Agatha, that is awesome news! It clearly shows we don't all have the same thing- my tumor was originally much smaller than yours and the whole damn thing was still in there after all that chemo! I actually wouldn't be surprised if they didn't recommend Xeloda, the study that has made it a recommendation was based on women with residual cancer after chemo, and that doesn't apply to you! You might start this trial even before me- depending on your radiation schedule. I did pretty well with radiation- right when I was at the point where it was really getting uncomfortable it was over. It's more annoying to have to go everyday. I've been taking a little break from here lately, I feel my anxiety is back to a normal level again and sometimes coming here freaks me out a bit (although not when I read good news like yours). I saw one of my Dr's NPs for an appointment last week and she told me numbers on paper really mean nothing to me specifically- I just forget that sometimes.
Eve, I'm assuming you haven't heard back on your AR yet- it might take a while, mine did. Best of luck to you too.
I hope you ladies are feeling well. I came down with a little cold this week and that along with the fatigue from the Xeloda is kicking my ass. I'm looking forward to feeling better soon!
Hi, Sam - Thanks for kind words. I get you about avoiding the boards; they can be stressful. I only participate in a handful of threads.
I see my oncologist on Friday and find out more about future treatment plans. I'll let you guys know.
Hope you are all having a good week.
Got my AR results. Slightly positive, 5-10%.
Was told to do Xeloda and contact MSK at 5th month. If there are spots available, I can receive the Enzalutamide.
Who knows, maybe I can get prescription from doc when the time comes.
Today, I have no fucks left to give:(
Hey, Eve. Good to know you FINALLY got your results back. I hope that there are still spots in the trial when you are done with Xeloda. I want the lobular cancer in you GONE!
I saw my oncologist today. No Xeloda or AR+ trial for me. Just radiation and I'm done.
On one hand I'm very happy not to face 18 months of possible side effects, but on the other hand I wish there was more I could actively do to make sure this damn TNBC never gains a foothold in my body again.
I'll still check in to this thread to see how you're doing. BEST OF LUCK with everything!
I'm glad you are pushing for more answers. I am new to this journey. My biopsy 1st said ER+ 90%. Then surgery. Then TNBC diagnosis. 1st diagnosis they say was incorrect. Today I go to the MO for 1st visit after surgery to find out their recommendations. I am from Eastern European Jewish heritage and should have my BRCA test done. Please keep us posted on how you are doing.
Congrats on being almost finished with treatment. I know we all look forward to that day! I just finished my 5th cycle of Xeloda and feel pretty good, but I am starting to develop some pain and tenderness on the bottom of my feet. I am looking at this as a good sign- apparently there have been some studies to show those who develop HFS tend to have a better response to Xeloda. Consider yourself lucky that you get to skip this part!
That seems totally crazy to me that you would go from being that positive to negative. I've never tested positive for ER, but my AR test results have been all over the place.. 73%, less than 1% then 10%. I assume I am somewhere in the average of all that. Best of luck to you today as you find out what the future holds. It will probably include chemo, which I found very manageale.
I hope you are doing well. Have you started radiation yet?
Hey Sammy- I'm hanging in. I had to stay away from this place for awhile. I'm burnt to a crisp. I'm going to get myself tested for the Xeloda enzyme this week. I'm dreading putting that shit in me.
I've been shopping and over spending...to distract myself.
I'm sorry you are experiencing any pain...
Stay strong for those kiddos, xox
Agatha - so happy for you but very fucking jealous
Hope- Sorry you've had to join us
HI Sam- I just found this and would love to pick your brain. I did not have a complete response, but was hoping to get details if you did the study. I am at the Cleveland Clinic and was told this study would likely be closed by the time I finished Xeloda. I was debating whether to do this or something like Carbo though. Let me know if you have heard anything further. I LOVE meeting other women who are as concerned for their health as me. I ended up being 90%+ AR on one slide and 50% on the other slide... agh.
I've been staying off the site for my sanity. Am having a bit of an issue, post radiation and my skin is kind of weeping and sticking to my clothes, so I have come to read up about it.
Just popped in to say hi.
Hope everybody is hanging tough
I'm so sorry your having some complications from radiation- I hope they clear up soon. I weathered radiation pretty well, but was starting to get really crispy just as it was over. I noticed I felt better within just a few weeks of being done. I hope the same is true for you.
I am doing very well- I start my 7th cycle of Xeloda on Saturday and feel pretty great overall. The HFS seems to only bother me when I get to the end of a cycle, and no peeling or anything so it's been pretty easy to manage, I haven't had to dose reduce or take anytime off which I am so relieved about.
