I was diagnosed with Indolent small B cell follicullar Non-Hodgkin Lymphoma in Feb. '97. We did the watch and wait and it was just fine. Then in Dec. '03 I discovered a tiny BB sized bump on my right jaw bone. Doc couldn't feel it but ordered a CT/scan, then a Fine Needle Aspiration. They said it looked like it could be a lymphoma. By March '04 it was the size of a golf ball. I had no symptoms from this or my NHL. They removed the tumor and the salivary gland. It took 6 wks to get the Path report. It was Hodgkin Lymphoma, so I had to undergo chemo. I had ABVD. After the first treatment, I got an infection. Then they put in a port-a-cath (I hated the PICC lines). It never healed. I had a staph infection in the port-a-cath area. They tried everything and thought I was going to die. Well, God did take me out into space and I looked at the earth. I didn't care at all about it. But I wanted to be with my grandchildren. ZAP I was back. I was hooked up to monitors and someone at the nurses' station had the job of just watching mine. It must have happened between heartbeats. I went to sleep and woke up feeling much better. They took their tests and later the doc came in and told me I was going to make. I already knew that.
The next month I couldn't breathe. I had Bleomycin toxicity. If I had waited 2 more days to go into the ER, they wouldn't have been able to save me. I had to stop ABVD one month short, so they did radiation. That was Oct.'04. The Hodgkin Lymphoma has been in remission. The NHL was for about a year. Came back more aggressive. Had another treatment that lasted less than 6 months. Had another treatment but all didn't go away. My body is so damaged and my immune system is worn out, so I can't have anymore treatments. My NHL is incurable.
Hodkin Lymphoma has a very high survival rate, like in the 80's% or 90's%. I just went to a Lymphoma workshop in Seattle and we heard from all the Lymphoma specialists. HL is not bad to have. NHL can be helped, but I am told it is better to have HL. Apparently I am a rare case to have both and not respond to all the chemo and radiation. I've had problems with my mouth eversince because the radiation was of my mouth and throat. Now I find out that I have Hypothyroidism and they think it is from the radiation.
Is there anything else that can go wrong besides death? I just have the worst luck.
Hope you will get the correct diagnosis and if HL be hopeful because you have reason to be.
Kitty