Ongoing GI side effects from Yervoy

[missyrand]

It's been a week of extremes.

Our youngest daughter got married on Sunday, and it was such a day of joy. There were smiling family, happy friends, beautiful bride and groom, new in-laws, great weather (outdoor ceremony!), dinner and dancing, and I ended the night sitting by an outdoor fire overlooking a river with my darling husband and his best friend with the moon beaming down on us. We have been looking forward to this for a year, especially during a year where we have sustained so many losses.

Tuesday Wayne went for a CT scan to see if the Yervoy has been doing any good. He has continued to have GI side effects since his last infusion 8/31/18. He has never reacted to the barium contrast before, and it may have been what he had for dinner, or just the Devil's Triangle of confluence, but he had uncontrolled vomiting and then diarrhea from 11:30 - 4 am when I determined we had to go to the ED for fluids. He got stabilized and 2 bags of fluid later, we went home at 9 and got some much needed sleep. He's continued to hold down clear liquids, and now on the

BRAT regimen, but it was a rough 36 hours. Fortunately, no bowel blockage and CT showed no melanoma organ involvement.

So tomorrow we see the oncologist with our 20 questions, asking for a palliative care consultation, how much longer he can anticipate the daily GI problems, if he can decrease the prednisone for inflammation he's been on now for 10 weeks, and what is the prognosis moving forward. The blessing is his internal organs look good on scans. The challenge is that new melanomas keep developing just under his skin in random places, and treatment doesn't seem to be impacting them so far.

I'm tired. So I'm going to follow a 12-step bit of advice (HALT) and will head home for a bite and early to bed.

Thanks for being part of my support community ya'll. Here's a look at my happy place from the weekend.

Missy

[Hidden]

What a beautiful photo! So glad you had a bright spot during this difficult time. Also glad you had positive news about his internal organs. The GI stuff is so difficult. And frustrating for your husband I’m sure. It’s this whole cycle of anxiety about eating or drinking, which can make the stomach and intestinal stuff worse, and reluctant or avoidant to try again, which leads to dehydration, it’s just an awful cycle. The only thing that has helped my daughter with this is the TPN. And today that’s not working either. So I feel you. Palliative care has been really helpful. And I hope you get your questions answered! I value your feedback and experience. Sometimes I forget you are also going through so much and not just our Moderator hugs!

[HSsweetheart]

Congratulations on the two of you being able to celebrate with your daughter. We take the blessings as they come.

[Bigsister3]

Congratulations to you and your family. How wonderful to be able to share such a happy occasion especially after this past year. I am glad scans are clear and I am sure the GI thing will be temporary. Always thinking of you

[SGHSweethearts]

Congratulations on the wedding . What a blessing to have your husband there to enjoy that special day. Such good news as well that the CT Scan showed no organ melanoma. I am wondering the steroids are not helping your husband with the GI problems?. I don’t know is it that some things work for some people and not for others?

[missyrand Ambassador in reply to SGHSweethearts]

As we understand it right now, at our melanoma only practice, my husband is only the 3rd person to have ongoing GI symptoms for so long that did not respond to Steroids plus gut slowing OTC or prescribed meds. Welcome to the 1%.

So they have recommended ruling out the presence of C-diff (you really don't want to know what you have to do to get a sample tested for this), and then got approval from the insurance for 1-2 infusions of Remicade. Remicade is usually used to treat Crohn's disease or ulcerative colitis, to reduce inflammation that is all through your gut

Fingers crossed, he will get this infusion next Tuesday.

missy