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 <[email protected] <javascript:>> > To: cmlhope <[email protected] <javascript:>> > 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 <[email protected] > <javascript:>> 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 <[email protected] <javascript:>> > To: cmlhope <[email protected] <javascript:>> > 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 <[email protected] > <javascript:>> 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 < > [email protected] <javascript:>> 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, >> [email protected] <javascript:> 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 < >> [email protected] <javascript:>> 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, >>> [email protected] <javascript:> 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 <[email protected] >>> <javascript:>> 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 [email protected] >>>> <javascript:> >>>> To unsubscribe from this group, send email to >>>> [email protected] <javascript:> >>>> 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 [email protected] <javascript:>. >>>> 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 [email protected] >>> <javascript:> >>> To unsubscribe from this group, send email to >>> [email protected] <javascript:> >>> 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 [email protected] <javascript:>. >>> 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 [email protected] >>> <javascript:> >>> To unsubscribe from this group, send email to 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