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Topic: Bone pain in legs from letrozole

Forum: Hormonal Therapy - Before, During, and After —

This is a safe place to share your experiences of others considering or on hormonal treatment.

Posted on: Sep 19, 2021 12:47PM

mudd wrote:

I’ve been getting all sorts of weird bone pain in my legs and hips and went for X-rays and even a Doppler to see if blood clots but my MO wants me to try stopping letrozole for two weeks and see if the pain goes away in order to see if the that’s the cause. I’m in my fourth year of taking it and so far I feel fine except for these weird legs pains. Has anyone stopped for a week or two I’m terrified of stopping the letrozole but the pain is starting to interfere with my daily activities. Any suggestions?


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Sep 19, 2021 01:27PM Spookiesmom wrote:

I was off letrozole for 3 months , I was having severe nausea. Thought it was letrozole. Was stress, am on it again.The other AIs gave me severe foot pain. We are each different, try the 2 weeks off, then maybe switch to something different.

First time IDGgrade 3, stage 3. Second time, found lump myself. That made me stage 4. Dx IDC, Stage IIIA, Grade 3
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Sep 19, 2021 04:09PM kathabus wrote:

It IS scary to stop taking it, but in the whole scheme of 5, 7 or even 10 years....2 weeks is nothing. It'll be ok. I will tell you....I am only on my second year, but all of my greatest pain is in my legs. No where else, really. Specifically my thighs. It wouldn't surprise me one bit if that pain goes away with the letrozole break. Please come back and tell us what happened on your break.

Diagnosed at 43 Years Old, Oncotype DX 10 Dx 2/17/2020, IDC, Right, 2cm, Stage IB, Grade 2, 1/1 nodes, ER+/PR+, HER2- Surgery 3/23/2020 Lumpectomy; Lymph node removal Radiation Therapy 5/14/2020 Whole-breast: Breast, Lymph nodes, Chest wall Surgery 7/20/2020 Prophylactic ovary removal Hormonal Therapy 8/20/2020 Femara (letrozole)
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Sep 19, 2021 06:05PM LimnoGal wrote:

mudd-I took a 6 week vacation from letrozole because of severe foot pain when I was about 3.5 years in (MO approved). The foot pain improved significantly, then returned once my “vacation” was over and I started letrozole again. My MO worked with me to find an AI that I could take with tolerable side effects. I ended up finishing my 5 years up on tamoxifen.

Alike Kathabus said, in the scheme of things, a few weeks off is not that long.

Good luck

Moving on.... Dx 11/2016, DCIS/IDC: Papillary, Left, 1cm, Stage IA, Grade 3, 0/6 nodes, ER+/PR-, HER2- Surgery 2/11/2016 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy Balloon-catheter: Breast
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Sep 19, 2021 06:52PM - edited Sep 19, 2021 06:53PM by ThreeTree

There's a new study that came out, that they might even reference somewhere here on BCO, where those who took 3 month breaks each year during years 1-4, then took with no break during year 5, had no difference in overall survival rates than those who did not take breaks. Many on here have said that their doctors either suggested breaks or were OK with them when the person wanted to take a relatively short one.

Also, I get lots of pain in my legs and feet also!

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Sep 19, 2021 09:27PM LillyIsHere wrote:

My leg and joint pains are gone but the bottom of the feet are very painful especially when I wake up in the morning and it goes away as I push myself to walk/run. It feels I'm walking on fire as soon as I put my feet down. It started right after the first covid vaccine and it is still not gone. MO told me I can take a break from letrozole for up to 6 weeks to see if it goes away but I am nervous to stop it. I assume 6 weeks is standard as letrozole vacation goes.

“Within five years, cancer will have been removed from the list of fatal maladies.” That was the optimistic promise to U.S. President William Howard Taft in 1910 when he visited Buffalo’s Gratwick Laboratory, “What’s taking so long?” Dx 7/31/2019, ILC, Left, <1cm, Stage IIA, 2/5 nodes, ER+/PR-, HER2- Surgery 9/19/2019 Lymph node removal: Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic ovary removal; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 11/29/2019 Femara (letrozole) Targeted Therapy
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Sep 23, 2021 12:55AM PrincessButtercup wrote:

I stopped by here tonight to look up foot pain on letrozole. I'm grade 3, so am afraid to take any kind of a break from the AI, but I think it's time to talk to my MO. It's interesting about the study on short breaks, though. Will look for that.

Does anyone have pain on the top of the foot near the base of their big toe? I also have bunions, but this is different.

Dx 11/15/2017, IDC, Left, 1cm, Stage IA, Grade 3, 0/2 nodes, ER+/PR-, HER2- Surgery 12/4/2017 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 1/20/2018 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 4/30/2018 Whole-breast: Breast Hormonal Therapy 6/10/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy Femara (letrozole)
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Sep 23, 2021 06:44AM - edited Sep 23, 2021 06:45AM by Rambros

yes, I used to have that same toe pain (base of big toe) when I was on letrozole (would last for a month or two, go away for a bit and then come back again). I'm on anastrozole now and just realized that pain is gone.

Dx 10/8/2014, IDC, Left, 3cm, Stage IIB, Grade 3, 1/10 nodes, ER+/PR+, HER2- (FISH) Surgery 11/16/2014 Mastectomy: Left; Prophylactic mastectomy: Right Chemotherapy 1/5/2015 AC + T (Taxol) Hormonal Therapy Femara (letrozole) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone), Zoladex (goserelin) Surgery Prophylactic ovary removal Radiation Therapy Lymph nodes, Chest wall
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Sep 23, 2021 08:41AM PrincessButtercup wrote:

Thank you, Rambros! That's good to hear. Yes the pain comes and goes, but it's particularly bad right now. I'm glad that your foot pain is gone!

