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Jimbob
MemberIt’s been a few years for me but when my level was low, my doctor started me on 4000 IU/day but changed it to 50,000 twice a week as a therapeutic level. It made a major difference and no longer required.
btw, I will be celebrating my 5th anniversary of SCT this Sunday.
MemberButch, I haven’t been posting for a while but all of the junk that has been getting through must be driving everyone who needs this site crazy. Is it possible to only allow people to post after they have had their email verified with return key or something that would then allow them to post. Jim
October 10, 2008 at 6:11 pm in reply to: I need a BMT to live but have no insurance. Do I just curl up die? #21439MemberRoger,
I sent an email to your gmail account but no response. did you get it? and how are you doing?MemberI chose not to use exjade because of the possible negative side effects. I had received somewhere between 80 to 100 packed red blood cell transfusions in less than a year around the time I had my SCT. I have been transfusion independent for for over three years now. I have been using therapeutic phlebotomy for the last year at the rate of 2 pints every month. My ferritin level is now almost normal. Unfortunately, this method does not work if you are transfusion dependent.
JimMemberNeil,
I glad that you are able to able to recover from all these health problems. I think most people would have been worn-out by now but you seem to keep more and more persistent in beating whatever set-backs happen to you. Might have to call you Job. I pray that it is now time for the good to befall you.
JimMemberLori and Grant,
Watch and wait is not a bad idea for CMML. It can “smolder” for a very long time, as long as the patient takes care not to over-stress the body.
While waiting, I would recommend that Grant – or any other person with disease – do what he can to help his body get as strong as possible. One way to do so would be to work with doctors in alternative or complimentary medical fields who have had successful experience in treating patients with CMML.
I was fortunate to find a naturapathic physician who is also an acupuncturist and one of the founders of the Oregon College of Oriental Medicine. She used various forms of treatment but started me out with a detox diet and then a restricted diet to give my body the nutrition it needs with as few negative input as possible. If you put garbage in, the body cannot perform that way it is meant to. Treatment is different for different people so I would suggest you consider checking this out for yourself.
Since Grant is young and otherwise healthy, he has a very good chance of recovery. While waiting, watching and, hopefully getting his system in better shape, I would still suggest he look for a donor, so that one will be available immediately if that becomes a necessity.
JimMemberI had over 80 transfusions in less than 3 months just before my SCT mostly due to accidentally cut ateries in my upper sinus area. It did not seem to make any difference on the decision to go with the transplant. It did, of course affect the amount of iron overload, though.
JimMemberHappy 4th re-Birthday to Billy. Thank you, Bill, for sharing his story with us for the past 5+ years. You both have been great inspirations for many.
My anniversary is 25 days away and I do know it was a rebirth. We would not still be here if not for the SCT. Thank God for donors! And the skill of the doctors and other healthcare providers, too.
JimMemberI had another bloodletting on 2/13/2007. The doctor just called and said that my serum ferritin level is now done to 2417. At the rate it is decreasing, I may be in the normal range by May.
MemberKatie,
You are an incredibly strong and wonderful person. You have been a great advocate for you father. I am sorry for your loss but you know that he is now at peace, happy and whole, and surely would want for you to remember him at his best. May God comfort you.
JimMemberMarlene,
They told me that a pint is about 475 ml and they take 2 pints once a month. At first, I got very tired for a couple of days. Last couple of times, though, it didn’t even bother me. I do drink a LOT of water everyday and supplement it with Smart Water the day of and before the phlebotomies. Again, this method is usually not possible for anyone dependent upon transfusions or with lot HGB. I thank God everyday that I have gotten this far.
JimMemberThanks to chemo and all of the drugs after SCT, my liver was in poor shape and I did not want to risk Exajade to reduce my iron overload. After more than 80 packed RBC transfusions, my serum ferritin level was over 5400. I haven’t needed any transfusions in over three years. Instead I have been able to take the opposite route; I have been doing therapeutic phlebotomy (bloodletting). They take two pints every month and after four months I am down to 3500. Of course, I would not be able to do bloodletting if I still needed transfusions.
JimMemberInteresting, at OHSU BMT clinic they gave out a sheet listing what was allowed and what should be avoided. Yogurt was specifically listed as ALWAYS okay. Many fruits that have non-smooth skin (like oranges) were not even to be touched by a patient. They are to be washed and then peeled by someone else. Other fruit, like raspberries could only be eaten if cooked. Shell-fish was a no no throughout the 180 days after SCT. I will try to find the list or get a current copy.
JimMemberLike Jack said, we are all different and what happens to one may not happen to others – in the way the disease progresses or may be treated -but get all the information you can from current sources so you can make informed decisions. Without a doubt, most of the prognoses you get will be based on “old” info. Drop me an email or private message and I’ll try to provide resources and info from my experience.
JimMemberI am in a different situation than most of you as I have beaten CMML with a SCT 44 months ago. Before the transplant, though, I had over 80 transfusions of packed RBC. I had a feritin level of more than 6000 but the the doctors said it would go down on its own. Three months ago it was still 5400. With the advice of several doctors, I decided to do therapeutic phlebotomy instead. Third time, so far, taking two pints of blood out every month. We’ll see what happens.
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