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Aggessive T-Cell Lymphoma

schoolteacher
Posts: 1
Joined: Jun 2005

Morning Kindred Spirits! Diagnosed with T-cell Lymphoma in Feb. in Mayo Clinic Jacksonville. Their protocol was to return home and start standard CHOP Chemo immediately. Went to to UAB in Birmingham, but got a completely different protocol. Theirs was radiation on the site and then a wait and see approach. This was so radically different, I did not know how to make a decision as to which was correct. Went to MDAnderson Cancer Clinic in April, and was sent back home to start what Mayo recommended- Standard Chop Chemo. I have had the second treatment about a week and a half ago. The pain in my backbone/ribcage has been just about unbearable, starting about 3 days after the treatment. I don't see how my body can stand this for 6 treatments. Makes me wonder if UAB's more conservative approach might have been better. The no sleep thing for over a week is really getting me down. Hence the late hour of this e-mail. I would surely appreciate any of your experiences.

pkelly's picture
pkelly
Posts: 3
Joined: Apr 2004

hi schoolteacher. Like you, I had T-cell lymphoma. I also had large B-cell and follicular center cell lymphoma all at the same time. I had the standard CHOP plus Rituximab. The Rituximab was for my other cancers. You have made the correct decision! I went to Vanderbilt University's Ingram Cancer Center in Nashville, TN for my treatments. According to my doctor here at home, they are the best in the nation for lymphomas. So your choice of the CHOP is correct. I am so sorry for your discomfort. The pain in your lower back may be due to a bone marrow biopsy. The other pain may be because of the reduction of certain lymphnodes that have stressed a nerve. If this pain continues, tell your doc, he may schedule a cat scan to see what is going on. They generally will give you a catscan a couple of weeks after your 4th treatment. It has been 18 months since my last treatment. I am a woman of 38 now, and am still dealing with the side effects of the CHOP, mostly fatigue and weekness. I try not to complain, because it beats the alternative: dirt on my face!
If you are having trouble sleeping, ask your doctor to prescribe you something to help. Be sure to make yourself eat, even when you don't feel like it. I went thru 2 chemos without eating, but got hard headed and started to eat after that and it made a tremendous difference in my quality of life in between treatments. I also recommend keeping a diary of your symptoms. You will find that certain symptoms occur on the same days after each of your treatments, which will help you be better prepared for each day. Feel free to email me at my address in here if you need more support. I love this place, it helped me more than any medicine. Also, try our chat rooms. The folks here are wonderful!

sublime86
Posts: 3
Joined: Jul 2005

Hi my name is Shane and i was diagnosed with Lymphoblastic Non-Hodkin T-cell in late januruary of 05' and i just finished my sicth round of chemo out of eight. I hope everything is going ok for you through these times. I hope the chemo isnt to gnarly for you as it is for some people. It really hasnt been that bad for me at all I dont really get sick except when i get my intrithical chemo in my head, but its not 2 bad ne more. I was wondering what you mean by CHOP chemo I've never heard of that. Im on the MD Anderson protocol which seems to be working out quit well for my case and i hope yours is to. Your the only other person I've talked to with T-cell and Id be really happy to talk more with you to. I have a AOL instant messanger screename at spriteman231 you should message me one day. Good luck!

