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Hi, My fiance was diagnosed in June to Angiommunoblastic T-Cell Lymphoma. It is very rare. We are in RI, and John has received excellent care at The Miriam Hospital/Fain Center.
He has had 6 chemo treatments. He just had his last one on Thursday and has been doing great! He just had a PET Scan, which came back clean, and he will be going for a bone marrow test tomorrow and then he will be having a bone marrow transplant in Nov.
When John was diagnosed in June, he started off in March or April with a sinus infection, which lead him to the dr's, his lymph nodes were the size of golf balls. He had a biopsy done of one in his neck. I will be perfectly honest it took the dr's a good 2wks before they came up with this diagnosis. He was seen by specialist, that flew into Miriam Hospital, due to the fact that this is a rare form of cancer. I can try to ans questions for you. Ask away..I know it is scary. Catherine, RI
Hi Catherine...My Dad was diagnosed on Dec 24th of 2008 with this type - very scary as not too many people have this type...he is almost 77 and went thru 18 weeks of Chemo - hes had all clean scans but with each scan there have been increased spots on his lungs - now he is getting a biopsy on his lung on sept 30th - he's also had a cough - so not sure if these are fungal spots or if the Lymphoma is now in his lungs - being treated at Mass General and so hopefully they're just fungal spots - how is oyur fiance doing? PS - No nasal congestion - he had sore joints, night sweats and checst pain - (which was lymph nodes blocked causing the chest pain - )
Hello,
John, (fiance), is doing great! He truly is a remarkable man. He went thru 6 treatments of CHOP, including the Prednisone, it worked! John has gone for a CAT, PET and Marrow test, they all came back CLEAN! However, his doctor has ordered a bone marrow transplant in order to increase John's survival rate and the cancer NOT to come back.
Mass General GREAT hospital. This is their field of speciality. John will be having his transplant done in MA, at Dana Farber in Nov.
Hope your Dad is doing better. It takes time and faith.
Take Care,
Catherine
Rhode Island
My father in law was diagnosed back in February with Angioblastic T-Cell Lymphoma. He too had his bone marrow tested and did not have it there. At the time the doctor recommended 6 sessions of CHOP with the Prednisone given intermittently. He had a scan after the 4th treatment and it looked great, the lymph nodes shrunk etc. At this point he returned to the UK (he has a home in Florida and England). He finished his last two Chop treatments and was hopeful. He then landed in the hospital because he had low blood pressure and anemia and collapsed (I think its called syncope)?? At that time they did a scan and saw something suspicious so the ordered a PET scan. Unfortunately, the lymphoma had returned with a vengeance. It was now a stage IVb, and had spread to his bones, bone marrow and lungs. They gave him a now terminal diagnosis. They said he now has 3-5 months with no treatment or aprox. 10 months with oral chemo, pred and some other meds. He opted for that and again wound up in the hospital for syncope. Now he is off all the chemo meds because he had an upper respitory infection, and had to go on antibiotics.
He hopes to return to Fla in November. We have been in contact with Tampa Moffit and MD Anderson in Texas. We feel at a loss and haven't meat anyone else with this condition. We feel like a clinical trial is our last hope.
My F.I.L. has felt so weak since just before diagnosis and had had 3 or 4 transfusions..What is your next step/option???
My brother was diagnosed with Angioimmunoblastic Lymphoma today. He has been very sick for the past several weeks - night sweats, high fever, and a spleen that has swollen to 3 to 4 times its normal size. I have been trying to gather information but not much and what there is is pretty grim. They started him on Prednisone and CHOP sessions today. The doctor said it is very rare and not much is known about it and not much research is ongoing. Has anyone found any good info.
I am very sorry to hear about your brother.
Where are you located?? How old is you brother?? From the research I have done, It seems to point to a stem cell transplant or clinical trials as having the best rate of success. Not sure this helps...
Good Luck -
Tara
My boyfriend was diagnosed in June with Angio. T-Cell Lymph. He had the EXACT symtoms your brother.
Please contact Dr. Castillo, he is my boyfriends doctor. He is excellent. He literally brought my boyfriend (John) back from the dead. John's blood level at the time he went into the hospital was a 3! Unheard of for a man, he should have been dead. John went through 6 treatments of CHOP, he just finished his last treatment a couple of weeks ago. Had a CAT Scan, PET Scan and marrow tests...all CLEAN. However, the doctor has ordered John to have a bone marrow transplant. This will increase John's odds, and for the cancer NOT to return into John's body.
Dr. Castillo, is with the Fain Center, at the Miriam Hospital, in Rhode Island. He is a specialist in his field, well known, well credited. He is actually doing a medical journal on John and this disease.
Good Luck, and God Bless!
Catherine
Rhode Island
Having been in remission for eleven years with angioimmunoblastic lymphoma. It is rare, although not as much as you think. It is often misdiagnosed. Doctors don't tend to know much about it and how to describe things to you. You need to talk to your oncologist and demand idiot boards. if you don't understand then ask another question. you are in control of your treatment and the treatment goes better if you are in on the desicion side of things. Some really good information is available from lymphoma research foundation http://www.lymphoma.org/atf/cf/%7B0363CDD6-51B5-427B-BE48-E6AF871ACEC9%7.... If you want to find out about this inconvenient little bugger, follow the links from standard NHL in wikkipedia. But be warned the internet has a habit of leading you all over the place and can be quite frightening. As a medical writer and researcher I will try to point you in the right direction as I understand the technical terminology.
Christiaan von Hohenzollern
christiaan@plusve.co.uk
I had angioimmunoblastic T Cell Lymphoma in 1997 at the age of 49. I had 8 sessions of CHOP chemo along with predisone therapy. In 1998 I had a stem cell harvest at Northwestern Hospital, Chicago, but was lucky enough not to have to use them. I have been cancer free since June, 1997.
I want to encourage all who are angioimmunoblastic patients. I don't care what the books say, you can survive!!