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Aromotase Inhibitors

Hi all,

I am new to the community. I was diagnosed with triple positive breast cancer, went through chemo, radiation as well as a lumpectomy. I was then told I need to take 5 years of Aromatase Inhibitors. I started on Exemestane, horrible pain and side effects. I changed to Anastrozole, same situation, tons of pain, headaches, barely able to walk. I was given oxy to help with the pain. I was up to taking 6 a day and still couldn’t get out of bed. I then changed to Letrozole. Same situation, joint pain beyond anything I could imagine, I couldn’t get out of bed. I am so afraid of reoccurrence, that when I stopped the Letrozole I started having severe depression and anxiety. I read a case study that compared different dosages and decided to try a half dose daily. Still no relief, no ability to walk without pain. I changed my eating completely to a plant based diet, added supplements such as turmeric and turkey tail. My internal medicine doctor suggested I take DIM Detox, so I started that too. Nothing is working. Has anyone experienced these things and is there anything that has worked for anyone? I would love to hear from others.

Thank you

Comments

  • katg
    katg Member Posts: 193
    edited April 2022

    Trippositive,

    I am on Femara (Letrozole) after my surgery. I have been taking it with no effects. I have Stage 2,
    +, -, HER2+. My HER2+ came from the histology report from the tumor!!

    My hope for you today is that moderators or another person share with you. I had problems with chemo. My blood levels went so low i was hospitalized. I had Taxol and the C chemo for 12 weeks. After one of 4 red devils, I was hospitalized. Fever and incredibly fatigued. The team of doctors in oncology and my MO decided to give me the talzenna pill. A target pill for my BRCA2 mutation. 27 days days later after a pill a day, hospitalization. Chemo is out, and surgery moved up for my left mastectomy 5 weeks later.

    My experience is not usual for everyone. YOUR experience is not usual. I hope your medical team continues to work with you. I am at the City of Hope in Duarte California. They work to find solutions. I know this pill is a 5-10 year once a day for me. My friend with cancer in Texas, MD Anderson, says they have way more resources and treatments than ever. There is one for you. Keep advocating for yourself.

  • trippositive
    trippositive Member Posts: 21
    edited April 2022

    Katg, thank you for sharing. I am at the Mayo Clinic in Arizona. They say AI are the only way to go for me. I have read numerous people and even case studies that people drop out of them because of the side effects. You are so lucky. Do you take any supplements? I did the test and I do not carry the BRCA gene. Do you exercise daily? Do you stick to a certain diet?

    Thank you again for sharing your experience, I heard reconstruction surgery is incredibly painful

  • katg
    katg Member Posts: 193
    edited April 2022

    trippositive,

    I am happy to hear you are also at a great hospital!! They make their decisions based on your case. Make sure you keep them informed. Do they have a portal for patients that you can message on? There has got be be something for you, the DR.s just need to reason it out.

    More info on me is below......not a help for you likely, but a story.

    As to supplements, my med team were cautious of me adding anything besides the D and C i was taking. I followed the recommended dosage on the bottle- Costco orange C-Gummies! I also eat 2 oranges a day.

    After my surgery and chemo being 1.5 months back, I asked if i could add any supplements. I message them i would add citrical- which my nurse friend mentioned- Calcium, magnesium and some other items. When i went to see my MO Friday, i asked her if i am able to add anything for the missing estrogen? She said nothing new for now. Why? I was just starting my first dose of Herceptin and Pejjeta. My HER2 + histology from my tumor got be new directives. My case is odd. She took me to their "tumor round table" of Dr's. to see what they suggest for me. These 2 sets of infusions is it. I am currently a Stage 2, no metastasizing with a mastectomy removing the tumor.

    I walk my 10.000 steps daily. I also started a stretching routine from my mastectomy s assigned occupational department. I go in next week and am going to ask for more suggestions. They may just provide without asking!!

    For food, i ate some of my favorites i was unable to eat during chemo. Daily i am back to my Trader Joes Greek yogurt with rasp and blueberries. A dash of whip cream to mix. 1/4 cup. Salad every day as a meal. Butter lettuce and Spinach and 2 tbls of dressing. I add nuts and "Bagel Seasoning" for extra tast. Low cal cheese. Keep calories low, but taste high. Tomatoes, bell peppers. I also keep the pre packaged bags i get from Sams club. I just add spinach and use less dressing.

    I crock pot chicken that i shred to add to stuff all week. I just bought Talapia i plan to cook a few days this week.

    Above all else is water!!! Since Chemo, i have worked to drink half my body weight. Coffee in the morning does not count. This is probably most important.

    As to reconstruction surgery, it was not for me. My breast area is still partially numb. The pain killers at surgery time helped a few days, and today 7 weeks out i have little pain. I truly believe it was the skill of the breast surgeons and team and the platcic surgeon and his team who did their jobs right. My body did its thing and heeled. No, we will be cutting that breast open again in the same spot to implant the implant and remove the expander. The surgeons will do their job. What about my body? For today, I will not worry.

    Attitude is our key to so much. Ask questions, tell them what is not working, and what is. They cannot help if they do not know.


  • trippositive
    trippositive Member Posts: 21
    edited April 2022

    Thank you so much, I really appreciate your sharing. What a journey. I have asked my oncologist, they referred me to a naturopathic doctor, he charges $500 for a consultation. I think I will probably go that route and hope for some way to continue the aromotase inhibitors.

    Check in after your next surgery, I would love to hear how you are doing!

    Have a great day, Shanno