Aromatase Inhibitors: Did you decide to go on them or not?

Posted by nanato6 @nanato6, Oct 12, 2018

Nanaloves: I’m about to start arimidex and just feel that the contraindications , bone issues etc. are overwhelming. I’m 70 years old, dodged a bullet I feel with zero stage DCIS but the follow up is pretty much no different then if it was more aggressive. I’ve just done 33 treatments of radiation and now they advise arimidex as a preventative. I’m not sure with the beginnings of arthritis and lower back. sensitivity already that I should take it. Anyone not take it and not have a recurrence within the 5 years.

Interested in more discussions like this? Go to the Breast Cancer Support Group.

Thank you, I was in NJ in May.
But - not now.
I'll show the Paragraph to my Doc. Sounds a lot better than surgery.

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@lcr2017

Yes, I had hair loss; constantly wiping the shower and swiffering floors. But it sheds and comes in, sheds and comes in…I could actually feel the tiny hairs. When I finally got brave enough during Covid to go for a good haircut, the stylist actually asked me if I had had Covid because many of his clients lost hair due to Covid. I did not explain why…it also turned my gray hair to Snow White. I am lucky to have thick hair.
My husband has problems with his hands where he gets trigger finger. His hand surgeon has an in office procedure where he gently goes in and does some scraping—trigger finger gone, no pain. I hope your insurance can cover something like that because it would be a relief to stay on the meds as long as you can.

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Would you mind describing the 'scraping'? I have a golfer friend who has trigger finger issues and is looking at needing surgery which he's not sold on as the only solution. Thanks!

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@chickie

Where do u live? Doc Name? I've had a trigger finger surgery - Lots of PT -
3 fingers have a trigger.
Also, hair loss!!
I'll never take anastrozole again.

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Please explain trigger finger.
I’ve been on Letrozole for 6 months. This week I’m experiencing something with a couple fingers on each hand. On their own they extend and get so stiff I can’t bend them until they relax on their own which is about a minute or so. Thank you.

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@christerella

Can you please tell me how long after taking anastrozole you started to lose your hair? Any other debilitating problems?

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Almost immediately. After washing my hair, if I ran my fingers through, enough would release that I had to use the trash can, not the shower drain. But I have thick hair. It really surprised me though. On the other hand, it stopped almost immediately once I finished treatment. In and out of fatigue, trouble sleeping, aching joints. BUT, I have friends who couldn’t even put their shoes on so they were allowed to switch to tamoxifen.
I have a friend with prostate cancer on hormone blockers and he recently talked to me about not having hair on his arms and legs anymore. I don’t think he notices hair loss because it’s cut short. Mine is shoulder length. Just yesterday, I started to feel little hairs on my arms, so it must be coming back.
I really tried hard because I was so grateful not to need chemo and felt I had to give it my best. And this all happened a year before my son’s wedding. I think it felt harder each year mostly because I was getting older too. My doctors were also great cheerleaders.

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@lisajoann

Sorry I just saw this… stage 1, no nodes, grade 3 with lvi… high ki67. Lumpectomy.
I did chemo, rad, tamoxifen for 5 and now in AI for 4 years… I will be cancer free 10 years this October. Praise God🙏

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@lisajoann I had the same pathology but low Oncotype score, so no chemo. What was your Oncotype score?

I wanted to do 7-10 years of letrazole but I did the Breast Cancer Index test which said no benefit after 5 years. I am now 7 2/3 years out.

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@callalloo

Would you mind describing the 'scraping'? I have a golfer friend who has trigger finger issues and is looking at needing surgery which he's not sold on as the only solution. Thanks!

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This is getting off topic but I hope that it helps the AI people who suffer from trigger finger as a side effect of the medication. But I will respond to help the golfer friend and anyone else who wants to understand better.

