Dear Maria, I just wanted to say hello and let you know after reading your message and Susan's response to you, that I too, support you listening to your own knowing about your body. You can always titrate up on a medication, if you need to..if the BCR able suggests that the lower dose does not serve you well enough. Every body is different and for some of us, a little bit of the drugs do very well. Toxicity can be serious. So listen to your body, and speak up clearly about your concerns!
Take good care, Beth -----Original Message----- From: 'Susan Zimmerman' via CMLHope <cmlhope@googlegroups.com> To: cmlhope <cmlhope@googlegroups.com> Sent: Thu, Feb 19, 2015 3:32 pm Subject: Re: [CMLHope] Re: Kidney TransplantI Dear Maria, You have the final word over your own body. If it was me, (it's not, so do what you want), I would be telling them I decided to start at 300 mg, NO MATTER WHAT THEY SAY. They will have to agree and monitor you if you stick to your guns. Being nice about it, tell them with a smile on your face that you feel strongly that 300 mg will be fine to try, and if it the numbers do not go down you will increase the dosage. I demanded 100 mg of bosulif due to my tendency toward stroke. (I did it nicely). I had been off everything for seven years and we were all a little concerned about blast phase happening to me. So....in 6 months I am in total remission!!! on 100 mg. Best wishes to take control of your own body and listen to your heart. 18's, Susan F. Zimmerman -----Original Message----- From: Maria Cashion <mariacash...@gmail.com> To: cmlhope <cmlhope@googlegroups.com> Sent: Thu, Feb 19, 2015 4:20 pm Subject: Re: [CMLHope] Re: Kidney Transplant Jeannie, they never put you to sleep here. They use a little anethesia for the skin and muscles where they will introduce the needle, but that' all. So far I have had 8 done since I was diagnosed and all I get is local anesthesia. Out of 8, seven have been OK, but my last one was done on Feb 14, 2014 and it was a bad one. The Dr. was not all there either, she had a bad cold. You can't imagene how happy I was last November when they told me I could have a PCR/FISH instead. This is happening because in my last CBC done at the Hospital my white blood count was a little elevated. ( no, for them infections don't count...patient needs another hole in the hip) Immediately she has assumed that I have lost remission because I have been off Sprycel since November...It all goes back to my infamous "Blast Crisis". God knows that I have outgrown it, but my doctors haven't... They care so much that at times they can hurt you! I also went to the nephrologist today. I fear the dose of Bosulif that the DR. wants me to start: 500mg. My kidneys are small, apparently my GFR is 59% according to my nephrologist and that is near normal. It's the near that bothers me!!! According to him, there are no indications as to adminstering a lower dose of this medication. If you guys check Phizer's page for Bosulif, it suggests a lower dose of 300-400 mcg for patients with renal disfuntion or with the possibility of renal disfunction or impairment. Bosulif is toxic to the kidneys... My sonogram showed both kidneys were small in size and recommended additional exams like an abdominal sonogram, etc. I will have to ask my GP to do that for me. What really bothers me is that they don't listen to you. It's that feeling that you get of being catalogued as "stupid patient" when you leave your doctor's office... Also, i found out today that insurance approved my Bosulif...that is some good news, the problem that I have with it is the dose, but we will see what happens. I will get the first prescription tomorrow. This time it only took 2 weeks to get it. I believe that I got results because I took matters into my own hands, called the pharmacy, med rejected initially. Called the insurance, called back the pharmacy, they resubmitted. Told the pharmacy what to do. Called over and over the insurance company, letting them know, of cvourse that my life was at stake...Also mentioned that since the Insurance carrier for my zone was changing in April, that they might be stretching approval of the medication...Called today when I got home and the med was approved, called the pharmacy and med will be dispensed tomorrow. I will pick it up after the porcedure mannana.. I know this is a long one. I have been away for a while, trying to get some personal matters finished. You never know what can happen and I dont really want to leave my family with any loose ends. I think of you guya everyday, WE ARE TRUE WARRIORS, struggling againt a threacharous disease, unkind doctors and very stron medication side effects. Truly LOVE YOU!!!!! Maria On Thu, Feb 19, 2015 at 11:42 AM, 'Icandoallttc' via CMLHope <cmlhope@googlegroups.com> wrote: Hi Maria--I had BMA a few weeks ago. It just confirmed my leukemia. I'll send a highlight of mine soon. Are they going to put you to sleep? Good luck -- you will be ok. Praying for you Prayers & Blessings Jeanie . 18,s On Feb 19, 2015, at 6:37 AM, Marty Gartenberg <wa2...@gmail.com> wrote: Hi Maria, I'm sorry to hear about your kidney problems. If I can give you some advice? If you are not diabetic try drinking cranberry juice. It washes out your kidneys and keeps you hydrated. Good luck with your BMA, I am praying that everything comes out well. 18's, Marty On Thu, Feb 19, 2015 at 1:43 AM, <mariacash...@gmail.com> wrote: Hello to all!!! I have been going to the posts, but not feeling well enough to comment on any until today. I am so very happy with the news about your advancement on the list for kidney transplant Marty!!!! God bless you and I do hope that it happens soon!!! I am having serious kidney problems myself. Have an appointment with the nephrologist later this morning...My kidneys are small. Had a sonogram done Saturfay and results do not look favourable... Wainting for aproval of Bosulif and wondering if I might still be able to use it. MY doctor fears that my CML is back. However, my PCR/Fish results from last November were completely negative... I am also having a bone marrow aspiration done tomorrow. We will see what develops. I still have a couple of hours to try and get some sleep.. Please take care and above all be HAPPY!!!!!!! :) On Tuesday, February 10, 2015 at 5:57:49 PM UTC-4, wa2yyx wrote: First I would like to thank each and every one of you for your prayers. As I pray for all of you I know that you have been also praying for me. This web site makes all of us as one caring family and it is always of help for all of us. I was just called by my transplant coordinator to inform me that I am now in status 5. As soon as a B+ matching comes along and if is a good cross match I will be called. It could be anytime or maybe a month or longer. There is no way of knowing. At least now I know that it is almost there. Hopefully very soon. I have been looking for this for almost four years. All of my doctors have been writing letters to the Cleveland Clinic and yesterday my kidney doctor also wrote one asking for me to be elevated on the list. Again, I am really blessed by having all of you as my friends. I will keep you informed of any further news. 18's Marty -- -- [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. 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