  I was diagnosed at 22 years old in 2001.  Then,  you could barely find any information on this type of lymphoma.  At that time,  my doctors had never seen this type of lymphoma,  so I was an experiment I guess.  I was given 6 rounds of chemotherapy-CHOP is what they called the type of treatment they gave me,  very strong chemo.  Then I went Duke University Medical Center for High Dose chomotherapy followed by an autologous stem cell transplant.  I was able to return home in mid november and began radiation in January just to make sure they "pulled out all the stops".  I was told I had a VERY aggressive and VERY fast cancer,  so upon diagnosis,  my treatments began the following day and I was never really given a prognosis or anything because no one knew what to expect.  Again,  that was 8 years ago,  and Thanks be to God,  I am still cancer free!  I was also told after so much high dose chemo I would probley never have children,  but 3 1/2years after transplant,  I found out I was pregnant.  I now have a 4 year old little girl who is everything to me and my husband.  Our little miracle!  Don't be discouraged,  I know this is very scary and very confusing,  but hopefully hearing my story can bring you some comfort that there is hope for a good outcome.  I hope the next PET scan has good results as well and I will keep your husband in my prayers.

Pam

Kia ora Patrizia. I too was diagnosed with this particular lymphoma back in 2003. At that time mine was low-grade. I have had mild radiation on my legs and chemo last october. This also was a mild form of dose. Most of the time I am on and off with prednisone. My discomforts are mainly from swelling mainly in my fingers. God has been really good to me and I belong to a caring church group called the Kaikoura Vineyards. This is where I also live. Since 2003 I have had 2 grandchildren which brings me so much joy and happiness into my life. I now have 5. 3 of them live with me. I am a wait and see case. I see my Oncologist on the 16th of this month in Christchurch, which is 2 hours away. I still drive myself there which I enjoy  our local Cancer Group have also been supportive. I give all the praise to our Lord without him I surely would have let this cancer get me down. Im the only one in New Zealand who has this rare type. I also have been introduced to glyconutrients by my daughter Darlene for the last 12 days. They help to strenghten my cells. Because therre is no cure for my one I look at other alternatives that suits me condition so far these nutrients have been great. I wish your husband all the best and a speedy recovery so that you both can enjoy life. Hope to hear from you

Tamara J. New Zealand

Dear Pam

your words gave me hope and happiness, I am happy your story turned out well. You are right little is known about this disease since there are not many cases in the world. The pet scan my husband did in August was negative so it seems the lymphoma has gone away, let's hope so, He still has some swelling at the ankles and still needs to recover since the promace cytabom chemio is a very strong one. Mid september he will do the final control with the dermatologist and hematologist and let's hope e.thing goes well and he can bring back his life, he is a policeman and in Italy where we live if you are a policeman and do the chemio they put you on leave and you can imagine at 38 years of age it is not fair to stay at home. We too have children, two girls aged 5 and 3 and they are his strenght. Where do you live in the US? I live in Milan a big city in northern italy and luckly our dermatologist is specialised on these kind of lymphoma. I thank god he has the alpha beta and not the gamma delta. I guess when you were diagnosed they did not make the difference between the teo different phenotype and the disease was thought to be very aggessive while as far as I can see the alpha beta is much less aggressive and hits only the skin. In effect he had no sign of lymphoma  but the skin. One question I have for your. Are you able to run a normal lif after strong chemio? He says his legs are very weak. (he ended the cycles in july).

Thank you again for your words, let's keep in touch if you do not mind and pls apologise me for my English...

ciao

patrizia

Dear Tamara,

I am sure you are not the only one in new zealand, our doctors say that yes this lymphoma is rare but many cases are also misdiagnosed, so I am sure you are not alone and I am sure you have the strenght to beat it. Try to get strenght from your children and grandchildren, my two little babies help my fabio to never give up. I wish you all the best and let's keep in touch.

ps. he had a lot of problems with this prendnisone since he kept on swelling and this was very depressing for him. His fingers like yours were terrible all the times.

A big hug

patrizia

Yes,  I feel I am living a great life now,  still have days when I have little energy,  but that could be just "getting older".  Since I was diagnosed at 22 years old and am now 30,  I was "put down" at a young age.  Sometimes I wonder if I would have more energy and stamina than I do if this hadn't happened to me,  but who knows?  The high dose chemo I received before the stem cell transplant basically kills everything-you no longer make red or white blood cells,  plasma,  platelets,  nothing.  Once the stem cells are transplanted and grafted,  you begin to produce this again,  and the stem cells basically start a new immune system.  It was a long road,  I couldn't even go swimming for a year due to possibley catching something in the water.  And yes,  my legs,  hips,  and back bothered me alot during my treatments.  I wonder sometimes if it's because those are some of the largest bones in the body and the bone marrow is where all the cells are made.  And I don't know which phenotype I had,  no one ever specified.  Also,  you mentioned a dermatologist,  but my skin itself never was affected.  I had tumors in the layer of fat under the skin.  The first I saw was on my left rib cage,  just under my breast.  I thought maybe it was a cyst,  and went to a general surgeons office,  he agreed,  and removed it there in his office.  It turned out to be a lipoma,  just a ball of fat.  Looked completely normal to me and to the doctor,  but standard procedure was to send it for pathology.  That's when the bad news came a few weeks later.  By then,  I still had stitches from it being removed and it was already growing back along with 2 more in my left breast and one at the right groin area.  They immediately began shrinking when chemo was started.  And so far-haven't returned.  It never affected my lymph nodes or my bone marrow,  just the fatty tumors.  I even had a complex about the cancer attacking the fat under the skin,  I wasn't a heavy person,  you could say "average",  not heavy,  but certainly not thin. LOL  But it bothered me that I had something related to fat cells.  I guess thats a female complex to always worry about weight issues.  LOL

