Halted

[kellyOd]

So turns out Ryan’s ALT is extremely elevated.. only liver panel that was abnormal. Medicine induced hepatitis 🙁 so no infusion today for Ryan.. we are on the steroid train as of today. 80mg, and 10mg taper every week until he’s off completely then we can resume treatment. The way in which we will resume is still up for debate. So for right this second, I am pissed; upset, and scared. Not towards anyone or anything, it’s no ones fault of course.. Just frustrated. If you look at him he’s totally fine. No yellowing of eyes no tenderness, literally nothing. But blood work doesn’t lie, so what are ya gunna do. 😔 Ryan is trying to lift my spirits. I told him try again in a few hours cause I’m just upset and want to be upset for a few minutes.. the doctors did say that if it’s either a life saving treatment, or frying his liver and being put on dialysis it’s an easy choice. But for now he’s sitting in a good spot. 2 NED scans.. one coming up May 29th. And the doctor insured that the immunotherapy is well in his system so it’s not like he’s going cold turkey with nothing. And at the end of the day if shit hits the fan, we have left over Taf/Mek in our fridge.

Just venting y’all.......

I’ll have to read back through a lot of everyone’s experience with steroids cause I’m just beside myself...

Love to all,

Kelly

[missyrand Ambassador]

Kelly

It’s ok to be pissed, upset, scared, AND grateful at the same time

Venting here is honored and scared activity

Missy

[SGHSweethearts]

KellyOd,

I do understand all your frustration Kelly. I have been where you are, and we are there again now. Ryan had 2 treatments of the Yervoy right? Most people only get 2 so they told us. Yes, the immunotherapy is still in his system and working. Praying Ryan can maybe just continue on the Opdivo alone. Mark just continued with the Opdivo alone and did well for almost 20 months. We just got back from the Dr. and Mark still couldn’t have his infusion again today, and Dr mentioned we don’t want it to attack his heart, Uh No, we don’t. He has been off the Opdivo now for 5 wks and is going to be off for another 6 wks at least, but sounds like he may be off the Opdivo for good now. So not sure what our next step is either. Mark has his scans on June 5th and then we see I guess. The Opdivo finally did a number on his esophogus and Stomach. (Which it usually doesn’t attack, but it has on him). He started on 80mg of Steroids and is down to 30mg today. Tapering 10 mg a week, but when we get to 20mg he has to stay for 2 wks and if he does ok try to go down to 10mg, and hold there if he can handle it at 10mg. I think Mark and Ryan are in a little of the same situation right now, and seem to be on the same scheduling for scans and infusions. I’ll be praying for Ryan and you as well. It’s hard I know, but just look how far you have come from where it was at the beginning. It is frightening, but we just have to try not to give into the fear. I believe God is protecting them and he has a plan for them. Hang in there Kelly, you’re both doing an awesome job, it’s tough I know.

🙏🏻

Michele

[kellyOd in reply to SGHSweethearts]

Thanks so much for sharing that with me. Yes Ryan did the Yervoy and Opdivo combo for 2 infusion cycles. I have heard that as well, most don’t finish all 4. I think the plan (if I had to guess) would be to continue on the Opdivo alone after the steroids are done. His ALT is at 185, where the standard range is between 4-40. I usually check his blood work myself and I didn’t even see it, I missed it. Or else I would have called ahead of time to make sure he would be good for infusion. But instead; he practically almost had the saline drip going getting ready and it was halted. I hope Ryan doesn’t have a hard time getting off the steroid.. he was on decadron when he got the tumor removed so his brain didn’t swell; and the side effects were MASSIVE. Extreme weight gain, large appetite, very bad acne. The whole nine. And that’s why Ryan is upset. He doesn’t want to deal with that. I agree that it’s very coincidental that Ryan and Mark are very close in regards to scans, infusions, and now situations as a whole. Kind of comforting to be honest.. because mark is doing well ❤️ thank you for the prayers. I do know God has a plan.. and no matter his blue print; I know he will be safe. I hope I can talk to you shortly on behalf of him for possible side effects. It will be nice talking to someone who has been through this already.

Sending love to you and yours ❤️

[doulagirl]

Kelly,

Your frustration and anger is so understandable. I don't have any experience with the Yervoy/Opdivo combo so can't help you there, but my husband also had to stop infusions and go on high dose steroids because of severe side effects and guess what, so far the immunotherapy medication in his system has continued to work, so maybe that can lift you up a little.

About the steroids and weight gain etc... we are on a whole foods plant based diet ever since the diagnosis and I think that really helped him to not gain weight and have many of the undesired side effects. He feels really hungry because of the steroids and eats tons of fruit, nuts and other plant based food, cause there really is no limit to the quantity you can eat. Our doctor said that most people gain the weight because they go crazy on the carbs when they feel so hungry all the time. Hope that helps.

Praying for you to feel better soon, but totally understanding your anger right now.

Dorothe

[kellyOd in reply to doulagirl]

Thank you for sharing that with me, that helps keep me at ease that his system isn’t completely vulnerable.. yeah when he gained all the weight the first time; he was eating whatever he wanted. So that makes perfect sense. I’ll keep that in mind. I’m sure his appetite will surely change, but have him eat good food rather than bad.

Xoxox