Dx 11/15/2017, IDC, Left, 1cm, Stage IA, Grade 3, 0/2 nodes, ER+/PR-, HER2- Surgery 12/4/2017 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 1/20/2018 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 4/30/2018 Whole-breast: Breast Hormonal Therapy 6/10/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy Femara (letrozole)
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Sep 23, 2021 09:58AM ThreeTree wrote:

Princessbuttercup - This is the study, I found it:


https://www.annalsofoncology.org/article/S0923-7534(21)02492-3/fulltext

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Sep 23, 2021 10:27AM PrincessButtercup wrote:

Thank you, ThreeTree.

Dx 11/15/2017, IDC, Left, 1cm, Stage IA, Grade 3, 0/2 nodes, ER+/PR-, HER2- Surgery 12/4/2017 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 1/20/2018 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 4/30/2018 Whole-breast: Breast Hormonal Therapy 6/10/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy Femara (letrozole)
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Sep 23, 2021 12:06PM LillyIsHere wrote:

Princessbuttercup, I feel that letrozole (probably the other AI sisters as well) increases inflammation in many users. I get pains here and there and it is working well with an anti-inflammatory like Motrin. Motrin took care of many weird pains. Also, magnesium before bedtime helps as well. Let us know how it goes.

“Within five years, cancer will have been removed from the list of fatal maladies.” That was the optimistic promise to U.S. President William Howard Taft in 1910 when he visited Buffalo’s Gratwick Laboratory, “What’s taking so long?” Dx 7/31/2019, ILC, Left, <1cm, Stage IIA, 2/5 nodes, ER+/PR-, HER2- Surgery 9/19/2019 Lymph node removal: Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic ovary removal; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 11/29/2019 Femara (letrozole) Targeted Therapy
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Sep 23, 2021 12:09PM ThreeTree wrote:

Princessbuttercup - You're quite welcome!

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Sep 24, 2021 01:07AM PrincessButtercup wrote:

Thanks, this is a very strange foot pain. The pain moves around and is sometimes in my toes, almost like sometime has tied rubber bands around them. At other times it’s the top of my foot that hurts with a stabbing pain. Aleve helps a little.

Dx 11/15/2017, IDC, Left, 1cm, Stage IA, Grade 3, 0/2 nodes, ER+/PR-, HER2- Surgery 12/4/2017 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 1/20/2018 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 4/30/2018 Whole-breast: Breast Hormonal Therapy 6/10/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy Femara (letrozole)
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Sep 24, 2021 02:42AM - edited Sep 24, 2021 02:43AM by WC3

I've had pain in my legs/feet. I don't think it's exactly bone pain. I think it's the tissue surrounding my joints. Getting up and moving around in the morning seems to help but if I stay in bed too long it becomes very painful to walk. I'm not sure how much of a role the lupron/zoladex and anastrazole play in this as I had some leg/ankle pain and stiffness beforehand but it has been significantly worse this past year since I switched off the Tamoxifen and I don't think it is normal for my age.

Pathologic complete response (pCR) to chemotherapy. Dx 2018, IDC, Left, 3cm, Grade 3, ER+/PR+, HER2+ (FISH) Chemotherapy 5/31/2018 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 11/14/2018 Lymph node removal: Left, Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy Arimidex (anastrozole), Zoladex (goserelin) Targeted Therapy Perjeta (pertuzumab) Targeted Therapy Herceptin (trastuzumab) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Sep 24, 2021 02:45AM - edited Sep 24, 2021 02:50AM by WC3

LillyIsHere:

The foot pain you describe sounds like plantar fasciitis. My mother had that for a while.

I had sudden sharp pain in the bottom my foot a while back which web searches kept trying to convince me was plantar fasciitis but the location was wrong because the pain I was experiencing was just below the ball of my foot. I eventually figured out it was a back problem in my lumbar or sacral region after I realized I could stop the pain when it occured by arching my back.

Pathologic complete response (pCR) to chemotherapy. Dx 2018, IDC, Left, 3cm, Grade 3, ER+/PR+, HER2+ (FISH) Chemotherapy 5/31/2018 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 11/14/2018 Lymph node removal: Left, Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy Arimidex (anastrozole), Zoladex (goserelin) Targeted Therapy Perjeta (pertuzumab) Targeted Therapy Herceptin (trastuzumab) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Sep 26, 2021 05:14PM mudd wrote:

Thanks for so many responses. So far nothing has turned up on xrays or doppler and it seems to be easing up so maybe its orthopedic but since I made such a big deal of it my dr. now is suggesting a bone scan to be over the top cautious. Is that crazy to do or just suck it up and take tylenol. Now I'm really scared.

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Sep 26, 2021 06:42PM ThreeTree wrote:

Mudd - I've become afraid to tell the doctors about most of my aching muscles and joints (bones would be included in that), because they seem to automatically want to go to bone scans. I know they have to do what they have to do, but I like to take a more cautious approach initially. If nothing had shown up on x-rays or doppler, I think I'd just "watch and wait". I would be willing to bet a lot that your problems are from the Letrozole. It sounds fairly familiar to what I experience. I try not to do Tylenol if I can avoid it. I've had some pretty good luck with turmeric supplements and also frankincense (boswellia) supplements, and SAM-E. All of those help with arthritic type pain (and are showing some initial promise against cancer), and when I drop them I just start aching really bad all over, so I think they've been a big help. (Was already taking them all before I started the Letrozole, so only got the full effect of the letrozole, when I'd drop the supplements from time to time.)

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