Hi Beth. We can both have a pity party--I sometimes think being so strong wears you out. Good luck on sprycel-it worked great for me for about 6 years. My problem is my counts won't stay stable when I go out of remission. Platelets and WBC soar high. We are all praying for you. Blessing Jeanie
Sent from my iPhone > On Jan 23, 2015, at 11:49 PM, Richard H <rbhuffm...@gmail.com> wrote: > > Thanks for asking Beth. I am doing very well at this time. I am in the > middle of new trials to get my TKI' approved for payment. That doesn't > become final until late March. > > Richard H. > >> On Friday, January 23, 2015 at 9:42:00 PM UTC-6, Beth wrote: >> Dear troups...Jeanie- good luck on ponatinib. I asked my doc about it, and >> they have 12 people on it currently all doing pretty well with minimal side >> effects noted...just keep close eye on blood pressure going up >> suddenly...they they give you bp medicine, or take you off for a while or >> figure out how to support you with the med. It's supposed to be very potent >> stuff!!! >> >> Marty- you are going to get a kidney...all of us are praying so hard for >> i...it's your attitude that will see you through....your inner strength and >> spirit that seem to sustain you..through the "waiting" and all the other >> hard parts.. >> >> Michelle- I keep seeing you dancing with your husband...ballroom >> dancing....if not know..then soon.. >> >> Sherri- good luck with the results of the tests.... >> >> Greenie- I am thinking of how inspiring you and your wife are...I keep >> thinking of the Ding Darling Wild Life Sanctuary near where you live.. >> And Richard..how are you doing???and so many others who are a part of this >> CML family.. >> >> I think of all of you individually and collectively often... >> >> my own check is that life has been rough lately...BCR shows CML back and 5 >> fold increase in the last 9 weeks....pretty fast growth for a slow growing >> cancer....hgood news is that overall numbers are still low...and I trust >> sprycel- which I am reuptaking this week...will do me well. Doing tests >> here for thyroid/ thalamus/ other metabolic rulers and conductors- MRI"s >> scans etc...then back to Mayo in a couple of weeks to see neuro/muscular >> specialist....and hopefully between the two..will get to the bottom of my >> symptoms and test concerns and can start a treatment plan...it's been a long >> time in coming..with symptoms progressing... >> >> had a momentary pity party yesterday..but today rallied..to carry >> on....trying to be strong and stay positive... >> >> with you all in spirit...more updates when I know something... >> >> >> Fondly, Beth >> >> >> -----Original Message----- >> From: 'Icandoallttc' via CMLHope <cml...@googlegroups.com> >> To: cmlhope <cml...@googlegroups.com> >> Sent: Fri, Jan 23, 2015 5:41 am >> Subject: Re: [CMLHope] Big test today >> >> Thanks Beth for the kind sweet words. My new med gets here soon--suppose to >> take care of any mutants. Ponatinib is the name. I am so thankful I could >> get it. >> How are you? >> Blessings >> Jeanie >> >> Sent from my iPhone >> >> On Jan 22, 2015, at 6:49 PM, bkbarney via CMLHope <cml...@googlegroups.com> >> wrote: >> >>> Thinking of you Jeannie, sending you lots of peaceful, warm thoughts, >>> prayers and hugs. You are a real trouper.. a true warrior. We all love >>> you...and admire you...Rest yourself. take good care..keep us posted. Beth >>> >>> >>> -----Original Message----- >>> From: 'Icandoallttc' via CMLHope <cml...@googlegroups.com> >>> To: cmlhope <cml...@googlegroups.com> >>> Sent: Thu, Jan 22, 2015 5:37 pm >>> Subject: Re: [CMLHope] Big test today >>> >>> Endoscopy was kk--put me to sleep --inflamed stomach. >>> Platelets had gone high again. Increased hydrea till mon. More test. >>> Got my ponatinib. Or it is coming in the mail. Wait and see right now. >>> Tired blessings >>> Jeanie >>> >>> Sent from my iPhone >>> >>> On Jan 22, 2015, at 6:28 PM, Marty Gartenberg <wa2...