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Topic: I feel like a cripple. Is it AI or risedronate?

Forum: Bone Health and Bone Loss —

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

Posted on: Nov 1, 2020 10:35AM

Tajmari wrote:

Hi. Two years ago, I had a mastectomy and was put on anastrozole and risedronate. I also had radiation, but no chemo. Over the past year I've had increasing pain in my knees, legs and feet. I complained twice in the last six months to my oncologist, but she pooh-poohed me both times. The first time, she told me to take vitamin D. (I've been taking it for years.) Next, she brushed my agonizing knee pain off as arthritis. True, I may have a little arthritis in my knees, but this is intermitent, screaming pain that makes me hobble instead of walk, interspersed with nonstop aching muscle and bone pain that can keep me awake at night. I have days with little pain and then days and days in endless, mood-destroying suffering. Anybody else have these symptoms with either of these meds? Anyone have any success reducing the pain? All suggestions welcome. I'm a ski coach, and the season is fast approaching. The way I feel now, I would need narcotics to make it through a day on the slopes. Thank you!

We're like the dreamer who dreams and then lives inside the dream. -- Monica Belucci in Twin Peaks. Dx 5/2018, IDC, Left, 2cm, Stage IB, Grade 2, 3/14 nodes, ER+/PR+, HER2- (FISH) Surgery 8/8/2018 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left; Reconstruction (left): Saline implant, Tissue expander placement Hormonal Therapy 9/10/2018 Arimidex (anastrozole), Aromasin (exemestane) Hormonal Therapy Radiation Therapy Breast, Lymph nodes
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Nov 1, 2020 02:17PM flashlight wrote:

Hi Tajmari, I'm not on anastrozole, but I had the same side effects when I started Tamoxifen. I have osteoporosis and in the past could not tolerate fosamax. Have you had a bone density done recently? What helped me was to take a tamoxifen holiday then to decrease my dose. Now, I am able to take the 20mg, but I split it into 2-doses. I have read where others take anastrozole every other day or switch to another med. My sister is on anastrozole and is getting some relief with a dose of claritin and will start reclast next month. I asked my MO to check my vit D level. 2-years ago it was low at 33, after taking Vitamin K2 with D3 it went up to 56. This year I changed my MO and it was the best decision.


Dx 11/15/2018, IDC, Left, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR-, HER2- Dx DCIS, Left, <1cm, Stage 0, Grade 1, 0/1 nodes Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Whole-breast Surgery Lumpectomy: Left
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Nov 1, 2020 06:51PM Tajmari wrote:

Flashlight, Thanks so much! What is an MO? I see an oncologist every quarter. I'm taking a vacation from anastrozole and risedronate for at least for a week. I need to know if the meds are causing my pain. I was supposed to have a bone density scan -- I've already had at least one -- and a blood test, but life is so stressed lately, I lost the paperwork for the blood draw, and I have no idea if I'm scheduled for the bone scan. I told my doc I didn't want to go to the hospital she put the order in for because they have an evil way of billing and slap patients with numerous, virtually incomprehensible charges after the fact. I cannot afford additional charges beyond basic copays. She wouldn't listen. Anyhow, I really appreciate your response. I will research reclast. Cheers! Melani

We're like the dreamer who dreams and then lives inside the dream. -- Monica Belucci in Twin Peaks. Dx 5/2018, IDC, Left, 2cm, Stage IB, Grade 2, 3/14 nodes, ER+/PR+, HER2- (FISH) Surgery 8/8/2018 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left; Reconstruction (left): Saline implant, Tissue expander placement Hormonal Therapy 9/10/2018 Arimidex (anastrozole), Aromasin (exemestane) Hormonal Therapy Radiation Therapy Breast, Lymph nodes
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Nov 1, 2020 08:12PM flashlight wrote:

Tajmari, MO is medical oncologist. They usually want you to go to the same place for the bone density test. In 2019 my MO gave me an order to get it done at the hospital and I didn't want to go through that hassle. I emailed my primary doctor and she gave me an order so I could go where I wanted. I know going to get blood drawn during Covid is a pain. Maybe consider getting another doctor? Best wishes!! They are predicting lots of snow this winter!!

Dx 11/15/2018, IDC, Left, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR-, HER2- Dx DCIS, Left, <1cm, Stage 0, Grade 1, 0/1 nodes Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy Whole-breast Surgery Lumpectomy: Left
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Nov 3, 2020 04:54PM Tajmari wrote:

Thank you! I feel silly not knowing what an MO is. I’ve just been working so hard and dealing with not only cancer, but being an essential worker in this pandemic that I’ve been tuning out. I’m not in denial, but I’m carrying on. Anyhow, I’m going to call my MO and get set up for a bone scan somewhere. I’m still on vacation from anastrozole and I’ll skip my risedronate tomorrow. My legs still hurt. Greatly appreciate your kind responses!

We're like the dreamer who dreams and then lives inside the dream. -- Monica Belucci in Twin Peaks. Dx 5/2018, IDC, Left, 2cm, Stage IB, Grade 2, 3/14 nodes, ER+/PR+, HER2- (FISH) Surgery 8/8/2018 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left; Reconstruction (left): Saline implant, Tissue expander placement Hormonal Therapy 9/10/2018 Arimidex (anastrozole), Aromasin (exemestane) Hormonal Therapy Radiation Therapy Breast, Lymph nodes
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Nov 9, 2020 09:17PM BlueGirlRedState wrote:

tajmari - it is discouraging and irritating to have DR poo-poo SEs. AIs definitely affect the bones and contribute to arthritis. But so does aging. Did you have a bone scan before starting AIs to get a baseline. Weight bearing exercises are good for the bones, but do not stop osteoperosis/arthritis. I find the various threads on this site helpful for learning what others are experiencing what might help. I think turmeric helps me with joint issues. I take a GAIA supplement as well as adding it to my diet (with black pepper). Vitamin D seems to help as well, I found out my levels were on the low side of "normal" even though I was taking 1-2000 UI/day. Also using a plant based supplement for bones that someone suggested, "New Chapter Bone Strength". I've read that "too much" Calcium can cause heart issues for women, but I do not know what too much is.

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Nov 10, 2020 12:36AM illimae wrote:

I had similar knee/joint pain on tamoxifen, felt like is was 100 years old. In addition to vitamin D for general use, Glucosamine was recommended and helped a lot for me.

Diagnosed at 41 Stage IV De Novo Dx 11/16/2016, IDC, Left, 5cm, Stage IV, metastasized to bone, Grade 3, 3/13 nodes, ER+/PR-, HER2+ (IHC) Chemotherapy 1/2/2017 Abraxane (albumin-bound or nab-paclitaxel) Targeted Therapy 1/2/2017 Herceptin (trastuzumab) Targeted Therapy 1/2/2017 Perjeta (pertuzumab) Surgery 6/26/2017 Lumpectomy: Left; Lymph node removal: Underarm/Axillary Radiation Therapy 8/10/2017 Breast, Lymph nodes Dx 10/5/2017, IDC, Left, 5cm, Stage IV, metastasized to brain, Grade 3, 3/13 nodes, ER+, HER2+ (IHC) Radiation Therapy 10/20/2017 External: Brain Radiation Therapy 4/18/2018 External: Brain Radiation Therapy 5/23/2019 External: Brain Surgery 1/22/2020 Radiation Therapy 2/17/2020 External: Brain Radiation Therapy 7/20/2020 External: Bone Radiation Therapy 12/4/2020 External: Brain Targeted Therapy Tukysa (tucatinib) Chemotherapy Xeloda (capecitabine) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)

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