GVHD crisis

[Marsha]

Hi everyone

Here is an update on myself. I have GVH in my mouth and they have been doing all sorts of things to clear it up. Well went into a spiral and ended up 1 1/2 wks in hosp. Couldn’t eat or drink much and lost weight on a daily basis. But because of my own stupidity I didn’t call right away because I thought I would manage on my own. Am 7 1/2 mmonths out of BMT. I will never ever do that again. I could have died as my kidneys were starting to not function right but they got things turned around and am home now. I’m working with a nutritionist now and going to keep gaining weight which is hard for me. I had so many nurses wanting to give me fat transplants. Well I have completely learned my lesson to the fullest extent and nurses and doctors have assured me they will not make me feel like a bother and I’m to say something if they do. So for all you other people with this type of personality where you think you can handle it yourself, well you can’t so don’t try

[gemloyear]

Hi Marsha, I,m sorry to hear that you were back in the hospital. You certainly arn’t the only one who thinks they can handle everything on their own. My husband does it on a regular basis, I have to argue and try to reason with him to go to or call his doc. It gets one into serious difficulty at times. I don’t blame anyone for brushing things off, long term illnesses get very tedious with all the meds, needles & probing.You were doing so well, I hope you are back on the way to excellant health again. Just think of all the delicious milk shakes you can have with no quilt!! TO GOOD HEALTH
Ellie

[Carrie]

Marsha Marsha Marsha… at least you learned a lesson. Don’t mess with GVHD.
I’m glad you’re better and I hope you keep improving.
Carrie

[JulieMarie]

Marsha,

Hang in there you’re 7 1/2 months out only another 4 1/2 to the one year mark. Eat some ice cream for me along with all those other sweet things.

[Suzanne]

Wow marsha, I am so glad it looks like you have things under control. Please let those good guys on your care staff take care of you and communicate all concerns quickly-even little ones!

[Jimbob]

Marsha,
You had a tough time with a GVHD and say that you would not do it again BUT if you had not gone for a SCT you likely would not have the option. You could have been gone. It is a tough row to hoe but, hopefully, you will get back much more in good quality of life, for a long time, than the pain and setbacks you have to get through first. At least that is what I keep telling myself.
Hoping and praying that we will be able to look back on this years from now and forget how tough it was.
Jim

[Terri]

Marsha, Hope you start feeling better thinking of you, Keep on fighting you have come so far.
God Bless

[geebeebee]

Marsha,

Wishing you the best in knocking all of these obstacles down. It sounds like you’re winning!

Greg

[shirlsgirl]

Hi Marsha,

Glad to hear that everything turned out okay…must have been scary though! Sorry that you had to go through that.

Take care,

Jody

[DonUK]

Hear hear Marsha – you know yourself better than anyone – unfortunately you found out the hard way, but the SLIGHTEST thing which you’re unsure of you should ask.
It’s a pain because the last thing you want is to be re-admitted, but better to be re-admitted for 2 days than 2 weeks !

So glad to hear your OK. We’ve been following your progress and pleased to hear a success story.

[Jack_dup1]

Hi Marsha,
Glad to hear everything turned out OK, you learned a hard lesson, some things you can’t handle on you own or put off. Keep us posted, your one of our success stories and we need happy endings.
Jack

[sparty517]

Hi Marsha,

My wife had her transplant in October 2004 and has had GVH in her mouth the past 3-4 weeks. She also had to spend some time back in the hospital because she was having trouble with her mouth which resulted in some type of bacterial infection. She is currently using nose drops, artificial saliva, liquid steroids and other things to try and control the GVH in her mouth. Have you had any luck with any of the treatments you have been given to help control the GVH?

Glad you made it through things. My wife’s doctor tells us now that the MDS/AML is gone, the thing to watch out for is infections.

Thanks for your help!

[Marsha]

Sparty,

They increased my predisone and I use another steriod mouth rinse called “Swish and Spit”. Working well for me. I finally reached weight over l00 lbs, so happy. Feeling better everyday. I see the doctor today, will get the results of BMB and Endoscopy they did while I was in the hospital. I feel very much in control again. I can really relate to what your wife is going thru. I had it so bad I could take a sterile guaze and scope that mucous right out of my mouth. I will say prayers that things start looking up for both of us.

God Bless, Marsha

[sparty517]

Thanks so much for the help. I have passed the information on to her and she is going to check with her doctor and pharmacist to see what they can do. We both pray a lot these days, and everyone who has or is dealing with this disease is included. Good luck!

[John in GR]

The problems Marsha discusses are some of the serious problems associated w SCT or BMT. While I have no issue whatsoever with people who choose this or any other treatment, for me BMT or SCT will be the last, not the first resort.

I was advised by a respected hema at U of Michigan that I had statistically one year to live unless I submitted to a SCT. I declined because my research showed that statistically there is no benefit longevity wise to doing a SCT. If I had only one year, I preferred to not be sick the whole time. You will be very sick, and the treatment could kill you.

That conversation w the hemadoc occurred in 2001. If I die tomorrow, I will be satisfied w my decision. I’ve had 4+ really good years except for one month dealing with Sweet’s syndrome. My approach is nutritional and alternative. So far God has seen fit to bless it.

SCT is currently said to be the only cure for MDS. Some have gone through that door and enjoyed a cure. I cheer with them. Unfortunately, the success stories are greatly outweighed by the tales of those who have fallen. Sometimes, their demise was hastened by the effects of the treatment.

My purpose is not to frighten but to encourage people to carefully examine SCT and other treatment options. Do not believe the doctor who offers SCT as your only chance for extended life.

Even if you become transfusion dependent, the biggest complication from multiple transfusions which is iron overload might be able to be reasonably controlled by Exjade if it’s as good as reported.

In any case, regardless of the choice of treatment options, I absolutely hope for the best for each person, even you Tah.

John

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