I also had a PET scan yesterday- totally clear! This was a follow up to a scan I had back in September which showed 2 nodes- they weren't sure if the nodes were cancer or just reactive since I had just had surgery so it's a relief to know whatever they were- they are gone (and there is nothing else out there)! This scan was really my only hoop to jump through to get into the trial at MSKCC, so I will be booking my trip soon for my first appt July 3.
Since Agatha isn't doing the trial- it looks like I'll be the first. I'll keep everybody up to date as things start- at this point I just have to finish my Xeloda and then wait the 4 weeks. I'm so looking forward to the end of the Zoladex shots!
I was just told that the Enzalutamide trial at Memorial Sloan Kettering is closed now. My tumor stained 90% AR positive but they completed accrual. Are there any folks getting Enzalutamide or Zytiga (Abiraterone) from their medical oncologist off study in the adjuvant setting? I completed AC/Taxol and some Carbo and radiation. I know there are issues with cost of these drugs but use of an androgen antagonist seems important after reading a lot of the literature. The rarity of AR positive tumors, lack of testing at the time of diagnosis and lack of drug company profit may be limiting access here. I am really interested in other experiences with this.
DX: Stage IIa, 0.9 cm IDC/DCIS, 1/2 + Lymph nodes. 7/2017
I have not personally heard of MOs prescribing this drug off trial, other than for stage 4 women. When/where did you hear that the trial is closed? I am scheduled to travel to NYC from Michigan in early July to start- I would hope if it were closed they would call me and cancel my appointment (so I do not incur any travel expenses). My appointment is specificlly to start the trial and I scheduled it about 2 months ago. They never mentioned the trial being close to being closed.
Hi, Bubba. I'm sorry that you missed out on the trial. I can imagine it's disappointing.
When I saw my MO at MSK in March she told me that there were only 2 places left in the trial at that point.
Sam - Since you've already met with Dr. Traina and have a start date wouldn't that mean you are enrolled in the trial, or that your place is saved? I hope so.
They called me to tell me not to come on the upcoming Tuesday appointment. Maybe you are already enrolled? You should check tho. I found the long distance communication quite limited. Different people every time. Use of the portal may spur response. The literature for the last decade or two has discussed targeting the androgen receptor so there should be some alternatives even if the oncologists are not satisfied that the data is strong enough to recommend as standard of care. They throw around the terms "shared decision making" and "patient centered care" so much that we should demand that they actually do this.
I had seen Dr. Traina in January and signed request for my slides to be sent then. Never happened at their end but I asked the pathology department at the Washington Hospital Center (Wash DC) to send them myself. I was even given a copy of the protocol and consent form then and sent it in signed when I finished RT as I had been instructed but then was told I had to come up to sign in person with the investigator (Dr. Traina) . Will be seeing my medical oncologist soon for next steps.
Thanks Bubba and Agatha,
I am not in the trial- it is closed. I am a little pissed. I have spent quite a bit of money having my tumor tested multiple times to qualify for this trial. Never once did they warn me that it may be filled prior to July- my husband even asked about this when we saw Dr. Traina in October. Also, I had to call them to find out- which means I would have traveled all the way there in July to find out there was no trial. They said they will call me if anything opens up, but I'm not optimistic that will happen.
In the meantime, I called my regular MO to see if she would prescribe this medication to me off label. She was excited about me getting into this trial, so I am hoping she will be willing to help me. I will let you ladies know what I find out.
This crap is so unnecessarily stressful- all of the decisions I have made since October were in anticipation of me getting into this trial. I am so pissed. They should refund me the fees I paid to have my tumor tested multiple times for nothing. This is expensive and I don't have the time or money to waste on things that aren't a possibility for me anyway. This kind of stress can't be good for cancer patients, and they act like it's no big deal.
I am sure you are right to be angry, same here. I think they must have recruited and tested triple neg patients in the Memorial system. Would be interested in how many out of town folks got into the trial largely on their own initiative like we tried to. I am also upset with Pfizer which should have run the ENDEAR trial to get enzalutamide to market for breast ca but they spent the money elsewhere. Profit margins you know.
There are anti androgen drugs on the market but you have to go through a specialty pharmacy and hope to get approval. Xtandi (enzalutamide) has a help site and they can send you the forms to fill out and maybe take to your MO in case she is not used to doing this regularly. Let us know how it goes.
hello...yes i just found out i am 90%+ androgen.
I am being treated with taxol and pembro cycle 2.
Please share any info...kindly
Great that they tested you for it. I hope we will learn more about best treatment options if more patients have this test done. I have read a lot about this topic and happy to chat. Since breast cancer has so many subsets the more info the better.
