What good news Maria!!! It sounds like you had an awful insurance experience!! My team at Moffitt took care if getting my ponatinib and I think that is why it was approved so quickly. I was really worried as I had no idea they would approve it that quick. It was a good thing too as my platelets were in the millions and my WBC dangerously high. After only 22 days on ponatinib the blood counts are back to normal. I think the reason they start on a high dose is to get you back in remission as soon as possible. Then they can lower the dose if needed, at least that is always happened in my case. I have high blood pressure and heart problems and they went ahead and put me on ponatinib even though they know the risk. And you are right. They don't listen. Are you blood counts out if whack? They can test you for the mutant for sprycel. I had it. So happy you got your meds. That is always a hurdle to jump.
Prayers & Blessings Jeanie 🐠🐠🐠🐠🐠🐠🐠🐠🐠🐠🐠🐠. 18,s > On Feb 19, 2015, at 4:19 PM, Maria Cashion <mariacash...@gmail.com> wrote: > > 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<4F4.gif>) 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...<320.gif> > > 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...<4F4.gif><4F4.gif><4F4.gif> > > 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...<1B2.gif>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 >> <emoji_u1f420.png><emoji_u1f420.png><emoji_u1f420.png><emoji_u1f420.png><emoji_u1f420.png><emoji_u1f420.png><emoji_u1f420.png><emoji_u1f420.png><emoji_u1f420.png><emoji_u1f420.png><emoji_u1f420.png><emoji_u1f420.png>. >> 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. 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