So. Anyone dealt with Hodgkins Lymphoma before?

berkeley it, might as well ask now. The call hasn't come through yet, but my test results are posted.

Experiences? Treatments that worked that weren't chemo? Lifestyle adjustments you had to make?

Really other than the lumps in my thigh, and their resulting biopsy, I have no other symptoms. I can't even blame fatigue on that, because my spine is degenerating between L4 and L5, and nothing works to dull that pain so I'm pretty much constantly exhausted already. Really aside from being overweight and a smoker for 25+ years, I'm fairly healthy according to bloodwork and BP readings anyway.

I was perfectly fine just having weird lumps in my leg, shiny happy people had to make me get tested anyway, and now it's kind of a problem I guess. 

Apologizing in advance if I'm more of an shiny happy person than usual over the next couple days, but it's kind of a lot to take in.

We're here for ya, Man!  

As John said, we're all here for you. I have no experience with Hodgkin's, but I've had to deal with a cancer diagnosis, and yes, it is a lot to take in. I understand.. I don't know what to tell you, except to take it day by day, try your best to understand what the doctors tell you , and follow their advice. There may be days when it's overwhelming, but they'll be followed by uplifting days, too. It's a bit of a roller-coaster ride. Hang in there. If there are any questions I can answer just ask. Again....we're here for you.

Lot's I want to say but don't want to also. As Warren said ask questions.  The more you ask your doctors the more they tend to be willing to share.  Be blunt and direct.

I just remember far too vividly everything my dad went through when I was a kid. I won't put my family through the same. 

I've lived with this for longer than I can remember already, with no issues. Seriously, the lumps have been noticeable for 5-7 years at least probably longer, never a hint of pain, a problem with motion, just weird looks from romantic partners.

Being "normal" Hodgkins, the survivability rate is well over 90%, and "easily" treatable. My line in the sand is chemo though. I saw first hand that the cure is often worse than the disease, and my daughter hasn't grown up with the constant "is today the day?" I did to be ...used to it? Accepting of it? Understanding of it?

Yea, I remember the good times after my dad was done with cancer, but I also remember the months of puking everything up every night, and the problems that came after being tainted with the radiation, including being immediately pulled from transplant lists and made illegible for organ donation. Granted I don't have a mystery kidney disease that has lead to it, so dialysis, heart fluid draining, amputation, and comas aren't high risk side effects for me like the reality they turned into for him. But those memories have certainly had a lasting effect, even 9 years after his death and 24 years after radiation and chemo. Big part of the reason I only go to doctors when every other Avenue has failed; I've met far too many incompetent, lazy, or outright dangerous doctors to have much faith in them for anything. 

I understand it's rare enough, but this place is always full of surprises with who has battled what or helped family through whatever.

I'm sure the call I'm expecting tomorrow morning will be interesting, and hopefully educational. I'm just glad I switched from an arrogant bitch of a nurse practitioner to an actual doctor.

In reply to RevRico :

Was your Dad's cancer Hodgkins, or something else? I went through chemo last February for leukemia and I felt nothing worse than them sticking the IV tube in my arm, no side effects at all. It was a non-event. I'll reiterate.....wait, talk to the oncologist and ask all your questions. I just don't want you jumping to a conclusion before you talk to the professionals about all the issues and alternatives. There has been progress in treating all types of cancer and it may well be better than you're anticipating. I've probably said too much already, so I'll stop. Please keep us informed.

The Chemo today is not the chemo of 20-30 years ago. 

I would talk to multiple oncologists and state your opposition to chemo and why you have it.  Get their professional opinions before making a decision. 

I've known 3 people to beat it - 2 Non Hodgkins 1 Hodgkins - all with Chemo, all in the last 7 years. 

Hey Rev. I'm sorry to learn that you are facing this condition and diagnosis. I'm frankly ignorant on health stuff in general but my wife is a Physical Therapist in a bone marrow transplant unit of a big metro hospital. Before that she did the same work in another cancer hospital in FL for several years. Patients in her unit are 90% bone and blood cancers.

She is already asleep and I'm just trying to fall asleep thumbin GRM.. but I will ask her about it tomorrow. I do know there are a LOT of new therapies. Serious berkeleying science that is way over my head..  but she knows lots about what these therapies actually do to patients.

For example I know she has seen this stuff do miraculous things.. but it also evidently can introduce some wicked side effects of the mental variety..

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10656097/

Take care man.

