It took about a month, but after a week or two it came back and lasted for another few weeks. It was very difficult to explain, the tingling was in my pinky and the inside side that touched my ring finger on it's side. But it never came back again...
18's, Marty On Tue, Jul 24, 2018 at 1:07 PM, 'Jeanie' via CMLHope < cmlhope@googlegroups.com> wrote: > Thanks Marty and everyone. How long did it take for tingling to go away? > > My Motto: > Faith and Pills > With Love > Jeanie > š free > 18ās to Marty > Dx 1/2004 CML Leukemia > Started Gleevec 2/2004 > Started Tasigna 9/2009 > Started Sprycel 11/2009 > Started Ponatinib 1/ 2015 15 mg > New Doctor--Dr Martine Extermann > Moffitt Cancer center sept 2017 > Dr Balducci retired > Dr Gedia PCD > 0 CBL. ABL > Taking 0.05mg 50 mcg levothyroxine > July 2018 dx with thyroid disease tsh 13 > T4-normal t3-normal > > On Jul 24, 2018, at 9:50 AM, Marty Gartenberg <wa2...@gmail.com> wrote: > > Hi Jeanie and Joyce, > > First to Jeanie: I am very sorry that you are having this problem but you > should know that this will be corrected very soon. And the fact that your > having all of these problems especially about your swaeting and the > temporary loss or tingling of one of your fingers. I am "happy" that you > brought this up because that is also what happened to me as well. In my > case it was my pinky on my right hand, but it will go away. > > Now I did ask you if your dose may be incorrect because if in fact it was > 50 mg and not micrograms then you would have been in the hospital for sure > and who knows what would have happened to you. You see that is what is GOOD > about this CMLhope site. And you know why, it is because other people care > about each other. > > So now let's bring in Joyce: So miss Joyce I need you to stand up and very > gently pat yourself on the back, and if you want to curtsy a little bit > then be my guest.š > > Oh please don't let me forget those cherries for Jeanie as well.š > > 18's, > > Marty > > On Tue, Jul 24, 2018 at 7:51 AM, 'Jeanie' via CMLHope < > cmlhope@googlegroups.com> wrote: > >> Thank you Joyce >> Yes I was wrong about dosage. It was 0.05mg >> I took a whole 5o this morning but Iām sweating really bAd and shaking. >> So Iām going back to half. >> I woke up a few months ago and my right finger was numb. >> Anyone have that? >> >> My Motto: >> Faith and Pills >> With Love >> Jeanie >> š free >> 18ās to Marty >> Dx 1/2004 CML Leukemia >> Started Gleevec 2/2004 >> Started Tasigna 9/2009 >> Started Sprycel 11/2009 >> Started Ponatinib 1/ 2015 >> New Doctor--Dr Martine Extermann >> Moffitt Cancer center sept 2017 >> Dr Balducci retired >> >> 0 CBL. ABL >> >> On Jul 19, 2018, at 10:34 PM, Joyce Mesnarich <joy...@htc.net> wrote: >> >> Jeanie, >> I would take the dosage your Dr advised. My husband is taking 150. He >> has been taking it so long that we canāt really remember how often he did >> blood tests when he first started. I think it was every 3 months. Now he >> gets tested every 6 months. That, evidently, is what Medicare will pay for >> and deems necessary. I takes a while for your body to build up the >> thyroid. I think you should take the whole dosage. It may even be >> adjusted higher as you go along and they find the right amount that you >> need. 50 sounds like a very low dose. Donāt think you should have any >> problems with it. Hope you feel better soon. My husband never noticed any >> difference in how he felt. He was diagnosed before he had any symptoms, I >> guess. >> God bless and keep you, >> Joyce in Southern Illinois >> >> >> On Jul 19, 2018, at 1:29 PM, 'Jeanie' via CMLHope < >> cmlhope@googlegroups.com> wrote: >> >> >> My dr gave me 50 mg but I am taking half. Should I take the full dose? >> 18ās >> How often to get tested? >> My Motto: >> Faith and Pills >> With Love >> Jeanie >> š free >> Dx 1/2004 CML Leukemia >> Started Gleevec 2/2004 >> Started Tasigna 9/2009 >> Started Sprycel 11/2009 >> Started Ponatinib 1/ 2015 >> New Doctor--Dr Martine Extermann >> Moffitt Cancer center sept 2017 >> Dr Balducci retired >> >> 0 CBL. ABL >> >> On Jul 17, 2018, at 3:39 PM, Marty Gartenberg <wa2...