Hello my symptoms started in march 23 last year. I had a rash from my neck down to my ankles. It was very itchy. My legs swelled and I had high temperature with night sweats. My hair was falling out on my hair brush. My GP didn't know what was wrong. After two weeks it went away. I returned to work for one week. I became ill again with high temperature and night sweats. I returned to work a week later. In July 23 I noticed my lymph node on the left side of my neck was swollen. My GP gave me antibiotics. During the next week all my lymph nodes in my neck swelled to golf ball size. I had swollen lymph nodes under my left arm pit and on my shoulders. I had a swollen spleen. I went to a and e but got sent home twice. By this time I had been to see my GP four times. They were baffled.I was referred to ent specialist. Had a biopsy and two weeks later it was confirmed t cell lymphoma. I was admitted and put on steroids. Within 8 days all my lymph nodes had reduced in size. I was sent home but after 4days my lymph nodes swelled again. I was admitted and eventually had my 6 cycles of chope chemotherapy. I had all the side affects except for sickness. Fatigue was not good. I had infection each time after 10 days admitted to hosp for IV antibiotics and blood transfusion. They reduced the chemo by 20% this kept me out of hospital. When my chemotherapy finished I was offered stem cell replacement. But my age was against me 67yrs and it was un known what my quality of life would be. So Although it's 50/50 I could relapse I am very positive. My journey since chemotherapy has slowly filled me with strength and positivity. It's been slow but I am now in a good place.
Hi Social chat and welcome to this very elite corner of the community. I am Mike and I help out around our various Lymphoma groups.
When you say you have t cell imunoblastic lymphoma do you mean Angioimmunoblastic T-Cell NHL (AITL)?
I was diagnosed way back in 1999 at 43 with a different rare, incurable but treatable type of T-Cell Lymphoma eventually reaching Stage 4a in late 2013 so although my Lymphoma ‘type’ is different I do appreciate the challenges of this journey rather well.
You have had a bumpy road indeed and your were very unfortunate to get the side effects you had...... you definitely got the short straw.
I have had 2 Allo (donour) Stem Cell Transplants......... you say that your age is against you at you being 67....... I have sat and talked with lots of folks in their mid 70s who have been through Allo SCT and are doing good....... but this is all down to them not having 'other' health issues.
Good to hear that you are in a good place and your recovery continues.
Always around to chat.
These decisions are hard to make..... due to how my condition had developed my choice was rather a black and white.
No Allo Stem Cell Transplant (SCT) I would have a few years on the clock....... a successful Allo SCT would give my years but the recovery would be long (you can see my story in the link at the bottom)....... but I am now coming up to 8 years since my second SCT and doing great.
But it sounds like you are going good so live in the moment and enjoy each day as it comes along.
