Today, I flipped the virtual coin and I've been selected to go I to the Keytruda arm of the study. It involves a 30 minute infusion every three weeks for a year. I am a little scared; side effects are related to infection, inflammatory response. I am sad about returning to the chemo floor...and having to use this port again. But, I am glad to be doing something besides waiting and watching.
How is everyone else doing?
My doctor mentioned that trial and I strongly considered it but instead wanted to move forward with the Enzalutamide trial. We all know that didn't work out for me, but I an still taking bicalutamide off trial and am being copper depleted. I hope these along with the diet and exercise changes I made will keep this cancer at bay. I go for my second "routine" follow up next month.
Physically and emotionally I am in a better place as time goes on. I don't come to the site as often, and although I think about cancer every day it's not as consuming as it once was. My new house will be done in January, and this time of year is my absolute favorite- so I have had lots to keep me busy.
I hope you are doing well too!
I just thought I would post an update as when I first found out about being AR+ I had a lot of questions that no one could really answer because it isn't a standard test and standard treatment doesn't change if you are AR+.
I have been on bicalutamide for over 7 months now. I haven't really noticed any side effects, and my periods have returned to normal (my Dr wasn't sure about this because it's a hormonal treatment). I am taking 150 mg per day, which I believe is the max regular dosage- some of the trials that used it were only using 50 mg per day. Its unclear how long I will stay on this- I plan at least 2 years but if things remain uneventful as they have I could see extending it. Hopefully some of the data regarding the trial on earlier stage patients will be out by then to help guide my decision.
I hope all is well!
Sam thank you for updating us! I think it's so important to help people digest these possible followups for TNBC and hopefully figure out who will benefit from what. I am so glad you are tolerating it well!
Hope everyone is hanging in there I am doing okay, other than a little cold (don't know if its treatment related). I am about to get 4th Keytruda today.
From time to time, I do get overwhelmed with the enormity of cancer but, mostly I dont think about it (survival mechanism?).
So happy to hear your house is finishing up and you will be enjoying it to the fullest. I, too, found much enjoyment in some home renovations. Hubby built me a Real dream closet and it is too cool! We did so some organizing, decluttering, etc., which I think is part of the process when you get cancer? I've also become a little politically active. I guess I'm lucky I was oblivious to much of the Trump presidency...
May we all fight this beast with a vengeance!!
Sam and I were not able to get into the Memorial trial. Glad to hear about the house etc and doing some fun stuff now. I have been taking Enzalutamide 160mgm daily (Xtandi) for about 10 months and tolerating it well. I think I sleep more now, take it at night, and maybe more tired but I am 73 so hard to tell since I have been able to have some very active periods with my grandchildren, consulting work and now helping my husband with his medical issues. Hopefully there will be some data coming out this year on the trial for AR+ tumors (mine was 90-99%+) but if not will just try to keep taking the medication which is being covered by my insurances (Medicare/SilverScripts).
I was AR 90% positive so I am glad to get the update that you are tolerating the Xtandi! I am not there yet but I always have my eyes on the next bend in the road. Thanks for the update Bubba.
Hi Sam, I just found out about the subtypes of TNBC. I too am AR+. I a lumpectomy in July 2018 and then decided to try IPT which is low dose chemo, I did that in Nov 2018. Well now it turns out I might have another tumor near my surgery site. Going on Wed. to talk to the surgeon. I declined to do the standard chemo they recommend for TNBC. How are you doing and have you learned any more about the subtype AR+? The little bit I think I learned looking it up is that it doesn't respond as well to chemo. Any input you learned would be appreciated...Thank you!
Just a FYI -- my tumor was 90% AR + but it DID respond to chemo. I think AR+ can happen regardless of subtype? I had Taxotere & Carboplatin every 21 days x 6. Good luck and I hope yours responds too!!!
