Aromatase Inhibitor and just walking away.

muska

@ Arby: Please check this page on BCO: Recurrences linked to not taking hormonals. It includes link to the research study.

Best to All

MariH

I have not started my AI. But, strangely enough, I am having some of the symptoms. I’ve recently started having hip and calf muscle pain. My hair is shedding much more than normal. I’ve become noticeably more forgetful and sometimes overcome with brain fog.

In any case I am still concerned about the AI side effects. I need to have a heart-to-heart with my MO.

ErenTo

Lita, we can certainly agree on live and let live approach!

muska

MariH, a good conversation with one's MO is what everyone should be doing - no serious health care decision should be made based on the information from this or any other website. Your best source of information is your medical team (with all due respect to BCO)

Brutersmom

MariH, Talk to your doc and rule out any issues. I started shedding hair about 6 months after surgery. Also the same time I started ALS. Hiar loss and brain fog can also come from stress related to diagnosis and surgery.

SpecialK

MariH - ask your doc to check your thyroid - your symptoms sound similar to issues with it

Icietla

BosumBlues -- I have no information that aging, nor aging skin, is a disorder, disease condition, unhealthy, a health problem, anything like that.

Moderators

Please all remember, the description of the Forum:

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.Also, please check out this thread:Information on AIs

snowbird1943

Thank you Muska for your posting and link for Recurrences linked to not taking hormone blockers. The stats for recurrences were much higher than I had expected from some of the stats in former postings. It answered my question about only taking it every other day as well as that is what I have been doing with Als due to side-effects. I was also Stage 3 with 4 out of 5 LN positive. So similar to you except I just had a lumpectomy on LB in 2016. Good luck and thanks for the information.

Brutersmom

Today my husband was looking for something and said, I had it when.... I don't remember ever hearing the story before. This has happened to me several times with different people. I stopped anastrozole after a year and 1/2 because of physical side effects and lack of sleep. What I find upsetting is that there have been events I have no memory of that happened whien I was on the drug. I have always had an amazing memory. This has again left me feeling unnerved. I don't feel like my memory is as sharp as was before aromatase inhibitors. The MO wants me to try going back on in the spring after taking a year off to see if the side effects occur again. I have been off about 7 months. Frustrating.

Lita19901

Brutersmom, did the rest of your side effects go away after you quit?

CCtoo

I am 81, and tried ..again...to take Tamoxifen....and just can''t handle side effects!!! So..I just basically have only had lumpectomy..nothing else!! I feel good. Year since surgery.

Brutersmom

Lita19901 For the most part yes. It took a while. My GP said it could take up to a year until I knew exactly what was and wasn't permanent.

Lita19901

Brutersmom, thanks so much for answering! Did you have any trouble with carpal tunnel and/or neuropathy

bravepoint

Lita- I did on Letrozole. I only took it for 2 weeks and my right hand was going numb while sleeping, driving, knitting, writing, typing etc. i took a 2 month break then started on exemestane (Aromasin). The hand has improved but is still tingly and numb often. I switched to left handed track ball for my computer which helps. My MO didn't think the Letrozole had anything to do with this SE but I think it's a bit too much of a coincidence.....

Brutersmom

Lita, carpal tunnel no. I had no aches or pains prior to arimidex. I did develop intermittent sever pain in the joint at the base of my thumb. That flared up again last week but it has since resolved it self. I did have some foot pain while on the meds and that has gone away. My shows always felt like they were to tight. Back in early summer I became very achy all over. I had the Dr test me for lymes disease because I live in an area where ticks are common. That was negative. His comment at that time was that I might need about a year to figure out what would resolve itself and what damage would be permanent. My medical Dr. feels it is a very harsh drug. Femara gave me almost disabling lower back pain. That got better within days of stopping it but I notice now that that area seems prone to injury which it wasn't before. My question that I have not seen discussed much is what damage did my inability to sleep cause. I went for about a year sleeping only one to 2 hours a night.

Lita19901

Brutersmom, how in the world did you survive on so little sleep???

Bravepoint, that's confusing about your doctor. I read in numerous places that the AI's are tied to carpal tunnel. It's the side effect of whichI am most afraid. I already have it but in a non-problematic way and I don't want to add to it.

