Guest guest Posted February 9, 2011 Report Share Posted February 9, 2011 Great information. Thanks for sharing. Sent via mobile phone. Please excuse brevity and grammar. Tom Ratzlaff Centennial insurance Agency [ ] Re: Iron deficiency Hi , If your RBC is at or near 11, you're most likely experiencing iron OVERLOAD not anemia. Perhaps you meant to say that your Hgb is near 11, not your RBC? I'm glad that you're experiencing a great QOL while you're on drug holiday. I assume that you're aware of the risks and have decided to take your chances but for anyone out there who doesn't know, I would like to point out that drug holidays are a very serious matter. The longer the CML is not being controlled with drugs, the greater the chance is that a mutation can develop which could complicate further drug therapy. , I'm not sure how you arrived at the 1.0 threshold as a factor for going back on treatment but if you're referring to a PCR value of 1.0, that would indicate a full blown cytogenetic relapse at which point developing a mutation would be at it's prime possibility. The best chance we have of remaining under control is if we keep our cytogenetics at zero. Our molecular scores aren't as important as cytogenetics and I honestly don't know any doctor who would wait for a cytogenetic relapse before starting treatment. If Gleevec is causing anyone to suffer a detrimental QOL (quality of life), the top doctors all suggest trying a newer drug rather than risking disease progression. And on a final note, our WBC is not really a good indication of our disease status. As we've seen with others, someone could have fully active CML and even be in bl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2011 Report Share Posted February 9, 2011 Tracey, I would have to agree that is great info to be aware of!!!!  ~Karine~ ________________________________ From: " Archer591@... " <archer591@...> Sent: Wed, February 9, 2011 8:29:08 AM Subject: Re: [ ] Re: Iron deficiency  Great information. Thanks for sharing. Sent via mobile phone. Please excuse brevity and grammar. Tom Ratzlaff Centennial insurance Agency [ ] Re: Iron deficiency Hi , If your RBC is at or near 11, you're most likely experiencing iron OVERLOAD not anemia. Perhaps you meant to say that your Hgb is near 11, not your RBC? I'm glad that you're experiencing a great QOL while you're on drug holiday. I assume that you're aware of the risks and have decided to take your chances but for anyone out there who doesn't know, I would like to point out that drug holidays are a very serious matter. The longer the CML is not being controlled with drugs, the greater the chance is that a mutation can develop which could complicate further drug therapy. , I'm not sure how you arrived at the 1.0 threshold as a factor for going back on treatment but if you're referring to a PCR value of 1.0, that would indicate a full blown cytogenetic relapse at which point developing a mutation would be at it's prime possibility. The best chance we have of remaining under control is if we keep our cytogenetics at zero. Our molecular scores aren't as important as cytogenetics and I honestly don't know any doctor who would wait for a cytogenetic relapse before starting treatment. If Gleevec is causing anyone to suffer a detrimental QOL (quality of life), the top doctors all suggest trying a newer drug rather than risking disease progression. And on a final note, our WBC is not really a good indication of our disease status. As we've seen with others, someone could have fully active CML and even be in bl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2011 Report Share Posted February 10, 2011 Thanks . Due to old age and chemicals (prescription type), lack of oxgen to the brain from poor circulation I get things confused at times. Yes my HGB is 11.1 but just before the transfusions it was dropping below 8 and transfusion level is 7.9 for my ONC and I was getting CBCs every week. Transfusions increased counts to above 11 and then started dropping again. H. > > > > > > I'm curious to know if anyone is experiencing otherwise unexplained iron > > > loss. I'm a 66 year old male with no known bleeding and have been > > > experiencing iron deficiency anemia since beginning Gleevec in 2003. It's > > > even been noticed on my BMB. > > > > > > Troxel > > > dx 2/2003 (eight years this Thursday) > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2011 Report Share Posted February 10, 2011 I am glad you are responding to the iron pills. In my case I developed severe diarea and could not tolerate the large amount that would maintain my counts. H. > > > > > > I'm curious to know if anyone is experiencing otherwise unexplained iron > > > loss. I'm a 66 year old male with no known bleeding and have been > > > experiencing iron deficiency anemia since beginning Gleevec in 2003. It's > > > even been noticed on my BMB. > > > > > > Troxel > > > dx 2/2003 (eight years this