I had non Hodgkins in high school, so I can't help. I'll echo without hesitation, that if treatment calls of chemo and radiation, to do it. I'm not going to say that it won't suck, but I'm here. (For the record my treatment for non Hodgkins was easier than the treatment for testicular, and waaaaay easier than pancreatic, I wouldn't go through what I went through with pancreatic again, but I'm glad that I did the first time, because again, I'm here. 

In reply to DeadSkunk (Warren) :

His cancer was a side effect of getting the anti rejection drug FK9000 through FDA approval in the 90s. After 7 years, over 60% of the local study participants had developed some form of esophageal cancer. 13 weeks of direct radiation 5 days a week and 3-5 chemo treatments, 6 months of not keeping any food in, random blackouts, and long term memory problems. 

His dad was prostate cancer, which got him radioactive implants he had for almost 30 years.

Mom's dad was lung cancer 30 years after he quit smoking. Uncle douchebag #1 had melanoma from living at the golf course, uncle douchebag #2 was a nose cancer, I'd quit talking to him at all long before he was diagnosed so I don't know the specifics there.

So I'm first in the family with hodgkins.

But to make things more fun, the wife has a weird non leukemia blood cancer that's been in remission for 15 years or so and apparently will never go away, but is also most likely getting a hysterectomy this year after showing abnormal cervical cells 3 years in a row. 

Stay the hell out of southwest Pennsylvania if you value your health is my big takeaway.

In reply to RevRico :

berkeleyin' coal mines, man- wild E36 M3 comin' out of them hills. 

You know where to find me. 

Sorry you're dealing with this, and thanks for posting here. Hopefully the community here can give you a little bit of comfort while you deal with this E36 M3ty situation. 

I've got a fair bit of experience with it - treatment for Hodgkins depends on your age, how far along, how bulky the nodes are, and a few other factors. Treatment is almost always a combination of chemo, and it works very well thankfully. As some others said above, chemo is a lot more tolerable and more effective than it was generations ago thankfully. We also have a lot of medications to help with side effects like nausea. It's not a walk in the park or anything but you can get through it, and the cure is most definitely not worse than the cancer, especially in this disease. 

Get a second or third opinion, but don't be surprised if everyone tells you the same thing. They may offer you a clinical trial and if that's not your thing given what your dad went through, just say no and don't feel guilty about it.

We're here for you. 

OHSCrifle said:

Hey Rev. I'm sorry to learn that you are facing this condition and diagnosis. I'm frankly ignorant on health stuff in general but my wife is a Physical Therapist in a bone marrow transplant unit of a big metro hospital. Before that she did the same work in another cancer hospital in FL for several years. Patients in her unit are 90% bone and blood cancers.

She is already asleep and I'm just trying to fall asleep thumbin GRM.. but I will ask her about it tomorrow. I do know there are a LOT of new therapies. Serious berkeleying science that is way over my head..  but she knows lots about what these therapies actually do to patients.

For example I know she has seen this stuff do miraculous things.. but it also evidently can introduce some wicked side effects of the mental variety..

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10656097/

Take care man.

Spoke about you with my wife and she said her department rarely sees Hodgkins patients because it evidently responds to treatment a LOT better than the other cancers they treat (inpatient.. on the way to a marrow transplant). 

In reply to OHSCrifle :

I went to the American Cancer Society website and it says Hodgkin's has one of the highest remission rates on their list of cancers. 

That's some heavy news to get, Rev. Sorry you had to get it.

I will share that my mom has now beaten Cancer three times now.  First diagnosis was Hodgkin's in 1993 and she kicked its ass.  Back then the chemo and radiation was pretty rough.  Second time around was Hodgkin's again in about 2010 and she kicked its ass again.  Chemo had made major leaps and bounds and she was only mildly affected.  Third time was actually lobular breast cancer (the kind that doesn't show on a mammogram) and it had metastasized all over the place - bone, spleen, lymph, lung, the works.  Fortunately it presented with the indicators for hormone therapy, and at 77, she is now in remission again.  Tough old lady.

Just sharing a little bit of hope.  If my momma can beat it three times, you can punch this E36 M3 in the face and send it packing.

So chemo ports? Care and feeding recommendations?

Going for my install Tuesday. Don't really get a say in the matter. Didn't even get to pick the day or the time "because we only do 2 a day and he likes to do them early". While you're lucky I don't really sleep anymore, I don't appreciate you ignoring my days I told you I wasn't available because of PT, thanks dicks.

Still no word from my PCP, at all, about anything.  Called to question him, got a practitioner who put me in touch with the oncologist.

No one in the cancer Institute talks less than 1,000 words per minute, which is great because I have trouble hearing anyway. Very confidence inspiring that I get home to start scheduling all the tests and stuff and find out that *gasp* a nurse I met for all of 5 seconds is supposed to be doing that for me. This feels familiar.

