[CMLHope] Re: Kidney Transplant
Dear Marty, I am thrilled, so happy, thankkfull and very hopeful for your new kidney. Praying that it is a mathc! Maria 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.
Re: [CMLHope] Re: Kidney Transplant
maria, I take cranberry capsules everyday to help kidneys. Seems to help. I drink what I call cranwater throughout the day, to flush my body of extra toxins..1 ounce of straight unsweetened cranberry juice mixed with 7 ounces or more of water. I do this several times a day. It is tart, but diluted, it's not bad. Some people add a little stevia to unsweeted cranberry juice and that can help as well. Good luch with this. I use knudson's brand. Sp? unsure of spelling. I think that is it... take good care, 18's Beth -Original Message- From: 'Susan Zimmerman' via CMLHope To: cmlhope Sent: Mon, Feb 23, 2015 11:00 pm Subject: Re: [CMLHope] Re: Kidney Transplant Maria, I would buy cranberry capsules if I was you, as they work better in my book. I am diabetic also and can't stand the taste of non-sugared cranberry juice, (Lakewood brand). That's the only one without added sugar. 18's, Susan -Original Message- From: Marty Gartenberg To: cmlhope Sent: Fri, Feb 20, 2015 7:30 pm Subject: Re: [CMLHope] Re: Kidney Transplant Hi Maria, Light and diet cranberry juice does have the same effect on your kidneys. Just be sure that it is pure cranberry juice and not mixed with other fruit juices like grape juice. 18's, Marty On Fri, Feb 20, 2015 at 7:01 PM, Maria Cashion wrote: 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 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 . 18,s On Feb 19, 2015, at 4:19 PM, Maria Cashion 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
Re: [CMLHope] Re: Kidney transplant
Marty, That is great news. Please let it be a match. Just to let you know, I'm still praying. L'Chaim Sherri On Mon, Feb 23, 2015 at 11:08 PM, Richard H wrote: > Great news MartyMy prayers are with you.. This was a great day, I also > received good news today. Will more post tomorrow. > > Richard H. > > > > On Monday, February 23, 2015 at 6:10:19 PM UTC-6, wa2yyx wrote: > >> I thought that everyone should know, When I arrived at dialysis this >> morning I had a phone call from my transplant coordinator. She told me that >> there is a kidney for me and I will have to go to the hospital late this >> evening. They still need to make sure that the cross match is good. If it >> isn't then back to the drawing board but if it is good then the surgery >> should take place tomorrow morning. >> >> I would like to thank you all for all of your good wishes and prayers. >> >> I will probably be out of touch for a while. >> >> 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] Re: Kidney transplant
Great news MartyMy prayers are with you.. This was a great day, I also received good news today. Will more post tomorrow. Richard H. On Monday, February 23, 2015 at 6:10:19 PM UTC-6, wa2yyx wrote: > I thought that everyone should know, When I arrived at dialysis this > morning I had a phone call from my transplant coordinator. She told me that > there is a kidney for me and I will have to go to the hospital late this > evening. They still need to make sure that the cross match is good. If it > isn't then back to the drawing board but if it is good then the surgery > should take place tomorrow morning. > > I would like to thank you all for all of your good wishes and prayers. > > I will probably be out of touch for a while. > > 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.
Re: [CMLHope] Re: Kidney Transplant
Maria, I would buy cranberry capsules if I was you, as they work better in my book. I am diabetic also and can't stand the taste of non-sugared cranberry juice, (Lakewood brand). That's the only one without added sugar. 18's, Susan -Original Message- From: Marty Gartenberg To: cmlhope Sent: Fri, Feb 20, 2015 7:30 pm Subject: Re: [CMLHope] Re: Kidney Transplant Hi Maria, Light and diet cranberry juice does have the same effect on your kidneys. Just be sure that it is pure cranberry juice and not mixed with other fruit juices like grape juice. 18's, Marty On Fri, Feb 20, 2015 at 7:01 PM, Maria Cashion wrote: 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 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 . 18,s On Feb 19, 2015, at 4:19 PM, Maria Cashion 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 af
Re: [CMLHope] Re: Kidney Transplant
Hi Maria, Light and diet cranberry juice does have the same effect on your kidneys. Just be sure that it is pure cranberry juice and not mixed with other fruit juices like grape juice. 18's, Marty On Fri, Feb 20, 2015 at 7:01 PM, Maria Cashion wrote: > 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 >> 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 e
Re: [CMLHope] Re: Kidney Transplant
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 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 m
Re: [CMLHope] Re: Kidney Transplant
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 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 >> 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 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. >>> >
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 [image: 🐠][image: 🐠][image: 🐠][image: 🐠][image: > 🐠][image: 🐠][image: 🐠][image: 🐠][image: 🐠][image: 🐠][image: 🐠][image: > 🐠]. 18,s > > On Feb 19, 2015, at 6:37 AM, Marty Gartenberg 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, 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
Re: [CMLHope] Re: Kidney Transplant
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 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, 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 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.
Re: [CMLHope] Re: Kidney Transplant
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, 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] Re: Kidney Transplant
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.
Re: [CMLHope] Re: Kidney Transplant
Hi Shannon, Thank you for all of your crossed joints [?] I appreciate it. I know that it will eventually happen just as I know there WILL be a cure for CML, and that is what I have all of my joints crossed for. 18's, and hugs [?] Marty On Thu, Feb 12, 2015 at 5:46 AM, Shannon L wrote: > Hi Marty > > I have my fingers and toes crossed I hope it happens very soon > > Shannon > > On Wednesday, February 11, 2015 at 8:57:49 AM UTC+11, 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] Re: Kidney Transplant
Hi Marty I have my fingers and toes crossed I hope it happens very soon Shannon On Wednesday, February 11, 2015 at 8:57:49 AM UTC+11, 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.
