Hi Suzieq, Hopefully soon. but it will come eventually, and I thank you for the 18's to everyone. Lately I have noticed more and more people on this site have been also using it.
As far as the Desferal, I guess that it wasn't around when I had my bone marrow transplant and receiving those 93 blood transfusions. Besides since I had very little hemoglobin or red cells it probably didn't make too much of difference. 18's and hugs [?] Marty On Wed, Feb 18, 2015 at 8:45 AM, 'educatorsusan' via CMLHope < [email protected]> wrote: > I am not used to this new google format. So, I am going to answer a few > things. > > First of all, if you are getting transfusions (more than 10) you need to > receive Desferal which is an iron chelator. If you do not, your iron > counts were be sky high. I know this from personal experience. My > ferritin level is finally in the normal range after 10 years as of this > past Wednesday!!! YEAH!! There is a newer chelator but Oregon (Dr. > Druker and his own hematologist) decided to leave me alone because I had a > reaction to the Desferal...I have a reaction to everything it seems. > Desferal took the zinc out of my body and well and I could not bend my > hands, etc. and was in some amount of pain. > > No matter how much iron rich foods you eat, this will not help you and it > will not hurt you. The type of hemoglobin you are not manufacturing DOES > NOT react to iron rich foods...another myth that Dr. Druker and my own > hematologist locally dispelled. I do not understand the total logic but > they are different animals in the system. > > Congratulations, Marty, on finally receiving a kidney transplant soon!!! > > In Marty's honor, 18's to everyone! > > Hope my two cents worth is useful! > > I wanted to post to everyone and am not sure I did. > > I usually have a postscript after my name giving you my LONG history on > Gleevec bu cannot find it right now. If you search my name on this "blog", > you'll find it...I just do not know how to use this "new" google yet... > > Hugs, > Susan Rosenthal > Miami, Florida > > On Wednesday, February 11, 2015 at 9:44:45 AM UTC-5, Suzieq wrote: >> >> Hello CML Survivors: >> >> It's been some time since I stopped by and left word. Thought that I >> should check on ya'll.....sorry to hear of the troubles you are having >> Marty. I do hope you receive your Kidney and all goes well. Jeanie...I >> see you are having a few problems once again and I hope that the doctors >> can get you back on track. So many newer drugs now than when we all started >> our journey with Gleevec. >> >> My last doctor visit was December 31st. Had really good blood work >> results and all looked good until I got my BCR-ABL results back. They did >> not tell me that they were going to use a new lab.....instead of sending it >> to where they always did, they (Sitemen Cancer Center) are now doing the >> testing in-house. I knew that the results had come back a lot quicker. >> Nothing like what I was use to, no graph, nothing. Just said >> *"Positive"* &* 0.02%.* I fell apart. Course this was around 7:00 at >> night when I had picked up the mail after going to the movies. My husband >> was out of town. The next morning (Friday), I called and left a message >> for the doctor to call me back. It was around 4 that afternoon when the NP >> called me back and we had a nice chat. That's when she told me that "we >> really can't go by these results since we are using a new lab. And, it >> was a *"more sensitive"* test." I asked her if I should up my dosage >> (remember I have gone from 400mgs. down to 200, & now to 100mgs. since I've >> been *"non-detected"* since *July '09.* She told me no, to stay doing >> what I've always done and that if I wanted to come back in earlier than the >> ever six months as normally, I could. So, we set that up where I will go >> back next month (March) the 25th and be retested. >> >> I guess I was so use to seeing that "non-detected" over a long period of >> time, that it gives one that false belief that we are in total remission >> and the CML is gone. It's like my husband & I discussed......a few of the >> leukemic cells are still there all along, just do not show up unless they >> use deeper tests. This positive test brought me back to reality and >> reminded me exactly what Dr. Khoury told me in the beginning of my journey, >> "There is no cure for CML yet." >> >> So, there's my story. I guess we will always be in this fight for the >> rest of our lives. I'm hoping to continue on just the 100mgs., but if I >> need to go back to the higher dosage, I will. >> >> Keep Looking Up, >> Suzieq >> > -- > -- > [CMLHope] > A support group of http://cmlhope.com > ------------------------------------------------- > > You received this message because you are subscribed to the Google Groups > "CMLHope" group. > To post to this group, send email to [email protected] > To unsubscribe from this group, send email to > [email protected] > For more options, visit this group at > http://groups.google.com/group/CMLHope > --- > You received this message because you are subscribed to the Google Groups > "CMLHope" group. > To unsubscribe from this group and stop receiving emails from it, send an > email to [email protected]. > For more options, visit https://groups.google.com/d/optout. > -- -- [CMLHope] A support group of http://cmlhope.com ------------------------------------------------- You received this message because you are subscribed to the Google Groups "CMLHope" group. 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