"Roll Call" for those who've stopped Hormonal Therapy early - short post to share status?
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Oldladyblues, congratulations on the weight loss! That is my New Year's Resolution. Also, love that you have NED! Not sure if I am the only one, but I HATE when the word "Survivor" is used, especially a "Survivorship Plan!" One can only be a breast cancer survivor if they die of something else. I was diagnosed three times, all new breast cancers, so no, I am not a survivor. I am quite happy being NED.
I went back on Letrozole after my third dx. Felt I needed to, but I still wish they would not mess with our hormones!
Wishing all here a Happy, Healthy New Year!
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Hi @mavericksmom and glad to see you check in. How are you doing on the Letrozole? I think I would have gone onto it if I was in your shoes.
My weight loss was a side-effect (hehehe) of doing Dr. Berg's Healthy Keto plus Intermittent Fasting. I went on it to bring my metabolism into autophagy which is beneficial to a body's ability to "eat up" bad cells and hopefully avoid future cancerous cells … who knows what really works, but this diet was easy for me to follow and so much has improved for me (blood tests and physical wellnes).
I just had a yearly PAP with abnormal results. I was told I have HPV virus active and pre-cancerous cells on my cervix. The VA scheduled me quickly for a LEEP procedure (Jan 9th) to remove those cells from my cervix. Also told that the HPV virus was active LAST year on my PAP but no one told me or scheduled a follow-up. Sigh.
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I wish this thread would get more to post, so I am going to bump it while telling Cliff notes of my story. Diagnosed 2021 IDC. Lumpectomy. 1 Sentinel node. Stage 2B. 2.2 CM tumor. Grade 2. Chemo and rads. Oncotype 34. 99 percent ER. 3 percent PR, HR negative. Current age 66.
Started Arimidex July 2022. Sort of tolerable side effects. Joint pain, but extreme fatigue. Stayed on over a year. Switched to Arominsin every other day. Not much if any difference. Developed two trigger fingers. Had surgery on fingers 3 months ago. No triggers, but the two fingers hurt like hell. Joint pain. Hands and knee pain. Back pain, which I had before, has gotten worse. For the fatigue, Doc put me on Adderall. Makes me feel weird. I discovered Celsius, the energy drink with no sugar. Off Adderall now. Less drugs is better.
I have 2 years and 8 months to go till my 5 years. I am pretty certain the test will recommend 10. BUT, I am struggling to make it to 5, so I will probably stop at 5. Joints are getting worse. I do exercise. I also have osteoporosis before the AI. I was on Prolia. It brought my hips to Osteopina, but spine score got worse. So now I am on a year of Evenity.
I didn't even know when I was diagnosed that there would be a pill I had to take that would make me feel worse. I've thought about going on Tamoxifin for my bones. But since I am higher risk, going on every other day of Arominsin is, for now, the most I will allow myself. QOL is not the best. I'm in pain from the moment I wake up till I go to bed. But, right now, I am NED. No evidence doesn't mean it's not there. It's there. Only, will it awaken? Let's see where I am in a year with these "feels." It might be a different conversation. I've already given up much to try to keep it away. Alcohol, sugar, some exercise.
I strongly believe that my great level of stress and having a healthy cocktail every night for years is what brought this on. Could be wrong, but doubt I am. High estrogen and no PR (your liver can't process out estrogen if it's too busy processing out alcohol).
Ok, off topic a bit, but, it's all relative in a way.
Hope everyone is managing and would love to read more updates.
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Ok, hippmark - I diagnosed 11/2014 - triple positive ... maybe stage 2a.... bilateral mastectomies 12/2014 with negative sentinel nodes … taxol for 12 weeks and herceptin for a year in 2015. Arimedex almost did me in … switched after 4 months to Aromasin - thought it was going well for 3.5 years - hah!! There were lots of bone problems, joint replacements - left hip fractured during replacement due to undiagnosed osteoporsis — the dexa scans don't really show all the bone issues. I was put on prolia because ortho doc wrote in my record that I needed help. But onc took me off after 2 years because of my continuing good dexa scores … acetapbulem (sp?) In other hip broke suddenly - emergency hip replacement. Then they put me on tamoxifen - good for bones - but my liver didn't like it - diagnosed with cirrohsis in 2018. Had to quit that.
