New to Forum - Brother (36) might have Grade IV Gut GVHD

[cfai84]

Hi all,

I'm Alfred - my brother's stem cell donor. My brother had MDS and did his chemo and stem cell transplant almost 130 days ago. At his 100th day, steroids were told to be lowered down, but he started puking and having diarrhea.

He was graded to have a Grade 3 Skin, Grade 1 Liver, and unknown grade Gut

He cannot eat, drink (except water) and was on nutrition pack for 30 days already.

We were told that the GVHD is steroid refractory. He has gone through the 2nd treatment - ATG, which showed no response except for some side effects for 1 week. Doctor is starting on the 3rd treatment and me and my mom were told to meet up with the doctors to "have a talk"...

My brother is only 36... he is extremely innocent... he has worked for people who never paid him, he gets bullied socially... and now he have this... for God's sake what has he done wrong in his life...

Please share me some thoughts and feedbacks and God Bless my brother that he can fight through this and let him return to his normal life...

[Neil Cuadra]

Alfred,

Your brother deserves a lot better. I'm sorry to hear about the severity of his GVHD. Is he getting all of his nutrition by IV? What did his doctor tell you about the goals of the ATG treatments? How are your brother's blood counts? Despite the GVHD, is he considered cured of the MDS? That would be a silver lining in this storm cloud.

I know how awful GVHD can be. My wife had GVHD of the digestive system after her transplant for MDS, affecting her mouth, tongue, throat, esophagus, and stomach. Even after talking to the doctors, we never understood what mechanism lets GVHD dissipate over time, but eventually the primary symptoms lessened. Although my wife's digestive system is still sensitive, it's now a background condition and the constant discomfort is gone.

Did you have the talk you mentioned with your brother's doctor? What did you learn? Have you considered getting a second opinion about the best approach at this point? Have you talked to the wonderful people at the Aplastic Anemia & Myelodysplasia Association of Canada (AAMAC)?

The first year is the hardest so you may have to take it one day at a time until things get better. I really hope your brother can get past these dire straits soon. To answer your question, he did nothing to deserve this condition and neither did the rest of us. Nobody deserves MDS or the effects of its treatment. You're a hero both for donating stem cells to save your brother's life and for looking for information to help him now.

[Sally C]

Dear Alfred,
I wish you and your brother the best. You are correct in saying that this disease isn't fair but your brother has done nothing to bring it on. If you think about it, Jesus was totally without sin but He suffered as well. It's all part of God's Plan - Proverbs 3:5 - "Trust in the Lord with all thine heart; and lean not unto thine own understanding". Your brother's reward for being such a good person will come at some point.
As Neil said, your brother is blessed to have such a wonderful, caring sibling.
Please keep us posted.
God Bless,
Sally

[cfai84]

Thank you for the encouragement.

The 3rd treatment is named Etanercept, a type of fusion protein to lessen the GVHD. His blood counts are definitely lowered everyday and he needs transfusion. (2.3 79 23 was yesterdays) He had a big pack of platelets yesterday (usually a small pack). He has been getting nutrition and all his meds through Hickman line for almost 40 days now. Doctors have already announced that he can really eat whatever he wants - his Guts GVHD is Grade 4.

We eventually searched for two Chinese doctors who were well-known to had saved last phase cancer patients and patients from the ICU that ended up walked out on his own feet. He rejected to take the first chinese med since the taste is probably the most awful out of all - but the first few time he took it the stool definitely looked different and not as red.

As of yesterday, doctors were "surprised" to see him get a little "better" just in a few times of the stool color. But in a macroscopic view, he's still the same day by day.

Unfortunately he didn't like the chinese med, now my mom asked for a tasteless chinese med/soup to stop hemorrage - trying to combine some soy milk for him so that he takes it without noticing. Chinese med eventually can give anyone a psychological bitter taste. Just woke up and have yet to get an update today.

This is coincidentally surprising that I read Proverbs 3:5 yesterday and I saw this post. (it was my first time reading the Bible 2 days ago)

May God Bless him.