Androgen Receptor Testing & Treatment

Romansma

I am having a hard time finding much information on this subject. There is a ton of buzz surrounding Androgen Receptors and Breast Cancer, but I am looking for the real life experience stuff. I had asked for testing of my tumor about 6 months ago, and then again a couple of weeks ago. At my MO appointment a couple of days ago, I was told the testing had been ordered, but they were having a hard time getting results because it was a bone sample. However, yesterday, we got results! I am told my tumor shows 99% positive for Androgen receptors. I am still estrogen positive, but negative for both HER2 and Progestrogen (this was not a new biopsy, it was tissue from a biopsy done 2 years ago). Anyway, I'm told that I may be eligible to take Xtandi off label. I see a few postings from 2013 about a trial, but they are very limited. Has anyone participated in a trial targeting Androgen receptors? Is anyone receiving treatments? I know many of the initial trials targeted triple negative BC, but recently, they are being expanded to cover ER positive BC too. Any information or experience you have would be great! I have a big decision to make. I am being told my tumor load dictates IV chemo (Gemzar). I have tried to avoid chemo as long as I could. Would I be foolish to try Xtandi instead?

diana50

Thanks for this thread. I am going to discuss with my onc next time I see her. Hadn't heard about androgen receptors and testing.

Options. Options. Options. 👍

Bestbird

This is a fascinating topic, and I believe that one day Androgen Receptor (AR) testing and treatment will become as commonplace as ER.

Below from my MBC Guide is aadditional information. You (and others) are welcome to request a complimentary copy of the 100+ page booklet by visiting:http://www.inspire.com/groups/advanced-breast-cancer/discussion/ive-sent-over-400-copies-of-my-mbc-guide/

According to Jennifer Richer, PhD, investigator at the CU Cancer Center, "We're on the cusp of a major revolution in the way we treat breast cancer. It's increasingly clear that androgens and Androgen Receptors can influence many breast cancers as well. AR is actually even more prevalent in breast cancer than estrogen or progesterone receptors. Targeting androgen receptors in breast cancer gives us a new way to attack the disease." From: http://medicalxpress.com/news/2014-12-san-antonio-androgen-breast-cancer.html

• Enzalutamide (Xtandi or MDV3100), an Androgen Receptor (AR) Blocker: Just as a large amount of breast cancers are ER positive, a majority of breast cancers are Androgen Receptor (AR) positive.In a study of 2,171 invasive breast cancers 77% overall were positive for AR by immunohistochemistry.Among breast cancer subtypes, 88% of ER+, 59% of HER2+, and 32% of TNBC were positive for AR expression by immunohistochemistry. Similar to ER and PR, AR expression is associated with a well-differentiated state and with more indolent breast cancers.From: http://breast-cancer-research.com/content/16/1/R7

Therefore, it may make sense to therapeutically target Androgen Receptors in AR+ MBC in a similar manner as ER receptors are targeted in breast cancer.One AR blocking drug is Enzalutamide, and as of January 2015, several Enzalutamide Clinical Trials are underway for women with MBC in the USA and overseas.

intothewoods

Really interesting! I hope you hear from those who have experience Hope. Is it common for tumor tissue to be saved? I'm wondering if my bone biopsy last year could be tested.

Romansma

Yes, I believe your biopsy should be saved. I've had mine retested 3 times now.

Thanks for the info Bestbird. Do you have any results from any of the trials? I'm having a hard time finding anything except all the hoopla and excitement.

Still hoping to hear from a few of you that may have taken this path already......

ShetlandPony

Romansma/Hope, obviously I don't know all the details and I'm not a doctor, but maybe it is time for some big chemo guns. Chemo side effects are hard, but then so is dealing with pain. If chemo could zap the cancer and reduce your pain, wouldn't that be better QOL? Then maybe go back to endocrine therapy, maybe Aromasin or Xtandi.

You are asking an interesting question about androgen receptors. I am eager to learn more. Like you, I have ILC.

