Trucking along

[kellyOd]

Side effects from chemo with Ryan still suck. It’s like nerves all over the place hurt him. Injection site hurts. Not red or swollen or anything. Taxol is a serious irritant. Anywho, he’s okay. Hair is slowly starting to come out as of yesterday. He’s fine with it. I am hell bent on getting him back on immunotherapy. And i mean HELL BENT. Stupid steroids.... has to be lower than 1.5mg of decadron a day. He’s down to 3mg a day. Next drop will be .5mg 3 times a day which will put him at 1.5mg. I don’t know if oncology is happy about me pushing this hard but we have known for a long time chemotherapy isn’t curative. After the second opinion, it was made apparent, (or how I perceived it) that immunotherapy is where we need to be since he never “failed” on it.

How is everyone else?? Xoxo

[kellyOd]

Correction 2mg a day **** that he is on currently

[SGHSweethearts]

Kelly,

This sounds like some good news all the way around. Why did they ever stop the immunotherapy on Ryan? Praying he gets down low enough on the steroids. Are they then thinking of switching him to Prednisone if he has to stay on a low dose of steroids? Have you switched Dr.’s now because of the differing treatment opinions?

Mark is doing good. Still NED, Praise God. We are so grateful, and enjoying everyday.

Michele

[kellyOd in reply to SGHSweethearts]

They stopped immunotherapy because the ipi/Nivo convo gave him medicine induced hepatitis. His liver couldn’t take the combo. So it was not because it failed. His liver just took a big hit. We got a second opinion at a different hospital because we didn’t think that this was the end for him. Thank god we did. If his Onco team doesn’t have the same objective and outlook we do, then we will go to someone else that does. His team has been amazing thus far. But Ryan’s book hasn’t ended yet. This isn’t the last chapter. He still has fight left in him.

I am so damn happy to know Mark is still NED.. Jesus that is such a blessing. Your right, when these medicines work they really work. Mark got a good combo and a lot of help from God. He is a miracle ❤️

[kellyOd in reply to kellyOd]

And as for the steroids, decadron seems to cater more towards brain edema which is ultimately why he’s taking it in the first place. It’s just better than prednisone for that kind of thing. So I assume we will stick with that just cause of the neuro issues. He will go down to 1.5mg of decadron that is equivalent to 10mg of prednisone.

[SGHSweethearts in reply to kellyOd]

Kelly,

You are so right Kelly, Ryan’s book has not ended yet. You both keep fighting. New things are literally coming out everyday. I will continue to pray for Ryan and for you.

Yes, I’ve heard that decadron works better when brain Mets are involved. 10 mg is the dose Mark always try’s to maintain so that makes sense. Sometimes up and down depending on how he is feeling. Marks body could only handle 2 of the ipi/Nevo infusions, he then continued with the Opdivo alone, with much success.

Keep fighting, prayers are surrounding you both🙏🏻

Michele

[doulagirl]

Kelly, seems things are still moving in a good direction. And oncology's job besides treating Ryan is counselling you guys and decide together, so don't worry about them liking or not your questions and opinions. You are so right about the chemotherapy and going back to the immunotherapy seems like a good plan. In that case would he be going back to nivolumab mono? The thing about going back on immunotherapy after being taking off because of severe side effects, even if it worked, is still something being studied and the opinions among specialists vary a lot. We were at the Melanoma seminar that UofM organizes with AimatMelanoma last Saturday and one of the questions was precisely that. They just don't know, because the data is still immature. Continue looking into the trial options that might be available and please let us know how you are doing!

Dorothe