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Fosamax -- Pros and Cons
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DeeDee View Drop Down
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    Posted: Mar 06 2009 at 6:02pm
Hi -- I am currently taking the Fosamax generic, Alendronate, (I had been on Actonel for several years) and I have been hearing some bad things about these drugs. I am wondering what other TNBC women are doing, what side effects you have had, and what your doctors are telling you?

Donna R.
dx Nov.7, 2007
Lumpectomy Nov 15, 2007
1.05cm. stage 1 grade 2
sentinel lymph nodes neg.
chemo AC 4 treatments
30 rads ended April 2008
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Nancy View Drop Down
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Points: 3814 		Post Options Post Options   Thanks (0) Thanks(0)   Quote Nancy Quote  Post ReplyReply Direct Link To This Post Posted: Mar 07 2009 at 1:50pm
Bumping this forward for DeDee.
 
I know that there are women on this med, and DeeDee wanted to know how you are dealing with it in light of all the lawsuits for dead jaw syndrome.
nancy
Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008
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Cheryl51 View Drop Down
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I'm curious as to what the issues are.  I took Actenol and then switched to the same generic fosamax due to the high cost of Actenol.  I haven't had any problems with either medication. 
Cheryl
Diagnosed 3/07, Stage IIB, Grade 3, 2/10 nodes positive
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DeeDee View Drop Down
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Hi Cheryl

I am just interested in finding out how many of the women are taking these meds and if they have had any problems. I was happy with the Actonel but I am now on Medicare and when the new drug formulary came out for this year they had moved Actonel to a higher tier which meant that I would have to try the Fosamax generic and then would need my doctor to fill out a bunch of forms for my case to be reviewed.

I personally know one woman who has problems with her jaw and has to have her teeth pulled on one side. They can't do implants because of the condition of her jaw. Another friend had problems with A-fib which did not clear up until she stopped taking Fosamax. I have heard of women whose doctors told them they (the Dr.s) would never consider having them take Fosamax.

But -- I think some doctors feel it is beneficial to take, especially during chemotherapy.

I plan to discuss all of this with my oncologist when I see him in April but was hoping for more information before I saw him. I have not any problems with either medicine so far.

Donna R.
dx Nov.7, 2007
Lumpectomy Nov 15, 2007
1.05cm. stage 1 grade 2
sentinel lymph nodes neg.
chemo AC 4 treatments
30 rads ended April 2008
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Nancy View Drop Down
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Points: 3814 		Post Options Post Options   Thanks (0) Thanks(0)   Quote Nancy Quote  Post ReplyReply Direct Link To This Post Posted: Mar 07 2009 at 4:33pm
Cheryl,
 
There are many lawsuits now for the dead jaw sydrome. Here are a few links.  Ok...more than a few. I know that I am concerned.
Nancy
 
 
 
 
 
 
 
 
 
 
 
 
 
 
Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008
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cg--- View Drop Down
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Points: 1379 		Post Options Post Options   Thanks (0) Thanks(0)   Quote cg--- Quote  Post ReplyReply Direct Link To This Post Posted: Mar 07 2009 at 5:05pm
In our efforts to stop taking hormone replacement therapy so we would not get breast cancer (boy did that backfire!), we gave up estrogen/progeserone replacement...which does impact on the quality of our bones, and many other things in our bodies as we met menopause cold turkey!
 
This gave a perfect opportunity for the drug companies to tap into this market...huge and we have a family of bisphosphonates that was sold to us as the next thing to take care of our bones.
 
There was a dentist on Long Island that noticed 5 or 6 women in his practice that had terrible jaw pain, open areas that would not heal and the common denominator was they were all taking a bisphosphonate....that led to warnings going out about the problem of osteonecrosis of the jaw.
 
They were then prescribed for women with breast cancer and  currently many trials are going on now in the States to see if they will stop the spread of cancer to bone and in some cases to stop spread to the organs.  Preliminary studies suggest they do and for the past ten years interest has been expressed in the bisphosphonates (except for a study in Italy showed no benefit).
 
If they do not work to stop the spread...they do help with the terrible bone pain from bone metastases and if a woman has a bone metastasis the bisphosphonate encircles it and makes the bone stronger so the bones do not fracture so easily.
 
BUT the downside to the bisphosphonate is the long time they stay in our system even after we stop taking them....in the case of dental extraction.  I experienced this after my fall in June when I broke my shoulder and broke a tooth that had to be removed.  I came off the clodronate I have been on since last March...and I waited a month before my tooth was removed....I have had teeth removed before. No problem. Healed up and got the replacement and away I went....Not so this time...months and months passed and it would not heal.  It was more than 4 months before the area was healed so that I could have a partial made. In retrospect I was very lucky I did not end up with an open unhealed jaw bone and was not in the excruciating pain that is  reported following extended bisphosphonate use.
 
 
This is probably more information than any one needs - but it took the bisphosphonate makers a long time before they would even acknowledge this was happening and a long time before they put warnings in the product information.
 
Connie
 
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DeeDee View Drop Down
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Points: 33 		Post Options Post Options   Thanks (0) Thanks(0)   Quote DeeDee Quote  Post ReplyReply Direct Link To This Post Posted: Mar 07 2009 at 5:19pm
Connie

Thank you for the input. We need to be informed so we can make intelligent decisions. I don't think many women are aware of this. I became more aware when a good friend -- a breast cancer survivor but not TNBC -- started bugging me (in a nice way) last month about this issue. She had heard more about the femur fractures and was concerned for me.

Donna   
dx Nov.7, 2007
Lumpectomy Nov 15, 2007
1.05cm. stage 1 grade 2
sentinel lymph nodes neg.
chemo AC 4 treatments
30 rads ended April 2008
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