As long as whoever puts the port in leaves their berkeleying politics out of it, unlike the one kidney doctor that worked on my dad, it should be ok. Take away my ability to punch holes in paper, and you're gonna learn to fly. And yes, I made sure that was actually in my chart notes. 

See if I ever listen to anyone again when they say "you should get that checked out".

mtn said:

The Chemo today is not the chemo of 20-30 years ago.

This.

My mother had cancer and I would pick her up from chemo, drive to the lake and she would water ski for several hours. She's 80 right now (76 when she was doing chemo).

I just got home from my monthly chemo session (not for cancer - I have something called amyloidosis and I get my treatment at a cancer center.)  My experience over the last half dozen years is the nurses, nurse practitioners, and doctors there are caring people who will explain what you need to do for taking care of your port.  I know it can be overwhelming and confusing, but my advice is to not go in with an attitude...if you questions about things you don't understand, write them down beforehand and take notes when you get there.

16 years ago, my bride was diagnosed with follicular lymphoma.  She was put into a clinical trial which tested if high doses (40mg 2x per day if I remember correctly) of Lipitor would induce remission.  It did in a fair number of cases.

She entered the trial late in the process and was dropped after 19 months since she didn't get better - she didn't get worse - but she didn't get better.

When we visited our physician afterwards, I asked if maybe it would be a good idea to put her on Lipitor for her "high cholesterol".  He put her on a 40mg dose once a day, since she actually did have somewhat elevated cholesterol.

She has been seeing the same oncologist since she was diagnosed.  About 6 years ago, he pops into her appointment after her latest CT scan and says,"It's gone.  Not a trace!".  She had another CT scan last year, which was still clean.

She has never had any other treatment; no chemo or radiation.

If you are really concerned about what is offered by way of treatment, it may useful to try to locate a clinical trial.  Of course, YMMV.

Good luck.

PS - The university had continued been receiving my bride's reports to labs. They contacted her last year to be re-enrolled in the trial ;=)

I have no firsthand experience but a friend recently went through chemo for a 9/11 related cancer.  It was far less harsh than the chemo my grandfather went through. I wasn't fun obviously but less debilitating than the old treatments. 

Sorry you've been put into this battle. Just wanted to send well wishes. 

It's stage 3, which means not in the bone marrow, which meant I didn't have to get a bone marrow biopsy. So a minor win there. 

Chemo will start sometime in the next 7-10 days,  supposedly.  Once every two weeks for 6 months,  with another pet scan after the first month. 

I have requests in for a copy of my pet scan results to put on the wall.  

Because it's stage 3, there's a drug they can use that won't be as bad on my lungs. Still a risk of lung toxicity which sounds like a fancy way of saying shortness of breath. Suggested I cut back on the tobacco,  weed,  and Tylenol for my lungs and liver. Suggested I increase my water intake to help with my kidneys,  then stepped it back when I mentioned I drink a gallon of water a day already. Also suggested I maybe take the summer off from drinking, good thing I just found 3 bottles of my favorite hooch. 

I laughed at cutting back on the Tylenol.  "Well have you tried an opiate that won't do a much liver damage?" are you berkeleying kidding me? How about quit scheduling all my stuff on Tuesdays so I can do PT and maybe get the twisting degrading spine sorted out? But in reality,  opiates don't really work on me,  I just go straight to withdrawal without the high or the pain relief.  Maybe I should find a chiropractor or not happy ending massage parlor.  

The port is in.  The stitches are itchy as all hell, and trying to shower while skipping a quarter of my chest is getting really annoying.  Hopefully it'll heal up soon,  it's been 8 days.  I've been told it usually takes a week. 

At least once the port heals I won't be getting bruises from the new phlebotomist they have, she's a bit rough with the golf tees going on my arms.  

In reply to RevRico :

Hoping it goes well for you.  I'm sure there will be highs and lows but may the highs out number the lows.

A good friend of mine just went through lymphoma (though non-Hodgkins, and I'm not well-versed on the differences). 

The treatment was pretty exhausting for him; after each chemo session it took him several days to bounce back, and he was quite frequently tired. That being said, I think his last treatment was something like 9 months ago now and he's not had any problems with recurrence.

I don't know how much it contributed, but he also switched to a vegan diet in an effort to cut off anything from overprocessed foods and meats that may have been working against his recovery. 

He's doing great now, but the journey was unpleasant. Hopefully yours is easier. Either way, it is something that must be endured.

"Perfer et obdura; dolor hic tibi proderit olim." Be patient and tough: One day this pain will be useful to you.