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Topic: struggling with pain on Letrozole

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

Risks and benefits, side effects, and costs of anti-estrogen medications. Note: Please remember that there are good experiences and bad with ALL treatments and this is a safe place to share YOUR experience, not to be influenced or influence others.

Posted on: Sep 15, 2020 12:40PM

cm2020 wrote:

I have been on Letrozole for a few months (stopped for 6 weeks during radiation). For a week now I have been in pain. I ache all over like you do when you have the flu or have worked out too hard. It is unrelenting. In addition to that I have constant lower back pain. I can't take NSAIDs due to chronic hives so I am not taking anything to help this pain/aching. I did start doing regular gentle yoga (OMG....I am SO stiff! i used to be quite flexible it is disheartening to see how tight I am now). The pain and the aching are not made worse by yoga but I am also not getting any relief. I stretch regularly and try not to stay still for too long but moving takes so much effort and hurts that it is hard. After a week of this it is really starting to get to me. I move like a 90 year old woman, I hurt, everything takes so much more effort. I am in tears just describing all this. I do see my primary physician for a physical next week. I don't see my oncologist until December. I am blaming all of this on Letrozole, however, the longer the lower back pain continues the more it is starting to make me wonder if I have metastasis of the cancer (which seems unlikely but who knows).

I just needed to vent this to people who understand and who get it. I know there is probably no advice for me and I understand that.

Dx 3/20/2020, IDC, Right, 1cm, Stage IA, Grade 1, ER+/PR+, HER2- (IHC) Dx 4/2/2020, IDC, Right, 1cm, Stage IA, Grade 2, ER+/PR+, HER2- Surgery 4/6/2020 Lumpectomy: Right; Lymph node removal: Sentinel Hormonal Therapy 4/25/2020 Femara (letrozole) Radiation Therapy 6/10/2020 Whole-breast: Breast, Lymph nodes
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Sep 15, 2020 01:30PM - edited Sep 15, 2020 01:33PM by Spookiesmom

I've been on letrozole for over a year, no major problems. The 4 th year I was on aramidex and the 7 months of tamoxifen after that, I thought I was headed for a wheelchair the pain was so bad. We are all different, with different reactions to the meds. Ask, or call the first dr you see if you can switch to something else.

It’s easy for your mind to go dark places now with new aches and pains. Be sure to mention back pain, a mri can rule out ca. Mine flares up, mri shows a lot wrong, but not cancer.

Reoccurrence 3-19. Dx IDC, Stage IIIA, Grade 3
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Sep 15, 2020 02:40PM PurpleCat wrote:

It's definitely not just you. Letrozole made me miserable for the 3-4 months I took it. Joints so stiff and painful I felt about 90 years old. I've been off for about a month as a test, and my joints are still stiff but not so painful. I'm going to switch back to tamoxifen, which I know I can tolerate, rather than mess around with any more AIs.

Dx 10/2018, IDC, <1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Surgery 10/4/2018 Lumpectomy Surgery 10/18/2018 Lymph node removal: Sentinel Surgery Prophylactic ovary removal Hormonal Therapy Femara (letrozole) Radiation Therapy Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Sep 15, 2020 06:17PM Krose53 wrote:

I was on Letrozole for a year. I started a month after finishing chemo. I was miserable. I had horrible joint pain in my hips and hands but mostly in my lower back. I was in pain 24/7. I never had a moment without pain. I couldn’t bend over or even shave my legs. I also had general all over stiffness. I lived on a heating pad. Believe me I tried everything, diet, exercise, turmeric, OTC pain meds. I also had a very strange and rare side effect of episode of slurred speech, dizziness, nausea, and fainting or feeling as if I might faint. I tried Arimidex and my fainting episodes resolved but the joint and back pain continued. 4 months ago I started brand name Arimidex. I feel like a new person. I do have insomnia but dealing with that. My life is normal again. Different people react differently to Aromatase Inhibitors. Don’t hesitate to try others until you find the one that’s right for you. Good luck!

Dx 11/16/2017, ILC/IDC, Both breasts, 1cm, Stage IIA, Grade 2, 2/5 nodes, ER+/PR+, HER2- (FISH) Surgery 12/27/2017 Mastectomy: Left, Right Chemotherapy 1/22/2018 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 4/1/2018
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Sep 15, 2020 09:05PM Kleenex-123 wrote:

I have taken letrozole for almost 4 years. I have not had any side effects except hot flashes

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Sep 16, 2020 04:15AM cm2020 wrote:

Thank you all for the reassurance that I am not alone in dealing with this significant pain. Krose53...The speech and fainting episodes are scary as hell! I am so sorry you experienced that. As for not being able to bend over, I am right there with you. Even rolling over or going from one position to the next is filled with pain. My hands keep falling asleep too and are definitely weaker than normal even when not falling asleep. I'm glad you have found a med that works much better for you.

Spookiesmom....You know prior to experiencing this amount of pain I would have never imagined pain bad enough from hormone suppression to land one in a wheelchair. I was wrong. While I am not at that point, I can absolutely see how you could get there. I'm very happy you are doing better and found a med that you can tolerate. You are right, we are all so different, and how we respond to these drugs is quite individualized. I do plan on talking to my MO (and my primary since I see him sooner) about all of this.

PurpleCat...I don't blame you for going back on Tamoxifen instead. Unfortunately I can't take it due to another med I am on (contraindicated to be on both). So I am stuck with AIs, but I am hoping if this pain doesn't improve, I will be able to find one of the other ones that works without making me want to curl up and die due to the severe pain.