@gmail.com> wrote: >> >> Great drug! I have been taking it for many, many years. What dose is he >> on? >> >> 18's, >> >> Marty >> >> On Tue, Jul 17, 2018 at 3:30 PM, Joyce Mesnarich <joy...@htc.net> wrote: >> >>> Jeanie, >>> My husband has had hypothyroidism for yearsā¦..before he got CML. It >>> never caused him any problems. It was diagnosed at a regular office visit >>> with a blood test. He takes levothyroxin and has regular blood tests. >>> >>> Joyce in Southern Illinois >>> >>> >>> On Jul 17, 2018, at 10:57 AM, 'Jeanie' via CMLHope < >>> cmlhope@googlegroups.com> wrote: >>> >>> Anyone have a thyroid problem? >>> >>> My Motto: >>> Faith and Pills >>> With Love >>> Jeanie >>> š free >>> Dx 1/2004 CML Leukemia >>> Started Gleevec 2/2004 >>> Started Tasigna 9/2009 >>> Started Sprycel 11/2009 >>> Started Ponatinib 1/ 2015 >>> New Doctor--Dr Martine Extermann >>> Moffitt Cancer center sept 2017 >>> Dr Balducci retired >>> >>> 0 CBL. ABL >>> >>> On Jul 15, 2018, at 12:44 PM, Marty Gartenberg <wa2...@gmail.com> wrote: >>> >>> Okay Jeanie, >>> >>> Since there is a lot to talk about I will do it between your lines. >>> >>> Hi >>> Thatās cute >>> When I first started dating my hubby I was 16. When we went to leave I >>> hugged and kissed my mom and dad goodbye. He told me later he had never >>> seen that before. >>> >>> OH I DID, BECAUSE MY PARENTS CAME FROM EUROPE AND IT WAS THEIR CUSTOM >>> THE WAY THAT THEY WOULD USUALLY DO IT WAS FIRST CAME MY MOM AND SHE WOULD >>> HUG AND THEN KISS ME. THEN CAME MY DAD. WHAT HE WOULD DO WAS FIRST HUG ME >>> THEN KISS ME AND THEN HE WOULD GIVE ME WHAT WAS CALLED A KNIPPLE. DO YOU >>> KNOW WHAT A KINPPLE IS? WELL IT HURT LIKE HE NEVER WANTED ME TO FORGET HIM. >>> >>> HE WOULD GRASP MY CHECK BETWEEN HIS THUMB AND INDEX FINGERS AND SORT OF >>> TWIST AND THEN LET GO. I COULDN'T WAIT TILL IT WAS OVER BUT AS I LEARNED >>> LATER ON IN LIFE HE JUST WANTED ME TO KNOW THAT HE AND MOM WOULD NEVER >>> FORGET THEM >>> >>> His mom and dad never hugged or kissed him. It was just the way we >>> were. >>> Kiss goodbye and kiss hello. >>> >>> BY THE WAY THERE IS A HEBREW WORD THAT YOU HAVE PROBABLY HEARD BEFORE, >>> SHALOM. IT MEANS WHEN YOU ARE APPROACHING SOMEONE, HELLO, WHEN YOU ARE ON >>> THEIR SIDE IT MEANS PEACE AND WHEN YOU PASS THEM IT MEANS GOODBYE >>> >>> I THINK THAT HE JUST NEEDED A KNIPPLE. >>> >>> Same way with my kids. I tell them a hug is better than a pill. >>> How are you today? >>> >>> HEY JEANIE, KINPPLES FOR EVERY ONE. š >>> >>> Iām waiting on my daughter as she will take me to a late lunch. >>> I find my appetite not as good as it used to be. How bout you? >>> >>> BOTH OF MY PARENTS WERE COOKS AND MY FATHER WAS ALSO A BAKER. WE DIDN'T >>> HAVE A LOT OF MONEY BUT WE SURE HAD A LOT OF BREAD. WE LEARNED TO MAKE DO. >>> A WHOLE STORY BEHIND THIS BUT FOR ANOTHER TIME... >>> >>> I loved Millieās cooking and recipes. I sure do miss her. >>> She fought hard. >>> I remember when she started losing the use of her arms she said she >>> didnāt know what she would do if she couldnāt do her sewing and etc. >>> though I never met her I felt I knew her all my life. More laterāā >>> >>> THAT'S WHY I CALLED HER MOMMY LOTTIE. >>> >>> And she knew what 18's meant. >>> >>> So 18's, >>> >>> Marty, and a Knipple to you. >>> >>> >>> >>> >>> On Sun, Jul 15, 2018 at 12:05 PM, 'Jeanie' via CMLHope < >>> cmlhope@googlegroups.com> wrote: >>> >>>> Hi >>>> Thatās cute >>>> When I first started dating