To Chemo or not to Chemo

[NoRegretsEver]

This is a topic from the heart, so please bare with me. I lost my husband of 8 years six months ago to stage 4 colon cancer. We had no idea he had cancer, but he was sick, and we thought it was everything but that. His first doctor's visit we were told that if he didn't start Chemo immediately, he would be put on hospice that day. So, of course we agreed that Chemo was his best option and the doctor's seemed to give us hope that though he couldn't be cured his life can be extended.
His first few rounds of Chemo were devastating, but after a few months his numbers seemed to go down or at the least the growth process was still... for the moment. We finally thought that there really was a way for him to live longer, even though he was told 5 years would be his limit, but that it seemed possible.

After about 6 months, his numbers were fluctuating, and we weren't sure what to do. His medication for pain was elevated, but it wasn't to much. About 8-10 months later, he lost his voice, and Chemo was again starting to take a toll, he lost about 60 lbs, he was about 280, and we could really start to see a decline.

Let's jump a bit more, as to not make this to long, and go to the point of why I am making this thread. After about a year and a half in, he was told that the Chemo was no longer working and they gave him 2 more rounds, with 2 types of Chemo, now he had lost about 100 lbs, and about 2 months he was told nothing was working anymore, and he had to go into hospice. At this point he was on about 20 medications including, oxy, morphine (pill), liquid morphine and fentanyl. He no longer ate, only drank Ensure, and slept 80% of the time.

He passed away June 2, and it was a slow agonizing death, he weighed about 120 lbs, and he passed in the hospital, I was right by his side. Now here is the issue I have been having since he passed.

Did we make a mistake in starting Chemo? He would have had months to live, but he wouldn't have died the way that he did. Being a part of this community, we discuss so many things, but knowing Big Pharma is b.s., knowing that people can and are used a guinea pigs, knowing that there are far to many thoughts about death, and what happens afterwards, possibly of course.

He was not a part of what I have come to love about research, so he didn't really know what was going through my head, while watching what he wanted and being torn about what I have learned. I wasn't going to bombard him with info concerning my real thoughts on this, especially because he was also religious, and I am agnostic, what was I supposed to say.

So I will end with this. Knowing what many of us know, even if not believed but are aware of, would your choice if you didn't have one, be directed by what you have learned, shared, and been informed of if the time came? I never really considered it myself, and have written a living will, but many of my choices will I am sure be swayed by what I have learned over the years, and be misunderstood by those who don't subscribe to my thoughts and research.

Thank you for taking the time to read this. I thought maybe by asking those in our community their thoughts, that I in fact may see things in a different light.

Peace, NRE

[putnam6]

So sorry for your loss 

No, you did the best you guys could with the information given. We went through the same with my Dad October 3rd 2014 we found out he had stage 4 pancreatic cancer, he had pain in his stomach area, and always thought it was his ulcer, but it wasn't. He had gone in and when he found out he just had them do a nerve block so he couldn't feel the pain. A few weeks in he was down to 136 lbs he was 6'2' and 175 normally, we put him on parenteral nutrition I had already moved in with my Mom and Dad to help, and we went into what my mom and siblings called 24 hour emergency mode, we learn how to hook him up and feed him through his port.

Initially, the chemo knocked down his numbers and even though the nurses and the doctors said he wouldn't likely reach his normal weight EVER we got him to 165 his strength came back a little at a time, but after months and months he even got in his van and drove around a bit, its those little victories, I was nervous as shit and told him no LOL and he barked at me he was going. He was fine and was happy as hell he did it. We loved him so much and he hated that we had to take care of him and he had lost his independence. 

This is 2015 and he had begun eating again late in the year, and he had a good Christmas with all his grandkids and children with him. then in January, his numbers started to go up, the doctors recommended a new treatment but with it being new his insurance wouldn't pay for it, till it became an acceptable treatment he missed 3-4 weeks before they got him on the new treatment. When he got the new treatment it wiped him out, and he started regressing by his 5th treatment we were getting him ready to go in and he had a heart attack and stroke I spent 23 days in the hospital he passed away April 5th 2016 at 1:47 AM. 

