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From: jon on 28 Aug 2006 17:14
Dear All,

It has been a long time since i was last on this board but i am in
trouble and have started looking for answers.

My osteo has been progressing from the -4.? in 1998 to the -3.2 that
it is now. I had been switched from fosomax to boniva in late 2005. It
seems i am now amidst osteonecrosis and the fun has began. I am
reading a lot about long term use of the fosomax class of drug causing
that and the overall diminishing returns from long term use of these
drugs.

My doctor (who was one of the original Forteo testers) has changed his
mind and now wants me on Forteo but i have declined, mostly because i
am afraid that in another few years - the cancer cause link will be
confirmed.

So i am looking for alternatives. One of my docs says evista while the
other says go back to fosomax. Both will add miacalcin to the mix
anyway.

For the record - i am a 55+ yr old white male with steroid induced
osteoporisis, the steroids were injected in a failed attempt to deal
with a severe chronic pain problem that will likely be with me the
rest of my life (*herniated T5 and L5).

I am open to any ideas, discussion, suggestions etc.

thanks

John M

From: ron on 28 Aug 2006 17:37
Hi John...A couple of thoughts and questions. If you are located in
Europe, there is a drug called Protelos (strontium ranelate) that
actually decreases bone resorption while increasing bone formation, a
nice combination. Like any drug it can have side effects, mainly GI.
If you are in the states, you might check with your doc and see if
there are any Protelos trials (I would hope the FDA is looking at it)
that you might enter. Otherwise the field is limited pretty much to
Forteo and bisphosphonates.

I'm curious if some other condition predisposed you to the
osteonecrosis? Data is just beginning to be collected on
osteonecrosis, but it seems that oral bisphosphonate usage contributes
to only a small percentage of the cases. More typically, individuals
with various cancers that interact with bone who are on IV
bisphosphonates such as zometa seem more prone to jaw necrosis. Just
wondering...Best wishes and good health, ron

jon wrote:
> Dear All,
>
> It has been a long time since i was last on this board but i am in
> trouble and have started looking for answers.
>
> My osteo has been progressing from the -4.? in 1998 to the -3.2 that
> it is now. I had been switched from fosomax to boniva in late 2005. It
> seems i am now amidst osteonecrosis and the fun has began. I am
> reading a lot about long term use of the fosomax class of drug causing
> that and the overall diminishing returns from long term use of these
> drugs.
>
> My doctor (who was one of the original Forteo testers) has changed his
> mind and now wants me on Forteo but i have declined, mostly because i
> am afraid that in another few years - the cancer cause link will be
> confirmed.
>
> So i am looking for alternatives. One of my docs says evista while the
> other says go back to fosomax. Both will add miacalcin to the mix
> anyway.
>
> For the record - i am a 55+ yr old white male with steroid induced
> osteoporisis, the steroids were injected in a failed attempt to deal
> with a severe chronic pain problem that will likely be with me the
> rest of my life (*herniated T5 and L5).
>
> I am open to any ideas, discussion, suggestions etc.
>
> thanks
>
> John M

From: Pam on 28 Aug 2006 19:50
Dear Jon: What do you mean by the following?

<snip>

"My doctor (who was one of the original Forteo testers) has changed his
mind and now wants me on Forteo but i have declined, mostly because i
am afraid that in another few years - the cancer cause link will be
confirmed."

I was on Forteo for about 4 months, with no appreciable side effects, but was
taken off of it temporarily due to a slightly elevated calcium level. I'm
hoping that I will be put back on Forteo, because my N-telopeptide test showed
bone turnover improvement in that short period of time. I don't have the
actually figures yet, but only know my T-score improved from -3.4 and -3.6.

I'm pretty sure you can't take Forteo if you have metastasized cancer, but I'm
not sure how you would qualify that if you have Osteonecrosis? Could you
explain the above Para, because I don't quite understand, unless you are
referring to metastasized cancer. Sorry not up on Osteonecrosis, and is it of
the jaw?

Good Luck...

Pam


"jon" <none(a)nomail.com> wrote in message
news:8om6f2pt2nqpse328kshu6acm5qdeu16pl(a)4ax.com...
> Dear All,
>
> It has been a long time since i was last on this board but i am in
> trouble and have started looking for answers.
>
> My osteo has been progressing from the -4.? in 1998 to the -3.2 that
> it is now. I had been switched from fosomax to boniva in late 2005. It
> seems i am now amidst osteonecrosis and the fun has began. I am
> reading a lot about long term use of the fosomax class of drug causing
> that and the overall diminishing returns from long term use of these
> drugs.
>
> My doctor (who was one of the original Forteo testers) has changed his
> mind and now wants me on Forteo but i have declined, mostly because i
> am afraid that in another few years - the cancer cause link will be
> confirmed.
>
> So i am looking for alternatives. One of my docs says evista while the
> other says go back to fosomax. Both will add miacalcin to the mix
> anyway.
>
> For the record - i am a 55+ yr old white male with steroid induced
> osteoporisis, the steroids were injected in a failed attempt to deal
> with a severe chronic pain problem that will likely be with me the
> rest of my life (*herniated T5 and L5).
>
> I am open to any ideas, discussion, suggestions etc.
>
> thanks
>
> John M
>


From: Larry on 28 Aug 2006 20:07
Pam ... Forteo has been associated with occurrence of cancer
(osteosarcoma) in lab rats. That is likely what he is referring to:

http://www.drugs.com/forteo.html

"As a part of drug testing, Forteo was given to rats. Some of these rats
developed osteosarcoma, a bone cancer. Osteosarcoma in humans is a
serious but very rare cancer. It is not known if humans treated with
Forteo also have a higher chance of getting osteosarcoma. Discuss with
your doctor the risks and benefits associated with use of Forteo."

http://www.medicinenet.com/21853

"Like most useful medications, Forteo may have its possible downside. In
animals, it promotes the development of osteosarcoma, a type of bone
cancer. In humans, osteosarcoma has not been reported but it remains a
concern with Forteo. (The daily injections are also a downside.)"

