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Topic: Bone Density Scans

Forum: Bone Health and Bone Loss —

Talk with others about bone density, osteopenia and osteoporosis, and ways to keep your bones strong

Posted on: Dec 11, 2014 10:21PM

Musical wrote:

I've been making inquiries about a BDS as I'm over 2 years down the track from my last one which I had to fight tooth and nail to get. Ive been on Arimdidex about 3 years. Today my Doctor passed on a message from the BC nurse, that bone loss only occurs within about the first year. Has anyone else heard this?
Psa 119:105 NUN. Thy word is a lamp unto my feet, and a light unto my path. (KJV)
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Dec 12, 2014 07:49AM doxie wrote:

Seems like a situation in which a patient needs to drop a research paper stating otherwise onto the MO's lap. I'm sure there are dramatic drops for some patients - chemopause, natural menopause, or ovaries shutdown- in the first years, but those of us already post meno have different trajectories.

If he is resistant, can you get it ordered through your PCP? Before BC and AIs I was getting DEXAs each two years. Back on that schedule now that my more recent scan showed me stable after 1.5 yrs on AIs.

Dx 8/2011, IDC, 1cm, Stage IA, Grade 2, 0/7 nodes, ER+/PR+, HER2- Surgery 9/1/2011 Lumpectomy: Right Hormonal Therapy Aromasin (exemestane) Radiation Therapy Chemotherapy Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Dec 12, 2014 06:11PM Musical wrote:

Hi doxie, thanks for your thoughts. Im in NZ, not sure what a PCP is. Are you aware of any research papers I could access? (which SHOULD make no difference no matter where we are from) I think our medical system is more "resistant" because of where things are funded. US is very different to our system. My Doctor is pretty good and has been willing to work with me on things. It sounds like the BC nurse is the one who needs some documentation.
Psa 119:105 NUN. Thy word is a lamp unto my feet, and a light unto my path. (KJV)
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Dec 12, 2014 07:20PM doxie wrote:

PCP in the US is the primary care physician as apposed to a specialist. Sometimes a general practitioner, internist, or family practitioner in the US.

Sorry, I don't know a research paper, since I've not researched in this area. Maybe your national health service will have a web site with standard care.

Dx 8/2011, IDC, 1cm, Stage IA, Grade 2, 0/7 nodes, ER+/PR+, HER2- Surgery 9/1/2011 Lumpectomy: Right Hormonal Therapy Aromasin (exemestane) Radiation Therapy Chemotherapy Cytoxan (cyclophosphamide), Taxotere (docetaxel)
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Dec 23, 2014 12:11PM Momine wrote:

Musical, I had my ovaries removed after chemo and then started femara. When I was DXed, I was not yet in menopause, but getting close (47 years old).

My docs are pretty vigilant about monitoring my bone density. Initially (first year) the bone density on my hip took a real dive, but then it stabilized and since it was better than normal to begin with, nobody is concerned. It is now just a tad below normal, but not osteopenic. This would seem to support your nurse's assumption.

However, my spine started at -1.6, so already not so great. It did not nosedive like the hip, but it has gotten steadily worse over the last 3 years. One of my vertebrae is now all the way into osteoporosis territory.

I have seen bits and pieces here and there (can't remember specific sources) that seem to suggest that femara is particularly hard on the spine. No idea why. But it seems to me that anyone on femara should have a DEXA every year or at least every other year. Also both hip and spine should be measured.

Dx 6/1/2011, ILC, 5cm, Stage IIIB, Grade 2, 7/23 nodes, ER+/PR+, HER2- Chemotherapy 6/20/2011 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Surgery 9/13/2011 Mastectomy: Left, Right Radiation Therapy 1/9/2012 Surgery 3/8/2012 Prophylactic ovary removal Hormonal Therapy 4/1/2012 Femara (letrozole)
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Dec 23, 2014 02:42PM Musical wrote:

Thank you Doxie and thanks Momine for weighing in on this. I did 2yrs on Tamox before Arimidex. I had a baseline BDS and I think it was just before chemo. That scan showed me slightly above average. Also, I was told one good Sd fx of Tamox is that it actually helps BD a little. I WISHED I had a scan before starting the AI, and I had to fight like crazy to get it, but I was some months down the track. It was then it showed a little loss in the neck. Im assuming a DEXA is the same as a BDS?. Mine was just called a BDS. I'm still waiting to hear back about getting one and nothing. If they keep giving me the fobb off I'll pay out of pocket.

