Osteoporosis, Osteonecrosis, and Other Degenerative Diseases

[dawnmarie]

Kathy: The treatment left me with osteoporosis and "osteo-necrosis." It is possible that I was on the way to osteoporosis prior to treatment. The osteo-necrosis is a horrible word - the radiation killed the blood vessels in my sacrum so the bone is dead - explains why I have had several spontaneous fractures. In a nutshell:

1. they would like me to go on HRT (hormone replacement therapy) rather than the effexor. I thought I could not do HRT because my mother had ovarian cancer. Several years ago there were studies connecting HRT to higher incidence of breast cancer. Breast cancer and ovarian cancer can be caused by the same gene. The test group was still producing estrogen. I don't produce estrogen since my ovaries were fried by the radiation. The non-producing estrogen group is safe to use HRT for up to five years. The HRT will help with building bone and help with the nasty hot flashes, dry vagina, sleeplessness, etc.

2. If I don't want HRT (will still need to do more research), they want me on reclast which is done once or twice a year. The reclast is more efficient that fosamax.

3. The real name brand fosamax (with vitamin D) is more effective than the generic one. Ask you doc for the real one.

4. Recommended a pain clinic for chronic pain due to the osteo-necrosis.

5. Recommended physio therapy to help with the stiffness and reduced mobility in the hips and lower back.

6. Lots and lots of info on fracture-prevention. quite interesting.

7. Weight bearing exercise however forward motion/bending can cause fractures.

I will post a long explanation of my 5-specialist visit on a separate topic.

A little cooler in Thunder Bay
A great day to weed my flower garden

Dawn Marie

[sharon]

they want me on reclast which is done once or twice a year. The reclast is more efficient that fosamax.

My endo doc also wants me on reclast. The bones are pretty bad, but I am really concerned because this is such a new drug. After the research study of the long term usage of bisphospinates that said there were negative effects over the long haul, I am concerned. I am also concerned because reclast has some elimination problems. From RXList.com:
"Treatment with intravenous bisphosphonates, including zoledronic acid, has been associated with renal impairment manifested as deterioration in renal function (i.e., increased serum creatinine) and in rare cases, acute renal failure. "

The long term effects of this will only be known after a while on the market. I REALLY need to be on something for my osteoporosis because I have a triple wammy - osteoporosis, osteoarthritis (since age 19), and a bone degenerative disease caused by my radiotherapy treatments. But, I really dread causing any further medical problems - I have more than enough already.

[sharon]

Many of us who have had cancer acquire premature or fast developing bone diseases. In my case, I have multiple bone degenerative diseases, but I have been told by my oncos that one of them was caused by my radiotherapy treatments. Not sure if I was more susceptible because I had osteoarthritis since age of 19. I am going to add some topics that others have posted about their own experiences with this, here and I hope that you share your own info.

Note: This will be a publicly viewable topic.

[mp327]

Sharon--

I'm glad this discussion has included Reclast, as it was recommended to me by an endocrinologist. However, I said no, based on research that I did that made me leary of taking this drug. It can cause necrosis of the jaw, for one thing. Given that I have peridontal disease, I was concerned to hear that. I also heard recently that long-term use of drugs such as Reclast can actually have a negative impact on bone health, which I think is essentially what you are saying. I was not aware of the renal problems that can be associated with its use, so I am very glad to know this and even happier that I rejected using this drug. My creatinine levels have been running high. As a matter of fact, I just went for blood work on Friday to have kidney function levels tested again. My internist said that if they do not return to normal levels, then she is referring me to a nephrologist. I did some checking and found that one of the side effects of Mitomycin can be kidney damage, so anyone who has gotten Mito should be aware of this and have their doctors keep an eye on their kidney function.

Thanks for your input on this discussion.

Martha

[mp327]

Thanks Sharon! Due to the fact that mitomycin is one of the chemo drugs used to treat anal cancer and can cause kidney damage, I think it's important to make everyone on this forum aware!

[sharon]

We know that osteoporosis can occur prematurely in patients who have undergone some regimens of chemotherapy. Bone degenerative diseases can occur or escalate as a result of some radiotherapy treatments. If you know of any other bone dieases that occur or escalate as a result, or you have experienced any as a result of your cancer or it's treatments, please let others know by sharing that info, publicly, here.

Osteonecrosis AKA: Aseptic necrosis, Avascular necrosis, Ischemic necrosis
Osteonecrosis occurs when your bones lose their blood supply. The bones die and eventually collapse, leading to pain and arthritis. You can have osteonecrosis in one or several bones.

Osteoporosis
Osteoporosis makes your bones weak and more likely to break. Anyone can develop osteoporosis, but it is common in older women. As many as half of all women and a quarter of men older than 50 will break a bone due to osteoporosis

Osteoarthritis AKA: Degenerative joint disease, OA, Osteoarthrosis
Osteoarthritis is the most common form of arthritis. It causes pain, swelling and reduced motion in your joints. It can occur in any joint, but usually it affects your hands, knees, hips or spine.

[debjo]

I had ER+ invasive ductal carcinoma in the same breast as the adenoid cystic carcinoma. My oncologist ordered a bone density test at the beginning of chemo and it was normal. After chemo I was put on Arimidex because of the ER+ cancer. After being on Arimidex for eight months I had another DEXA scan and was diagnosed with osteopenia. I have been getting IV infusions of Zometa every six months for two years. The first infusion "knocked me off my feet" but I tolerate it well now. I had another DEXA scan last Thursday and should get the results today.
There is a chance of osteonecrosis of the jaw with the Zometa but it's related to invasive dental procedures. I had some dental work done in the spring but checked with my oncologist's office before the procedure. There is a time frame between Zometa infusions to have the dental work done.
There has been information about vitamin D deficiency lately and my oncologist has been testing his patients' vitamin D levels. I would suggest that you ask your doctors about this if they haven't ordered that for any of you.
I expect to get the Zometa for another 2+ years at least since I have about 2 years, 3 months left on Arimidex. It's hard to deal with taking a drug for one condition and then taking another drug to deal with the condition caused by the first drug and then wondering what's next but I want to stay as healthy and strong as possible. They do blood work before every Zometa infusion and check my creatinine levels. So far I've had no kidney problems.