"Roll Call" for those who've stopped Hormonal Therapy early - short post to share status?
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6 month medical update: NED (No evidence of disease). Still on the Dr. Berg Healthy Keto plus Intermittent Fasting diet which I love: dropped from 167 at heaviest to 126 now (5'2" small boned), exercising one time a week, but should do more. Hair getting thicker, less gray, curls from chemo all gone. More energy, still insomniac at times though. All blood tests good except cholesterol is high. On no meds, take vitamins though.
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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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