Do,Do,Do,Dooo; Do Do Do (Jeopardy theme)

Hi Everyone, This is Sibyl,

Stephi just got up and had a terrific
round-the-clock sleep. I was really
concerned yesterday because her
energy was non existent all day.
I saw her in a vertical position for no
more than 20 minutes.

She wants to take a shower, so I will
be changing the bandages over her catheter.
That is a rather involved process of masque,
Two separate glove changing, sterization,
tube cleaning, adhesive...Lots of touchy detail.
God wants me to learn patience, that is
abundantly clear.

Now, I can write about the experimental drug;
I was too upset on Friday.

As a person with a cancer for which autologous
stem cell transplantation is a recognized
treatment, Stephi has been invited to participate
in a compassionate use program of an
investigational drug, AMD3100.

A compassionate use program is similar to a
research study, but it is not considered a research
study by either the FDA or AnorMED Corp, the
manufacturer of AMD3100. Compassionate use
is a way to provide an investigational
drug to a patient who is not eligible to receive the
investigational drug in a clinical trial.
Compassionate use programs are offered to
patients who have life-threatening disease
for which other treatments are not available.
Although this is not a clinical trial, information
about Stephi that is collected from this compassionate
use program will be used for research purposes in
order to learn more about AMD 3100. HOWEVER,
AMD3100 has not yet been shown to be suffiently
safe, or effective in treating cancer, for the FDA
to approve it for use in patients with cancer.

An organization can support a research study,
or a compassionate use program such as this,
by either giving money or supplying a drug.
AnorMED is supporting this research by
providing AMD3100, fo free. (Probably
why Aetna approved..but I will tame my
sarcastic tongue.)

There are no set number of patients that
will be treated on this program. Each request
for compassionate use is determined on a
case-by-case basis by AnorMED Corp. On Friday,
May 2, If approved , Stephi will sign the
consent papers. Then there is a entire array of
tests she has to take early next week.

On Friday the 9th of May, Stephi will begin the
Neupogen shots again in the morning at 7 AM
(I will be banging gongs to wake her..this girl
has never been a morning person) That goes on
for four days, then on Monday night, May 12,
I have to take her to the hospital for a 10 PM
AMD3100 shot. The next morning, 7AM Neupogen,
a preliminary harvest (five hour procedure)
and then back in again at 10PM for another
AMD3100. Four days of two hospital visits
including a 7 AM shots and five hour harvest
then the 10 PM AMD3100 a day, then on
Friday the 16th a final Harvest.
On Saturday, the Bone Marrow Transplant
Team will determine if there are enough stemcells
to proceed. If so, She will be admitted on May 19
for Massive Chemo for two days, day of rest and
then reinfusion of clean stemcells on May 22. The
most dangerous days are, from what I gather, not over.
Rejection can still happen even though these are
Stephi's stemcells.

All the risks of AMD 3100 in combination with
Neupogen are legion and still to be determined.
We have no choice but to try. Please keep Stephi
close to your hearts and in
your thoughts and prayers.

Love,
Sib

A PS of HOPE from people in the
Myeloma Support group At KUMED:

Good Morning, Sibyl,

After reading your note about the
AMD 3100 yesterday I wrote one
of our BMT Support Group
members to see if that was the
medication her husband used for
his harvest. I just received Linda’s
response with her telephone number
so you can call and talk with her if
you like (see her note which I forwarded below).

I carbon copied Linda so she would
have your name and telephone number
as well. This may give Stephanie and
you some encouraging news as you go
through this time.

Sibyl Masquelier
Cell 207 450 2297

I hope you are able to attend our support
group meeting this week. (You Betcha')
Please let me know if I can help in any other way.

Sincerely,
Daryl

From: Linda
Sent: Tuesday, April 29, 2008 8:32 AMTo:
daryl.: Re: Question

Yes, Paul had it on a Monday night and
harvested the full amount on a Tuesday
which is unheard of. Also, Victoria,
who came to one transplant support meeting
had the same drug that Paul did. They were
able to harvest enough for one transplant for
her. We also know someone who used it a
year ago with good results. If Sibyl would
like to call us, feel free to give her our number.

I tried to get info about it online before
Paul received it, but didn't have much luck.
Our son-in-law is in med school and he
didn't come up with too much either.

Hope your appointment today goes well.


On 4/28/08, Daryl wrote:
Hi Linda,

I got a note from Sibyl today that said Stephi's
stem cell harvest failed. The plan is to use
AMD 3100 if they can get FDA approval.
If you don't mind me asking is this what Paul
ended up using? I thought if it was, and it is
alright with you, I could let Sibyl
know and it might encourage them.