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Zoe
MemberBob,
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
MemberI think they mean over on Marrow Forums http://forums.marrowforums.org/
If you scroll down the forum page you will see a category labled "Transplants" There are people there who are going through all stages of the transplant process. Keep us posted and God bless.Zoe
MemberGlad to hear your counts are going up! I recall as a kid having chicken pox in my mouth, miserable. Enjoy your water, it will come soon with your rising counts.
Zoe
MemberI could never figure out why they have to wake you for all those vitals. I mean they have machines hooked up measuring everything, can’t they just look at that? Must mean they like you and can’t get enough of your great personality. :^) Hospitals are not good places for rest.
Seriously, glad to hear your counts are good. You are doing great!
MemberSimplistic, what wonderful news! Yes, praise God for every good gift is from Him.
Zoe
MemberWishing you the best. Your age should help you through it. Words always sound so trite in situations like this. Nonetheless, please know I will pray for you. Love your attitude, keep up the fight!
Zoe
MemberWhat wonderful numbers!!! I am happy it is working for you.
Zoe
MemberSimplistic, First, just breathe. Then try to take one step at a time. I know, easier said than done, but worry and fear will not add one positive thing to your life.
Do you know what type of MDS you have? Who is you Doctor? How are you feeling physically? Are your counts changing? Is that why the second biopsy? Any info you can share will help people answer your questions. This forum has a great group of supportive and knowledgeable people.
I am glad you found us.
Zoe
MemberWhat a blow that must have been, are you still reeling? I am sure you really needed that night back home, I am glad you took it for yourself. Take care of yourself. Pamper yourself, let your wife support you, she needs that as much as you need the support. Keep us posted. You are young, that will help your recovery during and after your transplant.
Zoe
MemberEsther, I am so sorry to hear of Cathie’s passing. She was a wonderful young lady. I know she had a time of it for a while on this board, I wish that wasn’t so. I hope you don’t feel offended but I pray the peace of God fills your family with comfort during this difficult time. I know you loved her so much. I pray that your memories will sustain you with joy for the precious time you had with her. I just put on my Bravery bracelet for her and will wear it 40 days in her memory. It is a small thing I do to honor those who lost their fight with blood cancers.
Zoe
MemberThe best piece of advice I can give is relax. Get the facts and get your questions answered as Bob suggested. Then live life. Some folks are on watch and wait for a very long time before symptoms become severe enough to do anything. Don’t make life about MDS, there are too many good things going on.
Do you know if he has any chromosome abnormalities? That may tell you something about what to expect in the future. No guarentees, but are there really any in life? But some abnormalities tend to move slower than others. I have 5q- which is a low risk MDS. I was diagnosed in 06. Other than Aranesp every 2 weeks I don’t need any treatment at this point. My whites and platlets are fine. My hgb runs around 9-10. Shoots, I even had an 11 one week! Blew my mind, and my nurse’s too. She wondered if I was drinking enough or if I was dehydrated. A friend said he thought she meant I should drink water not Jack Daniels :*) Just joking, I have not drank Jack for 20 years or so.
Keep life in balance. As Bob said, lots of folks here who can answer questions for you.
Zoe
MemberKenneth,
Yeah!!! What great news! I am also encouraged by the doctors listening to your renegade views. Hopefully they wll "allow" you to continue. Say hello to the Captain for me. I haven’t danced with him for a long time, I go for the green with Jose (as in Cuervo).
MemberInformer,
Please understand where we are coming from. You come on here sharing good information, but then you tell us to follow you on e-bay so we can buy a product from you. You didn’t share the articles you read (although you shared a snippet in your last post, you didn’t site it). It feels like spamming because in your first post you are marketing. Just a suggestion, but it would come across better if you just shared your experience, took some time to get to know us, and let us get to know you, then maybe down the road shared you might be selling it also. Please make sure you also share the effect IP6 has on platelets, as many MDS patients have problems with that.
Glad to hear that it helped your father.
Zoe
MemberSounds that way to me too. I am still going to check out the IP6 by googling. http://jn.nutrition.org/cgi/content/full/133/11/3778S
First site I found. It does say it seems to have some effect: "The most consistent and best anticancer results were obtained from the combination of IP6 plus inositol. In addition to reducing cell proliferation, IP6 increases differentiation of malignant cells, often resulting in a reversion to normal phenotype." It encourages phase I and II clinical trials in humans. It is from the Journal of Nutrition.
Anyway, I am going to poke around a bit. Can’t hurt. Maybe the moderators should check out the spam angle though, especially with a moniker like "informer."
Zoe
MemberKenneth,
I don’t know if this site has the info you need, but it has a lot of genetic info on cytogenics in oncology and hematology. It is fun to look around there. I haven’t done it for a while though.
http://atlasgeneticsoncology.org/
Zoe -
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