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Michelle - 22 Oct 2005 21:01 GMT

I haven't been able to get into newsgroups for a long time, so haven't
posted. I'm back-dooring it in here now to ask for your thoughts.
Here goes: First diagnosis 1994 at age 36, stage II, had lumpectomy
with 1 positive node. Did chemo, radiation, 5 yrs tamoxifen. Six
years after original diagnosis, had chest wall recurrence. Had it
removed sugically, then more radiation, lots more chemo, continuing
high tumor marker. Then after taking Xeloda for a while, it finally
went into remission and I stopped all chemo. About 7 months later had
high tumor marker and found a spot on my spine. Did Cyberknife for
that, and as soon as that was gone, it showed up in my chest wall and
lung. Did more Xeloda and it went away, with continuing high tumor
marker. Stayed on Xeloda for about 1 1/2-2 years with high tumor
marker throughout, but no spots showing up, and Dr. said I should go
off it as that is too long to be on chemo. Went off it about 6 months
ago and, of course, it came back-again in the chest wall and lung. Now
that it's back, Dr. would like to try bone marrow transplant as a
chance (a small chance, but nonetheless a chance) of a long term
solution to this. I saw the bone marrow Dr. about 4 months ago in
preparation for this and got a lot of information. He agreed with my
oncologist and said that it would be worth trying once it comes back.
I'm seeing him again on Monday and will probably start the fight with
the insurance company shortly thereafter. Has anyone out there had any
experience with this--good, bad, or indifferent? I've already asked
lots of questions, but would like to here yours to be sure I've thought
of everything. Sorry for the long post and thanks for your input.
Michelle

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Tim Jackson - 23 Oct 2005 10:09 GMT

> I haven't been able to get into newsgroups for a long time, so haven't
> posted. I'm back-dooring it in here now to ask for your thoughts.
[quoted text clipped - 22 lines]
> of everything. Sorry for the long post and thanks for your input.
> Michelle

Are we talking about HDC here, where they make an autologous bone marrow
transplant? In layman's terms, they take some of your bone marrow out,
give you a dose chemotherapy that is high enough to kill off your bone
marrow (and hopefully the cancer), then put your "rescued" marrow back.

I don't know anyone who has had that treatment, but I know the trial
results were not encouraging. In many cases the long term or lethal
side effects outweighed any benefit in cancer reduction.

However I can see the argument that with metastatic disease that is
proven responsive to chemotherapy, you would be as likely as anyone to
benefit from it.

Tim Jackson

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Michelle - 23 Oct 2005 18:18 GMT

Yes, my understanding of this so far is that they remove ALL of your
bone marrow, separate it out somehow, put part of it back in, then
freeze the rest. Then they give a very high dose of chemotherapy that
kills everything, then thaw the frozen marrow and put it back in.
Apparently doing this gives the patient a 20% chance of being cancer
free long term. What is long term? I don't think they know yet.
They're finding that of the women that had this procedure in the 90's,
about 20% are still cancer free. To have this procedure done, you have
to have evidence of the disease and be healthy enough to withstand the
effects, so time is of the essence so to speak. I have been told that
with the new medical drugs/procedures, etc., no one has died of the
actual procedure in over 10 years.
Michelle

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A. P. Thorsen - 24 Oct 2005 20:20 GMT

...

> Stayed on Xeloda for about 1 1/2-2 years with high tumor
> marker throughout, but no spots showing up, and Dr. said I should go
[quoted text clipped - 8 lines]
> the insurance company shortly thereafter. Has anyone out there had any
> experience with this--good, bad, or indifferent?

FWIW, I know someone who was diagnosed very young (32?) at Stage IV
(IIRC, cancer cells in lymph nodes other than axillary, not sure just
where). She had not one but TWO bone marrow transplants, which was
very, very rough. However, she is about 5 years past that now, and
still NED. Not sure of the insurance issues. I could ask her questions
if you have specific ones.

Ann T.
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Pat from Apple Valley, CA - 24 Oct 2005 22:32 GMT

Michelle,
    I have a few questions about your side effects to the Xeloda. I know
they will be different for everyone, but I am to start getting it
(Xeloda) tomorrow after just having Doxil. Doxil has about the same
sides. Hand and foot syndrome and skin problems, which I had quite
badly. I really haven't read much about it, I have had sooooo many
chemo's that it doesn't matter much any more, but I just wondered how
you handled it. My numbers haven't gone down for the last 2 types and I
don't hold out much hope for this one either. (tho I have heard it can
do miracles) My CA27/29 test comes out to be around 2600. This will by
my 5th type of chemo since having a Stage IV diag. I just hope I stay
reasonably energetic. I can't see continueing if I don't have the energy
to walk across the kitchen..Like one of them did..
    Continueing the good fight!!!
    Thanks,
    Pat from Apple Valley, CA

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Michelle - 27 Oct 2005 05:01 GMT

Wow, sounds like you've really had a rough time of it, Pat. The main
effects I had with Xeloda were the hand/foot issues. Other than that,
it didn't really effect me negatively. It did seem to keep my cancer in
control.

That being said, I did meet with the bone marrow dr. Monday and will
not be doing the transplant at this time. He said it would help to do
more Xeloda, then show the insurance company that standard chemo works
for me. He said that may get them to pay for the transplant, but the
chances are very, very slim. Apparently they pretty much never use
that treatment for patients with breast cancer recurrences, so
insurance companies are not on board with this as a treatment. Ann,
when did your friend have hers? After initial diagnosis, then after
recurrence?

So, on to more Xeloda and who knows where that will take me. Both my
onc and this bone marrow dr. told me that it's remarkable that I'm
still alive...and doing so well! Strange thing to hear from someone.

So that's my story for now.
Michelle

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A. P. Thorsen - 27 Oct 2005 14:52 GMT

> Wow, sounds like you've really had a rough time of it, Pat. The main
> effects I had with Xeloda were the hand/foot issues. Other than that,
[quoted text clipped - 10 lines]
> when did your friend have hers? After initial diagnosis, then after
> recurrence?

It was after initial diagnosis -- she was already at stage IV at that point.

Ann T.
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Pat from Apple Valley, CA - 27 Oct 2005 19:42 GMT

> Wow, sounds like you've really had a rough time of it, Pat. The main
> effects I had with Xeloda were the hand/foot issues. Other than that,
[quoted text clipped - 17 lines]
> So that's my story for now.
> Michelle

Well I am on day 2, and so it is still early for me. I had quite a lot
of Hand and rash under the arm on my sleeping side with the Doxil, so I
might probably be a candidate for it again, then again maybe not. I am
to go to the Getty Museum this weekend with the family and hope to be up
to it. We have been planning it for a year or more. Wish we would have
gone then, before my stage IV diag.
    I checked on the Tomo Therapy Clinical Trial at "City of Hope". It was
High dose chemo followed with stem cell transplant then High dose Tomo
radiation. They were looking for newly daig. stage IV's who responded
well to chemo..Not one worn out like me...
    Hope I rtespond as well as you to the Xeloda...
    Pat from Apple Valley, CA

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