Larry E.

Pam wrote:
> Dear Jon: What do you mean by the following?
>
> <snip>
>
> "My doctor (who was one of the original Forteo testers) has changed his
> mind and now wants me on Forteo but i have declined, mostly because i
> am afraid that in another few years - the cancer cause link will be
> confirmed."
>
> I was on Forteo for about 4 months, with no appreciable side effects, but was
> taken off of it temporarily due to a slightly elevated calcium level. I'm
> hoping that I will be put back on Forteo, because my N-telopeptide test showed
> bone turnover improvement in that short period of time. I don't have the
> actually figures yet, but only know my T-score improved from -3.4 and -3.6.
>
> I'm pretty sure you can't take Forteo if you have metastasized cancer, but I'm
> not sure how you would qualify that if you have Osteonecrosis? Could you
> explain the above Para, because I don't quite understand, unless you are
> referring to metastasized cancer. Sorry not up on Osteonecrosis, and is it of
> the jaw?
>
> Good Luck...
>
> Pam
>
>
> "jon" <none(a)nomail.com> wrote in message
> news:8om6f2pt2nqpse328kshu6acm5qdeu16pl(a)4ax.com...
>
>>Dear All,
>>
>>It has been a long time since i was last on this board but i am in
>>trouble and have started looking for answers.
>>
>>My osteo has been progressing from the -4.? in 1998 to the -3.2 that
>>it is now. I had been switched from fosomax to boniva in late 2005. It
>>seems i am now amidst osteonecrosis and the fun has began. I am
>>reading a lot about long term use of the fosomax class of drug causing
>>that and the overall diminishing returns from long term use of these
>>drugs.
>>
>>My doctor (who was one of the original Forteo testers) has changed his
>>mind and now wants me on Forteo but i have declined, mostly because i
>>am afraid that in another few years - the cancer cause link will be
>>confirmed.
>>
>>So i am looking for alternatives. One of my docs says evista while the
>>other says go back to fosomax. Both will add miacalcin to the mix
>>anyway.
>>
>>For the record - i am a 55+ yr old white male with steroid induced
>>osteoporisis, the steroids were injected in a failed attempt to deal
>>with a severe chronic pain problem that will likely be with me the
>>rest of my life (*herniated T5 and L5).
>>
>>I am open to any ideas, discussion, suggestions etc.
>>
>>thanks
>>
>>John M
>>
>
>
>
From: Larry on 28 Aug 2006 20:10


ron wrote:

> Hi John...A couple of thoughts and questions. If you are located in
> Europe, there is a drug called Protelos (strontium ranelate) that
> actually decreases bone resorption while increasing bone formation, a
> nice combination. Like any drug it can have side effects, mainly GI.
> If you are in the states, you might check with your doc and see if
> there are any Protelos trials (I would hope the FDA is looking at it)
> that you might enter. Otherwise the field is limited pretty much to
> Forteo and bisphosphonates.
>
> I'm curious if some other condition predisposed you to the
> osteonecrosis? Data is just beginning to be collected on
> osteonecrosis, but it seems that oral bisphosphonate usage contributes
> to only a small percentage of the cases. More typically, individuals
> with various cancers that interact with bone who are on IV
> bisphosphonates such as zometa seem more prone to jaw necrosis. Just
> wondering...Best wishes and good health, ron

Actually, there has also been an association in these patients between
osteonecrosis and steroid usage. In other words, many of the patients
who came down with ONJ not only were treated with bisphosphonates, but
also with steroids.

Larry E.
>
> jon wrote:
>
>>Dear All,
>>
>> It has been a long time since i was last on this board but i am in
>>trouble and have started looking for answers.
>>
>>My osteo has been progressing from the -4.? in 1998 to the -3.2 that
>>it is now. I had been switched from fosomax to boniva in late 2005. It
>>seems i am now amidst osteonecrosis and the fun has began. I am
>>reading a lot about long term use of the fosomax class of drug causing
>>that and the overall diminishing returns from long term use of these
>>drugs.
>>
>>My doctor (who was one of the original Forteo testers) has changed his
>>mind and now wants me on Forteo but i have declined, mostly because i
>>am afraid that in another few years - the cancer cause link will be
>>confirmed.
>>
>>So i am looking for alternatives. One of my docs says evista while the
>>other says go back to fosomax. Both will add miacalcin to the mix
>>anyway.
>>
>>For the record - i am a 55+ yr old white male with steroid induced
>>osteoporisis, the steroids were injected in a failed attempt to deal
>>with a severe chronic pain problem that will likely be with me the
>>rest of my life (*herniated T5 and L5).
>>
>>I am open to any ideas, discussion, suggestions etc.
>>
>>thanks
>>
>>John M
>
>
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