Dear Jennie, no matter what, I always count my blessings!!!! I have the medication and will start it tomorrow morning after breakfast.
BMA went OK, Results will be available in two weeks... Marty, I am diabetic. I drink light and diet cranbery juice. I don't know if it has the same effect... Must rest. Take care you all!!!!! [?] Maria On Fri, Feb 20, 2015 at 8:31 AM, 'Icandoallttc' via CMLHope < cmlhope@googlegroups.com> wrote: > 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 [image: 🐠][image: 🐠][image: 🐠][image: 🐠][image: > 🐠][image: 🐠][image: 🐠][image: 🐠][image: 🐠][image: 🐠][image: 🐠][image: > 🐠]. 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. > 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. 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