We didn't speak about it till much later but we all wished we had never switched treatments, especially to a new one that his insurance would not pay on initially. Obviously, there were no guarantees but it always felt like missing those 4 weeks and the strain of the new more aggressive treatment did him no favors in the end. Lord my sister and I cried after she and Mom took a little lighted Christmas tree to his gravesite this year. We thought we had saved him for at least another year or so. It still messes with me, he was such a great dad all of our kids adored him and he was very accomplished he didn't care about that he loved his wife and his family. It is brutal, life doesn't prepare you to make those types of decisions. I almost said something, I almost said let's go somewhere else the other cancer center in town, I found out later did the same treatments and had other treatment options that our original center didn't have. 

Don't get me wrong the original center was very well run and professional and took great care of the many hours we were there every week, it's just those last 4 months... 

All you can do is the best with the information you have at the moment. I am grateful we gave him a few more months and a holiday season. It's like my daughters said much later, it allowed them to come to grips with the inevitability of it all. 

Again so sorry for your loss, but you did the right thing and if you had chosen the opposite you would have still had these conflicting thoughts, it is just the reality of the horrible situation. 

Prayers to you and yours and thanks for listening to my rambling rendition of my father's last chapter.

Yes, Big Pharma is BS, they are about treating and not curing, but you were right in trying.

[NoRegretsEver]

So sorry for your loss 

No, you did the best you guys could with the information given. We went through the same with my Dad October 3rd 2014 we found out he had stage 4 pancreatic cancer, he had pain in his stomach area, and always thought it was his ulcer, but it wasn't. He had gone in and when he found out he just had them do a nerve block so he couldn't feel the pain. A few weeks in he was down to 136 lbs he was 6'2' and 175 normally, we put him on parenteral nutrition I had already moved in with my Mom and Dad to help, and we went into what my mom and siblings called 24 hour emergency mode, we learn how to hook him up and feed him through his port.

Initially, the chemo knocked down his numbers and even though the nurses and the doctors said he wouldn't likely reach his normal weight EVER we got him to 165 his strength came back a little at a time, but after months and months he even got in his van and drove around a bit, its those little victories, I was nervous as shit and told him no LOL and he barked at me he was going. He was fine and was happy as hell he did it. We loved him so much and he hated that we had to take care of him and he had lost his independence. 

This is 2015 and he had begun eating again late in the year, and he had a good Christmas with all his grandkids and children with him. then in January, his numbers started to go up, the doctors recommended a new treatment but with it being new his insurance wouldn't pay for it, till it became an acceptable treatment he missed 3-4 weeks before they got him on the new treatment. When he got the new treatment it wiped him out, and he started regressing by his 5th treatment we were getting him ready to go in and he had a heart attack and stroke I spent 23 days in the hospital he passed away April 5th 2016 at 1:47 AM. 

We didn't speak about it till much later but we all wished we had never switched treatments, especially to a new one that his insurance would not pay on initially. Obviously, there were no guarantees but it always felt like missing those 4 weeks and the strain of the new more aggressive treatment did him no favors in the end. Lord my sister and I cried after she and Mom took a little lighted Christmas tree to his gravesite this year. We thought we had saved him for at least another year or so. It still messes with me, he was such a great dad all of our kids adored him and he was very accomplished he didn't care about that he loved his wife and his family. It is brutal, life doesn't prepare you to make those types of decisions. I almost said something, I almost said let's go somewhere else the other cancer center in town, I found out later did the same treatments and had other treatment options that our original center didn't have. 

Don't get me wrong the original center was very well run and professional and took great care of the many hours we were there every week, it's just those last 4 months... 

All you can do is the best with the information you have at the moment. I am grateful we gave him a few more months and a holiday season. It's like my daughters said much later, it allowed them to come to grips with the inevitability of it all. 

Again so sorry for your loss, but you did the right thing and if you had chosen the opposite you would have still had these conflicting thoughts, it is just the reality of the horrible situation. 

Prayers to you and yours and thanks for listening to my rambling rendition of my father's last chapter.

Yes, Big Pharma is BS, they are about treating and not curing, but you were right in trying.



Thank you so much for sharing, I think my issue when first writing this, was more or less now that I read it again, and reading that you went through something similar is, after seeing/reading/speaking/listening all these years, its easier to blame the system I am so hell bent on exposing in some way, and now I have lived through it, and am not sure what part I played or not played in all of this.

This was the first time, I seriously went towards the house that was on fire, instead of walking away from it. Every part of my being was like "you know how this works", and I could do nothing about it, when it was right in my face.

