GVHD crisis

[patti]

John,

Three cheers, brother. We felt the same way. Although transplant was not an option for us, when we looked at the drugs they wanted to offer it was obvious that mom would live healthier, happier and better just doing the natural. And the decision we made has been blessed as well. If I lose mom this week I know we had six more months with her then we would have if I’d listened to her quack of a doctor. If other people want to go through the medical stuff, so be it, but don’t discourage those who want to go natural from doing so. They may just live a little longer because of it.

Blessings,

patti

[Marsha]

Patti and John,

Don’t make me feel bad for the choice I made either, to each his own. I know not what either of you went thru so I will not judge. I have had some hard times but I never said anything about discouraging anyone from doing they feel is right. It was my choice too, as of now I’m fully grafted and no sign of disease. I’m making my own cells. The bumps that are happening could happen regardless of which way you go.

Marsha

[Suzanne]

So true, Marsha, we are all so different and react so differently that there are no right answers at least until they learn more about this disease or these diseases. We all have to do what we feel is right for ourselves and we need to support each other no matter what the individual decision.The great thing about the forum is the exposure to information about so many different directions people are trying.

[cthomas555]

Marsha, as if you don’t have enough stuff requiring your energy and efforts I am sadden that you also had to deal with criticism from members of this list. May I apologize for their insensitivity and commend you for your mature response. You are my hero.

Chris

[patti]

Marsha,

For the record, my comments were not directed at you. Perhaps next time I should put a name to it for clarity. I certainly don’t think doing things the “medical” way is wrong. I just hear a lot of “better check with your doctor” when it comes to the natural stuff and I know from experience the doctors will tell you it’s not worth it. All I’m saying is they’re wrong and it is worth it. For those who transplants work – fantastic. For some, transplants aren’t an option, only drugs are.

Patti

[geebeebee]

Marsha, don’t think twice about the comments. Anyone who thinks there won’t be bumps, sometimes serious ones, with even a hugely successful SCT, doesn’t understand the procedure and risks involved.

Every situation is different. My Mom’s counts, because of the secondary MDS status, were going down about 15-20% every month and her blasts were rising a few percent every BMB — if she wanted any extended life, or a chance at it, she unfortunately had to choose the SCT. We’ve never had one second thought about it — I’m convinced that her life would have been even shorter without the SCT, with no hope of long-term survival.

I root equally for all with this disease, regardless of the path they choose. I think it is faulty logic to assume that everyone should undertake a similar method of dealing with it. Frankly, I just don’t believe any natural or unnatural methods would have taken Mom off the path she was careening down.

The brutal truth of the matter is that a transplant IS the only known cure for MDS (though I hope not for long), and for someone who is younger and/or someone who has no other options, it is something that must be strongly considered. For those who don’t fit in this category, it is not necessarily a choice to make. I guarantee that if Mom could have had even two good years of prognosis (with her age and situation), she probably wouldn’t have done the SCT. The fact is, she was heading downhill fast, and her choice was to have some hope of beating it.

Hang in there, Marsha; the big picture looks great, and the bumps, as you know, are standard practice. Please do keep in touch as to how you’re doing.

Greg

[KATHY1]

This is for all of you who have strong religious beliefs. You have all made the right decisions for you because it’s part of “God’s Plan”. He has the final say in how you respond to treatment. Or does he?

Whatever, everyone here is fighting the same battle so lets not bicker.

Kathy

[John in GR]

Excellent comments above. I hope my earlier statements are not being misinterpreted. I have great respect for the medical profession. One of my sons is a medical doctor trained at the U of Michigan. I am very proud of the work he does.

I maintain, however, that doctors generally are not schooled on issues of nutrition and alternative approaches. I think that will change down the road. I hope it will.

I thought I made it clear in my earlier post that I have no issues w anyone about their choices. I am assuming that people are making the best choice given the facts of the particular situation. The last thing I want to do is to make people feel bad for decisions already made. My only point is that people should educate themselves re the options that are out there so that the best possible choices are made.

I agree w Kathy1 that we should not bicker. In the context of always respecting each other, however, I do think we should welcome and respect different points of view. I believe that we all have sympathy and empathy for all who are touched by MDS. The scope of our collective experience, freely shared, allows us all to gain information and support we might not otherwise be exposed to. Thank you one and all. I wish each of you only the best.

John

[Marsha]

I am not a bickering person nor arguementative. I am dropping this forever. I am happy for everyone who has success with arresting this disease and/or curing it. Forgive me if I misinterrupted the posts but I will defend my decision to the end. Thank you all for the support and
God Bless, Marsha

[danz]

I haven’t seen much discussion on GVHD in these groups. I am 16 months post-BMT. I have chronic GVHD. It is attacking my liver. So, my doctors (my regular oncologist in counsel with Fred Hutchinson Research Center) have been using Prednisone to treat it. They are now tappering off the Prednisone, and are using Actigall to control what is going on in the liver. So far it’s working. In my annual review, they did not find GVHD anywhere except at my liver.

I hope yours is getting better.

[Sandy L]

Please share your nutritional and alternative Approach. Were you ever transfusion dependant?
When your hemogloblin goes does what can you do to raise the levels?

Thanks for your help

[Sandy L]

Please share your vitamin and nutritional alternatives with us. Can you also explain what SCT is? I agree with you that the BMT may not be the only way to go.

[John in GR]

Hi Sandy,

I assume your question re approach was directed to me. My approach is posted at http://www.geocities.com/marlakins/ . SCT stands for stem cell transplant.

In March 2005 I was hit with something called Sweet’s Syndrome which caused sores and drove down my blood values. I needed a round of prednisone to knock down the Sweets and restore my blood values. I did receive five units of blood. Recently, the Sweets started reasserting itself. This time we knew what to do, so it wasn’t near the problem–no further tx’s.

I am now looking for an alternative to the prednisone, as it can have some nasty side effects with extended use.

John

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