But I wonder if I had the other type,  because again,  I never had "skin" problems,  it was under the skin in the fatty layer.  And the docs everywhere stressed the aggressiveness and the need for starting immediate treatments and doing everything they possibley could.  Ordinarily-stem cell transplants aren't even considered until you have a second occurance of cancer,  but they said they knew this would come back if they didn't try the transplant first.  No since going into remission after only recieving chemo,  knowing it would return.  They didn't even wait or offer for me to look into freezing some of my eggs so I could possibly have children later (if I survived) They said there wasn't time to do all of that because they had to start immediately.  But God has a plan for all of us,  because as I told you, 3 1/2 years later,  I was pregnant.  Surprise!  My doctors at Duke were just as surprised as I was.  They said myself and only one other patient of theirs have conceived after the types of high dose chemo we recieved.

Back to the weakness in your husbands legs,  I want to say it was probley a year or so after everything before I realized I wasn't complaining of pain and weakness almost daily.  Give it time and don't over do things,  and he will regain his strength.  It just takes a while,  so go slow about things.  His body has basically had poison run through it for every treatment.

I live in North Carolina.  About 45 miles west of Charlotte(which is one of our biggest cities that most have heard of)  But,  wow,  you live in Milan.  I would absolutely love to go there.  You always hear of Milan,  I'm sure it is just beautiful there!  Italy is one of the places lots of people dream of being able to visit,  and you live there!

Yes,  I would love to hear back from you and know how your husband is doing.  Hopefully all will go well and he will be back to his old self soon!

Sincerely

Pam

Hi Patizia,

I'm sorry I'm late replying, but unfortunately my roommate lost his battle with lymphoma and passed away August 26th. We were in Tucson with him and I just got back to my hometown Sunday.

The doctors ran out of answers and still aren't sure if he died from the lymphoma, or ITP or both; we will recieve the death certificate soon and maybe that will shed more light on the cause.

I hope your husband is doing better now and he will be in my prayers, along with you and your two lovely young daughters. My son is grown, so I have no more little ones, but am glad you do; they are a source of so much joy and inspiration and both are at a wonderful, sweet age, so I hope you can enjoy them to the fullest, and your husband as well, even though I know it's difficult for him.

 Is he at home now? Being at home rather than a hospital makes them feel so much better, but I'm sure he's getting the best of care either way.

Please let me know how he is and also how YOU are doing. I will understand whatever feelings you have and our thoughts are probably the same.

 I hope to hear from you soon.

With love from America,

Leah

P.S. Your English is just fine and I can easily understand you...no problem at all! 

Kia ora Patrizia. I forgot to tell you that means hello in Maori which is the naitve language in New Zealand. I have just returned from babysitting my 2 grandchildren in Christchurch. Dakota is 13 and Drae is going onto 22months. They all been on a holiday in beautiful Hawaii and I so missed them heaps. They had a great time and bought me back a little ukulele a musical instrument but my left hand fingers are still a bit stiff but I so enjoyed my time with them.

Now Im back in Kaikoura with my daughter and her children Tiaki 13 Marohi 11 and baby Maia 9weeks. They all live with me so our household can get rowdy at times. The boys are mad on rugby, They both play for our local high school  but they just finished this years season and both their teams did very well.

We are just geting over our winter but we still have heaps of snow on our mountains. I love it when its warm but I cant go out into the direct sun without protection. My hair has grown back but a bit thin still on the top.

I eat very well and sleep very good except my hands get quite achey. my lymphoma has been busy attacking my face, It has left some deep indents more on my left side. Theres no way to stop all this activity. other than to focus on what you can do best.

I am an artist who works with flax. Have set up my garage as my workshop and this afternoon I went up to our Marae to cut some flax. There is a lot of preperation to do before i can actually weave. What strength i do have in my hands is a blessing  but i dont overdo it. I find doing arty stuff gives me pleasure along with planting vege garden and keeping my yard looking nice. We are going to see Bill Sebrisky who is a very popular Faith Healer on Wednesday night. I go back down to Christchurch to babysit my grandchildren again.

I feel like i have to keep my muscles working so that they dont go weak on me. We hope to go to the beach to get some paua. there very yummy

The boys love to see if they can find them along with crayfish and kina.

I think Kaikoura is a lovely place to work through ones cancer. We have the mountains close by the sea and our one street town. Its a very busy town because we have whale watching here and dolphin swimming.

Ops I must leave on this note take care.

Tamara J.