[kristyk]

John
Awsome website. I thoroughly enjoyed. Bravo to Marla! Thanks Kristy

[kristyk]

Patti
We have been told 20% BMB=AML. In my Mom’s case, to qualify for decitibine study, either BMB need to be at 20% and or blood blast need to be at 20%. The study is for AML, so we are waiting to get worse!?? My Mom’s doc, who is clinical director of the cancer center.. keeps telling me that MDS/AML in her case is semantic…he insists anyway we look at this it is or will be AML. He told me last visit that the old MDS classifications were outdated and not used anymore. ( this when i ask him to please tell us what her classification is RAEB-T etc..??) He still only answers with AML!! She was at 18% bmb and 11% blood on 6-13-05. blood % had gone down 3 since her May visit ( ggod?). this just the most frustrating disease! Good Luck. Kristy

[kristyk]

Andrzej

Your Dad is a pioneer! Good Luck and keep us posted!

Kristy

[kristyk]

patti
thanks for such good advise, I will follow! At last consult with her big wig Doc..the one who will be primary once (if?) she starts med clinical study, didn’t exactly pooh pooh question about diet but did say “it won’t help”. While he supported good nutrition he essentially was saying between the lines ” why have mom restrict her life anymore than necessary when her time may be limited”. While I do support quality of life issues and choices, I do believe nutrition is the missing link in most medical treatment issues. Anyway, I think I could get my Mom through the door for consult with nutritionist, I’m not sure how willing she would be to make significant diet changes. But hey it is worth a shot, at least she’d be making informed decision. I’ll keep you posted. Thanks. Kristy

[kristyk]

Jimbob
thanks for reply..do you coordinate this with your hemo/oncologist? I am wondering how to find naturapathic in St. Louis..I will research. Boy it sure would be great if cancer centers had this info available to patients. Some other holistic tips would be appreciated as well. Referrals would be great, but instead I will go to the phone book and take a stab! Thanks again for tip.
Kristy

[kristyk]

I have been reviewing these posts and I am in the dark….How did you all learn about good nutrients etc specific to the MDS disease. Would you suggest any readings? We have been reading many books of late on diet, but nothing that can help us put it into perspective with the MDS. Any Ideas? We did ask my mom’s doctor about referal to nutritioninst but he sort of minimized this and brushed on. Any ideas? Thanks all Kristy

[kristyk]

Greg. I am thinking of you and your family… and your Mom…( aren’t Moms just the best ) peace to you all and good luck. Kristy

[kristyk]

YEAAAAA! What an awsome post to read. You give me hope Suzanne…..I don’t know you, but I can tell you I am sitting in my office at my desk and about to float to the roof I am so happy for you!!!! Kristy

[kristyk]

Greg
I am thinking of you and your family. Such bravery. My hope is that your mother maintains her sense of peace about her decision and can enjoy her family and time. As for you…hang on, hang in and hang tight. The journey continues.
peace
Kristy

[kristyk]

you can add our names

Kristy Kauffman Rocky Mount, Missouri
Carole Kauffman Ofallon, Missouri

good luck

[kristyk]

thanks to all who replied. To answer Neil’s question, her count was 31000 yesterday. I want to say that is been high since Dx in Feb, but had been in the teens until last few weeks, then 22, 24 and now 31000. I think something is going on becasue her blood blast went from 4 on 4/18 to 24 on 5-23. Gosh I think I have been throwing out the wrong # in last few posts( I was saying blood blast was 15)But it is 24. First BMB 2-25-05 was 10, 5-23-05 it was 18. Again the majic # to particiapte in this trial is 20. HGB is at 8.8 today..last transfusion was 4-20-05 and she has gone from 10.5 post tx slowly down to where we are at today . They transfuse when she is at 8, so I suspect she will be getting one in a few weeks. As for bone marrow blasts…hate to hope for increase, but 20 is when she can start decitibne. I imagine she is there or close. What concerns me is that doc said if wbc gets to 50000 she can’t do the study.
well, thanks to all…I’ll let you know. Hope you and or your loved ones are hanging tough! Kristy

[kristyk]

Barb
I’m new to the forum. Mom dx 2/05…I was going back through old posts to get all the good info I have just learned this site provides. Read many of your old posts..feel like i kind of know you. So sorry for your loss…you all fought this thing with such courage. You are an inspiration. In reading your early posts i so identify with your frustrations. I’ve learned a great deal from your messages….thank you and thank Ron.

[kristyk]

Karen
Such great news about your Dad. I noticed some weeks ago you posted question about decitibne. Is your Dad’s doc still suggesting he try this in combo with valproic acid? I’m fairly sure my Mom will be starting the drug( decitibine) within in the next few months and am starving to hear more about it. You know, I’m so new to this, but I am interested to learn that valproic acid is treatment potential for MDS. I’m very familiar with the drug in terms of its indication for psychiatric treatment as a mood stabilizer( I am assuming they are one in the same??) as that is what I do for a living…hmmm I will certainly be checking into this further..I will be hoping the best for your Dad…and would love to know what happened with the decitibine proposal you all had..did it go any further? I just keep learning so much from you all! And Greg..Is your mom being treated in KC? If so it would be the second person I’ve heard of in KC who had transplant that was over age 60…. If so I would love to know the facility name. Thanks. Hope for all. Kristy

[kristyk]

May I ask how you or your loved ones have been doing in regards to quality of life..energy level, travel, worry about catching something? Also for those who have reached remission status..do you find that the fatigue subsides and you feel normal(whatever that means!) I have gotten reputation for being the Wet Wipe Lady when I am at my mother’s house…enter at your own risk as everyone gets a good scrub! I’m obsessive about keepng surfaces wiped down too. Am I over reacting? When I ask the doctor what we need to worry about right now they blanket statement “infection and bleeding” but don’t seem to clarify exactly what that means. It is so broad..practically speaking what have you all experienced? Thanks for all of the wonderful support and words of encouragement. Bravo to all of you and your courage. I DO beleive in angels!
Kristy

[kristyk]

thanks to Marsha, Terri and Suzanne for responding. I must admit that I do not know my way around message board protocol and am not sure how to respond to those who respond! I just click here and there and see where this reply goes. I could use a tutorial on how this board works and what all of the icons mean! At any rate, I’m gratful to know that you are out there, and don’t feel so alone anymore. I’m humbled. I’m learning great lessons in patience! I remain hopeful always as I walk with my mother through this journey. I’ll keep posting, and hope that perhaps if she does participate in this clinical study for dectibine, that we can share her story and experience for those who will come in the future. Thanks Thanks Thanks! Kristy

[Author]

Posts