Hi all, Have you considered Moffitt cancer center. I go there and like it. You go to the blood center and get your blood checked and then in about an hour they are faxed over to doctor and you see him. I go every three months. I was wonder if any of you have your bones aching? My right little finger and hand ache and legs hurt sometimes at night. I've been fighting cml for almost 14 years and never had this. Blood counts are all good. Thanks all.
My Motto: Faith and Pills With Love 🐠18's Dx 1/2004 CML Leukemia Started Gleevec 2/2004 Started Tasigna 9/2009 Started Sprycel 11/2009 Started Ponatinib 1/2015 Doctor Balducci Moffitt Cancer Center > On Dec 21, 2017, at 6:56 PM, Marty Gartenberg <wa2...@gmail.com> wrote: > > Listen Greenie, > > This is what i do because of a promise that i once made to GOD. Let me tell > you about this. > When i was about to receive my total body radiation almost 30 years ago, > > just before they were about to close and lock that radiation chamber door i > got down on my knees clasped my hands in front of me and prayed to GOD asking > HIM if he would spare me i would help people that were in my situation that i > would try to help them. So far i have helped 1,286 people in the past 30 > years, and wrote my journal about each and every one of them. This will never > be published because of confidentiality reasons, but on occasion i will send > some of them parts of my book in order to try and help them. > > Listen i am no saint just a plain human being but someone that once made a > promise to GOD and i am still here after many many death defying things that > i have gone trough. And that is why i do what i promised to do. I hope that > you understand why i do what i do... > > There is also why i write 18's when ever i end any posts that i make, because > that is what i believe. 18's to me represents LIFE. > > If you care to send me your personal email address i would like to send you > something. Mine is wa2yyx@gmail,com > > 18's, > > Marty > >> On Thu, Dec 21, 2017 at 4:28 PM, Myvety2k via CMLHope >> <cmlhope@googlegroups.com> wrote: >> Marty, I want to thank you for your fast reply, I hear you. I do have a >> Nephrologist and he had me get some blood work last month and he seems to be >> O.K. with the results. I do have the paper work and will scan it and send >> it out so you can check it out. I want to thank you so much, you have made >> me feel so much better and I will listen to what you wrote me. Again I want >> to thank you. >> >> Greenie >> >> In a message dated 12/21/2017 11:31:29 A.M. Eastern Standard Time, >> wa2...@gmail.com writes: >> Hi Greenie, >> >> First of all, you mention that you are worried. Why may i ask are you so >> worried? When people worry about things that they have little or no control >> over then it not only effects your mind but also your body. I know all about >> this because that is exactly what i used to do and i learned to direct my >> mind in more productive ways. Now just try to relax and get yourself going >> in the right direction. >> >> Now you mention about CRI so read this.. >> >> CRI (color rendering index) is a measure of how accurately a light source >> illuminates objects' true colors. Our LED lights have CRI values of up to >> 98, indicating that our LED lights are able to produce white light that >> approximates halogen or incandescent lighting and natural daylight. >> >> It however has some effect on your kidneys because if they are having >> problems than it is a very simple thing to just go to a Nephrologist and see >> what is happening and why. >> >> As you mentioned the normal Hemoglobin count for women should be from around >> 13 to 17 however not necessarily for men because men don't have their time >> of the month as woman do, so men require a bit less of Hemoglobin. >> >> Now a count of 10.7 shows that you are enemic and that can from a verity of >> different things. One being the effects from your TKI being Gleevic which i >> think may be the cause, now mind you I am not a doctor but someone that does >> a lot of research into things that i have already been through. >> >> Another thing would be kidney problems which i kind of doubt because your >> doctors haven't mentioned it. Do you know what your >> >> Levels of creatinine in the blood reflect both the amount of muscle a person >> has and their amount of kidney function. Most men with normal kidney >> function have approximately 0.6 to 1.2 milligrams/deciliters (mg/dL) of >> creatinine. Most women with normal kidney function have between 0.5 to 1.1 >> mg/dL of creatinine.. >> >> My Creatinine level was 8.2 before i started on my dialysis and i had to go >> onto dialysis which lasted for four years. Then i was able to get a kidney >> transplant from a 20 year old deceased man who was