Brutersmom

Lita. I don't know. I work and I just kept pushing through. After a while I just didn't care anymore. When I started having anxiety attacks, feeling like my insides were shaking, injured my foot and it would not heal up I knew I had to stop. MO had me try Femara and I went from the frying pan into the fire when my back started hurting so bad I could barely walk along with the other symptoms.

meagsull

hi! where did you find evidence regarding low estrogen and interstitial cystitis? hope you are doing okay. i have it too and have hx or lymphoma and achalasia

meagsull

any tips for boosting immune system for someone who has many auto immune issues with a hx of lymphoma ? thanks

dtad

meagsull...I have interstitial cystitis. I went to a gyneurologist at a major NYC university hospital. He told me that a lack of estrogen causes it. He said most of his patients are menopausal or premenopausal. I actually went on HRT to treat it and it did help. Unfortunately it probably contributed to my BC and had to stop it when I was diagnosed. It is one of the reasons I chose not to take an aromatase inhibitor. Living with interstitial cystitis is a nightmare. Good luck to all.

annieb4

This post is about walking away from AI's. Most of us here are dealing with really lousy SE's and I think all we want is the understanding that if we do walk away it is for a good reason and one that none of us take lightly or on the spur of the moment. None of us want this damn disease back, but I want to be able to decide how I want to live my life without other people telling me I am wrong, or that I am deciding between life or death. Then there are the ones that say don't come to me if your cancer comes back. I am now choosing between my quality of life and the unknown that it will or will not come back. One big fear it will come back and people will somehow think it is my fault, myself included. I don't need that. It is just such a hard decision. One I have not yet made. It just really pisses me off that this disease continues, after almost 5 years, to reek havoc on my life.

Martini

Hello everyone! I'm glad I found this post. I have decided to stop any hormonal treatment. That decision has not come easy and I am still not totally comfortable with it. I am a mess on any of them, the AI's being the worst. I hurt so bad, can hardly use my hands and despite taking sleeping aids am not sleeping. I'm exhausted and still can't sleep. The hot flashes are constant, make me nauseaus and angry. I now have tried all three with the same SE.

Tamoxifen did not cause the pain or insomnia however caused terrible depression and uncontrollable rage. My children were shocked to see me in such a state. I wonder if taking an antidepressant with the tamoxifen would help with the emotional distress it caused. Has anyone had similar SE and found relief with an antidepressant?

I was off all hormonal blockers for two months and finally started to feel like myself again.

Annieb4. ..I hear you.

wabals

Pretty sure I will be stopping also. They all raise my liver function tests which my GI doc does not like. Also have developed autoimmune issues and of course the joint pain is terrible. At 74, It is just not worth the small benefit I might get from it. I am very active normally and want to remain so.

Brutersmom

Martini, I had the same issue. My only option was to stop so I could have my life back. I took it for about 14 months and I stopped because my quality of life was about a 1.

wabals

KB870 you made my day! Thanks and best to you

Lovinggrouches

Effexor, magnesium and turmeric have helped me tremendously. I’m 43 and have been taking tamoxifen for about 1 1/2 years though I struggle daily still with insomnia. I have taken 2 prescription sleeping pills , tried melatonin, sleepy time tea, essential oils and fixing to try liquid herbal medicine. I stay so exhausted that I fell asleep in my chair at work today. I can truly understand why some quit the meds!

Brutersmom

BlosumBlues, Most SE went away within a week or two. The anxiety feeling took a little longer. Some of that may have been from my MO guilt tripping me about the meds. My MD told me that they could come and go for up to a year and that unless they lasted for an extended period of time or did not go away at all we would address them at the end of this year. I have started an exercise program so I still get a little achy but that is for different reasons and feels different. LOL

marijen

Why AIs fail

https://www.cancer.gov/news-events/cancer-currents-blog/2017/endoxifen-breast-cancer-NCI-support

SJI

I decided to not take Tamoxifen - AIs weren't possible due to other health issues even though I am post-menopausal. It was a tough decision. Just saw this article today which made me feel better about my decision.

Invasive Lobular Carcinoma Cell Lines Are Characterized by Unique Estrogen-Mediated Gene Expression Patterns and Altered Tamoxifen Response

http://cancerres.aacrjournals.org/content/74/5/146...

"Our observations that ER drives a unique program of gene expression in ILC cells correlates with the ability of tamoxifen to act as an agonist to induce growth in these cells. This phenotype mimics recent clinical observations that a subset of ILC tumors may be tamoxifen resistant. Genes regulated by tamoxifen as an agonist may serve as powerful biomarkers to identify de novo tamoxifen resistance, thus we envision that a neoadjuvant window trial may be an ideal setting to further examine tamoxifen resistance in patients with ILC."