Now that I am trying slowly to come back to research, I had no one to ask or to share this part of my mind because no one would understand or think that I am nuts, to even put some kind of "conspiracy" spin on it. Thank you for your response, it means a lot.

Peace, NRE

[putnam6]

Don't get me started I would take my Dad in for chemo, and the place would be packed with patients, virtually 20-25 patients every session from morning to afternoon. There is no way they could make as much with a real cure vs the endless treatment sessions, it just feels like they found something that works semi-well in the early stages but not so much in the later stages. And just build off that, without trying to find something innovative and different. 

It's why seeing so much money being thrown at COVID was ridiculous for its mortality rate

[Kwaka]

Three cancer cases I know something about

1/ Respected job. made a mess fixing it up, recovered.

2/ Long term disability. The chemo and radiation took some pressure off for month or two. Came back stronger as forecast. 6 months since diagnosed.

3/ Respected job with good health care plan, Been going on years. Tough nugget.

If I got diagnosed with cancer, be drinking chlorine dioxide like coffee to start. Tough job being a good doctor with the cash flow going on.

[putnam6]

Three cancer cases I know something about

1/ Respected job. made a mess fixing it up, recovered.

2/ Long term disability. The chemo and radiation took some pressure off for month or two. Came back stronger as forecast. 6 months since diagnosed.

3/ Respected job with good health care plan, Been going on years. Tough nugget.

If I got diagnosed with cancer, be drinking chlorine dioxide like coffee to start. Tough job being a good doctor with the cash flow going on.

Here's the thing if they can get to it early enough and its somewhere accessible they can make a difference. Completely anecdotal had a co-worker who had brain cancer originally stage 2 IIRC and had numerous surgeries chemo and radiation, he lived and worked for almost 9 years, and occasionally he would be all well, and then here it would pop up again. Lots of factors but it seems the success rate which has increased is still woefully low.

With my situation financially and knowing how it drained my family previously, I am pretty sure I wouldn't get treatment if it was past a certain stage.

[CoyoteAngels]

I don't think its a one size fits all answer.  I survived 6 rounds of chemo, 2 more than my dr initially wanted me to tolerate.  I didn't even lose my hair.  Much depends on the stage of cancer.  And if the cancer can be removed rather than shrunk. Cancer is many types.  I say yes because they are finding more and more ways to treat with more gentle chemo.

[Kurokage]

I'm truely sorry for your loss.

I can only copy what Putnam said, you did the best with what information you had at the time and tried to do the best for your Husband with what you had avalible. 
I'm sure he would've gone through anything to have what time he had and extend it by what ever little he could to be with you.

[putnam6]

I don't think its a one size fits all answer.  I survived 6 rounds of chemo, 2 more than my dr initially wanted me to tolerate.  I didn't even lose my hair.  Much depends on the stage of cancer.  And if the cancer can be removed rather than shrunk. Cancer is many types.  I say yes because they are finding more and more ways to treat with more gentle chemo.

You are so right, it does depend on the situation my Mom had breast cancer, back in the 80s scared the hell out of us and she is still with us basically because they found it soon enough and she had it removed. Why did it scare us so much, her younger brother's wife called us while we were on vacation about 5-6 years earlier, she took him to the hospital and he was having trouble breathing. We rushed home and found out he had a tumor about the size of a quarter in his back, they cut it out but had to slice his back open to get it and make sure his back would heal, they did chemo and radiation, and 6 weeks later he was dead it had already got in his lymphatic system and spread. He was just 29 years old, it was brutal. You just never know...

[CoyoteAngels]

You are so right, it does depend on the situation my Mom had breast cancer, back in the 80s scared the hell out of us and she is still with us basically because they found it soon enough and she had it removed. Why did it scare us so much, her younger brother's wife called us while we were on vacation about 5-6 years earlier, she took him to the hospital and he was having trouble breathing. We rushed home and found out he had a tumor about the size of a quarter in his back, they cut it out but had to slice his back open to get it and make sure his back would heal, they did chemo and radiation, and 6 weeks later he was dead it had already got in his lymphatic system and spread. He was just 29 years old, it was brutal. You just never know...

So young! Cancer is a buzzard.  I knew of a family with an 18 month old with a cancerous tumor on his brain.  It was removed, he did chemo and is now a normal little guy having fun.   Sometimes there is no rhyme or reason to it.  I was lucky and live each day now. feeling like I'm on borrowed time.  All the more exciting and blessed.