Ongoing symptoms of ET

[Hazelgreen]

Published in Oncology

Journal Scan / Research · December 21, 2022

Long-Term Sequelae of Endocrine Therapy Among the Survivors of Breast Cancer

Breast Cancer Research and Treatment

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This observational study reported the long-term sequelae of endocrine therapy (ET) among the survivors of breast cancer. A significant improvement in the overall vasomotor symptomatology and quality of life was noted in the long term; however, other ET-relevant symptoms, including joint pain, weight gain, fatigue, low libido, and vaginal dryness, did not improve over time.

Survivors of breast cancer appear to recover well overall when it comes to quality-of-life issues following ET. However, they can still suffer from ET-specific symptoms in the long term.

[TammyCross]

You are full of good news, bad news on Christmas day! The vasomotor symptoms that go away are hot flashes. I guess that is good (I never had them with AI). Most troublesome for me are two of the ones that don't go away: joint pain and fatigue. I have found latey, to my dismay, that skipping exercise alleviates joint pain and fatigue. This is bad -- those endorphins really help with staying in the present, enjoying life and not fretting about cancer, and exercise is supposed to be the most effective in preventing fatigue.

[bikebabe in reply to TammyCross]

I’m with you on that. The joint and shoulder pains appear to be better the less I do but then feel exhausted and demotivated. So I now take more paracetamol to cope with the pain.

[TammyCross in reply to bikebabe]

I take ibuprophen, but try not to take every day. I take it some mornings so I can dance, exercise. Otherwise, I not only hurt, I can't move well. It wakes me up at night, and it hurts to get up in the morning. I almost never take it at night, though.

I don't know paracetamol. Probably the same kind of thing, but perhaps we call it something else in the US.

[bikebabe in reply to TammyCross]

I can’t have ibuprofen but think tylenol =paracetamol

[TammyCross in reply to bikebabe]

I asked the nurse practitioner today if I should take Tylenol or Advil (Ibuprophen). She said tylenol is hard on the liver, and I should stick with Advil, and one a day was not too much, and I should try taking one at night, since it hurts the most during the night. I think my primary doc prefers Tylenol. Aren't they pretty much the same?

[bikebabe in reply to TammyCross]

Tylenol is for pain relief and ibuprofen is anti- inflammatory which can reduce pain if it’s caused by inflammation. The latter is hard on the stomach, the former on the liver so I guess you choose your poison. I only take tylenol on bad days when my spine mets ache bad as well the shoulders.

[TammyCross in reply to bikebabe]

Oh, thanks. I thought they did pretty much the same thing. Ibuprophen works for me, so mine must be inflammatory. Took aspirin yesterday. Talked to oncology nurse practitioner in video visit yesterday. She concluded my pains are a side effect, not from bone mets, because my mets are all inactive. Maybe that is why Ibuprophen works? My understanding is that Arimidex attacks synovial membrane. Not exactly the same as inflammation, but close?

(I count on people on this board who know a lot more medicine and physiology than I do, although I am not a slouch about looking stuff up and reading research.)

[bikebabe in reply to TammyCross]

oh that’s interesting. Thank you.

[TammyCross in reply to bikebabe]

Found a file I had saved on synovial fluid. Apparently, they can test it for inflammation, and there is even an injection to help. I also recently read about these injections, comparing them to cortisone shots. These are used by people with severe arthritis. Cortisone seems to increase arthritis over time, by hyaluronic acid does not, and is effective at reducing pain. I am going to ask about getting this treatment. Why not? I assume they won't do it, because so many of their patients have joint and bone pain from AIs and no one has mentioned it to me.

"Viscosupplementation injections contain hyaluronic acid, which is essential for healthy synovial fluid. It's called viscosupplementation because hyaluronic acid gives synovial fluid its viscosity (thickness and stickiness)."

"Inflammation leads to lower amounts of hyaluronic acid in the synovial fluid. Studies suggest replacing it with injections right into the joint, where it's needed, can help alleviate joint pain."

I also recently read about these injections, in a study comparing them to cortisone shots. These are used by people with severe arthritis often to delay joint replacement. According to this study, cortisone should not be used over the long term. It seems to increase arthritis over time, but hyaluronic acid does not, and is effective at reducing pain.

I am going to ask about getting this treatment. Why not? I assume they won't do it, because so many of their patients have joint and bone pain from AIs and no one has mentioned it to me. Also, everyone I know with joint pain has been given cortisone.

[TammyCross in reply to TammyCross]

Whoops, same paragraph repeated. Well, twice is a charm?

[kokopelli2017 in reply to TammyCross]

Chris...I think the saying is 'three' times is a charm....lol.

very interesting on the synovial fluid and hyaluronic acid.....thanks.

[TammyCross in reply to TammyCross]

Whoops again. I did some more research on hyaluronic acid. As usual, these miracle drugs with no downside are not. Apparently, the initial small studies showed great results without the negatives of cortisone injections, but this did not pan out in the larger trials. Seems there was a placebo effect. No wonder all docs and our oncologists are not rushing to use this treatment for joint pain and loss of synovial fluid. Too good to be true.