The doctor inserted a needle into the palm right below the finger. (This part is not a medical explanation—just an “in the ballpark” of my understanding.) Then he moved it up and down. Apparently, there is something around or near the sheath that the tendon passes through that makes it get hung up. So I don’t know if he was scraping inside the sheath or around. He did that until he felt a release. He did all the fingers that were making a clicking noise and had the potential to lock up. (He has a limit to how many he will do at the same time.) If this method hadn’t worked on the one that was completely frozen closed, then he would have scheduled surgery. To unlock that finger because it had been stuck many days over a holiday weekend (and urgent care would not touch it—normally my husband would be able to work it back open on his own, but not this time) he gave it a cortisone shot, numbed it, and then frighteningly pulled it open. This was done days prior to the doing the scraping. It seems to be a condition for my husband but so far, he hasn’t had any new triggers in 4 years. He left with a little soreness but no real pain. It was amazing.

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@christerella

Can you please tell me how long after taking anastrozole you started to lose your hair? Any other debilitating problems?

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difficult to say re hair. I thought I was losing hair from old age - then I think I read about it on this Mayo --
3 trigger fingers. (1 had surgery). Lots of Hand PT. My Doc really pushed me to take anastrozole - he did not Warn me about trigger fingers and HAIR LOSS.!
I'm still doing PT for 1 finger - it hurts. Could not do touch type.
Good that I am retired.

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@pbnew

Please explain trigger finger.
I’ve been on Letrozole for 6 months. This week I’m experiencing something with a couple fingers on each hand. On their own they extend and get so stiff I can’t bend them until they relax on their own which is about a minute or so. Thank you.

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Trigger Finger and heightened risk for Carpal Tunnel Syndrome are both a submenu, in a sense, of the arthralgia side effects of aromatase inhibitors. One study noted their frequency and that they might be being overlooked by patients as arthritis or general 'aging.'
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Increased Risk of Carpal Tunnel Syndrome and Trigger Finger in Women Using Aromatase Inhibitor Medications

CONCLUSION: Our study demonstrates that females who used AI medication were at increased risk of developing CTS or TF within 1 year of use. 
https://meeting.handsurgery.org/abstracts/2020/HS25.cgi
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Incidence and Treatment Efficacy of Trigger Finger in the Breast Cancer Population on Aromatase Inhibitors

Conclusions: This study demonstrates for the first time the incidence, treatment outcomes, and surgical risk factors of trigger finger in patients on AI therapy for breast cancer
https://pubmed.ncbi.nlm.nih.gov/34078170/

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@lcr2017

This is getting off topic but I hope that it helps the AI people who suffer from trigger finger as a side effect of the medication. But I will respond to help the golfer friend and anyone else who wants to understand better.

The doctor inserted a needle into the palm right below the finger. (This part is not a medical explanation—just an “in the ballpark” of my understanding.) Then he moved it up and down. Apparently, there is something around or near the sheath that the tendon passes through that makes it get hung up. So I don’t know if he was scraping inside the sheath or around. He did that until he felt a release. He did all the fingers that were making a clicking noise and had the potential to lock up. (He has a limit to how many he will do at the same time.) If this method hadn’t worked on the one that was completely frozen closed, then he would have scheduled surgery. To unlock that finger because it had been stuck many days over a holiday weekend (and urgent care would not touch it—normally my husband would be able to work it back open on his own, but not this time) he gave it a cortisone shot, numbed it, and then frighteningly pulled it open. This was done days prior to the doing the scraping. It seems to be a condition for my husband but so far, he hasn’t had any new triggers in 4 years. He left with a little soreness but no real pain. It was amazing.

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It 'sounds' amazing. Maybe it's a kind of micro-micro surgery, a very junior version of the one that cuts the tendon to make a wider opening. Another golfer friend had that after putting it off for years. It was a success too. His only regret being that he put it off.

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I fully understood the possibility of side effects with aromatase inhibitors, but was willing to endure quite a lot in order to cut my cancer risk. I think discussion of side effects needs to include the cancer risk that prompts us to try the meds in the first place.

I was fairly lucky in day to day side effects (hot flashes at first, joint pains later which were relieved by walking at least 45 minutes, dry thin skin) and had bone loss that aggravated my already advanced osteoporosis. But I have not had a recurrence of my cancer and it's been 7 years knock on wood.

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