cdrmohan's picture
cdrmohan
Posts: 1
Joined: Aug 2005

Hi everybody! 42 yr recently retired physically very fit Naval officer,diagnosed surprisingly with NHL of the bone , aggresive, diffused large B cell in Jul 2005.Earlier misdiagnosis of frozen left shoulder and physio treatment in may/jun 2005 to sort it out delayed verdict till similar pains manifested in hip bones, right arm too. part of 9th rib too destroyed.further trigger was discovery of lyetic lesions in above bone parts thru scans.presently post radiation on left arm to reduce pain, now on standard CHOP plus Rituximab.Second cycle over, each spaced out by 3 weeks.first day right as rain, second day plenty of nausea, vomited almost everthing, diarhhoea etc. Third day onwards better, only slight nausesa with every meal ingestion, but hiccups galore continuously-till 7 th day and beyond.Weight loss initially about 5 kgs therafter steady.Weakness after talking, walking more than 30 min. Appetite terrific.WBC count does not drop below 5000 ;need to wait and watch other elements in future as treatment is still in early stage. Spirits, mind, and hair standing tall.Would appreciate advise on three aspects.
1. how to get rid of the irritating hiccups.
2. When can one safely get back to work, the only limiting consideration being exposure to infections at work, assuming I become strong enough to do so.Immediately post chemo does not appear possible, perhaps some time in between.
3. When does hair loss set in, if at all it does.
Comments please.Cheers and God bless!

now

afine
Posts: 1
Joined: Mar 2005

My husband just diagnosed with hepatosplenic t cell lymphoma. His spleen was removed but liver is enalrged. Just started chop chemo. I understand t cell is very rare, If you have nay further info I'd appreciated it.

Swilkin196
Posts: 1
Joined: Apr 2003

I am two years in remission from aggressive t-cell non-hodgkin's lymphoma of the bone. I had six rounds of chemo followed by a stem cell transplant. Let me know if you need more info.

tac52
Posts: 3
Joined: Oct 2005

What protocol did you do? Was your stem cell auto or allo? How long after the transplant was it before you felt like doing much? I am still in the hospital at Day+10. I am not sure what to expect once I get out of here. Please respond.

mykalex
Posts: 2
Joined: Mar 2014

Hello,

I was wondering if you are able to share your story with me.  I am interested in knowing ANYTHING about Hepatosplenic T-Cell Lymphoma.

 

thanks

 

mark6016
Posts: 7
Joined: Jan 2012

my wife had it if you need to talk about it you can e-mail me at mark6016@gmail.com

monda
Posts: 15
Joined: Jul 2014

Hi Mark

Yes I would like to talk to you about this disease, I did send you an email today, hope to hear from you soon.

thank you

Monda

danyabushey
Posts: 4
Joined: Oct 2014

Hello,

Here's my quick story. Let me know if you have any other questions or are looking for specific info.

My nephew, Brian, was diagnosed with HSTCL in Feb., 2012, i week before his 18th bday. It was a result of being on Remicade for Crohn's disease. We found a specialist at Memorial Sloan-Kettering Cancer Center in NY (MSKCC) and he provided the chemo protocol for the children's hospital in our area (Virginia Beach, VA) to implement. Brian underwent 3 rounds of chemo and then had an allo bone marrow transplant in NY at MSKCC on May 30 of that year. 2.5 years later and he is cancer-free and doing great.

How we found our dr....after doing some internet research, I found very little info but did see a few specific hospitals pop up as having treated patients with HSTCL. I reached out to Dr. Anas Younes, who at the time was the director of the Lymphoma Dept. at MD Anderson, which is the No. 1 cancer center in the country and had some experience. Based on our closer location to MSKCC, he recommended them. Of note, Dr. Younes moved to MSKCC this past winter; MSKCC is the No. 2 cancer center in the country. At the time, he recommended Dr. Steven Horwitz and after looking him up on the MSKCC website, I knew he was our guy. He has treated the most patients with this rare form of lymphoma, and has the best success rate. MSKCC is an amazing facilit and I cannot speak highly enough of them. The bone marrow transplant process is extremely tough but the transplant team at MSKCC is extremely competent and compassionate.

Please let me know if you have any additional questions. You can ask here, or email me directly at danyabushey@hotmail.com.

