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Topic: AI - bone loss - fracture history - joint replacement needed

Forum: Bone Health and Bone Loss —

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

Posted on: Jun 3, 2015 02:37AM

littlebird75 wrote:

I've posted about my recent issues in the AI forums. Two days ago I fractured my third food bone - doing nothing but taking off my shoe.


The AI I was taking for nearly 4 years has caused serious joint damage and bone loss. It continues to get worse and I need double knee replacement. I asked my orthopedic doctor today if the bone loss could have a negative impact on the knee replacements. He said yes.


I'm at a loss. I want my mobility back. Has anyone else had a total knee replacement with bone loss from cancer treatment? I don't want to give up and turn into a couch potato with no quality of life. I also don't want to chose surgery that won't help me given my medical state.

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 6/1/2010 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 2/2/2011 Arimidex (anastrozole), Aromasin (exemestane) Surgery 3/18/2011 Prophylactic ovary removal Surgery 12/22/2014 Reconstruction (left): Fat grafting; Reconstruction (right): Fat grafting Surgery 3/18/2015 Surgery
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Jul 14, 2015 06:57PM lizakar wrote:

do tell more! I have broken 6 bones since Femara, and have 2 more years to go, my Dexascans are normal, but just simple falls snap bones. Had my first Zometa last month. Someone suggested bio identical hormones testosterone pellets, but being PR+ that feeds the cancer, no? I am not surviving, I am enduring

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Jul 14, 2015 09:32PM edwards750 wrote:

I haven't broken any bones but I was certainly vulnerable given I have osteoporosis. My ONC started me out on Arimidex but after that first year she changed my meds to Tamoxifen. Arimidex robs your bones. Why would someone take that even with additional calcium supplements? Also drugs like Boniva are expensive. Tamoxifen can cause clots but my ONC said I have had 2 kids since( I had a clot when I was 16 )so she wasn't worried. Do you guys take additional calcium tablets? I am all over dairy products and calcium and my numbers are good from the bone scans. In fact I had a scan this morning. Don't know the results yet of course but the past few have been good. I have also stepped up my exercise program too. I see you were taking Arimidex and wondering why your dr didn't change your meds. Does Aromasin rob the bones too?

Diane

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Jul 28, 2015 11:10AM cowgal wrote:

I am currently recovering from total bilateral knee replacement surgery on July 7th. I'm only 51 but apparently the aromatase inhibitors did a number on my knees.

I was diagnosed with BC in 2010 and after my mastectomy and radiation was started on tamoxifen. As far as how I felt on tamoxifen, I had a few side effects but was still able to exercise and ride my horses. I did get a blood clot and uterine thickening so I had to have a complete hysterectomy and was switched to arimidex. Within two months of starting arimidex, I started having severe pain in my knees and exercise got progressively harder to do and eventually I could barely get around. My MO tried switching me to aromasin and then to femara to see if I could tolerate any of them. Finally, last July I was taken off of them. I thought as the drug left my system that everything would return to normal but it never did. I had a super minor slip on ice this past January and I ended up on a walker. A MRI was done on one knee and when I was referred to an orthopedic surgeon I told him that he better look at both knees. Sure enough, I had end stage tri-compartmental osteoarthritis in both knees, meniscus in both knees were shredded and ACLs torn, my joints were completely black from being bruised from walking around bone on bone for so long. The OS said that aromatase inhibitors are not only hard on bone but on ligaments and tendons too.

I had a bone density test done after I had been in AIs for two years and they showed normal for my age. However, the bone density scan is taken from mid thigh to just above the pelvis so it never showed the damage going on in my knees.

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Jul 28, 2015 07:06PM littlebird75 wrote:

cowgal - thank you for sharing your story! It sounds so much like mine and others I keep hearing who took AI's.

How do you feel since the surgery? I realize it hasn't been long, but I hear the difference is clearly noticeable after surgery. Do you feel that way?

I am scheduled for my left knee replacement on August 7th. I've done a lot of research, got a second opinion, and grilled my orthopedic doctor today. I just have to stop listening to the people who know nothing about how the AI's can effect otherwise "healthy" people. I will update after surgery.

I do want to hear more from you and others in this boat!

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 6/1/2010 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 2/2/2011 Arimidex (anastrozole), Aromasin (exemestane) Surgery 3/18/2011 Prophylactic ovary removal Surgery 12/22/2014 Reconstruction (left): Fat grafting; Reconstruction (right): Fat grafting Surgery 3/18/2015 Surgery
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Jul 28, 2015 08:18PM - edited Jul 28, 2015 08:20PM by cowgal

I'm happy to answer any questions you might have. Total knee replacement surgery is tough, I am not going to lie. I did both knees at the same time because they were both so bad I figured that a new knee with either of my damaged knees would have trouble doing the physical therapy I would do after surgery and hold back the new knee. My surgeon said that I was a good candidate for doing both knees at the same time so I went for it. There is pain with the surgery but I can tell it is different then how the previous pain. I'm doing better every day but it still is not a quick recovery. My husband can't believe my legs finally can straighten again.

