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 <cmlhope@googlegroups.com>
To: cmlhope <cmlhope@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 <cmlhope@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 <cmlhope@googlegroups.com>
To: cmlhope <cmlhope@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
<cmlhope@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
<cmlhope@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.sherri...@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
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