I haven't learned much more about being AR+ unfortunately. I have read similar to what santabarbarian mentioned that you can be AR+ regardless of subtype.. I think the type that is less likely to respond to chemo is the luminal AR+ type, AR+ basal cancer should still respond pretty well. Unfortunately they don't really test for this, because it doesn't change your treatment so you really dont know. I had genomic testing done on my tumor and it did have some basal markers but not all of them.. I also had a very low mutational burden which is more like a luminal cancer (TNBC tends to be higher, which is one of the reasons it responds to immunotherapy and the other types of breast cancers do not). Regardless, all my doctors agreed being AR+ was a good thing. MDAnderson did a study a few years ago on chemo resistant TNBC and one of the markers for not having a reoccurrence was AR.
I am a little over 2 years from diagnosis and I am doing very well. I have been taking bicalutamide since June of last year and have been taking a medication to copper deplete me since last July. I would have loved to avoid chemo, but I dont know that being AR+ alone would have convinced me not to do it. Truth is they just dont know, and the stakes are high.. One thing I do find confusing is when doctors tell TNBC patients getting chemo will only help them reduce their chance of reoccurance by a small percentage.. that just doesn't make sense to me if your response to chemo is so important... I think eventually they will be able to stratify TNBC like they do other breast cancers to say who will benefit most from chemo. I probably would have been better off just having that tumor removed earlier!
Sorry I couldn't be home helpful- it's a tough decision, and I hope you find out good news from your surgeon next week!
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I have to agree with Sam, I think I would have done better to have removed tumor earlier. My response to chemo was only so-so. Still, I would not have known and most likely would not have been able to avail myself of the extra treatments (Xeloda, Keytruda) they give for "residual" cancer.
Coulda, woulda, shoulda....I'm trying to avoid too much of that. I think it causes cancer.
Hope everyone is defeating the beast.
Hi Sam, I'm sorry I didn't see your response until I went looking today. I guess I didn't get notified by email? Any way, I did another lumpectomy and they did not get clear margins. I went to see Dr. Traina at Sloan Kettering. She did a study on AR+. Basically all she did was try and tell me I needed chemo. I told her I tried low dose chemo and it did nothing but make the spot that was in there grow by 50%. I have a dr. wiling to give me the Bicalutamide or Enzalutamide to try. You are doing well on it? What are you taking to deplete copper? I had my tumor from last year tested but now they told me to do genetic testing and that it's different than the tumor testing. Now I have to decide to try and get the rest out or maybe do a double mastectomy. Waiting on the results of the testing.
Genetic testing on the tumor itself is one type of testing (sometimes called next generation gene sequencing) and specialty labs do this. Insurance coverage varies. Genetic testing on your blood includes the BRAC genes and sometimes many others. I am not sure which they are recommending. I have now been on enzalutamide for a little over a year. As far as I can tell all medical oncologists recommend chemo (I took ACTP) and then because my tumor was 90+% AR positive I thought it reasonable to take enzalutamide for a couple of years and am doing ok with it so far. Feel free to contact me with other questions. I wish there was more information coming out of Memorial/Dr. Traina's clinic but proprietary information may be limited in the modern world. The abstract on enzalutamide in the adjuvant setting presented at ASCO 2019 was only about her tolerability study.
ccc4ever- I have to agree with Bubba2017 on this. Most of us recieved dose dense chemo, which is a regular dose but over a shorter period of time because it was shown to be more effective. I would not assume because you did not respond to low dose or metronomic chemo that you wouldn't respond to dose dense because they are pretty different strategies regarding chemo.
In regards to the bicalutamide or enzalutamide, studies show that those are probably going to be most effective if your tumor tests positive for androgen receptors. Tumors that are androgen receptor positive tend to be less responsive to chemo, but not always so it's not safe to assume if you had a poor response to chemo that you are definitely AR+, and it's also not safe to assume because you did have a good response to chemo that you are not AR+. Did they happen to test your tumor for AR? Like Bubba I am doing well on bicalutamide- I've been on it for over a year now with little side effects (that I notice anyway). The copper depletion has shown to be most effective if you are NED, so you would still need to address the remaining cancer left after your lumpectomy.