Something that I did before surgery was to have a metal allergy test done. My allergist insisted on it. Thank God for that as it turns out I have a nickel allergy and the original joint that they were going to implant had 1% nickel so my surgeon had to use a different joint.

An interesting side note is that while I was in surgery, my husband was in the waiting area and there was a women in there waiting on her dad. My husband told the women that I was getting both knees replaced due to taking aromatase inhibitors. He said the women held up her hands and she showed him that her hands were all knarled up from taking aromatase inhibitors.

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Jul 28, 2015 08:41PM littlebird75 wrote:

I know I will need the right knee done as well, but the damage in the left is worse because of a fall I had. My right knee (the 'good' one) started sounding like it was full of gravel and now is popping and catching on the outside. It has all happened so suddenly and then escalated very quickly. I remember being shocked at how I was fine one day, then the rate it got worse was alarming.

Keep us posted on your recovery. I do know it's not an easy surgery, but I'm AM looking forward to being able to take a walk again.

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 6/1/2010 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 2/2/2011 Arimidex (anastrozole), Aromasin (exemestane) Surgery 3/18/2011 Prophylactic ovary removal Surgery 12/22/2014 Reconstruction (left): Fat grafting; Reconstruction (right): Fat grafting Surgery 3/18/2015 Surgery
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Jul 28, 2015 10:41PM - edited Jul 28, 2015 10:41PM by cowgal

Yes, the surgery will be worth it. I can't wait to be able to walk pain free. I will finally be able to walk my dog, dance with my husband and ride my horses again. Not long after surgery, the hospitalist told me I was already walking further with my new knees than I could before surgery albeit with a walker. :)

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Jul 29, 2015 12:23AM littlebird75 wrote:

Poetic cowgal....so poetic.

"I will finally be able to walk my dog, dance with my husband and ride my horses again."

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 6/1/2010 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 2/2/2011 Arimidex (anastrozole), Aromasin (exemestane) Surgery 3/18/2011 Prophylactic ovary removal Surgery 12/22/2014 Reconstruction (left): Fat grafting; Reconstruction (right): Fat grafting Surgery 3/18/2015 Surgery
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Jul 30, 2015 02:14PM cowgal wrote:

littlebird75 - How long have you been off of AIs? The reason I ask is that a friend told me about one of her friends that needed back surgery but was on AIs. She said her friend was told she has to be off of AIs for at least six months to do three surgery because AIs slow healing. Not sure if this is a hard fact when dealing with AIs or just that surgeon's rule.

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Jul 30, 2015 06:08PM littlebird75 wrote:

cowgal - thanks for asking. I've been off for a year now so I should be ok. I was going to start Prolia but the pharmacy told me it can increase risk of infection so I'm waiting till after sugery to start that too.

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 6/1/2010 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 2/2/2011 Arimidex (anastrozole), Aromasin (exemestane) Surgery 3/18/2011 Prophylactic ovary removal Surgery 12/22/2014 Reconstruction (left): Fat grafting; Reconstruction (right): Fat grafting Surgery 3/18/2015 Surgery
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Jul 31, 2015 11:58AM - edited Jul 31, 2015 12:04PM by cowgal

I didn't know if you had done any prepping for your surgery yet? Will you have someone that will be able to help you when you get home from the hospital?

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Sep 14, 2015 04:49PM Blessedteacher37 wrote:

Hi ladies ,

I have been on another thread for a year and discovered yours today. I read your posts with interest. I found out today that I will need hip replacement on both sides. I was on Arimidex for a year and had such joint pain that I could not sleep and walking more than 5 or 10 min. was out of the question. My MO reluctantly agreed to let me discontinue taking it . I stopped taking it in mid-July of this year

I feel much better overall, but noticed my right knee and hip were still painful . My PCP ordered an X-ray, then recommended an Ortho doc. I was shocked at his diagnosis. My right hip has no space between bones at all and is severely arthritic. The knee is inflamed but it's due to the hip issue. Left hip isn't as bad but will still need to be done.

Has anyone else had hip replacement due to arthritis, that may have been aggravated by Arimidex? I had some problem before my BC journey started, but I believe the Arimidex worsened/accelelerated the progress of already present arthritis. I am 61 years old, have not had chemo, never played sports or had a hip injury.

