BRCA 1/2 & AIs
Hi everyone. I am new to the discussion forums on this site. I have spent the last hour reading some of them and am so thankful for discovering the board and for all who post. I am particularly happy to find a board specifically for those of us who have a BRCA mutation.
I am BRCA 2 positive and 43 years old. I was diagnosed back in 2002 with Stage IIB. I had a double mastectomy with reconstruction; chemo; and radiation. I did my 5 year stint with Tamoxifen. I was pretty blessed that through it all I tolerated the side effects.
I took a break from the summer of 2008 until Oct 2010 by choosing not to take an AI. I wanted to see what my body felt like without SEs. Maybe I got spoiled:) I started taking Femara 3 months ago and the joint pain and restless sleep are rough. I am wondering about whether to continue or not...
Does anyone have any info from their onc or what they have read about AIs specifically for those of us with mutations? Which ones work better than others? Do the benefits outweigh the SEs ?
I would also love to hear any success stories of supplements/remedies for the SEs..
Thanks for taking the time to respond.. Mary:)
Comments
-
I had 3+ years of Tamox and 3+ years of Femara.
While on Tamox, I broke my ankle when I dumped my Harley. Five days later I was in the hospital with DVT that went from my ankle up to mid-thigh. I dodged a bullet. After that, my onc took me off Tamox & put me on Femara.
I had horrilble problems with Femara. My fingers that wouldn't bend and were very, very painful. I couldn't even hold a pen. After a year+ of struggling, eathing Motrin, asprin, Tylenol, etc., I stopped taking my Centrium, fish oil & Calcitrate. Surprise. In a couple of days the non-bending, painful fingers had relief. I waited about a week & started my Calcitrate and within 3 days, the painful fingers came back. All the time, I was still taking the Femara. I switched to Oscal and my fingers returned to normal. I added back the fish oil & Centrium. All is good. So it was the type of calcium I was taking.
I now have slightly high cholosterol and must take a very, very small does of Lovastatin. The cholosterol problem is a SE of the Femara.
I'm having PBMX in March. My last Femara will be Feb 14th.
My onc believes Femara is better than Arimidex regardless of BRCA. My older sister is on the Arimidex and doesn't have SE's but she is not BRCA+ and I am.
I was no where near menopause when I had chemo. My first chemo slammed me hard, face first into menopause. I thought I was going to die because of the night sweats. I was up all night sweating like a pig & couldn't sleep. Onc put me on Effexor 75mg. That kinda helped with the night sweats but, I felt fuzzy. We dropped my dosage down to 37.5mg and the night sweats mostly subsided at least to a point I could tolerate. I was on Effexor for 2 or 3 years then I slowly weaned myself off. I very occasionally get a randome hot flash, but the night sweats did not come back..
Good luck.
bonny
-
hi mskipper,
Your BRCA 2 gene mutation has nothing to do with your Femara/Tamox Hormone Theraphy. The Hormone Theraphy prescribed to you is based on your ER+/PR+ diagnosis.
ER is like a glue that coats your cancer cells-- so that estrogen can stick to it and then let your cancer grow (feed on estrogen) so it can grow and multiply.
Tamox works by coating that cell so that the glue does not work anymore-- does estrogen cannot stick on it-- and get hungry.
Now about BRCA2 gene mutation..
Ideally our bodies are programmed to kill cells that turn abnormal (pre-cancerous stage) -- sometiems called programmed death. However, due to gene mutation this pre-programmed death is TURNED OFF-- this is the reason why your cancer cells can proliferate in your body.
So TAMOX/ Femera does not have anything to do with BRCA2..
Categories
- All Categories
- 679 Advocacy and Fund-Raising
- 289 Advocacy
- 68 I've Donated to Breastcancer.org in honor of....
