TRIPLE POSITIVE GROUP

Good morning, ladies.  Have any of you had elevated liver enzymes on the AIs?

Lee A 

Funny you should say that. Thought I noticed a little yellow in my sclera. Asked my MO  last month if my eyes looked yellow . He asked me if someone had told me that they looked yellow. He said no my eyes didn't appear yellow that I had what was called 'dirty sclera' .We discussed my bloodwork and do far no signs.

Paying close attention to it Lee A.

http://mobile.businessweek.com/articles/2014-05-15/searching-social-media-for-drug-side-effects

For

decades, pharmaceutical companies and regulators have relied on reports from doctors and patients to monitor the side effects of drugs. Although the U.S. Food and Drug Administration collects hundreds of thousands of these records each year, that’s a sliver of patients’ negative experiences. Researchers estimate more than 90 percent go unreported. It can take years for the FDA to detect a pattern of problems that leads to changes in how a drug is prescribed.

Some technology companies are betting that combing through patients’ social media posts will yield crucial insights that drugmakers will buy. “Hundreds of millions of people are waking up every morning and writing about their personal experiences,” says Ido Hadari, chief executive officer of Treato, a six-year-old startup based outside Tel Aviv. Treato scours thousands of sites for patient feedback, from Facebook and Twitter to small patient forums. The challenge is to extrapolate meaningful signals from all that noise, says Hadari: “It’s a huge pile of coal filled with diamonds.”

90%

Estimated share of negative side effects that patients don’t report

Researchers from Boston University, the FDA, Harvard Medical School, and other institutions examined 6.9 million Twitter posts over seven months and identified 4,401 tweets that seemed to describe the types of side effects worth reporting to the FDA, known as “adverse events.” Their study, published in the journal Drug Safety last month, found that the proportion of tweets about particular types of complaints, such as gastrointestinal problems or psychiatric effects, roughly mirrored FDA data. “Some high-volume products had hashtags for reporting” adverse events, the authors wrote, citing tweets with the hashtag #accutaneprobz as a way to collect reports about acne drug Accutane.

SpecialK, no, I'm not taking those supplements but after doing many searches of elevated liver enzymes here and all around the internet I saw that your husband had elevated enzymes after taking glucosamine/chondroiton!  

My LDH started to go up after I started the AI; however, I was also taking Doxycycline as a preventative measure for the leaky left breast.  

The doctor ordered FE/TIBC, C-reactive protein (?), CPK (I know what that one is due to my husband's bout with dermatomyositis in 2007/2008) and several others.  The TIBC test shows I have low iron concentration which might (?) indicate I store too much iron?  I've been reading about that and trying to figure it out.  I just finished reading this article:  

Irish in the Blood (The Celtic Curse): 

http://www.americanhs.org/Irish%20in%20the%20blood...

Also, I was diagnosed in 2007 with a "fatty liver," despite the fact I never have more than a couple of drinks a year, yes, per YEAR.  My tumor markers are in the normal range.  1.0 for the CEA and 12.9 for the CA27/29.  ALT, AST, ALP are all high as is LDH.  The part of the LDH that's high is LDH5.  

Ashla, just yesterday I noticed my thighs were looking, for lack of a better word, Shar-Pei-ish.  I try to walk 2-3 miles a day and I've always had relatively firm/muscular legs.  I guess it makes sense since these drugs deplete estrogen and estrogen is important for skin elasticity/firmness.  I've read that in a small percentage of people AIs can cause liver issues but so can many other medications.  

Hi TwinMama!  I love the new photo!  

I've been on Doxycycline, Levaquin and now Clindamycin (oral) since the end of January.  During surgery I had Clindamycin IV (I was able to access all the IV and med records online).  Of course, along with all that, I had a double shot of Percocet for pain in the hospital (I thought that one was going to kill me - I started pouring with sweat and got extremely nauseous).  I'm thinking my poor liver is just worn out and can't keep up.  I didn't even equate the fact that I developed terrible itching while on Doxycycline that became even worse on Levaquin and didn't mention all that to the oncologist.  I was popping Benadryl right and left.  It was awful itching, really worse than any type of itching I've ever had before.  I've since read that itching and darkish urine can all be signs of liver distress.  

Ashla, I've seen some of these sites that show side effects apparently gathered from social media and I wasn't sure how it all worked.  I'm guessing a large number of drug side effects never make it to the FDA.  

LeeA - I was severely allergic to Levaquin - broke out in a nasty blistering rash.  It was given IV after the BMX.  I believe all of my recon issues stem from the fact that I had to go on steroids to calm that allergic reaction which caused a lack of healing with the extensive necrosis that ultimately resulted in the expander loss, and the skin issues that still seem to be causing me problems!  There is definitely a link between AI use and cholesterol, but I think it is not so much the drug as it is the lack of estrogen - I had great lipid numbers - total cholesterol in the 150's until I had a hysterectomy, long before my BC diagnosis - my number gradually climbed to over 260 with no change in diet.  I'm sorry you are having these complicated issues! 

Yes Special K  re link between AI's and cholesterol. Forgot that SE! Had  234 cholesterol prior to BC and close post chemo and pre AI. No meds because  Hdl was great ... 78.  

My cholesterol is now 150 with my Hdl @. 52!  26 point drop!  Not pleased at all.

Ah the "Shar-Pei-ish" looking thighs. check, got those. This disease and the tx's have definitely made me look and feel older than I want to.

anyone on Femara? I have a friend who was on it for 12 years...contrary to protocol. She is an md and research scientist. She looked fabulous when I saw her. Didn't look at her thighs! 

She couldn't do anastrozole because of joint issues.

I talked to my MO about switching to tamoxifen . Thought the discussion was premature  but said tamoxifen was a great med but  for us post menopausal ladies anastrozole was better. 

Special K

So they're definitely extending treatment beyond the 5 year mark? Didn't know that . When I talked to him about it ..... Going for 10 years ....in  December , he laughed and said can we just get through the first 2 years first?

ashla - I don't know if there is that much conversation regarding continuing AI therapy beyond the 5-year mark, I know they are doing it with Tamoxifen.  I think it is currently being looked at and there are no concrete answers as of yet, but because of the potentially damaging SE from AI therapy I think there are questions about long term use.  There is a thread here regarding using AI beyond 5 years, linked:

https://community.breastcancer.org/forum/78/topic/802153?page=10#post_3809473

Because I was 96% ER+ and had already a hyst/ooph nine years prior to diagnosis with BC (so not a lot of estrogen being produced - my SE from AI are consistent with what I was already experiencing) I am inclined to not want to abandon some form of hormonal therapy, thus the thought of a switch to Tamoxifen after 5 years.

Hi everyone just poppin in to wish everyone well and BTW Susan I love family stories.

Morning Camille. You and I up early.

Susan 

Read your post last night. So nice that you share that with us. I agree with Camille. 

You are a talented writer. Hope you save your posts!

geewhiz - if you are doing well on Tamoxifen I would hesitate to make the change!  Yay on coming up to the 5-year mark - awesome!