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Jack_dup1
MemberI received a letter today 2/4/2006 from my congressman stating that although he supports it, there have been no hearing held or scheduled on this measure. We need to push harder.
JackMemberPatti,
I agree with you. I’m 62, in decent shape, no organs affected as yet. My WBC is 45.8 and platelets are fairly stable, but low, so I’ll stay with the Noni capsules for now. I’ve taken them for a year now.
Thanks,
JackMemberThanks Patti,
I will have to think on this one a while, noni works out well for me because of my constant traveling, kind of hard to run a juicer in a motel room.
Thanks again,
JackMemberMy Platelets went from an ave. 100k to 80k then 72k over two months, I realize that they vary from month to month. Ive had two root canals in the last three months and still have a low grade infection in the gum which causes headaches and pain on the left side of my face up to the eye. I will be seeing a Dr. tomorrow about it. In my casethe platelet drop was suspecious and I wanted to eleminate any causes, I think the Ipbuprofin may be the culprit, I took it mainly to control the inflamation. As always, thanks for the response.
JackMemberHappy Birthday Marsha,
I remember when you first logged on, a lot has happened since then, you have come a long way. Congrads,
JackMemberMarylinda,
Click on the search tab and type in Irradiated blood, you will find a wealth of informations from past forum topics on the subject.
JackMemberI have been to several Dr. a received several different opinions. My local hemo/oncologist says start Vidaza now, my MDS specialist says do nothing now. I have a WBC of 40.8. The MDS guy says to wait until things progress or should I say digress futher. CMML is a little different, it is not considered by some as MDS, but a combination of MDS/MPD, which makes it harder to treat.
Still in state of confusion,
JackMemberShane,
I should have added that when I went to Rush in Apr 03 I was seen by Dr. Vengupal (Dr. Ven), he is a great guy, Ever since then I send him my counts every month and I can always count on a response from him. When I get advise from my local Hemo, which is not always the best, I write Dr. Ven and get his opinion. Three weeks ago I sent him my counts by E-mail, which I hadn’t done for a few months, and he called me ten minutes later. I said to my wife “is this guy bored”, what Dr. responds to an E-mail in ten minutes.
JackMemberI have been to Rush Cancer Center, they are a Center of Excellence in regards to MDS.
JackMemberPatti,
Thanks for responding, I take Noni capsules daily,so when I see the word death associated with them, it tends to get my attention.
Thanks,
JackMemberPatti,
In regards to the Noni capsules, that is a harsh fact to throw out without more info. A lot of people will instantly stop taking them. I don’t disagree with you, but would like more facts.
Thanks,
JackMemberSuzanne,
Thanks for sharing the goods news, especially during the holidays. It has been a tough road for you and this gives us all a little hope. Merry Christmas and continued success in the New Year.
JackMemberWe all react differently. For me, platelet count does affect bleeding. I do repair work on Toxic Gas analyzers and it is not abnormal to get small cuts and nicks which is normal for anyone who works with tools, I can usually tell if my platelets are low, just by how much I bleed from small scratches. Like Neil said, we are all different, my WBC is 41000 and I have no symptoms, someone else at that number could have a real problem. I have read that the main reason for juicing is to get the enzymes that are quickly destroyed by ambient air, some have even said that the type of juicer makes a difference, for instance, a centrifical juicer forces air into the pineapple which decreases the enzymes. It is hard to know what to believe, just because someone wrote it, does not make it fact. I have not heard of someone with MDS progressing to CMML, since CMML is in the MDS, MPD category.
JackMemberHi Neil,
I keep in contact with Dr. Venugopal, a Hemo at Ruch in Chicago. He looks at my counts every month, he is against treatment at this time. There are drugs like Vidaza that could lower the WBC, but, it also lowers the counts and mine are close to normal, I have never had a problem with RBC and my platlets range from the 80’s to 130k. He is afraid for lack of a better word, we might stir up the pot and not like the results. If I recall correctly, JimBob had a sudden increase of WBC to about 300. Mine is very gradual, and the % of Neutrophils, Lymphocytes, Monocytes, Baso’s and Eso’s stay in a consistant range. I will E-mail you a spreadsheet that you might find interesting. I’ve had no infections and heal quickly from cuts and bruises. I am mentally going through a hard time, I have been watching my counts since April of 2003, logging on the WEB site every day and following how everyone is doing, I know I’m reaching a point of no return, until then I try to live a normal life, stay upbeat and positive. It is hard sometimes when you see how your brothers and sisters on the forum are doing, my heart really goes out to them, Ive been lucky, if anyone with this disease can feel lucky. I’ll get off the ‘poor me’ wagon now. I’ve always respected your opinion Neil.
JackMemberMy WBC’s are at 40.8, they have been climbing at a steady rate for almost 3 years, each month getting a little higher. I feel fine. Still traveling for work every other week. The nurse explained that the P meant to notify the Doctor, I was just looking at the humor in the Terminology, I would hope my medical care givers would not panic.
My local Hemo said ‘Jack, this is getting serious and you need treatment, it’s life threating’, I asked what treatment he would recommend? He said “I don’t have any, haven’t you found something”. Now you have to see the humor it that.
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