My Doc said a few months back about being keen to keep me on the AI and then said about the BC nurse saying I was ready to come off it. Im starting to realize what it is to feel like those who are in this camp and feeling a bit nervous.

Really interesting what you are saying about Femara. I ALMOST was going to go on that but my SdFx abated and I was doing good. Recently I've had them come back sporadically but to a lesser degree and it certainly is doable. Im happy to stay on it.

Psa 119:105 NUN. Thy word is a lamp unto my feet, and a light unto my path. (KJV)
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Dec 25, 2014 04:48AM Momine wrote:

Musical, I am pretty sure the BDS is a DEXA, i.e. the same kind of scan.

As for femara, I should have said AI. I think the pattern is typical of the AIs generally. It sounds like there is some confusion at your doc's office, the way I read it. That nurse needs to read more if she is going to have such categoric opinions about things. As for staying on the meds, the latest research does show that extending the use of hormone treatment is a good idea.

What is SdFx?

Dx 6/1/2011, ILC, 5cm, Stage IIIB, Grade 2, 7/23 nodes, ER+/PR+, HER2- Chemotherapy 6/20/2011 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Surgery 9/13/2011 Mastectomy: Left, Right Radiation Therapy 1/9/2012 Surgery 3/8/2012 Prophylactic ovary removal Hormonal Therapy 4/1/2012 Femara (letrozole)
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Dec 25, 2014 07:40PM Musical wrote:

Momine, I think its much of a muchness with the 3 AI's, though some women have changed and done better and conversely others have done worse. Nothing's totally sure in this game.

SdFx? Ooops that's just a hangover from audio recording terminology... the fx part being short for "effects" as in reverb, delay, compression, and many other acoustical treatments. It's just my shortened version of side effects.

Well I think I'm going to talk to my GP again (Doctor) and say I want to stay on it. We've not long heard in NZ they're going to cut the health budget by over $200million. They'll not leave a stone unturned in finding ways to let you fall through the cracks. This trend unfortunately has been happening a while.

Psa 119:105 NUN. Thy word is a lamp unto my feet, and a light unto my path. (KJV)
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Apr 5, 2015 05:05PM littlebird75 wrote:

Musical - did you get that next bone density scan? I too had to fight - I had a baseline scan then nothing for 4 years. I started to have fractures (for no reason in some cases) and had to beg to get another scan. My MO kept insisting my bones were strong at the start and he was sure what was happening had nothing to do with my AI's. He strongly encouraged me to continue to the use. I stopped taking them a year early.

The scan I finally got showed: Therefore, at present, significant osteopenia is noted at the spine and hips; there is currently increased risk of fracture as predicted by bone mineral density at the spine and hips. Over the past nearly 4 1/4 years there has been a significant decrease in BMD at the spine, and a significant decrease in BMD at the hips.

Cindy - living, loving and laughing never meant more! Dx 9/11/2009, IDC, Right, 2cm, Stage IIB, Grade 2, 0/1 nodes, ER+/PR+, HER2- Hormonal Therapy 5/31/2010 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 2/1/2011 Arimidex (anastrozole), Aromasin (exemestane) Surgery 3/17/2011 Prophylactic ovary removal Surgery 12/21/2014 Reconstruction (left): Fat grafting; Reconstruction (right): Fat grafting Surgery 3/17/2015 Surgery
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Apr 9, 2015 06:05AM Musical wrote:

Littlebird, I haven't heard anything back yet. My DHB (District Health Board)is one of the worst in the country performance wise and as such, has been getting some bad press. Life has so many things going on lately the BDS follow up just keeps getting pushed in the background. I really need to do something about it and call them AGAIN. Im so sorry you have significant osteopenia. It doesn't make it easier when you've got to fight to be heard. Ive found, keeping moving does help, though I'm no fitness freak and a lot of it hasn't been easy. I do about 2 miles a day. I've also heard it recommended again and again about prunes and how amazing they are with bone density. I've also been eating a steady helping of those for a number of months now. Reckon I've had about 3 or 4 falls in the last year or so. None of them too bad and I've seemed to come out of those OK.
Psa 119:105 NUN. Thy word is a lamp unto my feet, and a light unto my path. (KJV)
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Apr 17, 2015 01:35AM karen1956 wrote:

I had baseline DEXA scan following chemo and I was osteopenic.....while on AI's, onc ordered annual DEXA scans...after a year on the meds, I was osteoporosis....started on Actonel (biopshosphonate) and bones improved and went back up to osteopenic. When I quit AI's after 3 1/2 years I stopped Actonel...Two years later I was osteoporosis....another 3 years later (5 years after stopping AI's), my bones are still declining but it is slow. My pcp a couple years ago did not want me on biophosphonates as they are now saying only 10 years and I had taken them for 3 years plus she said she would rather me be on them in my 70's than in my 50's. I need to see my pcp to follow up on the latest DEXA scan done last month to see what she says. I walk daily at least 15K steps and my onc tells me that the walking is better for me than anything else I can do...so that is what I'll keep doing...I love walking...it is a good stress reliever!!!

Karen in Denver, Dx 02/03/2006, ILC, stage IIIa, ER/PR+, HER2-,
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May 10, 2015 01:16AM DoxieMama wrote:

Hi, I just joined the group, and was looking for a few answers when I came across this thread. When I went in knowing I had cancer on the right breast, back in Oct. 2008, they just knew it was all over my body and did a bone scan and every other test they could think of. In spite of me having two different kinds of cancer on the breast, it hadn't spread anywhere else. I live in Florida, but because of conflict with the doctors down here, I went to Washington University/Barnes Hospital in St. Louis, Mo., and got excellent care.

My husband flew back down after my surgery, and got a blood clot in his leg, and I ended up finishing the Herceptin down here, and when my calcium levels were off, this doctor told me the cancer was back. Yeah....WRONG. I looked up any other reason for them being off, and found hypo-parathyroid glands. I called St. Louis, and went back for a bone density test up there. I was right, but no surgery. That was 2009.

I don't take any hormones, but I have mild diabetes, and take Metformin for that. Now the new doctor tells me my calcium levels are off. I told him I knew, and why. He sent me out for a bone scan. They first thing they asked was if it had been AT LEAST TWO YEARS since they did the last one. Apparently that is important. The test came back with no change from 2009, the calcium level is no worse than it was then either. So of course, I must have IMMEDIATE surgery for it.

I plan to have it done, in my own schedule, because it might be responsible for some of the aches and pains I do have, but not on his schedule, because he seems to think I have unlimited funds, immediate transportation, and someone to drive me around...and care for my animals who can't be left behind. He said put them in a kennel, but didn't offer to pay for that service. And since two of them are service animals.....

I joined the group because I had a radical on the right side, right down to the bone, and lost so much skin and muscle that they did what they called a reverse tummy tuck. No reconstruction. I was so happy to see that breast gone! And my husband is a wonderful man who was just thrilled to have me alive and well. But even with no bone loss, it seems like that side is sinking in, and it aches. I do have congenital arthritis, lucky me. I don't know if this is normal, or if anyone else has had a problem with this.

All in all, I consider myself a pretty lucky person. The doctors down here told me "No, it's not cancer, it's just severe eczema." I treated myself for almost seven years until a tumor started growing on top of the breast, then I made the trip to St. Louis. They were amazed. I have very little faith in any doctors at all down here. I had gone to more than just a few. And it didn't spread, and I even got to skip radiation. I don't think there is a more thankful person than I am.

There isn't anyone around here to compare notes with that I feel confident about. I hope that chances here. Thanks.



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May 10, 2015 09:19PM Moderators wrote:

DoxieMama,

Thanks for sharing your story here, and we hope that you hear from others as well! You are in a difficult position to not feel that you can trust your physicians where you live. This may be a good question to call your treatment team in St. Louis about however. We are thinking of you, and hope that others will share their experiences with you.

