Aches and pains in the bones

Posted by karendb @karendb, Jan 29, 2020

Hi everyone. I haven’t been on for awhile so I’ll start with the good news. Had my first post cancer mammogram and it came back clear! Yay! Now for the yucky bit. I’ve been on AI for almost a year now and have had minor aches and pains up till now. Lately my bones ache in the oddest places like midway from my knee to my ankle and my arm (the side I had lumpectomy on) feels like it’s gonna break. My neck gets sore in the back too. It feels like my head is too heavy for it. Sounds nuts I know but some days I have such fear... also near the spot that the lumpectomy was done it is always sore and achy even just to touch the skin. Did anyone else suffer from AI like this? I mean I’ve been on it for almost a year and it’s never gotten bad till now. Just concerned it may not be the AI causing these new aches and pains.

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I took Letrozole for 2 years and switched because I felt 100 and just felt awful, flu like. Switched to Exemestane. After a year most of previous symptoms returned. Not quite as stiff. I took 4 days off per my docs instruction and it sort of reset things. Went 6 months symptom free. Things have gotten better but when I feel fluish, achy if I go walk for an hour I feel much better for days. Exercise is key for me. Stiff though. Just thankful for the meds. Had a friend die from breast cancer years ago just as the tamoxifin was coming out but still in trials. She finally got on it after a fight but only a few months before she died. Thankful to have them but they sure make you feel bad at times.

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Thanx guys. I see my family dr tomorrow so I’ll double check with him again. They did say the cancer was so small they couldn’t even see it, less than 1 cm. But it had gone into 1 lymph node. They didn’t say I was high or low risk. Just that they got it all and to take anastrozol for 5 years and see her in 2024. I don’t know what I should do now.

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@karendb

Thanx guys. I see my family dr tomorrow so I’ll double check with him again. They did say the cancer was so small they couldn’t even see it, less than 1 cm. But it had gone into 1 lymph node. They didn’t say I was high or low risk. Just that they got it all and to take anastrozol for 5 years and see her in 2024. I don’t know what I should do now.

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You should request geonomic testing on your tumor. My oncologist says all tomors are frozen so lab should have it. Can be done at later date so still available. That test can help you know if your tumor is aggressive and if you know your risk. Insurance pays for it. If in 1 lymph node I am sure it would qualify under ins. Check it out.

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@sparklegram

Hmmmmm. Is that unusual ? My Oncologist wants to see me every 6 months.

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I see my oncologist every 6 months and I am 6 years out but fell in high end of low recurrences on geonomic test. 2 lymph nodes positive

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Bottom line is “Cancer Sucks”!!! We no longer have the choices for a healthy body that we used to have. AI’s are currently our best chance for longer term survival by keeping our breast cancer from recurrence; however, the side effects are very challenging to live with. So far, our choices are very few for alternative treatment that is as effective. Until the medical community finds a better alternative, this is all we have. I’ve been on Anastrozole, Tomoxifin, and now Exemestane. My worst symptom is ‘brain fog’. I can deal with the aches and pains, but not being able to think straight or the forgetfulness drives me crazy!!! Those side effects were the worst on Anastrozole, and not much better on Tomoxifin. Exemestane so far has been better for the brain fog, but I do have joint pain. I’ve done yoga for a little over 25 years, and that helps... but some days I hurt so bad that even my yoga practice isn’t any fun anymore. But I’m alive, cancer free, and able to enjoy the company of my family. I only have one grandchild, and she is the joy of my life! I’ll figure out how to put up with the aches and pains... considering the alternative of cancer recurrence! But I certainly don’t like it one little bit!!!

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@karendb

Thanx guys. I see my family dr tomorrow so I’ll double check with him again. They did say the cancer was so small they couldn’t even see it, less than 1 cm. But it had gone into 1 lymph node. They didn’t say I was high or low risk. Just that they got it all and to take anastrozol for 5 years and see her in 2024. I don’t know what I should do now.

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This is pretty interesting. Do you live in a remote area with few specialists/oncologists? I think I have seen on here that others have gone to their GP instead of an oncologist. Did you tell her you were uncomfortable with that? In reality, a GP can do anything an oncologist can do as long as everything is good...I think. I go every 3 months and I do get a breast exam and my oncologist asks me how I feel on the medicine and he does monitor my CA27.29. Why can’t a GP do this? If something is not right, then immediately go to an oncologist. Are there other oncologists in your area? You might switch to one of them if you think it would be good. Personally, I would be uncomfortable seeing my guy less often than I do (around every 3 months) because psychologically I know he is a genius and I have faith in him and his decisions. He is the chief of oncology for a large hospital network which is allied with MSK. He is excited about cancer, genetics, and clinical trials. I think he is into learning more and more about cancer every day. So, I guess if I were you and felt at all uncomfortable with the setup now, I would either tell her or look for a new Dr. A good GP will know if something is off with you if you go regularly and have blood work done and the necessary mamos and MRIs if needed. My daughter’s GP picked up on the fact that my daughter has a very rare liver disease. She did not know anything about the disease, but sent her on to specialists who diagnosed after her blood work showed something that was out of the norm for a while. Psychologically, I need to know that I can see my guy real fast if needed.