Thanks....Ellen

2 Corinthians 1: 3,4 Dx 10/5/2010, IDC, 1cm, Stage IA, Grade 1, 0/4 nodes, ER+/PR+ Surgery 10/21/2010 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 12/12/2010 Breast Hormonal Therapy 3/1/2011 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 3/6/2014, DCIS, <1cm, Stage 0, Grade 2, 0/0 nodes, ER+/PR+ Surgery 3/17/2014 Lumpectomy: Right Radiation Therapy 5/5/2014 Breast Hormonal Therapy 6/27/2014 Arimidex (anastrozole) Hormonal Therapy 8/30/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Sep 14, 2015 05:21PM littlebird75 wrote:

Ellen - I expect you'll hear from others about haivng hip issues. I think the AI's impact ALL the joints based on my experience and what I've heard from others. I have severe pain in my right hip but I'm trying to ignore it while I get my knees healthy. It will be interesting to see what others have to share about hip deterioration after AI's.

I had my total knee replacement on August 7th. Today I'm feeling much better, getting range of motion back and my surgical pain is nearly gone. I am amazed to NOT have pain in that knee. It's really amazing. I'm off a walker now and using just crutches, sometimes only one crutch but 2 is better. I haven't tried driving yet but I suspect I would be able to with reasonable safety. I'm still deciding what to do about my other knee.

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 6/1/2010 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 2/2/2011 Arimidex (anastrozole), Aromasin (exemestane) Surgery 3/18/2011 Prophylactic ovary removal Surgery 12/22/2014 Reconstruction (left): Fat grafting; Reconstruction (right): Fat grafting Surgery 3/18/2015 Surgery
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Sep 14, 2015 07:27PM Blessedteacher37 wrote:

Thanks Littlebird for the encouragement. I'm glad you are doing so well after knee surgery!

In a follow up appointment last week with my BC surgeon, he said he sees at least one woman a week who is having bone issues and pain with Arimidex. It's a shame that a drug that can help so many women stay cancer free has such debilitating side effects. Some one mentioned to me that the drug seems to affect a weaker part of your body the most; in my case that is true. I had some hipproblems before cancer but it wasn't enough to warrant a doctor's appt.

Keep up the great recovery, and thanks again!

Ellen

2 Corinthians 1: 3,4 Dx 10/5/2010, IDC, 1cm, Stage IA, Grade 1, 0/4 nodes, ER+/PR+ Surgery 10/21/2010 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 12/12/2010 Breast Hormonal Therapy 3/1/2011 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 3/6/2014, DCIS, <1cm, Stage 0, Grade 2, 0/0 nodes, ER+/PR+ Surgery 3/17/2014 Lumpectomy: Right Radiation Therapy 5/5/2014 Breast Hormonal Therapy 6/27/2014 Arimidex (anastrozole) Hormonal Therapy 8/30/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Sep 14, 2015 07:56PM lisa-e wrote:

I've had both hips replaced, the first just before my breast cancer diagnosis at 55. I had the second one replaced at 58, after taking arimidex. I had minor OA in the joint before I started arimidex - arimidex just accelerated the disintegration of the joint. I am quite happy with results of both surgeries.


Initial BC dx with dcis & idc after lumpectomy & snb in 6/08. in 8/08 dx with multicentric bc (idc) after mri. had bilat mastecomy in 9/08 w/o reconstruction Dx 5/2008, DCIS, 2cm, Stage 0, Grade 3 Dx 6/2008, IDC, <1cm, Stage I, Grade 1, 0/1 nodes, ER+/PR+, HER2- Dx 8/2008, IDC, 1cm, Stage I, Grade 1, 0/19 nodes, ER+/PR+, HER2- Surgery Lumpectomy: Right; Lymph node removal: Left, Right, Sentinel; Mastectomy: Right; Prophylactic mastectomy: Left
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Nov 12, 2015 07:34AM Blessedteacher37 wrote:

Good morning,

A quick update . I wrote In September that I was having hip issues after Arimidex. Well, I had hip replacement surgery a week ago. So far, so good. Another lady on our thread is probably going to have it after being on another AI. The medical field will probably never admit there Is a correlation but I can't explain such quick deterioration.

