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Posted
Isolate yourself is the best advice i can give. Wear a mask if you have to go out. I FAFO the hard way. 

Definitely plan to. I went to the game on Saturday (left at half to make sure I didn’t wear myself out) and volleyball at Moody yesterday. Looks like those will be my last events to go to for a hot minute now that this news came today.
Posted
Good news. Apparently what was visible on the ultrasound did not appear on the CT. Not the end of the road but I’ll certainly take it. 
It really caused me to realize how traumatized I was over having cancer thirty years ago. It all just came flooding back with even the suggestion that I might have some version of it again. 
Those of you who have survived or are in the process of beating it, I urge you to keep your wellness appointments for the remainder of your life. Chemo and radiation are harsh and you are at risk for a whole host of things like heart disease, secondary cancers, and the like, for as long as you are alive. It has been thirty years since my last treatment and I am still very much dealing with the after effects.  My mantra has always been that I want to catch anything I have at the earliest possible point. 
I’m 6’1” and weigh 170. I exercise every day and eat a very strict diet. Looking at me you would never know that I have nine heart stents, all the result of chemotherapy and somewhat bad genes. 
All that to say thank you to those who sent me well wishes.  
 

Question - for your wellness appts do you just see your GP annually, or do you have to take extra steps like a cardiologist for the heart stuff?
Posted (edited)
4 hours ago, KingBobo81 said:


Question - for your wellness appts do you just see your GP annually, or do you have to take extra steps like a cardiologist for the heart stuff?

My answer is probably longer than you bargained for when you asked the question  

I established a relationship with a cardiologist probably at the five year mark after treatment ended.  My MDA doctor did a really good job preparing me that between my family history and chemo, that I would have heart issues sooner than I would have otherwise.  Generally, I would see him twice a year.  I credit this for basically never having a heart attack as we were able to figure out my blockages before I suffered any heart damage.  Yes, I have a lot of stents but not having damaged heart muscle puts me in much better shape. 
I also see a dentist twice a year for cleanings and examinations as I had mantle radiation and it has impacted my teeth and he also checks me for oral cancers. 
My doctor at MDA continued to see me once a year for 20 years after treatment ended. This is not normal but we became friends and he was genuinely interested in my life. I would get a chest x-ray (lung cancer) and they would do a mega bloodwork panel as they say I’m at risk for leukemia.  Also, there is some component which looks at tumor markers.  
When my doc retired they moved me to the survivorship clinic where I see a nurse practitioner once a year for the chest x-ray and blood work.   She and my GP always examine me for head and neck cancers. 
I also have always had a GP that I see once a year and as needed when things have come up. 
I also get a skin check once a year from a dermatologist as I have had numerous skin cancers in the areas where I have had radiation. 
They also have me on an every three year cycle for a colonoscopy as every time they remove polyps even though I have no family history and because I had pelvic radiation.  When they do this, they also do an endoscopy because I was radiated in my neck, chest and abdomen.  
Yes, I have spent a lot of time at the doctor over the years. Sometimes I feel like going to the doctor is my part time job. I have also had to come to terms that all these x-rays, CT’s etc have exposed me to even more radiation. 
However, it’s been worth it for me as like I said, I have caught all my heart issues early, had probably six skin cancer episodes, the polyps, and needed three root canals and several teeth pulled and replaced with implants.  All of my physicians have directly related these issues to my treatment. 
When I was diagnosed, I became friends with two people who had Hodgkins probably @ 2 years before I did. We had the same treatment regimen from the same doctor at MDA.  One of these people has passed away from a secondary cancer from his treatment. The other is really in bad shape with heart valve issues from the chemo. 
It should be noted though that our treatments were all done in the early 90’s and I was 26 years old. I’m 57 now. My understanding is that they have made great strides in the protocols for the type of cancer I had which may have minimized some of these side effects. 
I’m not advocating going to the lengths I have but I am saying that it’s not like the cures are consequence free. If you live long enough after your treatment something will show up.  
Ask the question of what you may be at risk for 25 years down the road and plan accordingly. 
I’ve dodged a lot of bullets and managed to see my kids grow up and become wonderful adults.  For that reason alone I’m satisfied with how my post treatment health has been managed. 

Edited by CTC2
  • Like 2
Posted
My answer is probably longer than you bargained for when you asked the question  
I established a relationship with a cardiologist probably at the five year mark after treatment ended.  My MDA doctor did a really good job preparing me that between my family history and chemo, that I would have heart issues sooner than I would have otherwise.  Generally, I would see him twice a year.  I credit this for basically never having a heart attack as we were able to figure out my blockages before I suffered any heart damage.  Yes, I have a lot of stents but not having damaged heart muscle puts me in much better shape. 
I also see a dentist twice a year for cleanings and examinations as I had mantle radiation and it has impacted my teeth and he also checks me for oral cancers. 
My doctor at MDA continued to see me once a year for 20 years after treatment ended. This is not normal but we became friends and he was genuinely interested in my life. I would get a chest x-ray (lung cancer) and they would do a mega bloodwork panel as they say I’m at risk for leukemia.  Also, there is some component which looks at tumor markers.  
When my doc retired they moved me to the survivorship clinic where I see a nurse practitioner once a year for the chest x-ray and blood work.   She and my GP always examine me for head and neck cancers. 
I also have always had a GP that I see once a year and as needed when things have come up. 
I also get a skin check once a year from a dermatologist as I have had numerous skin cancers in the areas where I have had radiation. 
They also have me on an every three year cycle for a colonoscopy as every time they remove polyps even though I have no family history and because I had pelvic radiation.  When they do this, they also do an endoscopy because I was radiated in my neck, chest and abdomen.  
Yes, I have spent a lot of time at the doctor over the years. Sometimes I feel like going to the doctor is my part time job. I have also had to come to terms that all these x-rays, CT’s etc have exposed me to even more radiation. 
However, it’s been worth it for me as like I said, I have caught all my heart issues early, had probably six skin cancer episodes, the polyps, and needed three root canals and several teeth pulled and replaced with implants.  All of my physicians have directly related these issues to my treatment. 
When I was diagnosed, I became friends with two people who had Hodgkins probably @ 2 years before I did. We had the same treatment regimen from the same doctor at MDA.  One of these people has passed away from a secondary cancer from his treatment. The other is really in bad shape with heart valve issues from the chemo. 
It should be noted though that our treatments were all done in the early 90’s and I was 26 years old. I’m 57 now. My understanding is that they have made great strides in the protocols for the type of cancer I had which may have minimized some of these side effects. 
I’m not advocating going to the lengths I have but I am saying that it’s not like the cures are consequence free. If you live long enough after your treatment something will show up.  
Ask the question of what you may be at risk for 25 years down the road and plan accordingly. 
I’ve dodged a lot of bullets and managed to see my kids grow up and become wonderful adults.  For that reason alone I’m satisfied with how my post treatment health has been managed. 

Did you get ABVD + radiation?

I know radiation techniques have improved quite a lot, but ABVD is still pretty common.

I received AAVD (Brentuximab Vedotin instead of Bleomycin) in 2023 and it was pretty new at the rooms, and they already have yet another regimen that subs the BV for Nivolumab (Opdivo, which is an immunotherapy) that has even fewer side effects (BV fucked my hands and legs up).

Unfortunately they do still use Adriamycin in these regimens. That damn Red Devil is an absolute bastard.

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