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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.

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pkelly
Posts: 3
Joined: May 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: 4
Joined: Jan 2012

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

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",

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