Hi Bubba2017 & Sam
According to my Caris testing on the tumor, it showed other cancer genes (PTEN) etc. It showed I was the LAR subtype. If I'm reading the genetic blood work correctly it shows no mutations detected, I had 34 total tested. I have a dr. appt on 8/5 with my regular dr. who is an MD and natural Dr. to go over the report and my options. He is willing to give me the androgen blocking drugs now that I got the dosage from Dr. Traina. Dr. Traina was the one that said to do the genetic blood testing first and not to just do a double mastectomy if it wasn't needed. I faxed the report to my surgeon (here in PA) thinks she can go in and try and clean up the margins. She never wanted to do a double mastectomy but when she read the caris report she thought that might be my best option...but now that she saw I don't have any of the genetic testing genes she thinks it's best to try and clean up the margins and then radiation. I have had 2 lumpectomies, one in July 2018 and then another one in May 2019. Very close to my original tumor site so at first they thought it might be scar tissue, I did the IPT low does chemo in November 2018 (I had to pay for that myself) Then I went for a PET scan (I had to pay for that myself too, my insurance only wanted to do another MRI) I wanted to check out the rest of my body since this is a cancer that spreads. According to the PET scan what they saw in October had grown by 50% until April. So being the LAR subtype I didn't want to do anymore chemo. I had my port removed during the last lumpectomy. I never let them check my lymph nodes, again my decision they wanted to so I think I will have those tested if I do surgery again. Pet scan was all clear except in the same surgery spot. Right or wrong on the chemo, I don't know, but I made the decision I don't want chemo, so hopefully I made the right decision if feels right for me. So in the study, were they only seeing if the drug was well tolerated for a year? Is there any other testing or following the girls in the study?
Thanks for your input and help
Hi Sam, I did one post to you and Bubba so hopefully you see it too Thanks for your repsonses!!
ccc4ever- If you are the LAR subtype I think its totally reasonable to request bicalutamide or enzalutamide afteryour surgery or radiation. It also helps to explain why maybe you didnt respond to chemo, although it's hard to say if that would have been different if you didnt recieve low dose chemo. I personally think I responded to AC, but did not respond to Taxol and my tumor grew back and in a slightly different place so we didn't feel it anymore. I am hoping the future of TNBC will focus more on the genomic profile of our tumors so those of us with tumors unlikely to respond will either have their surgery first to remove it or completely avoid chemo altogether like some of the ER/PR women are able to do. My cancer was not in my lymph nodes when I was initially diagnosed so I think we just left it in there too long.
As for the study Dr Traina was doing, it was 1 year and then they offered a 1 year extension phase for a total of 2 years. She explained this to me as the intent is to get people over that peak time they are most likely to recur. She did not feel comfortable with me staying on it for longer than 2 years as there have been no long term studies showing side effects in women. It looked to me like the manufacturer pulled the funding for the trial, but I dont think it was due to anything adverse, they just maybe thought their money was better spent elsewhere?
Have you spoken with your doctors at all about Xeloda? I found that very tolerable, and if my mind serves me correctly it was shown to be most effective in non- basal TNBC, which the LAR subtype is.
Trying to read through old posts, where you in the trial or no? It seems some of the older posts you were trying to get into it.
No one spoke to me about Xeloda… that's a chemo drug? I am on LDN and Metformin. I also take Modified Citrus Pectin and Tagamet, along with a host of other supplements. I am currently doing Joe Tippens protocol, have you heard about it? It's dog de-wormer, I feel better about taking that over chemo
It's all so overwhelming as you know, I'm glad you are a few years out from all this.
Thank you for getting back to me!!!
You might want to look into High dose IV C and other stem cell killers.... "How To Starve Cancer" has a lot of ideas....