my hubby I was 16. When we went to leave I >>>> hugged and kissed my mom and dad goodbye. He told me later he had never >>>> seen that before. His mom and dad never hugged or kissed him. It was just >>>> the way we were. >>>> Kiss goodbye and kiss hello. >>>> Same way with my kids. I tell them a hug is better than a pill. >>>> How are you today? >>>> Iām waiting on my daughter as she will take me to a late lunch. >>>> I find my appetite not as good as it used to be. How bout you? >>>> I loved Millieās cooking and recipes. I sure do miss her. >>>> She fought hard. >>>> I remember when she started losing the use of her arms she said she >>>> didnāt know what she would do if she couldnāt do her sewing and etc. >>>> though I never met her I felt I knew her all my life. More laterāā >>>> >>>> My Motto: >>>> Faith and Pills >>>> With Love >>>> Jeanie >>>> š free >>>> Dx 1/2004 CML Leukemia >>>> Started Gleevec 2/2004 >>>> Started Tasigna 9/2009 >>>> Started Sprycel 11/2009 >>>> Started Ponatinib 1/ 2015 >>>> New Doctor--Dr Martine Extermann >>>> Moffitt Cancer center sept 2017 >>>> Dr Balducci retired >>>> >>>> 0 CBL. ABL >>>> >>>> On Jul 13, 2018, at 9:52 AM, Marty Gartenberg <wa2...@gmail.com> wrote: >>>> >>>> Jeanie, And I love you to, but when you say " Love you so very much" >>>> Do you mean like hugging me so much that your going to crush me until my >>>> ribs crumble? >>>> >>>> Ah yet another opportunity to let me say again... >>>> >>>> 18's, >>>> >>>> Marty >>>> >>>> On Fri, Jul 13, 2018 at 9:16 AM, 'Jeanie' via CMLHope < >>>> cmlhope@googlegroups.com> wrote: >>>> >>>>> So true Marty >>>>> You arenāt even on tkiās and look what youāve been through. >>>>> Thank you for this email. >>>>> Love you so very much >>>>> Jeanie >>>>> >>>>> My Motto: >>>>> Faith and Pills >>>>> With Love >>>>> Jeanie >>>>> š free >>>>> Dx 1/2004 CML Leukemia >>>>> Started Gleevec 2/2004 >>>>> Started Tasigna 9/2009 >>>>> Started Sprycel 11/2009 >>>>> Started Ponatinib 1/ 2015 >>>>> New Doctor--Dr Martine Extermann >>>>> Moffitt Cancer center sept 2017 >>>>> Dr Balducci retired >>>>> >>>>> 0 CBL. ABL >>>>> >>>>> On Jul 10, 2018, at 8:53 AM, Marty Gartenberg <wa2...@gmail.com> >>>>> wrote: >>>>> >>>>> Oh Jeanie, >>>>> >>>>> first let me take you back to something I wrote to Richard >>>>> >>>>> I have heard a lot of people mentioning that they blame some of the >>>>> TKI that they are taking. Perhaps that may be so, but what if it >>>>> isn't that at all? That is why they need to consult with their doctors >>>>> because that is his or her job. šAnd if they feel that there is someone >>>>> that can help as well then get a second opinion.š Don't forget they won't >>>>> be hurt or offended because they are all getting together to help you. >>>>> >>>>> >>>>> And we will now continue on. Please read this. I took the time to >>>>> write it for a reason and I see that you took my šadviceš. A lot more... >>>>> But I want to hug your grand-daughter. My father once taught me a lesson >>>>> and I think that you may want to pass this onto her, and yourself as well. >>>>> >>>>> When a person/s learns something new everyday then they become >>>>> smarter. When a person/s refuses to learn something every day then they >>>>> revert back to yesterday. >>>>> >>>>> Hum, let me think..... Oh yea I think that your grand-daughter already >>>>> knows this? >>>>> >>>>> >>>>> "Take it Day by day and as my granddaughter says". She said āevery >>>>> little thingās gonna be alright.