Hi Jeanie.
I think we all have just become quiet on this site. I have received no mail
either. My husband is the CML patient. I am his caregiver. He is presently
taking Bosulif. I don’t know anything about Ponatinib, so I can’t help you.
But I, too, would be skeptical of getting meds from a place I didn’t know
anything about.
My husband was previously seeing Dr Talpaz in Michigan. We live in Southern
Illinois. So it was an expensive trip and as we have gotten older we found it
is just too much for us. We found a doctor at Siteman Cancer Center in St
Louis (50 miles from us) and started going to him. He is elderly himself.
The last 2 times we went we saw his PA. She seems good but certainly is not up
to Dr Talpaz standards. We fear that his new doctor may be slipping a bit and
they are keeping him from seeing patients. My husband is doing well as far as
CML goes. But time is taking its toll. He has very low energy. Don’t know if
that is the CML or the medication.
I hope you are feeling well. I know you have had some problems in the past. I
have been in this group since 2008. Seems most everybody is gone. Sad.
Joyce in Southern Illinois
> On Sep 16, 2019, at 10:52 AM, 'icandoallttc' via CMLHope
> <[email protected]> wrote:
>
> Hello
> I am not receiving any mail from group. Has this group shut down.
> Anyway Igor a letter in the mail saying AcariaHealth would handle my
> Ponatinib from now on. I never heard from them and think it’s fraud. Anyone
> else heard this. Hope everyone is great.
>
> My Motto:
> Faith and Pills
> With Love
> Jeanie
> 🐠free
> Christian
> 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
> July 2018 dx with thyroid disease tsh 13
> T4-normal t3-normal
>
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