Hi, Susan
We live on the western edge of IL, about 50 miles south of St Louis, MO, across
the great Mississippi. So we are completely across the state of IL and half of
IN away from you. But this group makes us close. Right?
We don't know yet if bosulif is working for Wayne. He has an appointment to
see Dr Talpaz on April 16 in Ann Arbor and we will find out a few weeks after
that about the PCR. They have had him getting blood tests every two weeks and
they just called today about his last blood report and were concerned about a
sudden big rise in his liver enzymes. Don't know yet what they are thinking
but it is scary. He has tolerated bosulif very well, but now this. Back on
the roller coaster.
I don't know why they put Wayne on a low dose. After he had a bad reaction to
Gleevec, they put him on Sprycel at 50 MG, also a low dose. But it put him in
major molecular in about six months. Then he got pleural effusion and they
took him off Sprycel. In 3 months his numbers were rising quickly and he
started bosulif the end of January. You were very fortunate to have gone 7
years without TKIs. Have you ever had any issues with liver enzymes being out
of bounds? Anybody else on this site have liver issues?
I hope you get a good report on the 23rd.
Joyce in IL
On Apr 2, 2015, at 4:55 PM, 'Susan Zimmerman' via CMLHope wrote:
> Hi Joyce and Wayne,
>
> Enjoyed your encouragement for the people below. Just wanted you to know I'm
> also on 100 mg of bosulif since last April 30th, and doing quite well! Last
> test was done 3 months ago, but it was a fakeout as they got no results cuz
> it was botched. So I opted to wait 3 more months to go back, as we had spent
> a lot of money to go into Chicago and do some fun things. I go back I think
> on April 23rd. My last check I was in remission but not down to zero quite
> yet. It's going to be exciting to hear the good news when you get it that
> his counts are going down. Do you know what they are now? Where in southern
> Illinois do you live? We are in Granger, IN, top middle of Indiana, about 2
> hrs 20 min. from downtown Chicago if no traffic.
>
> I had to choose between Dr. Talpaz and Dr. Altman from recommendations by my
> old doc in Fla. at Moffitt.(We moved back home to Indiana in 2010 from Fla.)
> I went 7 yrs and 2 mos without any medication after being on gleevec for 2
> years because I had several brain bleeds and didn't want to die from
> that....lol So I defied the docs and said no med until I go out of
> remission. I never came out of cellular remission, but counts were 23 INT'l
> scale when I began bosulif. I told them I wanted the lowest dose, and it's
> working! Why is Wayne on the lowest dose again? I know you've told me, but
> I forget! (chemo brain?)
>
> Many blessings and Happy Easter,
> Susan F. Zimmerman
>
>
> -----Original Message-----
> From: Joyce Mesnarich <[email protected]>
> To: CMLHope <[email protected]>
> Sent: Thu, Mar 19, 2015 11:53 pm
> Subject: [CMLHope] Checking in/ to all my CML friends
>
> Haven't posted for a week or so, but I have been monitoring the site. Sherri,
> you said it is getting warmer in Northern Illinois and the snow is beginning
> to
> melt. I guess you are planning on sending it down to us in Southern
> Illinois.
> LOL We will all feel better when it gets warmer and the sun shines
> more.
>
> Jeanne, so sorry to hear that you are still having ear pain. Stay on
> it. You have been through a lot lately and I suppose you have put this ear
> thing at the bottom of the list. So go for it now! Glad to hear you are
> tolerating ponatinib.
>
> Greenie, glad to know your colonoscopy had a good
> outcome. My husband has been through 2 of them in less than 2 years. They
> insist he has blood in his stool, but both times they did a colonoscopy,
> endoscopy (down the throat and into the stomach), and he even swallowed the
> camera, just in case something was missed. All tests came back ok. That's
> good, but where is the problem???? His blood counts go down, indicating he is
> losing blood and they go through the same song and dance with no answers.
> Don't
> know what to do next. Get the breast thing checked out quickly. This, too,
> you
> will overcome, if it is indeed something. May be nothing. Now you know what
> all us women go through. Just kidding....a little levity is needed sometime.
> My thoughts and prayers are with you.
>
> Marty, I know you are out there
> somewhere and probably your wife is checking this site from time to time.
> Just
> know that we are all praying for you. I know that the operation you just had
> is
> probably the hardest thing you may have gone through.....I know the bone
> marrow
> transplant was no walk in the park. But you have added a few years since then
> and it stands to reason that we don't have the same "bounce back" that we did
> when we were younger. Just be patient and do whatever they tell
> you.....within
> reason. God bless and keep you!
>
> My husband, Wayne, has been on bosulif for a
> month now, after having to stop Sprycel in August because of pleural
> effusion.
> He is doing very well, so far. He is on a small dose (100 mg). He will go to
> see Dr Talpaz in Michigan the middle of April for testing. Then a few weeks
> later we will know if bosulif is working its magic.
>
> Joyce in
> IL
>
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