God bless you all as you continue to battle....Ellen

2 Corinthians 1: 3,4 Dx 10/5/2010, IDC, 1cm, Stage IA, Grade 1, 0/4 nodes, ER+/PR+ Surgery 10/21/2010 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 12/12/2010 Breast Hormonal Therapy 3/1/2011 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 3/6/2014, DCIS, <1cm, Stage 0, Grade 2, 0/0 nodes, ER+/PR+ Surgery 3/17/2014 Lumpectomy: Right Radiation Therapy 5/5/2014 Breast Hormonal Therapy 6/27/2014 Arimidex (anastrozole) Hormonal Therapy 8/30/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Dec 5, 2015 06:44AM marijen wrote:

Hi blessedteacher, it's the middle of the night for me. I have osteoporosis. In my spine, am on Femara since April, and have two reclast infusions, it's time for the third and final one? Any advice for me? I feel my endocrinologist is not taking the AI/Bone density thing seriously as even though I've lost density since starting Femara, he doesn't want to see me back until next November

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Dec 5, 2015 11:22AM Loral wrote:

I had a total hip replacement in May and have been on Tamoxifen for almost 3 years. I'm 54 and 2 years ago I had a left hip xray and it showed mild arthritis and bone density showed osteopenia, yet this January xray showed bone to bone, maybe Tamoxifen accelerates it.

Oncotype DX 34....When NOTHING is sure, EVERYTHING is possible ,so NEVER, EVER, GIVE UP HOPE!! Dx 9/11/2012, DCIS/IDC, Left, 1cm, Stage IA, Grade 1, 0/5 nodes, ER+/PR-, HER2- Surgery 10/8/2012 Lumpectomy: Left; Lymph node removal: Left, Sentinel Hormonal Therapy 12/12/2012 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Dec 5, 2015 12:10PM - edited Dec 5, 2015 12:12PM by Blessedteacher37

Loral,

I took Tamoxifen for three years...although I didn't feel great while taking it, I didn't have as much joint stiffness and pain as you experienced. The bone density I had after my last diagnosis and before Arimidex still showed bone density in the positive range. However, I have heard of others on Tamoxifen that had joint side effects...I guess it's like any powerful drug..if it can keep cancer cells from forming or creating tumors it can do anything. My Oncologist always said that hormones are all over your body so drugs can affect everything...not just the breast.

I know it was painful for you, but hope you have found relief since the THR, as I have.Hoping your right hip isn't troubling you. It wouldn't be a total surprise to learn one day that any Hormone Therapy, whether Tamoxifen or AI, was responsible for joint replacement surgery in large numbers of women. It's a hard decision to make, at least for me...Hormone treatment for cancer or misery with severe arthritis associated with treatment.

Praying that all of us won't have to battle BC again....and for a new drug that has fewer side effects.

Ellen

2 Corinthians 1: 3,4 Dx 10/5/2010, IDC, 1cm, Stage IA, Grade 1, 0/4 nodes, ER+/PR+ Surgery 10/21/2010 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 12/12/2010 Breast Hormonal Therapy 3/1/2011 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 3/6/2014, DCIS, <1cm, Stage 0, Grade 2, 0/0 nodes, ER+/PR+ Surgery 3/17/2014 Lumpectomy: Right Radiation Therapy 5/5/2014 Breast Hormonal Therapy 6/27/2014 Arimidex (anastrozole) Hormonal Therapy 8/30/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jan 8, 2016 09:31PM new2bc wrote:

My oncologist switched me from Arimidex to Tamoxifen after ooph to reduce bone loss. Now you ladies tell me that your bones still deteriorated even with Tamoxifen. I thought Tamoxifen will be better for bones than an AI. Is this true?

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Jan 9, 2016 08:55AM Blessedteacher37 wrote:

new2bc,

I took Tamoxifen for three years and didn't have significant joint pain, and my bone density test showed I was still in the positive category. So at least for me, tamoxifen didn't seem to create bone issues.

Ellen

2 Corinthians 1: 3,4 Dx 10/5/2010, IDC, 1cm, Stage IA, Grade 1, 0/4 nodes, ER+/PR+ Surgery 10/21/2010 Lumpectomy: Left; Lymph node removal: Sentinel Radiation Therapy 12/12/2010 Breast Hormonal Therapy 3/1/2011 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 3/6/2014, DCIS, <1cm, Stage 0, Grade 2, 0/0 nodes, ER+/PR+ Surgery 3/17/2014 Lumpectomy: Right Radiation Therapy 5/5/2014 Breast Hormonal Therapy 6/27/2014 Arimidex (anastrozole) Hormonal Therapy 8/30/2016 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Feb 26, 2016 08:58AM alainemort wrote:

so it's four years out since my chemo which included adriamycin, cytoxan, taxotere (sp) I am now having issues with my spine degenerating and spinal stenosis. I have a cervical and a lumbar bulging disc and nerve compression in my right arm. I'm wondering if these chemos and my early menopause have cause some of these problems

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