Warmly,

The Mods

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Jun 3, 2015 02:42AM littlebird75 wrote:

thank you for the update. A new scan shows more bone loss in spite of Boniva treatment. I fractured another foot bone in my "other" foot and am scheduled for total knee replacement at the end of July. I'm concerned it won't be helpful given my continued bone loss.

Cindy - living, loving and laughing never meant more! Dx 9/11/2009, IDC, Right, 2cm, Stage IIB, Grade 2, 0/1 nodes, ER+/PR+, HER2- Hormonal Therapy 5/31/2010 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 2/1/2011 Arimidex (anastrozole), Aromasin (exemestane) Surgery 3/17/2011 Prophylactic ovary removal Surgery 12/21/2014 Reconstruction (left): Fat grafting; Reconstruction (right): Fat grafting Surgery 3/17/2015 Surgery
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Jan 19, 2016 06:34PM cuddyclothes wrote:

I had a BDS last week. Today I got a letter saying they hadn't been able to get through to me via telephone. I've told them over and over, DON'T use the landline (unfortunately it's in my medical records) and they never think to try my cell. It was apparently the order for the BDS and the prescription. On the 2nd page it said Diagnoses: malignant neoplasm of the breast

age related osteoporosis. What the what? If the letter is to tell me I'm to have a BDS, is it or is it not a diagnosis? I'll call tomorrow and find out. Argh...

Dx 6/30/2015, IDC: Papillary, Left, 1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2- Surgery 7/21/2015 Lumpectomy; Lymph node removal: Sentinel Radiation Therapy 11/10/2015 Dx 6/5/2016, LCIS, Right, <1cm
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Apr 18, 2016 04:38PM muska wrote:

Speaking of bone density scans, can somebody please tell me at what BMD levels they usually start you on bisphosphonates if you are taking an AI? Thanks in advance!

Dx at 54 Dx 5/9/2013, DCIS/IDC, Right, <1cm, Stage IIIA, Grade 3, 7/11 nodes, ER+/PR+, HER2- (FISH) Surgery 6/12/2013 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Dx 6/13/2013, LCIS, Both breasts Chemotherapy 7/24/2013 AC + T (Taxol) Surgery 2/19/2014 Reconstruction (left); Reconstruction (right) Hormonal Therapy 3/11/2014 Arimidex (anastrozole) Radiation Therapy 3/22/2014 Breast, Lymph nodes, Bone
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Apr 22, 2016 04:19AM Musical wrote:

Muska, I'm hoping someone might come in and answer that. Sorry I'm no help.

Psa 119:105 NUN. Thy word is a lamp unto my feet, and a light unto my path. (KJV)
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Apr 22, 2016 02:04PM Hopeful82014 wrote:

Muska, a growing number of MOs are moving to the use of bisphosphanates for reduction of recurrence risk (as you probably know), and BMD is only a minor factor in the equation.

If you are concerned about BMD or interested in bisphosphanate tx I wouldn't wait for your MO to raise the option. Some of them need to be nudged a bit... ;)

That being said, insurers may want a dexa in order to demonstrate need.
Dx IDC
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Apr 22, 2016 06:31PM muska wrote:

Hopeful, thanks for your feedback. I know that some women take bisphosphonates as a means of BC recurrence risk reduction. I will ask my MO about her opinion on the latest studies in that regards. My question however, is about the BMD threshold for their prescription. Are they usually prescribed when osteoporosis is diagnosed? When BMD falls below a certain level? When there are other contributing factors?

Dx at 54 Dx 5/9/2013, DCIS/IDC, Right, <1cm, Stage IIIA, Grade 3, 7/11 nodes, ER+/PR+, HER2- (FISH) Surgery 6/12/2013 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Dx 6/13/2013, LCIS, Both breasts Chemotherapy 7/24/2013 AC + T (Taxol) Surgery 2/19/2014 Reconstruction (left); Reconstruction (right) Hormonal Therapy 3/11/2014 Arimidex (anastrozole) Radiation Therapy 3/22/2014 Breast, Lymph nodes, Bone
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Apr 22, 2016 09:01PM Hopeful82014 wrote:

Muska, I'm sorry - I can't address that question but will be interested to see responses.