[kokopelli2017 in reply to TammyCross]

hi chris. no, they are not the same. both are OTC and both used for pain... but they work from very different mechanisms. Tylenol is hard on the liver(higher doses) while ibuprofen is hard on the kidneys(long term, higher doses).

Ibuprofen is an anti-inflammatory....which makes it a good choice for joint pain which usually involves inflammation.

Tylenol is not an anti-inflammatory. it is an effective pain reliever and also good for reducing fevers.

when you say you are taking 'one' ibuprofen....what is the dose? if you are taking OTC ibuprofen then one tablet is usually 200mg. if you have a prescription for them...then they are usually at a high dose of 800mg. I am going to assume you are taking the OTC version. well, that would be one tablet of 200mg which is a very small dose in a 24 hour period. most often a person would take 2 tablets (400mg) and you can take every 6-8 hours. you might want to think about taking 2 tablets twice a day. that is still a smallish dose and you may have good pain relief which would be great.

I take 2 tablets(400mg) of ibuprofen 2 or 3 times per day.....on my oncologist's advice.

oops.....just noticed you already discussed this with bikebabe. well, maybe there is something useful in what I wrote.

carole💛

[TammyCross in reply to kokopelli2017]

Yes, 200 mg. I also had by my bed a children's chewable Advil. This was great. I could take it in the wee hours without getting up and getting something to drink and it was tasty, too (grape flavored!). That worked fine. Turns out that was only 100, and it will be difficult to get again because they are rationing children's pain and anti-inflammatory meds because of run on them with all the flu and RSV.

[kokopelli2017 in reply to TammyCross]

it's scary for the mom's for their babies. my little grand-cub is teething something fierce and my daughter is rationing her ibuprofen and tylenol infant/children's drops. she is so worried if one of them (she has two little cubs that I adore) were to get really sick. I think our grandparents just rubbed whiskey on the babies gums....lol. pretty sure that is now considered 'abuse'.

so you could (by label) take 2 tablets of the ibuprofen if your pain is still significant after just one. but you may prefer not to. and I guess you would need to get onc's okay. maybe you have contraindications. wearing my RN hat for a moment😉. XO

[TammyCross in reply to kokopelli2017]

No need to take two. Two hundred works fine, and 100 grape flavored even better, but I won't take it away from kids.

[diamags]

Well.... check, check, check, check on all the symptoms. However, I've had a long time (don't want to jinx it, scans next month.) On endocrine therapy and wouldn't mind more!

[Guitarbella]

Thank you for sharing this. I wouldn’t know where to look so it’s great you share these articles. There seems to be so much research going on, it gives me hope for the future. xx

[kokopelli2017]

hi Cindy.

thanks for this. I assume ET therapy includes fulvestrant. I find the fatigue to be really rough. having recently switched from letrozole to Fulvestrant, there was a significant bump in my fatigue. although hoping it is working🙏....scans in a month or two🤞. I believe you are on fulvestrant as well.

best wishes and happy holidays🌲

carole❤️

[Hazelgreen in reply to kokopelli2017]

Hi Carole,

Thanks for the good wishes. I hope your Christmas was fun, and you had the chance to enjoy your grandbabies! From the following 2010 article, I think that you are correct in assuming fulvestrant is an endocrine therapy (I am not on fulvestrant. I still take letrozole with ribociclib).

"Fulvestrant is a novel endocrine therapy for breast cancer, with a unique structure and mode of action. It binds competitively to the oestrogen receptor (ER), with high affinity, and downregulates ER by functional blockade and increased turnover. Fulvestrant has reached the clinic via extensive pre-clinical and clinical trials, which demonstrated fulvestrant's unique characteristics and showed that they translate to equivalent or improved clinical efficacy compared to established endocrine agents. Fulvestrant is currently licensed for use in postmenopausal women with hormone receptor positive advanced breast cancer which has progressed on prior endocrine therapy. As a pure oestrogen antagonist, fulvestrant avoids the risk of detrimental side effects of selective ER modulators such as tamoxifen, which has partial agonist activity. Fulvestrant, the only parenteral agent in this setting, has a good side effect profile and is well tolerated. Due to its unique mode of action, fulvestrant lacks cross-resistance with existing agents. Fulvestrant is the subject of much ongoing research, which utilises knowledge of its novel mechanism and pharmacokinetic profile in order to optimise clinical efficacy and explore new roles, including first-line use in advanced breast cancer, use in combination with existing agents, in males, and in premenopausal women, and use as an adjuvant therapy."

[kokopelli2017]

thanks Cindy for all this information. a lot of women do well with fulvestrant. I must admit I miss the letrozole...I tolerated so well. let's hope the letrozole and kisquali continue to be good to you👍. carole XO