- Test
- 322 Walks, Runs and Fundraising Events for Breastcancer.org
- 5.6K Community Connections
- 282 Middle Age 40-60(ish) Years Old With Breast Cancer
- 53 Australians and New Zealanders Affected by Breast Cancer
- 208 Black Women or Men With Breast Cancer
- 684 Canadians Affected by Breast Cancer
- 1.5K Caring for Someone with Breast cancer
- 455 Caring for Someone with Stage IV or Mets
- 260 High Risk of Recurrence or Second Breast Cancer
- 22 International, Non-English Speakers With Breast Cancer
- 16 Latinas/Hispanics With Breast Cancer
- 189 LGBTQA+ With Breast Cancer
- 152 May Their Memory Live On
- 85 Member Matchup & Virtual Support Meetups
- 375 Members by Location
- 291 Older Than 60 Years Old With Breast Cancer
- 177 Singles With Breast Cancer
- 869 Young With Breast Cancer
- 50.4K Connecting With Others Who Have a Similar Diagnosis
- 204 Breast Cancer with Another Diagnosis or Comorbidity
- 4K DCIS (Ductal Carcinoma In Situ)
- 79 DCIS plus HER2-positive Microinvasion
- 529 Genetic Testing
- 2.2K HER2+ (Positive) Breast Cancer
- 1.5K IBC (Inflammatory Breast Cancer)
- 3.4K IDC (Invasive Ductal Carcinoma)
- 1.5K ILC (Invasive Lobular Carcinoma)
- 999 Just Diagnosed With a Recurrence or Metastasis
- 652 LCIS (Lobular Carcinoma In Situ)
- 193 Less Common Types of Breast Cancer
- 252 Male Breast Cancer
- 86 Mixed Type Breast Cancer
- 3.1K Not Diagnosed With a Recurrence or Metastases but Concerned
- 189 Palliative Therapy/Hospice Care
- 488 Second or Third Breast Cancer
- 1.2K Stage I Breast Cancer
- 313 Stage II Breast Cancer
- 3.8K Stage III Breast Cancer
- 2.5K Triple-Negative Breast Cancer
- 13.1K Day-to-Day Matters
- 132 All things COVID-19 or coronavirus
- 87 BCO Free-Cycle: Give or Trade Items Related to Breast Cancer
- 5.9K Clinical Trials, Research News, Podcasts, and Study Results
- 86 Coping with Holidays, Special Days and Anniversaries
- 828 Employment, Insurance, and Other Financial Issues
- 101 Family and Family Planning Matters
- Family Issues for Those Who Have Breast Cancer
- 26 Furry friends
- 1.8K Humor and Games
- 1.6K Mental Health: Because Cancer Doesn't Just Affect Your Breasts
- 706 Recipe Swap for Healthy Living
- 704 Recommend Your Resources
- 171 Sex & Relationship Matters
- 9 The Political Corner
- 874 Working on Your Fitness
- 4.5K Moving On & Finding Inspiration After Breast Cancer
- 394 Bonded by Breast Cancer
- 3.1K Life After Breast Cancer
- 806 Prayers and Spiritual Support
- 285 Who or What Inspires You?
- 28.7K Not Diagnosed But Concerned
- 1K Benign Breast Conditions
- 2.3K High Risk for Breast Cancer
- 18K Not Diagnosed But Worried
- 7.4K Waiting for Test Results
- 603 Site News and Announcements
- 560 Comments, Suggestions, Feature Requests
- 39 Mod Announcements, Breastcancer.org News, Blog Entries, Podcasts
- 4 Survey, Interview and Participant Requests: Need your Help!
- 61.9K Tests, Treatments & Side Effects
- 586 Alternative Medicine
- 255 Bone Health and Bone Loss
- 11.4K Breast Reconstruction
- 7.9K Chemotherapy - Before, During, and After
- 2.7K Complementary and Holistic Medicine and Treatment
- 775 Diagnosed and Waiting for Test Results
- 7.8K Hormonal Therapy - Before, During, and After
- 50 Immunotherapy - Before, During, and After
- 7.4K Just Diagnosed
- 1.4K Living Without Reconstruction After a Mastectomy
- 5.2K Lymphedema
- 3.6K Managing Side Effects of Breast Cancer and Its Treatment
- 591 Pain
- 3.9K Radiation Therapy - Before, During, and After
- 8.4K Surgery - Before, During, and After
- 109 Welcome to Breastcancer.org
- 98 Acknowledging and honoring our Community
- 11 Info & Resources for New Patients & Members From the Team