FWIW, I'm mildly osteopenic and have been for years before cancer and Femara entered my life. I suspect that will be helpful in getting my stodgy insurer to approve tx.
Dx IDC
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Apr 22, 2016 11:53PM - edited Apr 22, 2016 11:57PM by SpecialK

Treatment indications based on DEXA scan results are generally determined by the WHO (World Health Organization) guidelines. Those guidelines include initiating treatment in postmenopausal women and men aged 50 or older with a known fracture, or patients with BMD T-scores of less than or equal to -2.5 at the femoral neck or spine on DEXA, or with a T-score of between -1.0 and -2.5 at femoral neck or spine (the def of osteopenia) when this patient also has a greater chance of fracture based on the FRAX fracture risk model.

I was started on oral bisphosphonates shortly after a total hyst/ooph at the age of 45 when my baseline DEXA showed that I was mildly osteopenic. I could not tolerate the oral drugs due to a previous surgery for reflux and military hospitals did not use Reclast by IV. I remained relatively stable for nine years until chemo and six months of AI drugs. My density had worsened to just short of osteoporosis so was started on Prolia, which has reversed me back to a normal density. I have had a pretty severe fracture after a fall on concrete steps, post hyst/ooph but before breast cancer, and my FRAX score is high. MOs and insurance coverage vary on when to start therapy, and which type to use.

BMX w/ TE 11/1/10, ALND 12/6/10. 15 additional surgeries. TCHx6 2/17-6/2/11. Herceptin until 1/19/12. Femara 8/1/11, Arimidex 6/20/12, back to Femara 6/18/13-present. Dx 9/27/2010, DCIS, Stage 0, Grade 3 Dx 9/27/2010, IDC, Right, 2cm, Stage IIB, Grade 3, 2/14 nodes, ER+/PR+, HER2+ (IHC)
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Apr 23, 2016 12:41AM Hopeful82014 wrote:

Thx, SKay!
Dx IDC
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Apr 23, 2016 02:10AM SpecialK wrote:

You're welcome! I should add that I was of course aware of my broken ankle and knew my FRAX score, but didn't discuss either with my MO, his decision to start Prolia was based strictly on the difference between my DEXA done same day as mammo/US that led to diagnosis, and the one done six months after starting Femara

BMX w/ TE 11/1/10, ALND 12/6/10. 15 additional surgeries. TCHx6 2/17-6/2/11. Herceptin until 1/19/12. Femara 8/1/11, Arimidex 6/20/12, back to Femara 6/18/13-present. Dx 9/27/2010, DCIS, Stage 0, Grade 3 Dx 9/27/2010, IDC, Right, 2cm, Stage IIB, Grade 3, 2/14 nodes, ER+/PR+, HER2+ (IHC)
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Apr 23, 2016 06:19AM muska wrote:

SpecialK, that is exactly what I was looking for, thank you.

I had my second DEXA recently (the first one was after chemo and before Anastrozole) I had mild osteopenia in the spine on the 1st, it got worse two years later. The hips I think are ok. Will see what my MO says in May.

Thanks again

Dx at 54 Dx 5/9/2013, DCIS/IDC, Right, <1cm, Stage IIIA, Grade 3, 7/11 nodes, ER+/PR+, HER2- (FISH) Surgery 6/12/2013 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Dx 6/13/2013, LCIS, Both breasts Chemotherapy 7/24/2013 AC + T (Taxol) Surgery 2/19/2014 Reconstruction (left); Reconstruction (right) Hormonal Therapy 3/11/2014 Arimidex (anastrozole) Radiation Therapy 3/22/2014 Breast, Lymph nodes, Bone
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Apr 23, 2016 08:18AM starwoman wrote:

Recently my MO said that she usually looks to starting a bone drug if the T-score drops to -2. My GP wanted to start me on one a year ago but I declined and thankfully my scores were still above -2 at the last dexa in September 2015. A second-opinion MO a couple of years ago did mention the potential benefits of being on one in relation to recurrence but it wasn't a strong recommendation.

