Hi Maria, Just a few simple words:
You are your own best advocate. 18's, Marty On Thu, Feb 19, 2015 at 9:45 PM, bkbarney via CMLHope < cmlhope@googlegroups.com> wrote: > 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. >>> 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 a topic in the >> Google Groups "CMLHope" group. >> To unsubscribe from this topic, visit >> https://groups.google.com/d/topic/cmlhope/xBYmX67DgAY/unsubscribe. >> To unsubscribe from this group and all its topics, 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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