@gmail.com> wrote: >>> >>>> Hi Greenie, >>>> >>>> You have me beat hands down. I used to call them a real pain in my azz >>>> >>>> Glad I don't have to have them anymore. Now just waiting for another >>>> "adventure" in my life to happen, a kidney transplant. I probably have >>>> more of others parts in my body then most people do. >>>> >>>> Since they are human parts does this make me a bionic man? Hey if we can't >>>> laugh then we cry and I am not a cry baby. >>>> >>>> 18's, >>>> >>>> Marty >>>> >>>>> On Thu, Jan 22, 2015 at 12:42 PM, Myvety2k via CMLHope >>>>> <cml...@googlegroups.com> wrote: >>>>> Hi Marty, their may have been a few more in their I know I was getting >>>>> one every 4 month for 7 to 8 years. Next time I'm in Chicago I'll have >>>>> to check with them because before going into the study in Chicago I had 2 >>>>> at the other Doctors office in Munster, IN. >>>>> >>>>> greenie >>>>> >>>>> In a message dated 1/22/2015 12:14:41 P.M. Eastern Standard Time, >>>>> wa2...@gmail.com writes: >>>>> Hi Greenie, >>>>> >>>>> Wow 27 of them! You got me beat, I only had 17. LOL >>>>> >>>>> 18's, >>>>> >>>>> Marty >>>>> >>>>> >>>>>> On Thu, Jan 22, 2015 at 7:24 AM, Myvety2k via CMLHope >>>>>> <cml...@googlegroups.com> wrote: >>>>>> Hi Marty, I'm glad I don't have to get any more BMB, blood work instead. >>>>>> I had 27 of them and their not a lot of fun. My back is like a rocky >>>>>> road with all the bumps in it. >>>>>> >>>>>> greenie >>>>>> >>>>>> In a message dated 1/22/2015 7:15:00 A.M. Eastern Standard Time, >>>>>> wa2...@gmail.com writes: >>>>>> Hi Sherri, >>>>>> >>>>>> I had one and let me tell you that it is no where close to having a BMB >>>>>> which I had 17 of them. I wish you the very best of luck and I know that >>>>>> your frightened and it's difficult to not worry but you go in there as a >>>>>> winner! >>>>>> >>>>>> 18's, >>>>>> >>>>>> Marty >>>>>> >>>>>> >>>>>> >>>>>>> On Thu, Jan 22, 2015 at 4:25 AM, sherri swanson <swanson....@gmail.com> >>>>>>> wrote: >>>>>>> Hi everyone! >>>>>>> >>>>>>> This morning I'm having an Ultrasound Guided Fine Needle Aspiration >>>>>>> done on my thyroid. One of my doctors found a mass on my thyroid that >>>>>>> is about half the size of my right lobe and sent me for a regular >>>>>>> ultrasound with the hopes that he would be able to see something. Well, >>>>>>> me being me, of course he couldn't and off to the ENT I went for even >>>>>>> more test before I was told I would have to have this one this morning. >>>>>>> >>>>>>> This procedure takes 2 hours as it requires multiple insertions into my >>>>>>> neck with this very fine needle. The only thing I could relate it to >>>>>>> was my BMA and was wondering if anyone here has had one and could tell >>>>>>> me if they are similar to the bone marrow aspiration? Gee, 2 hours of >>>>>>> multiple insertions in the neck over insertions in the back side. Right >>>>>>> now, the back side is sounding a whole lot better. I mean what's a few >>>>>>> more holes in my bones there? LOL <338.png> >>>>>>> >>>>>>> Wish me luck. >>>>>>> >>>>>>> L'chaim >>>>>>> >>>>>>> Sherri >>>>>>> -- >>>>>>> -- >>>>>>> [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 cml...@googlegroups.com >>>>>>> To unsubscribe from this group, send email to >>>>>>> cmlhope-u...@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+u...@googlegroups.com. >>>>>>> For more options, visit https://groups.google.com/d/optout. >>>>>> >>>>>> -- >>>>>> -- >>>>>> [CMLHope] >>>>>> A support group of 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stop receiving emails from it, send an >>>>> email to cmlhope+u...@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 cml...@googlegroups.com >>>> To unsubscribe from this group, send email to cmlhope-u...@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+u...@googlegroups.com. >>>> For more options, visit https://groups.google.com/d/optout. >>> >>> -- >>> -- >>> [CMLHope] >>> A support group of http://cmlhope.com 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