Thursday) > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2011 Report Share Posted February 10, 2011 Hello could you explain for me, what your Hgb counts mean, I think I understand, but I have never been able to figure out Iron and Ferrtin counts. Due to my many Hgb infusions my ferritin, is as of last week, 3003. They infuse me with desferol every infusion of Hgb now. It dropped my ferritin count down from over 6000 down, as I said to 3003 I understand this is still very high, I think the count should be around 50 for men or is that women, and thirty for the other sex. I was on Exjade but that made me very ill. I understand or think I do that Hgb should be around 150,000 so if mine drops below 80,000 I get infused. which is about once a week. Platelets are a different matter as I have no bone marrow left (my Plt count always very very low)  I hope things start to turn around , getting infused twice weekly is a pain in the you know where.  SkipD  ________________________________ From: <dickie_64012@...> Sent: Thu, February 10, 2011 12:41:15 AM Subject: [ ] Re: Iron deficiency  Thanks . Due to old age and chemicals (prescription type), lack of oxgen to the brain from poor circulation I get things confused at times. Yes my HGB is 11.1 but just before the transfusions it was dropping below 8 and transfusion level is 7.9 for my ONC and I was getting CBCs every week. Transfusions increased counts to above 11 and then started dropping again. H. > > > > > > I'm curious to know if anyone is experiencing otherwise unexplained iron > > > loss. I'm a 66 year old male with no known bleeding and have been > > > experiencing iron deficiency anemia since beginning Gleevec in 2003. It's > > > even been noticed on my BMB. > > > > > > Troxel > > > dx 2/2003 (eight years this Thursday) > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2011 Report Share Posted February 11, 2011 Sorry I can't be of much help in explaining. I do know HGB is the abrevation for hemoglobin and the normal scale is 12.5-17.0. I also know that one of the transfusions I had was called Platelets and understand they are responsible for causing the production of RBC and HGB. I don't remember if all the transfusions were the same. It took only 6 hours for 2 pints and I was always scheduled for 8 hours. Lots of reading, TV and just plain boredom so I do understand the pain. Thanks for posing such a great question and I hope someone else can give us input for a better answer. H. > > > > > > > > I'm curious to know if anyone is experiencing otherwise unexplained iron > > > > loss. I'm a 66 year old male with no known bleeding and have been > > > > experiencing iron deficiency anemia since beginning Gleevec in 2003. It's > > > > even been noticed on my BMB. > > > > > > > > Troxel > > > > dx 2/2003 (eight years this Thursday) > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2012 Report Share Posted May 11, 2012 Could it be inability to swallow iron-rich foods? If there is enough iron in the diet, I would like to know the reason too. > > > > > > This board is a fabtastic gift to all of us who have achalasia. Thanks to everyone for the great input, so helpful to those of us new to this disease. I need help finding a gastroenterologist in Los Angeles who is well familiar and has experince traeting achalasia patients. Anyone have any recommendations? Anyone on here from LA? Would love to talk with you. One would think there would be a specialist here, but after seeing three gastro doctors and getting the diagnosis wrong, I really need to find a doctor who can follow up with me since I had the HM in April. Thanks thanks thanks!!! > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2012 Report Share Posted May 11, 2012 This morning I was told my red blood cells were too small. The GI doc said it was iron deficiency anemia. I'm hoping it is because my LES is closing and I can't eat all that much each day. However, I have been borderline anemic since I was diagnosed a couple of decades ago. I also wonder if there is some relationship between the two. Sent from my iPod On May 11, 2012, at 21:42, " marie_dressler " <bandreino@...> wrote: > Could it be inability to swallow iron-rich foods? If there is enough iron in the diet, I would like to know the reason too. > > > > > > > > > > This board is a fabtastic gift to all of us who have achalasia. Thanks to everyone for the great input, so helpful to those of us new to this disease. I need help finding a gastroenterologist in Los Angeles who is well familiar and has experince traeting achalasia patients. Anyone have any recommendations? Anyone on here from LA? Would love to talk with you. One would think there would be a specialist here, but after seeing three gastro doctors and getting the diagnosis wrong, I really need to find a doctor who can follow up with me since I had the HM in April. Thanks thanks thanks!!! > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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