Hi, Rob,
I very seldom post to this group, largely because I have enough
trouble just staying up to date reading the posts. I used to feel
very comfortable in cool or cold weather, until I got cml. Of course
I've also been getting older, and that affects our sensitivity to
temperature. When I went was diagnosed in 2000, I went on Hydraurea
and Interferon. Those of you who've been through that remember that
Interferon has every side effect in the book, so it was a relief to go
onto Gleevec in Feb. 2002.
We now know that Gleevec also has quite a variety of side
effects, and for me, anemia is one of them. So now I'm very sensitive
to cold. That includes cold hands and cold feet.
Another thing I want to ask EVERYONE about is vascular
circulation. Of course poor vascular circulation also makes us feel
cold more easily. In Oct. 2006 I got a small cut on one of my toes.
My doctor simply treated it as an infection and it got progressively
worse - becoming necrotic, with gangrene spreading to 3 other toes.
By the time I'd changed doctors and started to get proper treatment,
it had progressed to the point that I needed an angiogram, an
angioplasty for my leg. Then I needed to have two and a half toes
amputated. I've been going through this ordeal for over a year now.
It's limited my mobility and quality of life enormously.
1. I DON"T know if this condition is a result of taking Gleevec. If
other people have
had any similar experience, I'd love to hear about it.
2. JUST IN CASE there is a link between Gleevec and developing
peripheral vascular disease, if you get even a small cut on your foot
that doesn't seem to be healing right, get your vascular condition
evaluated right away. If your doctor discovers early enough that you
have this condition, he or she can do a lot to help you avoid what
I've been through.
Best wishes to all,
Rich
On Nov 9, 5:24 am, Rob <[EMAIL PROTECTED]> wrote:
> For any of you who may be interested in SKI-606 (bosutinib) clinical trials
> there is a list of the trial locations in the US, Canada, and Europe at the
> link below.
>
> http://clinicaltrials.gov/ct2/show/NCT00261846?term=bosutinib&rank=4
>
> Rob
> On Nov 8, 2007 12:08 PM, kristin <[EMAIL PROTECTED]> wrote:
>
>
>
> > That's interesting. I'm so sorry about the chills! I see Dr. Cortes at
> > MDACC and there was some talk about putting me on SKI 606 a few months
> > ago. The word out of MDACC is that there are fewer side effects from
> > SKI 606, but not everyone will react the same.
>
> > All best,
> > Kristin
>
> > On Nov 7, 4:21 am, zippimom <[EMAIL PROTECTED]> wrote:
> > > I'm not on Gleevec but SKI-606. I'm frozen! anything under 80 degrees
> > > and I have my hoodie on. My electric bill has went down $50 a month
> > > because I don't have the air condition as low as I use too. I don't
> > > know enough people on the SKI-606 trial to know if it is the SKI-606
> > > or just me.
>
> > > .
>
> > > On Nov 6, 11:35 am, kristin <[EMAIL PROTECTED]> wrote:
>
> > > > Hi Lee,
>
> > > > I have been on Gleevec since April 2001 and I have consistent problems
> > > > with cold fingers and toes. At first, it seemed to go through all of
> > > > my long bones as well, but that improved over time. My counts have
> > > > been consistently in the low normal or slightly low range. The
> > > > coldness is worsened in the winter. But I live in S. California, so
> > > > most of the time it's fairly warm. It may be CML, but I think it's
> > > > probably a Gleevec side-effect. Just my opinion.
>
> > > > All best,
> > > > Kristin
>
> > > > On Oct 31, 6:57 pm, Lee <[EMAIL PROTECTED]> wrote:
>
> > > > > Hi, everyone.
> > > > > My husband has CML, and has been on Gleevec for 2 months now. He
> > > > > is cold all the time! His hands and fingers ( extremities) are
> > always
> > > > > cold. (We live in South Florida where the temperature is around 80
> > > > > degrees or higher!) We are not sure if this is due to the Gleevec or
> > > > > the fact that he is slightly anemic. We are curious to know if
> > anyone
> > > > > else has experienced this. Thank you for your help and for being a
> > > > > wonderful source of information!
> > > > > Wishing you all the best.
>
> > > > > Lee- Hide quoted text -
>
> > > > - Show quoted text -
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