Jersey Guy

[ramey2148]

Hello everyone. I just had my 100 day biopsy and have to wait until the 22nd for the full results. I have been feeling pretty good but still real weak in the legs and tired during the day. They reduced my steriods so my appetite has not beeen the best but i force myselff to eat as much as i can. The Dr. says I feel tired and my appetite issues are due to the reduction in steroids. My blood levels could not be better. I just had a little stay in the hospital with bad pains in my stomach and groin area, and they said it was a kidney stone that passed. Well I hope everyone has a Great Day
Bob

[Kenneth_In_Va]

Great to hear of your success and good health.
Merr Xmas to you and yours,

Gene Milburn,
Gene_In_Virginia

[Zoe]

Bob,

So glad to hear you have passed another milestone! Hang in there, you are doing great. It is just good to hear from you, keep posting when you can.

Zoe

[Mary4Mike]

Bob,
Wow, 100 days! It sounds as if things are going great for you. The weakness and tiredness is to be expected, steroids or not. Your body has been through alot, but it is something you have to work through, push yourself a little more each day.

All the best on your reports and please let us know!

Merry Christmas!
Mary

[ramey2148]

Hello everyone. I just got back my results from my 100 day biopsy. Everything was GREAT! My chromosomes were good and my body has 100% takeover of the donor’s cells. So when I got the news I was so excited that I couldn’t think of any questions to ask. When I got home I sat and thought what exactly does the 100% mean? Does it mean I don’t have to worry about any GVHD anymore, should I be getting more energy soon, and does it lesson my chance of relapse. Any thought from anyone on those questions would be appreciated. To everyone out there have a great day and stay possitive.

[Mary4Mike]

Bob,
Congratulations on the great news. 100% means that they didn’t see any of your cells, only donor cells. This does not mean that GVHD isn’t a possibility, in fact, it will be a possibility for the rest of your life. You just have to report any new symptoms to your doctor so that they can adjust your immunesuppressant med. You will gain energy and strength every day.
Enjoy your wonderful news!

Mary

[jimkufis]

Hi Jersey Guy. Jim Kufis here. I am very pleased to hear of your success with the transplant. It appears that you have floored your opponent and now you are on the path to full recovery. Your success gives me hope that I may also have success with beating MDS.

[simplistic007]

Hi Jersey Guy,

I am so happy to hear this news. You have been so strong along the way and we all appreciate your keeping us updated as you progress along. Keep up the good work and again, "congrats."

p.s. As for relapse, I think anytime you have been diagnosed with MDS, anything can be possible, but for now, not to worry and enjoy your good results and don’t worry about tomorrow. Live for today. God Bless. Happy New Year!!! It is a great start already.

simplistic007

[ramey2148]

Thanks you for the possitive support and feedback. I know I am not totaally out of the woods yet but all of you have made this life challenge easier. When your going through it you have alot people telling you to do things that you cant. When it got frustrating I would turn to all of you to tell what i was feeling was normal. That my friends was priceless and I thank you. Hope everyone has a GREAT day!
Bob

[ramey2148]

Has anyone out there experianced fatigue after day 130? I feel like I need a nap everyday in the afternoon. I guess it could bee the winter but not sure. It’s beeen slow getting my strength back because it’s so cold out to do anything. Everytime I go to the Dr. she gets mad because i lose weight. Everytime I ask her how my blood work is she says "it ccouldn’t be better. Any ideas would be appreciated.

[Mary4Mike]

Are you finding that food doesn’t taste good or that you don’t have an appetite? It took quite a while for Mike to regain the ability to taste food. He weighs 40 pounds less than before the transplant, but then this is a good weight for him. He only wanted cold food and he had trouble swallowing because of dry mouth. That has improved. As far as fatigue, sometimes you have to expend energy to get energy. There was a thread on this on the MarrowForum. Someone was asking the same question only this person didn’t want to get dressed or do anything but watch TV all day. He was also on antidepressants, so this could be a whole other set of problems. The fact that your counts are good might suggest that if you start some sort of exercise program you might gain some energy. Perhaps something as simple as walking. This is what Mike did. He had his transplant the same time of year as you and he would put a scarf around his face, bundle up and walk….not very far at first, but slowly built up his stamina.

Just a few suggestions…….and you might want to check out the MarrowForum. There are several posters that have or are going to have transplants.

This forum has really slowed down…..not sure why…..but I still need to check in. Stay in touch!

[jimkufis]

Hey Jersey Guy. Jim Kufis here.
This transplant that you have gone through is truly amazing. Don’t expect your body to recover like getting over the flu. Recovery is going take many months as the chemo you went through effected your whole body. Being that you are still quite young I expect you will have a good recovery in time. You may move this a long with some exercise like walking every day and gradually increasing your distances. After you begin to feel a little stronger try some light wight lifting at the gym. Also, get out a little and be with other people. A positive attitude on recovery will work wonders. The fact that you are alive and improving is marvelous.

[ramey2148]

Mary yes I am having trouble eatiing and my Dr. wants to up my steroids but I keep telling her no. I hatedd coming down off of them. I have been going out alot more with friends to watch some Hiigh School wrestling matches. Once and a while aa guy from work will pick me up and I will go on patrol with himfor a while. I admit I do need to exercise more.
Jim aand Mary thanks for the good advice as always. Hope evveryone has a great day!
Bob

[Mary4Mike]

It sounds like you are getting back in the groove of things little by little……just take your hand sanitizer

Are you having trouble eating because of appetite issues or dry mouth?

Keep in touch!

[ramey2148]

I think it’s my tastee buds and dry mouth. I hav e thrush and they haven’t been able to stop it. I feel if they stoppeed that it will help. As for now I will just keep forcing it down.

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