Chemo and Immunotherapy for life

MJG1

My husband's new cancer(s) have been deemed to be inoperable as the surgeries would not be beneficial without the ability to have radiation.  He had the lifetime max of radiation in 2016. 

He will be taking part in a study at Siteman Cancer Center in St. Louis, MO.  He will have chemo and an immunotherapy drug for the rest of his life.  Anyone else on lifetime chemo and immunotherapy?  Any positive stories?  

 

Thank you,

Margi

LitlCJdoll

Well, yes...

Margi,

My boyfriend Randal was on Chemotherapy, repeat Radiation and he had 2 immunotherapy agents ( his cancer advanced regardless).

 

But Yes. Randal had chemotherapy, many different agents, for 9 YEARS,. His first cancer the CLL leukemia,.Stage IV, which appeared as an underarm / chest swelling in 2012 at age 52--- He battled through 2 different chemo therapies for 2 years which put it into Remission.  Great!! And he continued to work during b that time. But then he was hit with Stage IV HNSCC base of tongue. He started Cisplatin and 37 radiation treatments and within 4 months he had tumors in his liver, spine, hip bone, around gall bladder. He was 54 then.

They kept him on chemo therapy for metastasized  cancer. Immunotherapy, while he " enjoyed" it as a respite from chemo for a while--- sadly neither Keytruda nor Opdivo provided any durable lasting response. His tumors came roaring back.  His oncologist in Atlanta ( Emory university) chose Chemo agents which were not the traditional ones , in later stages but rather the ones for metastasized cancers. Randal wrote 568 answers/ posts on the Quora Digest, mostly about Chemo and cancer.

He was still writing 2 days before he passed....

 

I am guessing your Dennis will be getting one of the newer Combos of an immunotherapy agent plus a chemo.

 

Randal Lived on chemotherapy. Without it holding his tumors at bay, his life would have been many years shorter.

During that time, he was able to contribute a large work of writing plus his own autobiography.  ( plus be my Beau !)

On Quora, Randal had 291 Followers!!  The esteemed Head & Neck Radiation Oncologist Dr. David Chan from Stanford was one of Randa'ls loyal followers. Dr. Chan now wants me to write a piece, about the 2 of us...and about his life...  

To Randal, it was worth it to wake up on this side of the grass everyday. He put up with the side effects,...life alterations, ... 2 feeding tubes, Tracheostomy in 2019... Too many changes to list here ..

Anyway, to him it was worth it, just to be able to Live years longer than he would have otherwise.

Its each persons decision whether they want to / can live with the effects.

And I mean its the PATIENT'S decision. Its Not up to the persons family, nor caregiver, nor doctor.  It has to be the patient's decision.  I Always made that very clear to him, with every change that I respected whatever decisions he made, and that I stood by him and his choices 1000 %.  We had a unique situation, me being advanced Stage as well.  I perfectly understood, and supported him And his decisions no matter what.  That's how it has to be, whether is a question about Full Code versus DNR, or when/ if to go to Hospice.

By the way, his daughter Called in Hospice to come talk to Randal, without his knowledge .. Wow, he was very Angry with her!! And I do not  blame him.

It has to be His decidion. No one elses.

As a fellow patient, I Uniquely understood.  I wholly respected him.

 

(I miss you, Randal, my strong warrior..,). May 18th, 2021

MJG1

LitlCJdoll said:

Well, yes...

Margi,

My boyfriend Randal was on Chemotherapy, repeat Radiation and he had 2 immunotherapy agents ( his cancer advanced regardless).

 

But Yes. Randal had chemotherapy, many different agents, for 9 YEARS,. His first cancer the CLL leukemia,.Stage IV, which appeared as an underarm / chest swelling in 2012 at age 52--- He battled through 2 different chemo therapies for 2 years which put it into Remission.  Great!! And he continued to work during b that time. But then he was hit with Stage IV HNSCC base of tongue. He started Cisplatin and 37 radiation treatments and within 4 months he had tumors in his liver, spine, hip bone, around gall bladder. He was 54 then.

They kept him on chemo therapy for metastasized  cancer. Immunotherapy, while he " enjoyed" it as a respite from chemo for a while--- sadly neither Keytruda nor Opdivo provided any durable lasting response. His tumors came roaring back.  His oncologist in Atlanta ( Emory university) chose Chemo agents which were not the traditional ones , in later stages but rather the ones for metastasized cancers. Randal wrote 568 answers/ posts on the Quora Digest, mostly about Chemo and cancer.

He was still writing 2 days before he passed....

 

I am guessing your Dennis will be getting one of the newer Combos of an immunotherapy agent plus a chemo.

 

Randal Lived on chemotherapy. Without it holding his tumors at bay, his life would have been many years shorter.

During that time, he was able to contribute a large work of writing plus his own autobiography.  ( plus be my Beau !)

On Quora, Randal had 291 Followers!!  The esteemed Head & Neck Radiation Oncologist Dr. David Chan from Stanford was one of Randa'ls loyal followers. Dr. Chan now wants me to write a piece, about the 2 of us...and about his life...  

To Randal, it was worth it to wake up on this side of the grass everyday. He put up with the side effects,...life alterations, ... 2 feeding tubes, Tracheostomy in 2019... Too many changes to list here ..

Anyway, to him it was worth it, just to be able to Live years longer than he would have otherwise.

Its each persons decision whether they want to / can live with the effects.

And I mean its the PATIENT'S decision. Its Not up to the persons family, nor caregiver, nor doctor.  It has to be the patient's decision.  I Always made that very clear to him, with every change that I respected whatever decisions he made, and that I stood by him and his choices 1000 %.  We had a unique situation, me being advanced Stage as well.  I perfectly understood, and supported him And his decisions no matter what.  That's how it has to be, whether is a question about Full Code versus DNR, or when/ if to go to Hospice.

By the way, his daughter Called in Hospice to come talk to Randal, without his knowledge .. Wow, he was very Angry with her!! And I do not  blame him.

It has to be His decidion. No one elses.

As a fellow patient, I Uniquely understood.  I wholly respected him.

 

(I miss you, Randal, my strong warrior..,). May 18th, 2021

Thank you LitlCJDoll

I agree.  Totally up to my husband to decide the course, but he chooses life and wants to participate in whatever studies he can to increase his length of quality of life. I am glad that your Randal lived longer and better than he would have.  Thanks for sharing. 

Margi

Mainestateofmind

Thank you for these comments. My husband is scheduled this week for the 2nd infusion of immunotherapy: Nivolumab. The information packet lists potential side effects that are overwhelming to think about but he is 100% on board with treating the metastasized HPV cancer.

The first treatment left him with severe fatigue about a week after. Hoping it gets better. His oncologist said treatment will be 1x a month for 2 years, if he can tolerate it.

He also participates in studies for the HPV cancer.

Thanks,

Sandra