ā >>>>> ā¤ļø >>>>> Blood transfusions: A sort of long story but learning something new >>>>> every day made me smarter and I am still alive... Jeanie I don't blame you >>>>> for not wanting other peoples blood in you but let me ask you a question? >>>>> How many units of blood did you require? Did it help you? Well i needn't >>>>> know the answer because I already know but nothing that you told me but I >>>>> know and here is why. >>>>> >>>>> I had O+ blood and my sister had B+ blood. So my transplant doctor >>>>> told me that since my white blood count was past 186,000 that I need to >>>>> have the bone marrow transplant now. Or I may not survive because I was in >>>>> Blast crises that I was in. >>>>> >>>>> But he knew about my blood type wasn't a match for my sister but >>>>> everything was perfect but the matching type. He told me that there may be >>>>> a way to change my blood type but it could also cause my death. I then >>>>> told >>>>> him that i was dieing anyway so let's try it. >>>>> >>>>> He started it before my transplant. It would require that I would have >>>>> to get many, many blood transfusions as well a a lot of platelets >>>>> infusions, and Gama globulin and other human blood products. >>>>> >>>>> Who already knew about this? R***** Z********. Who showed up with 41 >>>>> "members" of his "family" >>>>> (Yes you know what I mean about this) ready to donate blood. But there >>>>> was a problem. At that time there was a new disease called AIDS and all of >>>>> the blood banks started testing and this slowed down the collection of >>>>> gathering of blood. >>>>> >>>>> Not to keep you on the edge of your seat. I once helped save a woman's >>>>> life because she was dying of stage four breast cancer and I did this >>>>> because I knew a doctor who may help her, and it took more then two years. >>>>> He never forgot me. >>>>> >>>>> Some people just have their power but most don't. He was one of those >>>>> that did to a certain extent. The way that I look about it was one life >>>>> foe >>>>> another. >>>>> >>>>> In order to have my blood type converted from O to B I needed 96 units >>>>> of blood and I already knew where 41 of them came from. Just to let you >>>>> know if a donated unit of blood did not match my blood profile it would be >>>>> switched and someone else would get that unit of blood and a "trade" was >>>>> made. I am now called a Chimera with B+ blood in me. >>>>> >>>>> Now I am going forward in my life once more: Twenty years later my >>>>> kidneys started started to fail. I was on Dialysis for four years and >>>>> through a miracle I was able to get a kidney transplant and while I was >>>>> outside of the operating room I noticed a white cooler with a red cross >>>>> and >>>>> it said "Human organs, B right side short urethra. >>>>> >>>>> I almost jumped out of the gurney because it was B type and then I >>>>> remembered that I used to be O type. Now what are the chances that this >>>>> could ever happen? >>>>> >>>>> Now Jeanie and all of the rest of you reading this, don't you think >>>>> that there truly Miracles floating around? Just ask your grand >>>>> daughter....Now you already know what I know. Have you learned anything >>>>> new >>>>> today? I have. >>>>> >>>>> >>>>> 18's >>>>> >>>>> Marty >>>>> >>>>> >>>>> >>>>> >>>>> >>>>> >>>>> >>>>> >>>>> On Tue, Jul 10, 2018 at 6:01 AM, 'Jeanie' via CMLHope < >>>>> cmlhope@googlegroups.com> wrote: >>>>> >>>>>> Hi all >>>>>> I had this problem when on Tasigna. My hmg dropped to 8. I argued >>>>>> with my onc as I didnāt want someone elseās blood in me. I knew if he >>>>>> would >>>>>> take me off the tasigna the hbg would come back up. He finally talked me >>>>>> into it and I had to stay for hours getting transfusions. As most of you >>>>>> know not fun. Tasigna about killed me and I landed back in the hospital >>>>>> until I could talk my doctor into giving me Sprycel. I decided to make >>>>>> the >>>>>> move to Moffitt and never regretted it. >>>>>> Good luck to everyone. Take it Day by day and as my granddaughter >>>>>> says, āevery little thingās gonna be alright.