Fast forward to June 2023, a routine former smoker lung scan found 4 enlarged lymph nodes … I had just had a covid booster so they slow rolled further testing … but, yes, the biopsy showed breast cancer again - the same cancer from 2014 because it showed signs of treatment - so much for sentinel node biopsies. Apparently the vaccine fired up the lymph and the cancer woke up too. No one ever told me not to take a vaccine in that arm. Hah! So the covid vaccine probably saved my life.
So then I was faced with treatment again with a liver already ruined by treatment. Anyway ... did phesgo and navelbine until the diarrhea was so bad I had no life. Had alnd surgery 10/2023 followed by 6 wks radiation and 10 infusions of kadcyla....no cancer was ever found again. Chest scans next week to verify again ... fingers crossed. Back on exemestane since March 1 this year. Don't want to take it but I am afraid not to. Current age - 70 - just want to make the rest of my lifespan with a good life. We'll see. Looking forward to hearing from everyone.
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Thank you for your reply Desdamona. What an ordeal you have had! It's the fear that gets us. Fortunately, my Oncologist listened to me about my bones on Prolia. But, I had to get approval for Evenity which I had to jump thru hoops to get. Sheesh. Even at every other day, Aromisin is kicking my butt. So I guess it has lowered my estrogen enough at that to have these side effects. QOL or potential return of cancer? Allegedly, the Aromisin drops my risk from 22 percent to 11 percent. That is fairly significant. But when I wake up and swallow that pill and feel the pain and know my joints won't come back from it, it truly is a "hard pill to swallow."
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Checking in, 4 years since treatment and almost 4 since stopping AIs. NED
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@oldladyblue glad you’re doing well. To my knowledge I’m also still ok, stopped AIs after taking them for a little over 3 months in June 2020.
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Hi. Everyone - so, remember I restarted exemestane after my weird recurrence - see above post. I've been on it a year now. I keep wondering if I can stop or go to every other day. Who knows. Wish there was simething else that didn't bother my bones.
Live well, everybody!
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Hello, I was diagnosed in Nov 2022. Left breast IDC Stage 3B, grade II, ER/PR+, Her2 equivocal, FSH (-). Main tumor 2cm, 3 much smaller tumors (referred to as satellite tumors) were against my chest wall. Breast MRI also showed enlarged lymph nodes, PET scan was way worse yet they didn’t seem like a cancer pattern per my Oncologist. More testing showed they were showing enlarged due to mono. Did multiple aggressive chemo rounds and injections. I refused 12 was of taxol since my lymph node issue was not cancer related and that was the only reason they decided to add the taxol time. May 2023- Bilateral mastectomy due to the fact that I had 9 benign cysts in the right breast and there was no way I wanted to go through this again. No ONCO score was done which I found to be odd because it was different for others. Started Tamoxifen, most noticeable to me was the joint pain and hot flashes. Then my liver specialist said I needed to have oncologist changed the Tamoxifen due to me having a fatty liver. Prolonged tamoxifen for me could have made it worse and cause cirrhosis. Switched to Triptorelin monthly injections. Things were going well aside from early menopause symptoms getting worse. To push me through menopause completely they added Anastrozole daily oral tablets to my infections which caused to much body stiffness and pain. I had to see a rheumatologist just to be told I’m now borderline LUPUS along with the menopausal symptoms. We moved from the Anastrozole to Emexestane. The joint pain was now manageable. I started to have florescent light sensitivity, brain fog, weight gain and anxiety. After a while of this I decided to stop the treatment, the side effects were affecting me too much at work. I was without a period for 2 yrs and we thought we had moved me into being in post menopausal status. They decided to test my 2yr old post chemo tumors for an Onco score which was a 6, that was Dec 2024. Here we are in May and my hormones and period are back. I’m concerned because we were under the impression that they had been fully suppressed, well the ovaries at least. And yes, I’m aware estrogen can also be in the tissue. With me having fatty liver I can’t even process enough estrogen to flush it out. I’m wondering if others have been through this??? I feel so alone out here because my family and friends don’t understand my grief in this situation since they have not experienced it. I may have messed up by stopping them sooner rather than later. The waiting to get a response back from the doctor is stressful. Being off the meds made me feel alive again…, no pain, no brain fog. Just me!