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@sandyjr

This is pretty interesting. Do you live in a remote area with few specialists/oncologists? I think I have seen on here that others have gone to their GP instead of an oncologist. Did you tell her you were uncomfortable with that? In reality, a GP can do anything an oncologist can do as long as everything is good...I think. I go every 3 months and I do get a breast exam and my oncologist asks me how I feel on the medicine and he does monitor my CA27.29. Why can’t a GP do this? If something is not right, then immediately go to an oncologist. Are there other oncologists in your area? You might switch to one of them if you think it would be good. Personally, I would be uncomfortable seeing my guy less often than I do (around every 3 months) because psychologically I know he is a genius and I have faith in him and his decisions. He is the chief of oncology for a large hospital network which is allied with MSK. He is excited about cancer, genetics, and clinical trials. I think he is into learning more and more about cancer every day. So, I guess if I were you and felt at all uncomfortable with the setup now, I would either tell her or look for a new Dr. A good GP will know if something is off with you if you go regularly and have blood work done and the necessary mamos and MRIs if needed. My daughter’s GP picked up on the fact that my daughter has a very rare liver disease. She did not know anything about the disease, but sent her on to specialists who diagnosed after her blood work showed something that was out of the norm for a while. Psychologically, I need to know that I can see my guy real fast if needed.

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My oncologist is at the Manitoba Cancer Care Clinic in Winnipeg. That’s where they send everyone that developers cancer. They were really awesome and nice and helpful. I’m going to tell my gp that I’m concerned about it. My oncologist sent a letter and final report to my gp (which I have copies) and turned me over to him. I thought it was odd that I wouldn’t be seeing her more often but thought well she’s the dr. She must know what she’s talking about.

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I was treated for Stage 1 IDC, has a lumpectomy, radiation and chemo. I have been on Anastrozole for just over 2 years. The 2 worst things that I've dealt with are bladder pain, and joint pain, mainly in my hands. My original oncologist moved right as I finished my treatment, and the practice promised a replacement soon. Well I have seen 3 fill ins..2 were a waste of my time, and 1 was awesome. The last one I saw said he'd never heard of joint pain as a side effect!!!!!! Anyway, I feel a little vulnerable. The pain in my hands sometimes is so bad I can't grip things. My Gyn did tell me about a supplement called D-MANNOSE for the bladder pain. The last time my bladder flared up I got some, and it did seem to help. I also use the AZO max strength, and the spasm seem to go away. My last complaint is being HOT all the time, not really flashes, just hot. I don't want to stop even tho my tumor was small, it came back as a high risk for reoccurance. I don't want to deal with MBC if I don't have to. I have moved to Augusta Ga, so I am going to get a new oncologist.

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@oswald3055

I was treated for Stage 1 IDC, has a lumpectomy, radiation and chemo. I have been on Anastrozole for just over 2 years. The 2 worst things that I've dealt with are bladder pain, and joint pain, mainly in my hands. My original oncologist moved right as I finished my treatment, and the practice promised a replacement soon. Well I have seen 3 fill ins..2 were a waste of my time, and 1 was awesome. The last one I saw said he'd never heard of joint pain as a side effect!!!!!! Anyway, I feel a little vulnerable. The pain in my hands sometimes is so bad I can't grip things. My Gyn did tell me about a supplement called D-MANNOSE for the bladder pain. The last time my bladder flared up I got some, and it did seem to help. I also use the AZO max strength, and the spasm seem to go away. My last complaint is being HOT all the time, not really flashes, just hot. I don't want to stop even tho my tumor was small, it came back as a high risk for reoccurance. I don't want to deal with MBC if I don't have to. I have moved to Augusta Ga, so I am going to get a new oncologist.

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@oswald3055 There are two other aromatase inhibitors you can try. I was started off with anastrozole first and the foot, ankle, and hand pains were too much...could barely walk. Then next up letrozole - nope...didn't work for me with pain and other problems. Finally started on exemestane and so very much better. Yes, I still have some problems but not to the extent of the other two. My advice to you is try another AI. As far as being hot, that's part of the problem with reducing estrogen in your body. Exercise seems to help as well as staying hydrated and dressing in layers and try to be in cottons helps.

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I started out on Letrozole and it was pretty difficult. After 2 years I switched to Exemestane. So much better. I still have some stiffness ND joint pain, there is the fatigue, feeling of not being well but I am so glad that I switched. One thing the doctor told me to do is to take a week off and that usually resets things with many months of very minor side effects. You should ask your doctor

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