[bhanson]

Hi, Speaking of nutrition, has anyone had experience with Vitamin K2? Is is a good idea for MDS patients. I see some experiments done with it but no definitive conclusions? The pineapple and sesame seeds and noni are going well. We see the naturepath this week and are hoping for a little improvement in counts. Thanks to you all for all the great information and advice. bhanson

[bhanson]

HI tsj, My husband has MDS aplastic anemia and has recently had thyroid cancer which was removed with radiation. He was a “downwinder” of Hanford Nuclear Reactor during the 1940’s. His counts have been going down for a couple of decades, and we are fairly competent that his diseases were caused by the radiation releases from Hanford. MDS is one of the diseases listed by the Downwinder Association. So, MDS could be in families if they lived in the general area of it other and were exposed to the same chemicals and radiation. There is so much that we don’t know that we are exposed to. It has to be devastating to have to go through this twice. We are thinking of you. You have a good attitude. Do all you can one day at a time. The people on this forum have helped us immensely. Regards, bhanson

[bhanson]

Hi Caroline, Noni juice is already usually mixed with juices such as grape and pineapple. It would be completely undetectable to add a TBS. of Noni juice to other juices twice a day. My husband is also hard to get to do some of these things. I read the stories to him posted on this site, especially the ones with good results on weird things. He is then much more willing, but it is still hard. If he gets as much as a headache he blames it on the new “stuff.” But thanks to you all we are making progress. Your doctors sound wonderful. If I want my husband to take something I feel really important, I ask his doctor to recommend it to him, and then it is not coming from me. Your Dad obviously needs the vitamins and minerals contained in these natural foods, so I don’t see why the doctors fight us so much. Wishing you and your Dad all the best, and admire you for taking such good care of him, Bonnie

[bhanson]

Thanks, Jack. I was looking at this company also.We will try it. The juice is usually mixed with other juices so that it is easier to take, but I have heard good things about it. My husband would be more faithful swallowing a pill! Will post results. We are going to the naturepath in a couple of weeks in Seattle for the first time. My husband was turned down at Fred Hutchinson in Seattle for a nonmyeloblative BMT even thouth he has a brother as a perfect match. Thanks again. Bonnie

[bhanson]

Jack, Hi, how many Noni capsules do you take and is the juice the same? My husband’s platelets are going down and we will try the Noni along with the pineapple and sesame. I am so happy for all the suggestions for help. The doctor says, “You’ve got to die of something! Go home and wait.” I’d rather not know what I’m going to die of and I certainly don’t want my husband to get too sick to treat, which seems to be the method of choice for MDS here. Thanks again, Bonnie

[bhanson]

Patti, Thanks for the info on your MIL. It is so good to find something that works. I sent for some of the black sesame seeds and some raw black sesame tahini. We already got a pineapple and ate it tonight. Again, thanks so much. Bonnie

[bhanson]

Dear Naomi, Thanks for the heads up. I guess the revlimid is now supposed to be on track for Jan. 2006. I am so glad that it can help you, and perhaps they will soon get it okayed for more of us. Thanks again. bhanson

[bhanson]

Hi, I just registered as an MDS patient and greatly appreciate the chance to hear everyones experiences and talk to others who have the same disease. I am interested in doing everything I can to get better as we all are. We are trying some different things, but I am especially interested in the pineapple and black sesame seeds. Do you take the seeds whole with the hulls or is it best to crush or grind them? Also, I read where we cannot digest the hulls so would it be best to buy raw hulled seeds? I appreciate your input. Thanks so much, bhanson

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