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this helps me. I have been on anastrozole for only a month. Terrible side effects. Everything under the sun. Went off for 2 weeks per MO. Started again and they are back. MO switched me to Letrezole. Will start soon. If this is bad too, will be declining AI therapy and take my chances
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Ohhhhh just found this thread/forum. I am currently going through a constant cycle as follows:- Dreadful pain and stiffness, consumes me from dawn to dusk and through the night too if it's a pain night. Then start looking into info re coming of (in my case) anastrozole (just moved from letrozole), then fear kicks in - I'm 56 and have young ish kids, what would I feel if it came back, I'd kick myself for not sticking with it so suck it up. And repeat. I hate how I feel. I play basketball for GB and tournaments ruin me. I feel my oncologist is a 'suck it up' kind of oncologist and wondered if anyone moved oncologists to have someone that works with your lifestyle and treats you like you are a whole person with a life. Having such a rant right now but I am so miserable with this but so scared about stopping.
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Shazzazig — HI, I have found that oncologists have to go with the science. They are reluctant to veer off course. I had a recurrence in my lymph nodes after 9 years - surprised everyone but it had been there all along. My first onc didn't do any scans 'cause he said that he knew my cancer!! The first time I took AIs - anastrozole, exemestane, tamoxifen - ended up with bad bones and liver cirrohsis. When it recurred, I took maybe 3 treatments of some chemo & herceptin/perjeta shots for about three months and had the worse diarrhea ever in my life and just couldn't function - couldn't even walk the dog. I quit the treatment and got approved for AXLD surgery - after that I switched oncologists - woman at a clinic closer to where I lived. She's been great but she still follows the science - she does listen closely. Anyway, I did 10 treatments of kadcyla - not 14 - she listened and agreed I could stop based on my scans, etc. I' took exemestane for two years, which is what she asked of me - she said I could stop but I was scared and decided to take it every other day because there is one study out there that indicates that could be just as effective - but it is a small study. However, my ankle has advanced to end stage arthritis and will need a fusion or replacement - my own research shows I need to be off the exemestane for six months so my bones will revert back to their normal state and stay off for one year to allow the surgery to heal well. All of my six major joints have been replaced - and I do credit exemestane for advancing the problems. Yesterday my opthomologist referred me to a retina specialist because of odd macular changes he saw. On a lark, I googled exemestane and retina — and a whole bunch of rare side effects popped up. Surprised the heck out of me. So now I've decided to stop it - I am hoping my macular reverts to its normal self by the time I see the specialist!!!
So, back to your question — I just don't know — there aren't alternative treatments to breast cancer — they're all poison but I wouldn't be here without them even though I haven't been totally compliant. I will be 72 this summer, My Mom lived to 87 - she really lived well to 85. But I am about as decrepit as she was at 82. I hope I can recover and live well for 10 more years - there are things I want to do!!
I will say that I felt better on exemestane than I did on anastrozole - and I do think there is something "wrong" with me because I just can't take any drugs without weird side effects — anesthesiologists hate me!!! You have a much longer time to go than I — and a family — maybe talk to your onc about exemestane - but if arthritis and joint problems run in your family tread carefully. I wish you the best.
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@shazzazig Hello, and thank you for sharing your experience with us. We’re sorry to hear that you’re going through this. You deserve a care team that listens, respects your voice, and sees you as a whole person, not just a diagnosis. It is absolutely okay to seek a second opinion or transition to another provider to get the care, and support you need and deserve. Some people even call it “firing their doctor.”
If you do decide to make a change, we encourage you to ask around and talk with others about their experiences so you can find a provider who may be a better fit and avoid finding yourself in a similar situation. Hope this helps.
Wishing you all the best as you continue to navigate your care.
-The Mods
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Triple positive, Stage 2a, Grade 3. TCHP (total Pcr), mastectomy (clean margins, no nodes involved), tried all of the AIs like a good little patient and suffered through all of them for a year before throwing in the towel. Horrific side effects, some of which I'm still dealing with and am not sure they will fade or go away. All of this to find out that it might have made a 5-10% difference in terms of recurrence to be on them by my latest oncologist. He would have discouraged taking them. Now, I'm focusing on getting my endocrine system the healthiest it can be and praying for the best. Something to think about.
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