ā >>>>>> ā¤ļø >>>>>> >>>>>> My Motto: >>>>>> Faith and Pills >>>>>> With Love >>>>>> Jeanie >>>>>> š free >>>>>> Dx 1/2004 CML Leukemia >>>>>> Started Gleevec 2/2004 >>>>>> Started Tasigna 9/2009 >>>>>> Started Sprycel 11/2009 >>>>>> Started Ponatinib 1/ 2015 >>>>>> New Doctor--Dr Martine Extermann >>>>>> Moffitt Cancer center sept 2017 >>>>>> Dr Balducci retired >>>>>> >>>>>> 0 CBL. ABL >>>>>> >>>>>> On Jul 9, 2018, at 10:21 AM, Marty Gartenberg <wa2...@gmail.com> >>>>>> wrote: >>>>>> >>>>>> Richard, first thing is when your hemoglobin drops to 10 or below >>>>>> then is the time that procrit generic Epoetin Alfa should start. It >>>>>> should >>>>>> increase your red/hemoglobin count. However it may take a week or two to >>>>>> start showing results. Why don't you mention this to your doctor. >>>>>> Also, have your kidney function checked as well. >>>>>> >>>>>> When my kidneys started to fail I was on Dialsys and found that my >>>>>> hemoglobin level started dropping. Kidney function has a lot to do with >>>>>> that. The reason why is because there is a hormone called Erythropoietin >>>>>> which is released in response to hypoxia (low levels of oxygen at >>>>>> tissue level) in the renal circulation. It stimulates erythropoiesis >>>>>> (production of red blood cells) in the bone marrow. I am writing >>>>>> this in bold font to make sure that it can be understood, it is that >>>>>> important! >>>>>> >>>>>> When I was on Diaysis sometimes my HGB would drop to from 7% to 9% >>>>>> and I felt like I coulden't even get out of bed. My wife would help me >>>>>> into >>>>>> her car and help me into the Dialysis center. I lived a horrible life >>>>>> until >>>>>> I had a kidney Transplant. >>>>>> >>>>>> I have heard a lot of people mentioning that they blame some of the >>>>>> TKI that they are taking. Perhaps that may be so, but what if it isn't >>>>>> that >>>>>> at all? That is why they need to consult with their doctors because that >>>>>> is >>>>>> his or her job. And if they feel that there is someone that can help as >>>>>> well then get a second opinion. Don't forget they won't be hurt or >>>>>> offended >>>>>> because they are all getting together to help you. >>>>>> >>>>>> Richard and everyone else, there was a time a very long time ago that >>>>>> my father tought me something. He said that everyone needs to learn >>>>>> something new everyday because it will make you smarter. If you refuse to >>>>>> learn something new everyday then you will revert back to yesterday. And >>>>>> he >>>>>> was right! >>>>>> >>>>>> 18's >>>>>> >>>>>> Marty >>>>>> >>>>>> On Sun, Jul 8, 2018 at 11:31 PM, Richard H <rbhuffm...@gmail.com> >>>>>> wrote: >>>>>> >>>>>>> Yes, I have been struggling with this for years. I have had >>>>>>> Transfusions, and now check my CBC every month to see if I need to take >>>>>>> Procreate to bring my blood level back up. I am currently on 200 mg >>>>>>> Gleevec daily because my CML levels will rise if I don't use it as a >>>>>>> maintenance feature. I am approaching 16 1/2 years since diagnosis. >>>>>>> >>>>>>> Richard H. >>>>>>> >>>>>>> On Saturday, July 7, 2018 at 1:04:15 PM UTC-5, Vivi wrote: >>>>>>>> >>>>>>>> I suddenly became terribly anemic and my doctor cut my intake of >>>>>>>> 400mg Gleevec daily in half. It took five months but I am no longer >>>>>>>> anemic >>>>>>>> and the CML does not seem to have become visible as yet. Has anyone >>>>>>>> else >>>>>>>> had a problem like this? >>>>>>>> >>>>>>> >>>>>>> -- >>>>>>> -- >>>>>>> [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 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"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-unsubscribe@ > 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-unsubscribe@ > 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.
