New Forum Member Jim

Thanks for the information POGuy, I remember your username from the other forum. I agree with your assessment of the remains of the old board. It didn't seem like the same type of group anymore.
I started with testicular cancer in 2001 and followed the recommended course of orchiechtomy and 20 radiation treatments. I wish I had not done the radiation but I'm sure we would all change things if we could. 10 years later in 2010 the mixed cellularity Hodgkins presented itself to me with with a branch of cervical lymph nodes on the right side of my neck at first with a noticeable mass of about 3.5 x 10 cm. The staging turned out to be 3b with an even distribution in neck and chest with a few nodes in lower abdomen as well.

I've had reactive nodes in my neck for years but a month ago the first  big group started growing fast again much larger this time than at any other point since my 6 cycles of ABVD in 2011. I'm a week away from a biopsy and pet scan but the ct I just had shows new areas of growth in my chest And lungs. I'm going to look into the treatments you mentioned so I'm more informed when I see the Dr again. At the time of my first treatment the recommended salvage therapy was ASCT. I'd much rather do anything that doesn't require a prolonged stay in the hospital. 
Jim

Thanks for the comment Max, I hope I get to suprise eveyone with a non cancer oddity as well. I've had nodes stay enlarged for almost two months at a time and then dissappear in a matter of days So I don't give up hope that easily. My biopsy is tomorow and PET a day before yours. I had quite a few good years after finishing treatment last time but the last couple years have been one thing after another all pointing towards  a conpromised immune system. The biggest difference this is Doctors being more open about what they see. Hopefully they're all wrong again. The first time around no one wants to say anything bad, This time the Oncologist and radiologist have both said it looks like a relapse. I'm hoping it's some kind strange covid reaction. Good luck with your PET scan, I guess we'll know more in the next week or two. 

 Best wishes for the new year all, even a little normality at this point would my first wish and a good start.

To recap briefly,2001 testicular cancer with orchiechtomy and radiation, 2010 mixed celularity Hodgkins 3b and to begin 2021? something different again!

Lymph node biopsy in my neck is not Hodgkins this time but peripheral T-Cell NOS NHL stage 4b. Not a huge load but spread out in the neck, chest cavity, lung and a few below the diaphragm. Doctors recommend 6 cycles CHOP and if all is well then the ASCT in June. Not what I was hoping for since the ABVD last time left me with reduced heart capacity, lung functions and numb feet. Hopefully they can keep tabs on toxicity levels and minimize unnecessary damage further. At 60 years old I know this may be harder but for some reason I feel calmer about this. I'm starting to feel like I'm talking about someone else. I hope this isn't denial, I don't think so. During the next few months I hope to add what I learned last time in regard to preventative maintenance of general health.

My take aways last time were as follows...

Stay hydrated, drink more fluid for kidney sake.

Keep air cleaner, use filters and masks routinely while busy with chores

Stay on feet as much as possible (avoid additional DVT's and PE's)

With this last year's primer on living with a lower bacterial and viral load in the lungs, I hope to parlay some of this skill into the battle and proactively vie for a better outcome than my last. I was admittedly complacent in areas 10 years ago that I believe hampered my success.

Good luck everyone, best wishes 

Jim

po18guy said:

Well...

Not the news you wanted to hear. I had three go-arounds with PTCL-NOS from 2008-2015. It was diagnosed from the excisional biopsy of a right cervical node. I had a bunch of treatments, but you have options that I did not. Which center are you treated at? T-Cell Lymphomas require the care of a T-Cell specialist and they can be few and far between. Here is a partial list of US T-Cell specialists:https://www.tcllfoundation.org/resources-and-support/treatment-centers

I would imagine that regimens such as CHOP, CHOEP or EPOCH might be mentioned. However, you have other options that are far newer and ess toxic than these vintage regimens. Do let us know how things go.

If you want to consult with one of the best of the best, I can point you in the right direction. He is in Seattle.

I've been treated at the University of Rochester medical center for the last 10 years, most of my specialists are in this hospital and the interdisciplinary conferences between my Doctors are held on a regular basis. I have a lot of history here in the last couple years with several hospitalizations for sepsis, bone infection in jaw, several surgeries and even a scary incident with Ludwig's Angina "neck swelling". I think this is good fit for me and my doctor would schedule a consultation with myself and another specialist if I request. 

 There are still a few tests they monitor  and may continue to  adjust things as more info comes in. that part is getting over my head with markers and dna stuff  but I understand the results could  aid in a more targeted therapy if needed. Three times with this? That really stinks, I hope I can bring some of that fight to this battle. Thanks for the offer. BTW  it was my right cervical lymph nodes the went off first as well. I'm already on the prednisone since the biopsy area and remaining nodes doubled in size just after the procedure. Before the biopsy I couldn't believe how quick the neck nodes grew. Way faster than I imagined. Thanks for the offer, I'll post again if need another opinion.