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chuckk333
MemberDear g-.
What are the details of your husband’s chromo abnormalities?MemberArlene,
Hope for the best results from you trial. your trial. Is the drug that was in the trial called Campath?
Memberg-masews—Thanks for your quick reply. It sounds that your husband and I are very much alike in our Dx and our experience (except for age, of course). My Hema doc says that they look for trends rather than specific counts. The fact that my recent platelets have been plunging is quite disturbing. Since my DX and for a year before, the pltlts have varied between 100 and 60 until Aug. I too have had no symptoms, except I bruise pretty easily. I have remained active, but one hema doc said that I should not snow ski with counts lower than 50. We’ll see, as that is a big part of my and my wife’s life. We are about to return to CO from our CA home in a few weeks, and I will see my CO hema doc shortly after that. (Dr. Fred Kolhouse of Univ of Colo.) Where are you in CO?,
Chuck
Who is your hema doc?
MemberAnyone that has been on the forum knows how much that Neil’s help, information and advice has meant to all of us. He will be truly missed. I hope that his family is aware how much he has meant to all of us.
MemberIra,
I’m sure that you have mentioned it before, but now that you’ve been getting treatments for a while, What side effects did you experience??MemberHave you tried pineapple to try to increase his platelets. I took some suggestions made here to try pineapple. I juice 1/2 pineapple every day and my platelets have increased. I guess it doesn’t work for e ery one, but my platelets have gone from 63 thousand to over 90K. How old is he?
MemberMary,
I’ve had 2 BMB and neither one of them was any worse than a mild session with the dentist. I believe that the reason it was not painful was that in both cases, the used plenty of lidocaine in the muscle and on the bone surface and waited until it had taken effect. it would be good to ask that it be done in this fashion.
MemberWow, thoe platelets counts are high!! Usually people don’t add a K after their count numbers, but 88 means 88,000.
MemberShari,
Requests for prayers here gets a huge response, even though not everyone who prays will post that they are doing so. I will pray for your dad as I do for so many on the forum.
Chuck
MemberI, for one feel that getting other opinions from experts in MDS is a very good thing, especially since you are not planning treatment. I have been in the “watch & see” since my first dx in May 06. I too feel good, and with the blessing of the expert 2nd & 3rd opinions I have received. They say just watch your counts every 2-3 mo. and as long as they are holding, just live healthy and continue with your life.
MemberBetty,
I have had low platelets, in the 50-60K range. I started trying taking 1/2 fresh pineapple, juiced in a juice extractor each day, and my platelets have now been hovering about 80K. It might be worth a try.Chuck
MemberWhere do you live, Helene? Is your doc an experienced MDS doc? What Chromosome situation?
I encourage you to go to the City of Hope or UCLA med school to find out what is going on. At UCLA I saw Dr. Micheal Rosove.
MemberWhat treatments did Chuck get from Dr. RAza in Chiggo?
MemberHelene,
On my own I asked for an appointment with a Hemo/Onc at the the City of Hope telling them of my MDS and sending them a a package of my blood history and the reports from my BMB’s. They assigned me to Dr. Nakamura. They went over my history and asked for the slides from the BMB for their own analysis. After the first appointment with him he gave me his opinion and said that each week the whole department gets together to discuss new patients and come up with a consensus of recommendations. I have followed their recomendation that, since I have no symptoms and seem in good general health, I should continue to monitor my counts and not begin any treatments until and unless I had drops in my counts or start to have problems with bleeding or infections. Sounded good to me.
What and when was your diagnosis? counts?, location, age, etc. Go to “My profile” and post these facts in the “signature” sectioon.
Chuck
MemberIra
Please include in your update, what is your current description of your experienced side effect. Thanks, Chuck
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