Hummingbird4

Hi Romansma. I have been a lurker for over a year now and when I saw that you needed a response from a person with real experience with Xtandi (Enzalutamide), I joined immediately to get info to you. Your profile is pretty close to mine - and when my tissue (also from 2013) was tested for androgen receptors, I was 88% positive. I had already been on the A/A combo, and did not have any success with it. So in Aug. 2014, I got into a trial with Enzalutamide (Xtandi) and Faslodex. I also had monthly Xgeva. At the time, I had extensive Bone mets only and I was beginning to have difficulty walking. I was concerned because I was told that there was a very slight chance of seizure as well as some women experiencing confusion and mood swings while taking Enzalutamide. I was in the trial for 8 months and the only side effect I had was fatigue. Some days, pretty bad fatigue - needing to sleep a couple of hours in the afternoon. Other than that, though, I was fine and had no other issues.

I was scanned every 2 - 3 months. My first scan in December showed a healing of bone mets. I knew it was working because I had no pain at all and was able to walk without any problem. There was a slight enlarging of my right ovary seen on the CT Scan, but a separate PET Scan did not pick up any significant avidity there. So I continued on the trial. Then in Feb. 2015, I was scanned again and both the CT and separate PET Scans showed both ovaries having enlargement and probable metastases. I had surgery to remove the ovaries, and this was confirmed. I was off the trial and went on to another trial which targeted a few of the genetic mutations I was found to have. The protocol was brutal and after 4 months of that, I had more progression - abdominal wall and diaphragm.

As of last week, I began Ibrance and Femara which I had learned so much about already from the thread you had started. Thank you so much for all of your info. I was anxious to get this out to you. I am hoping that if you decide to move on to Xtandi, that you will have great success with it. With the great way it was working for my bone mets, I am hoping the same for you. Good luck with your decision.

Diane

Romansma

Wow, Diane, thank you so much for writing! This makes me hopeful. My bone mets are extensive and we are worried about using another hormone therapy that may not work fast enough. Do you know if any of the results from these trials have posted yet

Romansma

Shetlandpony, I appreciate your input and yes, pain is why I'm considering taking the Gemzar now. But, I have nothing to say it will work any better than anything else. That's why I'm exploring this avenue. Whether I choose to take the Xtandi now, or keep it in the bag of tricks for next time, gathering information should help all of us.

Question, since a couple of you are ILC. Has hormone therapies worked for you? I seem refractory on all of them. That could point to why Androgen therapy might work based on what I've read so far.

Hummingbird4

There are news releases online with results for Enzalutamide (Xtandi), mostly for triple-negative breast cancer. I don't see any results posted yet for the clinical trial I was on. I was on MDV3100-08. Enzalutamide with Fulvestrant.

ILC is such a sneaky animal. Hormone therapies have not worked for me. That is why my onc was very excited to be able to attack the androgen receptors, and this did heal some of my bone mets and keep some stable. Everything I read and was told about this treatment made a lot of sense. But so did the trial I just recently was on that attacked some of my known mutations. I was taking two powerful drugs at the highest dosage, BYL719 and BGJ398. My cancer worked around the drugs and still progressed after only a few months. It's frustrating!

I certainly understand your dilemma. I also had to make the decision whether to begin Ibrance and Femara or go right to Xeloda. And, like you, I am trying to stall having to go to chemo because my onc always told me that chemo wouldn't work well for me - so I chose the Ibrance. Difficult decisions.

Romansma

I am the same. Chemo doesn't work well for ILC. Hormone therapy should, but hasn't. There is something driving this ILC, but it seems to be a mystery. It sounds like Androgen receptors might be part of the equation, but something is still missing. Thank you so much for joining and sharing your information. This will help many others going through the same decisions that we are

ShetlandPony

ILC ER+ PR+ HER2- Which therapies worked for me?

Tamoxifen epic fail. (Stage i to stage iv in three years.)

Taxol worked extremely well. (Complete metabolic response.)

So far, so good on Ibrance + letrozole. (On it less than a year.)

I think when ILC goes to PR negative, maybe it is a different ballgame.

Romansma

Yes, I'm pretty sure it is a different ballgame.

Back on the Androgen front, I have applied to the drug company to see if they will provide Xtandi to me off label. My insurance has already denied it. I checked to see if I might be able to pay out of pocket and it is $5000-$7500 per 30 day supply. I won't be able to swing that so I am at their mercy on this. I should hear back this next week. I am a bit worried because their online information says they will provide it for FDA approved indications and this would not be an FDA approved indication. I'm hoping they have another avenue. My MO checked on all the trials and tells me they are closed, for now. If anyone knows of an open trial for ER+ BC, please let me know.

