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Rarity Fri Mar 2, 2018 05:17 PM

The transplant journey begins....
I would first like to thank all of you for your replies to questions when it all began for us. It was very helpful and very much appreciated. As well as reading through past posts to help us understand about MDS. My husbands transplant journey is about to begin after testing. Please pray for him. I am an emotional wreck, but I can't show that and trying to be strong.

Neil Cuadra Fri Mar 2, 2018 11:38 PM

We wish you and your husband the best of luck.

My recommendation is that, while he's inpatient, you spend as much time as you can with him in the treatment center. In my experience, transplant patients can be awake, asleep, loopy from medicine, confused, anxious, lonely, or feeling OK at all different unpredictable times of day. If you or another family member can be there to be his advocate, hear anything the doctors and nurses tell you, and keep him as comfortable as possible, it'll be that much easier for him.

Please let us know how it goes.

Rarity Sun Mar 4, 2018 09:13 AM

Thank you Neil. I appreciate the tips! Thank you to you and your wife for having this forum. It's been very informative and helpful with individuals who answer questions.

Meri T. Sun Mar 4, 2018 10:20 PM

I wish your husband all the best for this coming transplant. He has no blasts, has a donor, a good team of doctors, and he has you as his advocate. I think the outcome is leaning on the bright side.

I will add your husband's health to my daily prayers.

From my experience, please limit the amount of visitors in the room. I know they mean well, but it can take a toll on the patient.

You sound like a silently strong person, with you by his side, your husband will make it through this.

Rarity Tue Mar 6, 2018 07:06 PM

Thank you MeriT, Keep on doing well with your journey!

Heather8773 Fri Apr 6, 2018 01:56 AM

I completely understand how afraid you are. God bless
My husband is almost 5 years out from transplant and my best friend that by chance we met as neighbors 2 years after my husbands transplant is almost 20 years out from her MDS transplant

Rarity Sat Apr 7, 2018 06:42 AM

Thank you Heather. It is wonderful that your husband is doing well! And the people who are a fantastic number of years post transplant! It is truly amazing! It gives us hope for a good outcome.

Rarity Thu Apr 19, 2018 09:32 AM

Hi, Hope everyone is doing well,

What did you go with for GVHD/transplant? Doing a randomized clinical trial of GVHD prophylaxis or standard care?

All the best,

Rarity Wed May 16, 2018 10:36 AM

Hello. Hope everyone is doing well. Wanted to post an update on my husbands transplant. He did well with the conditioning with some of the usual but not bad side effects. Transplant was on Monday and he is doing well.

GoodDay5150 Wed May 16, 2018 01:47 PM

Hi Rarity. We wish your and your husband success. If you search my posts, I have written abt my experience w/ GVHD and the entire transplant process. My GVHD was most pronounced for a few years following my transplant and seems to be (hopefully) SLOWLY going away. Most recently, abt 5-6 months ago, I had 4 Rituxan infusions, which have helped. I did photopheresis, steroids, nilotinib, and probably something else I am forgetting. I am on volume 2 of my paper medical file at my transplant dr's office. A lot of appointments! I was told that my office was going to begin Rituxan injections which take a lot less time than an infusion, so that will be beneficial to those w/ GVHD. With that, some transplant patients experience very little GVHD, so hopefully your husband falls into that category. Please keep us updated.


Rarity Sat Jun 9, 2018 05:20 PM

Hi Mario,

So glad you are doing well. I'm hoping not too much of the GVHD for him.
I will read your transplant posts. Take Care!

My husband is doing well post transplant. The chemo was hard on him especially with the mouth sores and his poor esophagus. Could hardly swallow.
The mouth sores have healed and his throat is almost there. Trying to work on getting some weight back on him. But those of you know about those taste buds. I try not to push too much. And get and make what he thinks will taste good. He is having bouts of itchy skin. His blood pressure seems to be running on the low end. Post transplant seems to be going well so far. Grateful for no major complications.

MelMor Sun Jun 10, 2018 10:47 AM

Hi Rarity, my husband had a hard time with taste too, especially day +15-30. He would say everything tasted like wet cardboard. Yuck! The best things we found were cold applesauce and peach cups. Also I would make him a milkshake of about 5 scoops chocolate ice cream, 1 chocolate high protein boost, a chocolate carnation instant breakfast pack, 1 teaspoon peanut butter and 5 ice cubes. I would haves added a banana too but hes not a fan. It make about 26 ounces (so 20 for him and 6 for me!). It had about 30 grams of protein and 800 calories. He was eating about three of those a day and they helped him keep some weight on. He will get his taste back soon! Hang in there.

Rarity Sun Jun 10, 2018 06:36 PM

Thanks MelMor! That's exactly how he describes how food tastes. Yuck is right.
He says chocolate and Greek yogurt seems to taste the same. I will try your recipe. Many trips to the grocery store to help him eat. Thanks for the tip. Day +27 so grateful going well aside from the taste of food. Take care.

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