~Danya

mark6016
Posts: 7
Joined: Jan 2012

Thats great news . my wife had two stem-cell transplants if i can give you any advice if he starts having headaches get him checked out my wife two years after the second transplant started getting bad headaches they did a bone marrow and nothing showed up then they did a brain biopsy and the lymphoma had spread to her brain.I just want you to know to watch out  i wish someone had told me. we thought it was just bad headaches.May God Bless You

danyabushey
Posts: 4
Joined: Oct 2014

Thank you for letting me know. While he's doing great, we are very aware that he is more susceptible to it returning or even getting another form of cancer. How is your wife doing, if I may ask? Will keep you all in our prayers. 

mark6016
Posts: 7
Joined: Jan 2012

it came back and she passed away

 

clown_town
Posts: 1
Joined: Jun 2014

i was diagnosed at 27,the bone marrow biopsy was a killer.i did the every 21 day treatment. 6 times.i dont know much about the cancer i have,all i really know,,its a really bad form of lymphoma.i also had to go through treatment on 10 different physic pills,do to bi polor,panic disorder and sizaphernia.but i still made it to remmion,but i was so sick,at one point i had a high fever for 5 day and had to go to hospital.basicly i was in bed for 7 months.being a young women and bald made me a little shy leaveing the house.in the summer i wanted to wear a hat but it was too hot.i also was told the cancer will come back,it freaks me out,but i tell myself,"one day at a time",

monda
Posts: 15
Joined: Jul 2014

Hi,

Hope you are feeling and doing well, may I ask you how long have you had the Hepatosplenic T-cell lymphoma ? and I agree my daughter has just been diagnosed and she said same thing that the bone marrow biopsy was a killer.....can you also share what kidn of treatment are you ongoing ?

Thank you

Monda

GKH
Posts: 328
Joined: Jul 2012

Funny but I had bone marrow biopsies in both hips at the same time twice. and it wasn't that bad at all. My daughter is a nurse and told me to not "screw around" with a long appointment, pain killers, sedation, etc. The secret seems to be just do it quickly and get it over with. Do it fast and with little fanfare. Both times I didn't even undress. i simply dropped my pants, leaned over a table and whammo, both hips were done in just a very few minutes. Worked for me. The thinking about it makes it worse as does the sometimes long drawn out procedure.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1217
Joined: May 2012

My BM Biopsy experience was similiar, GKH, but it was one hip only. I knew nothing about the proceedure, and after a meeting with my doctor, he mentioned that the nurse was going to do one.  I went to another office and "Bam !"   They gave me a local, asked if I wanted a narcotic. I said "yes," but as soon as I swallowed the pill, she inserted the needle, so the narcotic didn't have time to do anythng anyway (except makle me enjoy the ride home, wife driving).  She watched and said that it looked quite primitive, but the pain was not terrible. She said that the device looked something like a cork screw for a wine bottle.   If I remember correctly, she had to "dig around" twice to get enough of a sample, but it was not horrible.  I do not recall it being painful at all later once I got home, but it was nearly six years ago, and I had plently of other stuff to worry about it at the time.

The bone marrow biopsy was one of the less miserable memories that I now have of six months with r-abvd, all of the scans, and everything else.

max

po18guy
Posts: 245
Joined: Nov 2011

T-Cell Lymphomas (and Leukemias) are rare and poorly understood malignancies. The largest group of T-Cell Lymphomas is called "NOS" - not otherwise specified. That simply means that they are an unknown type or subtype. Anyone with a T-Cell diagnosis needs the advoce and/or care of a T-Cell specialist. One of the doctors at Fred Hutchinson has created a foundation that is designed to assist T-Cell Leukemia and Lymphoma patients in obtaining a correct diagnosis and correct treatment. It can be a lifesaver.

http://tcllfoundation.org/

They have also developed a list of T-Cell Specialists who may be consulted for advice on treatment and clinical trials.

http://tcllfoundation.org/resources/

I am multi-posting this so that the word can get out. I am currently in my 5th treatment regimen and 11th drug. But, I have 6 1/2 years into this journey, having begun it at stage 4B with 50+ tumors and bone marrow involvement. It is survivable, but time is of the essence once it arrives. 

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