Hummingbird4

Romansma - I'm sorry to hear that the trials are closed. Of course, your MO knows way more than me - but I did a quick check on clinicaltrials.gov and I didn't see anything open for mbc. I know that the drug Xtandi has FDA approval only for men with advanced prostrate cancer at this time. But I'm confused as to what is going on with the trials for breast cancer.

I wish you luck and hope you can get it approved.

Diane

Bestbird

You may want to consider calling 1.800.4.CANCER and having a trained NIH representative run a complimentary clinical trial database search for you for open clinical trials using Androgen Receptor targeted hormonal therapy for mbc. Sometimes when we do our own searches, viable trials fail to appear (for example, a trial search for the condition "metastatic breast cancer" may not reveal a viable trial that appears when a search is done for "advanced solid tumor").

I hope you find an open trial!

Romansma

Thank you, Bestbird! My MO received a note from the drug company yesterday that they would have an answer on whether they could provid the drug to me within the next couple of days. Still hoping! I will call tomorrow and see if I missed any of the trials.

Heidihill

Hoping you get the drug asap!

LindaE54

Wishing you luck Romansma!

Romansma

I still have a very puzzled look on my face right now. I'm not sure whether to believe it or now, but I just received a call from my Oncologist's office and was told that I was approved to receive Xtandi. The specialty pharmacy is supposed to be call me soon. I won't fully believe it till they put it in my hands, but I think I might get a chance to try this off label. I'm pretty stoked, as I think it will work for me better than chemo right now. Although, I'm a bit of a lab rat since there isn't much to go on.

Please, if there are others out there that have taken androgen inhibitors for breast cancer, please share! Otherwise, I will definitely share my experience here for whomever comes next.

Diane, can share a little more with me about side effects and your experience taking xtandi? Really, only fatigue? No acne or mustaches?

I will be taking this as a single agent, no combo with Faslodex or AIs, as I have failed all of them.

Hummingbird4

Hi Romansma - I am SO happy to hear that you are getting Xtandi. And for the 8 months I was on Xtandi (plus in my case I also had the monthly Faslodex and Xgeva shots) - I had NO other side effect but Fatigue which did get a little bad some days. No acne, No mouth sores, No mustaches, No hair thinning - LOL. I just got used to having to take a big nap every afternoon - around 2 hours. I had to schedule my day around knowing that I was going to feel that fatigue and would need that sleep.

Any bone pain I was having was completely gone with this treatment. I had extensive bone mets and one lesion was right in my hip socket which made walking more and more difficult due to pain. Well, no more pain. The Xtandi and Faslodex healed some of the bone mets and keep the others stable.

Wishing you Good Luck and a very long run on Xtandi!

ShetlandPony

Wow! You're getting the Xtandi, Hope! Glad for you. How great that Hummingbird is sharing her experience. I know you'll keep us posted. Bestbird, thanks for the info on finding trials.

Romansma

That's great about the side effects. I've had a lot of fatigue on other treatments, so I should handle that in stride. I have extensive bone mets, also, and the pain is getting pretty tough to handle. I'm on MSContin, Percocet, and Dilaudid trying to control the pain. I'd love to be able to cut back on some of these!

intothewoods

Such good news, Hope! Wow! Wishing the best with this treatment and that you can cut back on the pain meds.

LindaE54

Good news Romansma! I'm thrilled to read this. Wishing you the very best.

Hummingbird4

I also wanted to mention again that some women on Xtandi experienced confusion and became very nasty at times, enough to cause them to drop out of the trial. At each of my monthly checks, the trial nurse would turn to my husband and ask him directly if I was becoming moody. I never had any of that, though.

Romansma

Thanks for bringing that up. I'll be on the watch for that!

Bestbird

So happy to hear that you'll be getting Xtandi! I hope that you'll avoid any mood swings, and that your fatigue will be readily manageable.

Most of all, I hope you get a very long time frame of good results on it!

Kjones13

hope!!!!!!! Yay!!!!!! So excited for you!!'

RosesToeses

Great news! Please let us know how it goes (and praying it goes great!).

Romansma

Down the hatch! I took my first dose tonight!

Woodylb

Yayyyyy Hope! I truly wish this to be the answer to your hard headed cancer. Good luck on it and keep posting so we know how you are and if xtandi will do the job. Lolll now i sound like the person who uses the rat in the lab. My prayers to you Hope. Hugs.