Dx 8/2011, DCIS, Left, 1cm, Stage 0, Grade 3, 0/0 nodes Surgery 2/13/2012 Mastectomy: Left Dx 1/2014, IDC, Right, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Surgery 1/21/2014 Lymph node removal: Sentinel; Mastectomy: Right Hormonal Therapy 4/9/2014 Arimidex (anastrozole)
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May 3, 2016 12:31PM Ratherbecooking wrote:

I am hoping someone can give me advice on the Prolia injection and fibromyalgia. It is being recommended to me while taking Arimidex since my bone density is decreasing, but I am very concerned that it will cause a spike in fibromyalgia symptoms.

Does anyone here have muscular/skeletal pain issues and has used Prolia successfully or with SE?

Thank you in advance.

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    Jun 23, 2016 04:19AM littlebird75 wrote:

    Ratherbecooking - I've been taking Prolia for 8 months now. I've had zero side effects. I'm the one who started this thread so... No SE is pretty amazing. Also - I was only diagnosed as having osteopenia. My PCP usually listens to me. I've been told that a more conservative dr would have made me wait

    Cindy - living, loving and laughing never meant more! Dx 9/11/2009, IDC, Right, 2cm, Stage IIB, Grade 2, 0/1 nodes, ER+/PR+, HER2- Hormonal Therapy 5/31/2010 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 2/1/2011 Arimidex (anastrozole), Aromasin (exemestane) Surgery 3/17/2011 Prophylactic ovary removal Surgery 12/21/2014 Reconstruction (left): Fat grafting; Reconstruction (right): Fat grafting Surgery 3/17/2015 Surgery
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    Oct 20, 2016 08:20PM IHGJAnn49 wrote:

    Hi, I'm new on this topic... but just got the results of my BDS and it showed my bones as weak.. I take calcium and Vit. D. I see my MO in 6 weeks and will find out more then.. I start rads on the 2nd so don't know how this is all going to go..

    I can do all things through Christ who strengthens me. IDC, PNI, Oncotype 24 Dx 8/3/2016, IDC, Left, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- Surgery 9/2/2016 Lumpectomy: Left; Lymph node removal: Left, Sentinel Hormonal Therapy 10/12/2016 Arimidex (anastrozole) Radiation Therapy 11/1/2016 Whole-breast: Breast
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    Oct 20, 2016 11:08PM ChiSandy wrote:

    I got my baseline DEXA scan the day I went for my radiation sim session, and it showed I was very osteopenic in the R femoral neck and moderately so in my c-spine. My MO wanted to put me on oral alendronate but I have a history of GERD verging on erosive esophagitis, so that was a nonstarter. I asked her about Prolia, because I’d read it was superior to I.V. bisphosphonates (Zometa, Reclast) in both strengthening bones and preventing bone mets. She said that the data on that wasn’t published yet (though she did admit that the next ASCO convention would probably announce new study results), that Prolia wouldn’t be covered, and that Zometa was “good enough.”

    I wish my Medicare Part B (BCBS) or D (Humana) carriers would pay for Prolia. I have very difficult veins and it doesn’t help that my R arm is now off-limits for venipuncture. I also knew I would suffer severe side effects (“faux-flu” for days). Prolia is an injection and Zometa is an I.V. infusion. Zometa is covered, no questions asked, by Part B and its supplements because as an infusion which must be given at a facility (i.e.,chemo suite, hospital, clinic, doctor’s office), it is considered not a “drug” but a “treatment.” BCBS refused to cover Prolia because as an injection, it is at least theoretically possible to be self-administered (though in practice it never, ever is), and is therefore not a “treatment” but a “drug;” and Part B doesn’t cover “drugs”—that’s what Part D is for. But Humana Enhanced refused to cover any of it because Zometa is cheaper and is used for the same purpose. Prolia is $5K per shot, twice a year for three years. We have the money, but my husband says we should save it for a “rainy day,” i.e., if I get mets and need Ibrance, which is not covered, costs $9K/month without a co-pay coupon—and you can’t use any such coupons if on Medicare.

