Something else to think about

[vegas2cr]

18 months ago I was a normal woman who had a mammogram every year and a pap smear and a dexa scan for bone density.Well, we know that now I have stage IV ovarian cancer... so  My oncologist has me have a chest xray every 6 months and a mammogram every 6 months as part of my care... This last visit she wanted me to have a dexa scan.. well my dexa scan from 18 months ago showed perfect healthy bones, I am small framed usually underweight and the previous scan showed bones of perhaps a 45 year old instead of this old 59 year old..
I had my new dexa scan done Friday and doctor called to me I have severe osteoporosis in my hips and since I am going to the states.tomorrow. DON'T FALL DOWN...my spine is fine but both hips and my ankles are not... CAUSE;
CHEMOTHERAPY..  
If you have not had a recent dexa scan get one... they are fast non invasive and may save you much grief later on.. Now when I come back I can do the same commerical as Sally Fields... or perhaps another brand but I need medication, vitamin d and calcium..... Make sure you ask your oncologist about it.... R

[Kimchi]

Good advice!! You are lucky that your ONC is on top of everything.  I had to arrange for my own Mamogram (mammogram) (normal),  Bone Density test ( no problem but as a precaution my Ortho Surgeon put me on calcium with Vit D), Dental Check up (developed receeding gums due to CHEMOTHERAPHY).  Even my EYE Dr told me it's a good idea to have regular check ups cause OC has been known to spread there too.  
When my ONC noticed the results in my file, she apologized and admitted that Oncs tend to ignore other possible problems or routine check-ups.  

[bohan54]

Just a heads up, Boniva ate a hole in my friend's stomach.  Apparently it's not for everyone.

[vegas2cr]

Truthfully Sharon I would prefer not to take ANYTHING..But since I will have to do something I am thinking about the once a year IV...reclast.. but again there is another horrible side effect called osteonecrosis of the Jaw and many law suits are abounding.. I would love to find a way around this... I can not do strength training do to the fact the diabetic neuropathy in my legs and feet are so bad as to prohibit it...Scary stuff here... but I still think its important to be aware...

[Mary 53]

As you know, I have never had Chemotherapy. I believe I just read something a few weeks ago that spoke of a connection between Chemotherapy and bone loss, but I am sorry that I do not recall where I read that information.

I have had two bouts of bone loss. I reversed the loss two times. I was shocked when my first dexa scan was done (shortly after I broke a bone, my wrist, for the first time in my life) and it showed Osteopenia in both hips and spine. This was about two and a half years after my total hysterectomy.

I have exercised regularly since 1982 and had added weight training to the mix a few years before I was tested so I was quite surprised, to say the least.

For me, I correlated the bone loss to the abrupt loss of hormones from my surgery in 2000. And, I was on estrogen replacement, or perhaps the loss would have occured sooner. I will never know, but I am speculating.

I was also having a ton of arm bone pain around the time of my scan. I called to check to see if I could have an "arm bone scan" if there was such a thing. I then learned that there are two types of bone in our body and that both types are respresented by checking the density of either the hips or the spine. I hope I explained that well. It was something I'd wondered about, so I thought I would mention it.

It sounds like you are planning to take something to try to help with this situation. I did not have to go on the one med that was available at that time. I have heard good things about the newer medical interventions available. I have heard that some products can even build bone back.

I just wanted to mention that I added Magnesium to my night time routine after learning that this mineral is often way too low in many people. I certainly do not know if this is something you could or should take, but I wanted to mention it. In my case, I stepped up my exercise routine by making sure I did at least 10 to 15 minutes of weight lifting (just using 5 - 8 - 10 dumbells in my basement after learning correct form from a teacher). I did the weight lifting about four times a week, making sure to alternate so that the muscles get to rest for at least 24  hours before I work a specific set of muscles again. I also did/do aerobic (Rebok) stepping for about 20 min. to my favorite music... again, in my basement... several times a week. You mentioned Vit. D and Calcium. I used that, too. As I said earlier, I reversed a downward trend twice. My last scan (August, 2008) showed I was in the high end of "Normal" again for both hips and bone.

It is scary to get the news you got and so I just wanted to reach out to you and give, what I hope, are comforting words and hope so that you can try to prevent more bone loss. And, I will send my wishes and prayers to you hoping you can even reverse the loss. Hope this helped!

Mary

[Mary 53]

I was afraid this would happen and I would miss a critical post. I started to write my post to you an hour ago so I missed your comment that you have not been able to do strength training.

I wanted to ask if you could do some weight training, starting with 2 and then 5 pound weights in your arms? That would be a big help even if you were not able to do lower body weight training. To be honest, I mainly do exercises for my arms and kind of neglect the exercises for the legs ... I would rather do stretches in that area.

I aslo wonder if you could look into a program like "Oxycise"... I have had great results using Jill Johnson's deep breathing methods combined with tensing and strecthing certain parts of the body. She explains in depth how helpful these exercises are and how you do get an aerobic benefit. And, whether or not you are doing weight training, aerobic exercise, no matter how you are doing it, is going to build muscle/bone (Covert Bailey... "Fit or Fat"). You certainly can PM me if you want more info on this.

