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New Forum Member Jim

FingGrrr
Posts: 7
Joined: Dec 2020

Greetings Survivors, Instead of lurking for a month or two I just thought I'd introduce myself in this forum right from the start. I used to be a member of cancerforums.net but that community seems to have moved and I'm not sure if it's still a viable forum with a reasonable amount of interaction between members.

A quick history of for me is testicular cancer in 2001 with 20 radiation treatments following an orchiechtomy. Hodgkins 3b in 2011 with 6 cycles of ABVD. Now in 2020 my cervical lymph nodes are growing rapidly and first CT shows along with the neck I have a few sub cm nodules in my lungs and new growth in mediasternum (chest cavity). I'll know more in a few weeks after pet scan and biopsy but it seems like I'm heading for some kind salvage therapy (if thats the right term) for this relapse.

I'm looking forward to reading more stories about people in my situation, close to 60 and relapse after 10 years. I know imediately after chemo in 2011 if I had a relapse ASCT was to one of my best options. I hope there are more options ten years later. If you had a similar run and can point me to your story I'd appreciate learning from the experience.

Thanks Jim

po18guy's picture
po18guy
Posts: 1194
Joined: Nov 2011

The owners of cancerforums.net euthanized the site. It was switched to HealthBoards - which IMO is just a collection of poor anxiety-laden folks who fear cancer. Sad. AFAIK, none of it is archived (except possibly via the Wayback program). A frew of us have gravitated elsewhere but that community is gone - drifted off to life. However, you are suspecting a relapse of Hodgkin's. Which sub-type was it? Secondly, I am wondering what caused you to be checked - unless it was a routine follow up?

Now, "IF" it is a relapse, or if it is something lese, you have options. You would still have the option, I would think, of an auto transplant. An allo transplant is another possibility. CAR-T and now CAR-NK are also either approved or in trial. And threre are some new drugs as well. But, best to wait on bioopsy and pathology before we get too far. "Max" will undoubtedly check in soon and he has some mileage with Hodgkin's, as well as a recent scare which turned out to be ...well, he'll tell you.

In the meantime, welcome and we'll be here for any questions or just to listen.

Lawdy
Posts: 1
Joined: Dec 2020

Hello 👋 

The surgeon that removed an enlarged lymph node in my left armpit just called me today to tell me the results were in and that I have Hodgkin’s lymphoma... I have an appointment with an oncologist this Friday.

I don’t really know how I feel, numb, scared, very uninformed and like it’s not set in yet.

All of this started with me having a preemptive lung cancer screening, several of my family members had lung cancer, I saw a billboard about the screening and thought why not.... the screening didn’t show any lung cancer but showed a few enlarged lymph nodes in my armpit, that led to ultrasound that lead to needle biopsy and then the removal of the node and now here I am, day 1 of knowing but not knowing anything else.

Not having any symptoms, finding this information only from a preemptive lung screening, I’m kind of floored.

FingGrrr
Posts: 7
Joined: Dec 2020

I see the title of my post was a bit misleading, It looks like a thread for new members now that I think about it. Good luck with your appointment Friday. It's good that you caught it so early. I've known several people in the last ten years that did benefit from screening. a couple of them said they had the test after hearing stories like yours from people who knocked it out of the park in a matter of months. Good Luck

 

po18guy's picture
po18guy
Posts: 1194
Joined: Nov 2011

You will get much more suppport if you start your own thread. That way, we can keep posts and replies sorted out. BTW, Hodgkin's has a very high lifetime remission rate.

FingGrrr
Posts: 7
Joined: Dec 2020

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

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3666
Joined: May 2012

Jim, we have quite a bit in common.   We both had HL at about the same time -- mine was diagnosed in 2009, treatment with R-ABVD ended in mid-2010.    I never had testicular, but did have a UT cancer, Prostate, in 2015.  And recently, as Po noted, I've been tested for possible relapse of lymphoma.   My biopsy showed an odd, rare result known as P.T.G.C., and I have a PET coming up on Dec 18.  PTGC is a benign autoimmune disorder, and is found only in patients who have had NLPHL and (possibly) follicular NHL.   My takeaway so far its that enlarged nodes, by themselves, don't prove much of anything.    

Keep us updated,

 

 

FingGrrr
Posts: 7
Joined: Dec 2020

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. 

FingGrrr
Posts: 7
Joined: Dec 2020

 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's picture
po18guy
Posts: 1194
Joined: Nov 2011

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.

FingGrrr
Posts: 7
Joined: Dec 2020

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.

po18guy's picture
po18guy
Posts: 1194
Joined: Nov 2011

Since you are in Rochester, might consider having a second opinion at Mayo. At least have the biopsy pathology confirmed there. Lymphoma can be diabolically hard to diagnose. I have seen a type of Hodgkin's misdiagnosed as T-Cell and vice versa. The outcomes were not good.

ShadyGuy
Posts: 687
Joined: Jan 2017

Jim is in Rochester NY not Rochester MN

po18guy's picture
po18guy
Posts: 1194
Joined: Nov 2011

D'oh! Thanks for that. Does Evelyn Wood give refunds to those who failed the speed reading class?

Well then, I can heartily recommend Memorial Sloan Kettering, where one of the best T-Cell hematologists on planet earth practices: Dr. Steven Horwitz. PTCL, in any of its forms, is nothing to mess with. Many oncologists are behind the curve regarding T-Cell lymphomas, having having never seen one. Quite a few hematologists are not all that familiar. Doctor Horwitz lives and breathes the subject. 

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