Still trucking

[kellyOd]

Almost 6 months into stage 4 diagnosis.. wow time has flown.. had a rather unexpected appointment with the oncologist requested by us. Ryan has had a groin lymph node and a small pea size lymph node on his arm that he just made me aware of a few days ago.. he has said it has come and gone. So we decided to get it checked out yesterday. Luckily the oncologist said at this point she doesn’t think it’s big enough to cause for concern. Definitely flared up no doubt, but isn’t anything she freaked out about. Which made us more comfortable. Kinda a sit and watch thing. Which is nerve racking. But hey.. it could be worse and I know that. Otherwise, we made her aware of the decision we have made. He is going to be switched in a few months from the Taf/Mek combo to Keytruda, with 4 sessions of Yervoy so long as we don’t go through a huge “storm” again.. other than that Ryan went from 184lbs when he was healthy before the cancer diagnosis, down to 170lbs, back up to 191lbs he’s not happy about it, but from a medical stand point it’s good! He is doing well and we are living in the moment now. Soaking up not being in a hell storm. He’s thinking about going to support groups to offer help and hope as well! How is everyone else? ❤️ much love from MD

[SGHSweethearts]

Kelly, so happy for you, sounds awesome. When these meds work they work. Having been where you are I know that feeling. My husband is now 17 months out. God is good. He too has gained weight, but it is a small price to pay. We bought him bigger pants. In the scheme of things That is nothing. Enjoy every moment is the way to live life now. January 18th we will be celebrating our 44 yr anniversary, so blessed to be here. Continued prayers

Michele

[kellyOd in reply to SGHSweethearts]

I am so happy he is 17 months out and continue to follow you and your comments. There is hope. Happy belated anniversary ❤️ much love xoxo

[missyrand Ambassador]

kellyOd,

Is the yervoy and keytruda going to be sequential or concurrent? I'm so happy that Ryan has been benefitting from the Braf meds that he can try something else. As diligent as I have been to keep an eye on my husband #GetNaked screens, he has felt the new small lumps before I can see them. sounds like Ryan caught the small change in his body quickly, too. Glad you went to the doc for a consultation.

Ready for some more snow tonight in the DC area. Our daughter is flying back into DC from a J-term in the rainforest in Panama right now. Can't wait to hear of her adventures.

missy

[kellyOd in reply to missyrand]

The yervoy and keytruda will run concurrently for 4 sessions.. both at the same time. And then after the 4 sessions we will continue with just keytruda until further notice. I am a little crazy over protective.. although I don’t check him everyday I do run my hands over his back shoulders and neck a lot. He takes care of where the sun doesn’t shine lol. I’m so glad your daughter is back! I’m sure the stories are amazing 😊 how’s your husband doing?

[missyrand Ambassador in reply to kellyOd]

sounds like the same Optivo plus Yervoy combo that folks have been doing for a while. I haven't run into anyone yet using Keytruda instead of Optivo, but they are almost identical medications from different manufacturers, so makes sense.

Hubby is feeling well. Waiting to hear on getting permissions for a human subject trial at VCU in Richmond to go through, and then he will be doing all the steps for TIL. See my post earlier this week for those details.

He wrote to the study doc and asked what else he can be doing/ not doing to be in the best shape for the trial and she said get a colonoscopy done since he had such bad GI side effects from the Yervoy that he had to take a Remicaid infusion, so getting that on the books so there is no hold up once approval gets through at the university. The FDA actually just changed the rules for IRB's within the last week, but I'm not sure if it will speed up the process with VCU or not. It is essentially the same protocol they ran in July 2018 but are doing a second cohort.

Thanks for asking. Yervoy can be rough. Wayne had all the predictable sideeffects at treatment 2.5, right as the literature suggests. He really had to alter his diet, used zofran a lot for nausea. I know you all eat a lot of organics. He could not eat raw veggies or fruit for months. Went to a lot of BRAT-like food because it's all he could tolerate.

Best of luck to your sweetheart,

Missy

[Bigsister3]

It is nice to hear that there is a little peace right now. I agree with Michele when things work they work and that is a good feeling. Missy- I am sure it will be nice to have your daughter home. Everyone enjoy the snow and stay safe Have a little fun this weekend:).