Keytruda....Working for MSS....Mutation Burden is the Key

[boxhill]

Pyro, do you think three months is long enough to be certain? I seem to have read that for some people it takes 6 months.

[natelaugh]

Pyro, stay strong and keep hope alive.

Nate.

[Pyro]

Thanks for the words folks, I won’t know anything for sure until Tuesday. I think I’ve done enough chemo for a lifetime, but we will see.

[LPL]

Thanks for the words folks, I won’t know anything for sure until Tuesday. I think I’ve done enough chemo for a lifetime, but we will see.

Good Luck on Tuesday Pyro !!

[Pyro]

Pyro, do you think three months is long enough to be certain? I seem to have read that for some people it takes 6 months.

I like where you heads at on this one, I know my Onc doesn’t think it’s working. Things are happening so fast with immunotherapy, we’re learning as we go. That being said, I’ve read the treatment changes the immune system forever and the actual drug stays in your system for 3 months, so it will keep working, or not working. My Onc has a 0% success record for MSS patients taking Keytruda, winning!

[Pyro]

Well, results are in. 4 tumors about 3cm each in the lungs and a newbie in my liver about 2cm. I have a slight wet cough but that could be anything, Cea is now 36. I set up an appointment next Wednesday for FOLFIRI+vectibux with the understanding I might cancel b/c I really don’t want to do it. I’ve told myself for months I’d never do that chemical poison again but with this in my face I’m teetering. I told the Onc if I’m going to die, I don’t want to suffer (chemo) and die. She got a little emotional and told me she saw her dad go through it and colon cancer chemo was one of the hardest for the patients to handle. I’m physically strong enough to do the chemo, I know it, mentally though I’m not sure. I’m heading out to the beach for a few days with family to ponder life and not think about this for a while. I may not check in until I get back, damn this disease.

[martd]

Enjoy your time with family and know whatever decision you make will be a good one

[natelaugh]

A strategy I used to help my dad is use chemo to hold cancer at bay and hope a new med or technology break thru in 1-3yrs. Having hope can help to be mentally strong.

Nate.

[Pyro70]

I’m heading out to the beach for a few days with family to ponder life and not think about this for a while. I may not check in until I get back, damn this disease.

I know this beach called scar reef on the island of Sumbawa, Indonesia from when I lived in Indo. Great surf, very chill/cheap BNB right on the beach. It’s hard to get there, so there aren’t a lot of tourists. I’ve certainly thought about making a one way trip a few times...

[juliej]

Well, results are in. 4 tumors about 3cm each in the lungs and a newbie in my liver about 2cm. I have a slight wet cough but that could be anything, Cea is now 36. I set up an appointment next Wednesday for FOLFIRI+vectibux with the understanding I might cancel b/c I really don’t want to do it. I’ve told myself for months I’d never do that chemical poison again but with this in my face I’m teetering. I told the Onc if I’m going to die, I don’t want to suffer (chemo) and die. She got a little emotional and told me she saw her dad go through it and colon cancer chemo was one of the hardest for the patients to handle. I’m physically strong enough to do the chemo, I know it, mentally though I’m not sure. I’m heading out to the beach for a few days with family to ponder life and not think about this for a while. I may not check in until I get back, damn this disease.

I really wish I had something witty or clever to say right now, Pyro, but I don’t. This is so f**king unfair. Be you. Be strong, which you are regardless of any choice you make.

You have so many people out here who think about you and love you in their (our) own way, even if we’ve never met. Sending you peace and hugs.

Juliej

[brokenwings]

Well, results are in. 4 tumors about 3cm each in the lungs and a newbie in my liver about 2cm. I have a slight wet cough but that could be anything, Cea is now 36. I set up an appointment next Wednesday for FOLFIRI+vectibux with the understanding I might cancel b/c I really don’t want to do it. I’ve told myself for months I’d never do that chemical poison again but with this in my face I’m teetering. I told the Onc if I’m going to die, I don’t want to suffer (chemo) and die. She got a little emotional and told me she saw her dad go through it and colon cancer chemo was one of the hardest for the patients to handle. I’m physically strong enough to do the chemo, I know it, mentally though I’m not sure. I’m heading out to the beach for a few days with family to ponder life and not think about this for a while. I may not check in until I get back, damn this disease.

Hi Pyro,
I'm really sorry you're in this situation...
Two thoughts:
1. have you ever tried medical cannabis? For some people it's been a miracle therapy against chemo side effects.
2. what about doing a clinical trial?

Hoping for the best...

[Pyro]

A strategy I used to help my dad is use chemo to hold cancer at bay and hope a new med or technology break thru in 1-3yrs. Having hope can help to be mentally strong.

Nate.

Thanks to all who responded, I’m still mulling it over. I’ve been dealing with this for damn near 4 years, thinking of doing chemo for another 1-3 years is a bridge too far for me, I’ve already done 80+ rounds. I have been “officially” doing medical cannabis for a year, it makes a big difference, wish I would have started 4 years ago but I was still in the military. We stayed at the Catamaran resort in San Diego, I didn’t want to leave. If I could figure out how to post a picture I would. I’ll keep you all updated, need to go smoke something.

[stu]

Pryo ,
I am feeling for you and hope you come to a decision that feels right within you .

If you try Tinypics it’s really easy to upload a photo . You just select “ Message Board” and copy onto the thread . I am dreadful with all this but managed it well . It would be lovely to see your photo .

Take care ,

Court

[Pyro]

Had to delete, most family doesn’t know yet. Added Facebook profile, I’m the wet pilot second from left. Sorry, I won’t friend you if we’ve never met.

[natelaugh]

Pyro,

5FU is a walk in the park for you. After 2-3 days disconnecting chemo, and it is ON. My dad would eat and gain his strength.

Nate.