    (That’s also why even my generic letrozole isn’t covered—Humana insists on my first “failing” a 3-month trial of generic anastrozole, and then the patient agreeing to take whichever mfr.’s generic letrozole the preferred pharmacy dispenses. I insisted if they wouldn’t cover branded Novartis Femara, I would take only Roxane or Teva letrozole, which have the fewest inactive ingredients and mildest side effects. Humana’s response was, because I specified a mfr., to call Teva or Roxane a "non-preferred brand,” which not only isn’t covered but doesn’t even count towards the out-of-pocket needed to pull me out of the “donut hole” and into “catastrophic coverage”).

    So my MO’s nurse, at my insistence, said my MO would try for a prior auth. from Humana for Prolia but that it’d probably be denied “because they’re all cracking down on prior auths.” Not surprisingly, it was denied. (Wonder how hard she even tried). So I had to get a Zometa infusion. Just as I expected, it took 5 tries to get an I.V. started, the infusion hurt like hell while being pumped, and I was sick as a dog for nearly a week. I told my primary, and he was livid. He said that the latest studies prove that bisphosphonates strengthen only vertebrae, not long bones, and that they can cause some of the very fractures that they are taken to prevent. He is willing to cite my difficult veins, inability to draw from my right arm at all, and severe side effects suffered as justification for a prior auth. appeal—and he says he won’t stop at one attempt.


    Diagnosed at 64 on routine annual mammo, no lump. OncotypeDX 16. I cried because I had no shoes...but then again, I won’t get blisters.... Dx 9/9/2015, IDC, Right, 1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2- (IHC) Surgery 9/23/2015 Lumpectomy: Right Radiation Therapy 11/2/2015 3DCRT: Breast Hormonal Therapy 12/31/2015 Femara (letrozole)
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    Oct 22, 2016 02:14AM Mariangel43 wrote:

    ChiSandy, I also have osteoporosis and the Orthopedic surgeon who saw me the first time because of the fracture wanted me to be put on a infusion biphosphonate regime too. I have not gone either to him or the endocrinologist he sent me to. I have reflux and I sometimes cannot live with it. I cannot figure out how could I stand the infusion of something like Zometa or Reclast. My ribs hurt but I stay quiet because my family physician put me on Boniva and I didn't buy it either. I also have very small veins that collapse easily and will not stand a prolonged infusion.

    My friends were amazed that my health insurance SSS could accept the PET/Scan and the Mammoprint easily. But they have some policies about drugs generic over brand and that means I will have some problems when trying to get a brand drug especially if it expensive.

    I am sorry you have to endure unnecessary pain cause a health insurance company is not covering a medication because is expensive. I hope that the DR. can convince your company about Prolia. I will look info about it and also pray for you so that you can get the medication the next time. It amazed me your problem with letrozole. I will be alert to that info cause I need to alleviate the pain in my hands caused by the generic anastrozole.

    Dx 5/4/2016, IDC, Right, 4cm, Stage IIA, Grade 1, 1/3 nodes, ER+/PR-, HER2- Hormonal Therapy 6/1/2016 Arimidex (anastrozole)
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    Oct 22, 2016 02:28AM Mariangel43 wrote:

    Ladies, I wish I could have a physician who takes care of my bones. Only my GP and the orthopedic surgeon are worried about it but the MO or RO don't care. Anastrozole is affecting my joints and deforming my knuckles. I am taking this pill since June and it's been effective into controlling the cancer.

    For my bones I have calcium 600 mg and Vit D, 10,000 units weekly besides the 400 units I take daily. What can I do to avoid more fractures? I already had multiple fractures in my right foot due to torsion. I have to worry about how I am moving and have to use a walker to keep my balance.

    Any advice how to deal with this?

    Dx 5/4/2016, IDC, Right, 4cm, Stage IIA, Grade 1, 1/3 nodes, ER+/PR-, HER2- Hormonal Therapy 6/1/2016 Arimidex (anastrozole)

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