Dx 3/20/2020, IDC, Right, 1cm, Stage IA, Grade 1, ER+/PR+, HER2- (IHC) Dx 4/2/2020, IDC, Right, 1cm, Stage IA, Grade 2, ER+/PR+, HER2- Surgery 4/6/2020 Lumpectomy: Right; Lymph node removal: Sentinel Hormonal Therapy 4/25/2020 Femara (letrozole) Radiation Therapy 6/10/2020 Whole-breast: Breast, Lymph nodes
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Sep 16, 2020 05:45AM Francesca30 wrote:

Hi @cm2020 , I’m about 10 months on Femara. The first few months were so tough. I had aches and pains all over my body, I couldn’t go down the stairs properly each morning because I was so stiff! But now, my body is tolerating it better . I’ve learned that the more I exercise or move and stretch, the aches ease up . Although I still have some lower back/ tailbone pain that comes and goes

Surgery 3/13/2019 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left Dx 3/14/2019, IDC, Left, 2cm, Stage IIIA, Grade 2, 13/20 nodes, ER+/PR+, HER2- Chemotherapy 4/3/2019 TAC Radiation Therapy 8/13/2019 Whole-breast: Breast, Lymph nodes Hormonal Therapy 8/13/2019 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 11/17/2019 Prophylactic ovary removal Hormonal Therapy 11/28/2019 Femara (letrozole) Surgery 7/30/2020 Reconstruction (left): Silicone implant
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Sep 16, 2020 01:51PM Mountainlover wrote:

I have been on Femara for not even 2 months. After 4 weeks I started to experience significant pain in my legs, to the point I couldn't sleep. With my doctor's blessing I tried turmeric. Not sure whether it was a coincidence but the pain has significantly decreased. I'm exercising about an hour per day (mostly walking but also chi gong, tai chi and resistance training) and, like Francesca, I also find that aches improve with exercise. My main problem now is insomnia, for which I will soon try hypnosis. If that doesn't work, I'll give acupuncture a try.

Dx at 47 Dx 6/10/2020, DCIS, Left, 1cm, Stage 0, Grade 1, 0/1 nodes, ER+/PR+, HER2- Dx 6/10/2020, IDC: Tubular, Left, <1cm, Stage IA, Grade 1, 0/1 nodes, ER+/PR+, HER2- Surgery 7/13/2020 Mastectomy: Left; Reconstruction (left): Tissue expander placement Hormonal Therapy 7/23/2020 Femara (letrozole)
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Sep 16, 2020 04:16PM cm2020 wrote:

Francesca30.....I know what you mean about the stairs, I limp up and down them hanging on for dear life. I'm glad you are doing better. Do you happen to have any idea when things started getting a little better? It is encouraging to know that you did improve and have been able to stay on the med. It seems like the key to managing the pain and stiffness is exercise. I have been faithfully doing yoga the last few days and plan to keep it up. I was doing walking/cardio for exercise but the pain has been so bad that I had to stop because I just couldn't manage the pain. Yoga seems to be what is best right now. I do hope to eventually be able to walk again. At this point I just desperately want some relief from the unrelenting pain. Thank you so much!

Mountainlover.....Thank you for the turmeric recommendation. I will look into it. Thank you for sharing exactly how long you exercise each day and what you do. This is such good info (that everyone has shared!) and I will definitely be taking the suggestions and incorporating them into my daily routines. The pain has either kept me up or woken me up quite a few nights...it is awful isn't it? I'm glad that you are getting relief and doing better. I take melatonin for sleep. I start with 10mg each night and then if it doesn't work, or I wake up in the middle of the night, I take and additional 5mg. It isn't perfect, but I am getting more sleep as long as the pain doesn't wake me up or keep me up.


Dx 3/20/2020, IDC, Right, 1cm, Stage IA, Grade 1, ER+/PR+, HER2- (IHC) Dx 4/2/2020, IDC, Right, 1cm, Stage IA, Grade 2, ER+/PR+, HER2- Surgery 4/6/2020 Lumpectomy: Right; Lymph node removal: Sentinel Hormonal Therapy 4/25/2020 Femara (letrozole) Radiation Therapy 6/10/2020 Whole-breast: Breast, Lymph nodes
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Sep 18, 2020 02:11PM cm2020 wrote:

I wanted to provide an update for anyone that may be following this or happen upon it in the future with the same miserable pain. I have been faithfully doing yoga every day. It is slow, gentle, and not as long as a typical yoga class would be--my hope is to work up to longer sessions as I am become stronger/feel better. It has not been easy most days to accomplish this, but I have been faithful. I have noticed over the 2 days that my pain, while still present, isn't nearly as bad as it has been. I am not quite as stiff (except for first thing in the morning and after sitting for a bit) either. I realized after grocery shopping this morning that my pain wasn't any worse than it had been prior to starting. All of this to say....yoga is life changing for AI pain! It has been amazing to not be in the almost crippling pain that I have been enduring. Yes, I still hurt (esp lower back), but the improvement has been amazing, and I am hopeful that the pain and stiffness will continue to improve. My balance and flexibility are also improving. Thank you all again!

Dx 3/20/2020, IDC, Right, 1cm, Stage IA, Grade 1, ER+/PR+, HER2- (IHC) Dx 4/2/2020, IDC, Right, 1cm, Stage IA, Grade 2, ER+/PR+, HER2- Surgery 4/6/2020 Lumpectomy: Right; Lymph node removal: Sentinel Hormonal Therapy 4/25/2020 Femara (letrozole) Radiation Therapy 6/10/2020 Whole-breast: Breast, Lymph nodes

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