BRCA 1/2 & AIs

mskipper

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:)

Bonnygg

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

Anonymous

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..