Thank you Steve for your quick response.
Yes, I did mean Zometa in that sentence. (I actually had an infusion
today and am having quite a bad reaction. Extreme headache, dizziness
and all around weariness. But I did want to know if anyone had been or
is using Zometa for PCa mets to the bone.) Because of the adverse
reaction I had from the beginning of the treatment the dosage was
reduced to 2 mg in 30 minutes instead of the 4mg in the 15 minutes
normally given. I'm back to the 4mg but still in 30 minutes.
Novartis was very interested in all the side effects I had from the
1st treatment and continue to be in contact with me about them. I was
given all the information about the jaw problems but since I have a
full upper and lower plate they didn't seem too concerned.
The side effects from the Eligard seem to be much greater than the
Zoladex, that's why I will be asking to go back to Zoladex.
> I have been on the 84-day dosage for osteoporosis from the ADT.
> Thank you Steve for your quick response.
>
[quoted text clipped - 3 lines]
>
> Bill
Bill, I'm a Z&Z guy (zoladex and zometa). I had a terrible time with
zometa the first time, then upon slowing down the treatment and my
body adapting to the med. I have had minimal problems the last 2
treatments. Make sure you're hydrated before and after the treatment
too - seems to help (lay opinion).
There is one other SE to zometa in additiona to the jaw bone concern -
it is kidney imparment and your Onc should be watching your
creatinine. The possible incidence rate for renal impairment is fairly
high (~23% after extended use). You should watch your baseline
creatinine and monitor for change. If your baseline was 1.0 you would
be considered to have impaired renal function if it rose to 1.5 as an
example. Of course, you would want to stop zometa before it your
creatinine got this high. Thee are papers on this (couldn't put my
hands on one immediately), but thought I better alert you to this if
you didn't already know.
Rich
billnjackie - 10 May 2007 16:20 GMT
Thank you Rich. Yes, I have blood work each time. They read that
before giving the infusion. I was also seeing the oncologist each
time for the 1st 4 months, then every other time and now it's every 3
months. Since I have severe osteoarthritis we need to make sure where
the pain is coming from. I not only drink lots of water before and
after but make sure I eat a good breakfast before going. Will you also
be on Zometa for life? My brother-in-law has multiple myeloma, had a
stemcell transplant using his own cells and they had him on Zometa for
close to 5 years. His Onc said it was the longest time he knew of for
a person to be on that. They took him off only because his bones were
becoming too hard. He never had a reaction of any kind.
I appreciate you and SteveJ for your concern.
Bill
Richbro - 11 May 2007 00:13 GMT
> Thank you Rich. Yes, I have blood work each time. They read that
> before giving the infusion. I was also seeing the oncologist each
[quoted text clipped - 11 lines]
>
> Bill
Bill,
Yes, my Onc said I would be on zometa for "life".
He originally said I would be on zoladex for life too and now he said
he was considering an occasional break.
Good luck - sounds like you're on top of things.
Rich
On May 10, Bill responded to me:
(snip)
> (I actually had an infusion today and am having quite a bad reaction.
> Extreme headache, dizziness and all around weariness. But I did want
[quoted text clipped - 5 lines]
> effects I had from the 1st treatment and continue to be in contact
> with me about them.
(snip)
That looks a lot like APR (acute phase response). According to Strum &
Pogliano, APR may manifest within 24-36 hours of the *first* infusion of
the 4 mg dose. It is characterized by fever, bone and muscle aches,
malaise and occasionally kidney damage. Therefore, Strum & Pogliano
recommend an initial dosage of one mg. Another famous med onc (Scholz)
uses two mg.
I wonder, though, whether Bill is really experiencing APR, as it seems
from his description not to be consistent with the above symptoms, and
he should not be experiencing it beyond the first infusion, anyway. I
hope that Novartis and the onc are being helpful, not just using Bill as
a lab rat.
My med onc had to be rather firmly directed that my initial dose would
be one mg. Later 4-mg infusions have all been given over a 30-minute
time span.
It is evident from that and from what I've read elsewhere that some oncs
(and certainly other medics) simply are unaware of this SE. That's why
we must be our own advocates.
The Strum & Pogliano I refer to above are the co-authors of _A Primer
on Prostate Cancer_ 2nd ed., subtitled "The Empowered Patient's Guide"
by medical oncologist and PCa specialist Stephen B. Strum, MD and PCa
warrior Donna Pogliano. It is available from the PCRI website and the
like, as well as Amazon (30+ five-star reviews), Barnes & Noble, and
bookstores. A lifesaver. I know.
> I was
> given all the information about the jaw problems but since I have a
> full upper and lower plate they didn't seem too concerned.
Good way to avoid problems.
But I'm told that denture users should make sure that the dentures are
well-fitted and not unduly pressing on the gums.
> The side effects from the Eligard seem to be much greater than the
> Zoladex, that's why I will be asking to go back to Zoladex.
For what it's worth (not much), I have experienced all three LHRH
agonists, Zoladex, Lupron (leuprolide acetate, same as Eligard) and
Trelstar. I hated Zoladex 'cuz (1) it hurt like the devil when the nurse
stabbed me in the belly with that railroad spike, and (2) I had severe
hot flushes. Lupron, in the buttocks, hurt hardly at all and produced
fewer hot flushes. Trelstar, also in the buttocks, produced somewhat
more hot flushes, which I stopped with Depo-Provera. However: each of us
is different and what helps A might harm B (and vice versa).
>> I have been on the 84-day dosage for osteoporosis from the ADT.
>
> I take it that your bone scans have been clear so far.
Nuclear bone scans plus the Pyrilinks-D (deoxypyridinoline) urine tests,
yes.
> May you never reach the point of needing it for bone mets.
I appreciate the sentiment. That time might very well come. Or maybe a
jealous husband will take me out..... (Don't I wish I was at risk
<<sigh>>).
Regards,
Steve J