Take care,

Mary

[vegas2cr]

Thanks for all the good advice.  I am 59 and went through menopause at an early 43.  I was on hormones until my cancer diagnosis.. Every time I would try to go off of the hormones I would have awful hot flashes etc... anyway I am not even entirely not  convinced that perhaps all those years on the popular hormones did not indeed even cause my ovarian cancer..

I am really caught between the proverbial rock and a hard place because I have a frozen shoulder with a torn rotator cuff that I refuse to have surgically repaired.. I have had enough surgeries...so I refuse this one... I am going to talk to both of my doctors about adding magnesium...One of my doctors is much more informed on alternatives to pills.. He is an internist who does my acupuncture etc and does some homeopatic things..

I will tell you what... I have  had type 1 diabetes since I was 14 years old,  beating the odds on stage IV ovarian cancer so I guess this is just another bump in the road.... I will keep you posted and thanks again for the post... Ronni

[Tybear]

It really frustrates me that on top of everything we've all had to go through, osteoperosis just get's added to the list! I actually had to ask my doctor for a bone scan (had to remind him that I had no ovaries hence no estrogen supporting my bones) and low and behold, I had a bone density score of -2.2 in my spine - osteopenia, the precursor to osteoperosis. Talk about blowing me away! I had no idea...
I know I should be taking a supplement, but truthfully I haven't been. (yes, everyone yell at me now) It's so frickin hard though...all the pills and drugs we already put in our systems - now I have to add one more thing to it? I can't take estrogen replacement as my cancer is estrogen receptive and even with knowing all they do about my bone density, this issue seems to be the last thing on my doctor's minds. I guess their thought is, let's just fix the cancer first.
I just love having the body of someone twice my age....it's pretty bad that I have  more in common with my Grandma than I do with my girlfriends ;)
Becky

[Jan214]

Well this all sux pretty bad.  I guess I should have one.  I have always been told that I should have good bones, because I did weight bearing exercises so often, but maybe not.
Becky, it breaks my heart that you have to go through all of this. A pretty, young girl like you should not know exactly what it is like to feel like a Grandma.

[cirella]

Ronni, I'm so glad you got that scan.  Not for the results, though!  That isn't good.  Please don't fall!  Have a safe trip to the States.  Talk to you soon.  email me.
Love

[Aussie000]

I think you might be onto something about the HRT, my mother is also stage IV and she was on HRT for 15 years and was repeatedly told it was safe by her doctor, she is convinced this is how she got Ovca as now there is a proven link between the two. She has also had a frozen shoulder twice - obviously not related to HRT but very painful and took forever to heal. I'm sorry for what you are going through and I hope you continue to do well and win this battle, if you need any frozen shoulder tips I can ask her -  take care. Carolyn

[Brownie3321]

Great advice - thank you Ronni. Love, D

[JC145]

I am sure my bones are a mess since just before dx I had a scan and there were the  beginnings of trouble then.  Now with the chemo and tamoxifen messing with the estrogen, I need to get my backside moving and get a scan.  Thanks for the push, Jan.

[crecco]

Ronni,
   Thanks for bringing this to our attention. I see my onc next week and plan on bringing it up.
  I do not have the xrays and mammograms, but do have regular CT scans. As you know, I have been on chemo now for 3 years. I wonder why my onc has never suggested a bone density test run.
  I may be only 47 but I am sure that the chemo has played heck with my bones. I do know that I have developed arthritis since starting chemo and have been on arthritis meds for over a year.

  Becky, you may feel you have more in common with your grandma, but to all of us, you are no different than your girlfriends. On the other hand, I have been a grandma for 10 years now and still do not really feel like one.
  My age slapped me in the face real hard today. I had never even though about this until this evening, but I am OLDER than the president of the United States! OMG! How did that happen?

  I have made a note to take with me next week.
      Chris

[momofsandj]

Hi ---  My onc recently suggested a bone scan and I refused just because I don't want to deal with anything else other than chemo right now ----- I am taking a lot of vitamin D and calcium and will worry about the bone scan if I ever get into remission ---- I had one after my first series of chemo 5 years ago and was fine --- who knows what the other three series have done in the interim ---- however, in between i was on evista which apparently was originally an osteoperosis drug so maybe that helped somewhat --- it didn't stop a recurrence but what can you do.......

And, like Chris, at 49 I too am older than the president -- wow, hadn't even thought about it!  And Chris, you are so lucky you get to see your grandchildren ---- it was so hard for me to get pregnant and keep the pregnancy that my kids are 14 and 11 (and the 11 year old is adopted) ---- I hope I get to see my kids get out of high school.........

Jeanne

[vegas2cr]

What wonderful comments from everyone... For me this test was a necessity.. I limp due to diabetic neuropathy.. If I fall and break a hip it may never heal...I am in the states right now and will consult with my internist here and then both my doctors in Costa Rica.. I can not let this go...Unfortunately taking vitamins will not rebuild bones... so alas something else again for me to think about...

Since I have 3 doctors I will probably have 3 opinions.. I will let you know what they all say.... as I previously said my one doctor in Costa Rica is very inclined towards holistic and of course regular meds... will see...

I laughed as at 59 I am way OLDER than our new president..Everyone feel good.  

Ronni