Hi guys! I just popped in to say hi! Sam - that is some fucked up shit! I can not believe that they did that to you....so very inappropriate!! I am about half way thru Xeloda, I was told that they would allow me in the trial, if there were spots when I finished X - so I wasn't really counting on it but, I know that you were and that you had traveled to NY on several occasions. I hope that aside from this, you are doing okay. Agatha - I hope that your good fortune continues on I had to stay off of this site; I was too sad. I haven't thought about Cancer for the last 4 months and that has been very good for me. My X side effects are nothing, so far. I feel a little tummy issue on the first day of each cycle and I am a "little" tired.
My thoughts are with you all! Continue staying one step ahead of this beast
Hello guys! Popped in to say Hi! I see that no one has been on. I guess that is good. We are all busy living our normal lives, like before. It was actually guilt that brought me here today. Facebook suggested that I do a Birthday Fundraiser and I selected The elephant sanctuary in TN. I completely forgot about Breast cancer, how weird is that. I feel somewhat ashamed. I'm going to donate on my own...
Much love to you all
Stay one step ahead of the beast
Hi Eve! I do find myself coming here less and less. It helps with my anxiety, plus I have been busy! My husband and I decided to build our dream home, so we sold our current home and just moved out. Between that and other summer activities, we have been busy!
I am feeling mostly back to normal. I get muscle aches and pains I didn't get before, I think the treatment aged me a bit, but overall feel pretty great.
As you know I didn't get into the trial at MSKCC, it was already closed by the time I finished Xeloda, but I did find a doctor that prescribed me bicalutamide off label, so I feel like I am getting similar treatment to what I would have gotten on the trial- and I don't have to travel to NYC a couple times a year. I am also taking medication to deplete my copper levels, this is also prescribed by the same doctor. Google copper depletion and TNBC, there was an interesting study a few years ago and a lot of interest to do another one.
I'm so glad you are doing well. I am coming up to a year anniversary since my surgery, so I have been cancer free for a year. Seems like forever ago and just yesterday. I just need to get through the next 4 years, and then I will celebrate! 😊
Sammy, you sound great! Awesome news about your dream house! We got to do this 13 years ago and we have loved every minute in this house! It's funny though, we are building, too! My husband has converted an attached garage behind my master into a huge walk in closet for handbags and shoes! He's still working on it. The illness makes you organize your belongings, I guess. I'm a handbag lover, so I think it was his shrine to me. He's very protective over the space. I'm very touched by the gesture.
I'm going to do a trial when I finish X. Keytruda, if I'm selected to receive it. I have 2 more cycles. It was just like you said, very uneventful
I wish you the best. Let's check in from time to time. You are important to me.
I am taking Bicalutamide 50mg tablets.
Hey! I am also taking bicalutamide, I take 150 mg a day (50mg 3x per day). For those of you taking this or Enzalutamide- have you noticed any side effects? After being through so much I find it hard to distinguish between just normal aches and pains, side effects from this, or lingering side effects from chemo and radiation. Overall I feel pretty good, but I am gradually gaining weight and occasionally get pain in my head (not headaches, just pain that lasts a couple seconds or maybe a minute).
I can confirm this drug does not affect your period! I was in chemical menopause since December (I did Zoladex shots during Xeloda) and I was worried it may not come back, especially since I was on this- but it did! Since this isn't usually used in women my doctors don't really know what to expect as it relates to side effects, so that makes it a little harder..
Best of luck to everyone!
Eve- Have you started Keytruda yet?
has anyone tried copper depletion? Seems to help prevent recurance...? I have TNBC that is high AR+ (90%). Seems to have few SEs.
I am doing copper depletion in addition to the bicalutamide. I started it in June, but have been on a short break (my WBC and Ceruloplasim got way too low) and I needed to take a break from it anyway because I am having surgery next Monday. As long as things go ok with surgery I'm hoping to start it again late next week. I haven't had any side effects from it at all, other than the low blood counts. I plan on staying on it and the bicalutamide for 2-3 years to get me past the peak reoccurance time period- I would do the copper depletion for longer- but it's not covered by insurance and is a little pricey.
Did you have chemo before surgery? If so, how was your response? It seems like most I have met did not have a great (if any response) to neoadjuvent chemo if they were highly AR+. We truly are different than other TNBC!
I am in the middle of chemo now.
My response has been very good, so far. Prior to chemo 3 (Taxotere and Carboplatin x 6) the tumor and lymph node had already shrunk to zero. But of course I have an eye on what more I can do to follow up because I know that TNBC is a tough cancer. I think the "luminal AR" cancer is less responsive to chemo, and my AR status made me wonder if that might be me... But now I think mine is probably a basal-like cancer (based on the chemo response I'm getting) but also AR +. There seems to be much heterogeniety to TNBC.
Thanks for your response!
Clinical trial for AR+ TNBC
also, many TNBCs are positive for estrogen receptor Beta... Mayo is doing phase two study of estradiol for TNBC