hello Susan;I have had high Ferritin counts for years, It was up to over 8000, a few months ago, I was on Desferal which I would mix in the morning and use a pump which I carried around all day. Then because of bruising by injecting the needle, my Hemo doc tried me on Xjade which is a pill you put into water and drink. It made me sick. Other people seem to get along with it but it did not like me.I now go to the hospital three times a week, Tue-Fri-Sun. On Tues I get a IV bag of desferal and bag of platelets. On Fri I get a bag of Desferal, then a bag of Platelets, then a bag of Red Cells. Sun I have my picc line cleaned and renewed, then I get a bag of desferalThis has dropped my Ferritin count to 4000 will get new reading March. So if your having trouble with DESFERAL then asked your doctors about XJADE Skip Duffie, long time survivor of CML.... From: 'educatorsusan' via CMLHope <cmlhope@googlegroups.com> To: cmlhope@googlegroups.com Sent: Wednesday, February 18, 2015 9:45 AM Subject: [CMLHope] Re: Just checking in 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 CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com 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 cmlhope+unsubscr...@googlegroups.com. 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. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com 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 cmlhope+unsubscr...@googlegroups.com. For more options, visit https://groups.google.com/d/optout.