anonymous, and about two >> weeks later it dropped down to 4.1 and kept dropping to where it is now at >> .8 and it now stays there. Remember, i have only one kidney while most >> other people have two kidneys so i know that having only one kidney is doing >> very well for me, and no more dialysis for me anymore. >> >> What you did mention is that your counts are now at "My white count is >> find at 5.8). Iron was 88 (50-212), Iron binding capacity was 281 (250 - >> 450)". Which are quite acceptable and very good for you. >> >> And speaking about your kidneys let me give you some information. When my >> kidneys started to fail i noticed that my Hemoglobin also was dropping >> especially after i began to receive dialysis. They were at 14 then would >> gradually drop to being 9.9 and that was the magic bullet that triggered >> that i would be able to start receiving Procrit or Epogin injections which >> brought my Hemoglobin to usually 11 and it would take about a week. Then a >> few weeks later another shot and so on. The reason why is that your kidneys >> produce a *hormone that is sent to your bone marrow that stimulates Red >> Blood cells into your bone marrow. >> *Erythropoietin (EPO) is a hormone produced by the kidney that promotes the >> formation of red blood cells by the bone marrow. The kidney cells that make >> erythropoietin are sensitive to low oxygen levels in the blood that travels >> through the kidney. >> >> This is what happened to me so i know what i am talking about. Ever since i >> received my kidney transplant about two and a half years ago my Hemoglobin >> has gotten to be around 14 >> >> Now i am not saying that you have any problems with your kidneys but i am >> puzzled why did your doctor mention about CRI? As I mentioned why not go to >> see a Nephrologist . Couldn't hurt. >> >> Another suggestion that you have already mentioned, and because you have a >> smart doctor looking after you why spend over $600 to fly to Chicago when >> you have loads of very fine doctors in Florida especially in your area? >> >> Now I have given you a lot of useful information and hopefully it will help >> you and do you know why? It's because i was there and had to go through all >> of this and i learned what i had to do, and besides your worth it! Yes you >> are. Just as was my friend Lottie. She did a lot of research as well in her >> time which i never forgot... In fact so did Zavie, >> >> Now finally, since AOL is going out then you already did the right thing by >> switching over to another (FREE, I love that four letter F letter word) >> internet provider. You also may want to get another F word like gmail just >> in case as a backup. >> >> Please, please Greenie try to stop worrying, just take it one day at a time. >> You know it will all work out. >> >> 18's, >> >> Marty >> >>> On Thu, Dec 21, 2017 at 7:10 AM, Myvety2k via CMLHope >>> <cmlhope@googlegroups.com> wrote: >>> To all of my CML friends and care givers. >>> >>> I took a flight to Chicago Dec. 6th to see my cancer Doctor get blood work. >>> A week later she called me to tell me that my Hemoglobin was down to 10.7 >>> and the norm is 13.0 - 17.5. My Hematocrit was 32.1% and the norm is 38.0 >>> - 50 %. >>> She wants me to get a Bone Marrow test here in Florida because the airfare >>> to Chicago would be $601.00. That's not going to happen. I'm also taking >>> Folic acid for the last 6 months (1mg). Folate is 16.7 >=5.9. >>> >>> She sent my other cancer Doctor down here a fax as to what she wants. I >>> have and appointment set for Jan. 2 and talk to him about what to do. (I'm >>> worried). She made a note to him that I also have CRI which may be >>> Contributory. >>> >>> So back in 2010 my counts on these two item were Hemoglobin 13.3 and >>> Hematocrit was 39.0. >>> >>> So back in 2015 my counts on these two items were Hemoglobin 12.0 and >>> Hematocrit was 36.1. So the counts are coming down and I think it's from >>> the Gleevec. >>> >>> My white count is find at 5.8). Iron was 88 (50-212), Iron binding >>> capacity was 281 (250 - 450). >>> >>> So anyone that may have some answers that may make me feel better just hop >>> right it and I will very happy to hear from you. >>> >>> ALSO, I don't know now to do it but AOL is no longer going to be as of Jan >>> 15. My new email address is (myvet...@comcast.net) and it's free for me >>> and much better. >>> >>> Any feedback would be deeply appreciated. >>> >>> Thank you all and have a Very Happy and Safe Holiday. >>> >>> Greenie for South Fort Myers, FL. >>> >>> -- >>> -- >>> [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. >> -- >> -- >> [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. -- -- [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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