I do not know if I was LAR or not.... but like you, I had none of the typical genetic mutations (one non significant one), and 90%+ for AR. I think basal like cancers can still be AR+ though, and may still have low a mutational burden.
I did chemo: carboplatin and taxotere x 6, along w hyperthermia, some infrared saunas, fasting mimicking, keto diet, metformin, melatonin, a bunch of supplements, and 2 weekly high dose C IVs. I had a pCR but it's hard to know from what... Then Lx and Rads. I am one year fro diagnosis now and 4 months post rads.
Hi santabarbarian : )
I think the only thing that my integrative oncologist told me that was helpful was I could take Liposomal Vit C so I take high doses of that. I did see some studies that it was almost as good as IV..I don't have IV available near me. I just got the book today called How to Starve Cancer by Jane McLelland. I just heard of her this week. I haven't had time to read much of it today but I'm looking forward to seeing what she says. I was eating really good and clean until I did the low dose chemo...I can't believe I only did 4 weeks of it and then a few months of oral chemo and it has killed my appetite. I eat like a 4 year old. I get so mad at myself. I am hoping I can get back to clean eating soon!! But I'm so stressed again with trying to decide what's next. I need to probably have more surgery to get clean margins, but that's scary how do they know what to take?
As far as I am aware IV dosages are exponentially higher and turn the C into a pro-oxidant (briefly) in your system at this high dose.
Sam and I were both unable to enter the trial due to rate of accrual. The enzalutamide poster at ASCO only commented on 50 patients but I think more were enrolled. I also had my tumor tested by Caris Life Sciences but the way you describe your results sounds a bit different. I would be happy to talk with you off line if you want to discuss that in more detail. Best wishes for healthy living without getting too overwhelmed. Even tho I have a lot of knowledge I really enjoyed being in a group (local cancer wellness study) for a few months to improve my eating and exercise. I even did yoga for 3 months and learned some cooking tips. The group was very open and supportive.
Hi, I started on the Bicalutamide about a week ago, I took it the other night with LDN and I woke up sick yesterday, I don't know if I had a reaction to taking those both together. I am supposed to take it 3 times a day but I haven't been yet. I don't take the LDN every night either so I'm not sure what made me sick
Just found out that I am 80% AR positive and will be starting on enzalutamide soon. Don't know what to expect in terms of side effects. The list of SEs by the drug maker is so long - I am sure these are general ones and not everyone gets all these side effects.
If there is anyone on these boards taking any anti-androgen tablets, please respond about your experiences. TNBC/AR+ seems so rare.
I was on bicalutamide (another drug used to treat prostate cancer) for a little over 2 years. I actually just stopped 2 months ago. I didn't really notice much in side effects, other than my periods were insanely heavy and my hair and skin which is normally a little oily was more normal ( I didn't have to wash my hair everyday!). Now that I'm off of it, I can tell my hormones are adjusting because my hair is super greasy and I'm noticing more PMS like symptoms like bloating around my period. I haven't noticed a difference with my periods yet, but I'm hoping that comes soon. If you have any questions please let me know- I only met 1 other person on this type of drug, so it was always hard to tell if what I was experiencing had anything to do with the medication or just lingering side effects from the other treatment I had.
Sam, thank you for your response. It is good to know you had minimal side effects. My periods stopped 10 years ago when I had dose dense chemotherapy (ACT). So hopefully that will not be a problem now.
Hi. I’m TNBC and 60% AR+. I was on lupron for a couple of months while doing chemo, just because at this point my onc will let me try just about anything. I wish I would have known I was AR+ back in 2016 after treatment when I was cancer free so I could have been on it. Why did you decide to stop taking this? They make ER+ girls take tamoxifen for 5 to 10 years
Most of the clinical trials on these anti-androgen drugs in women were only 2 years long. I spoke with Dr Traina about it (who is really an expert on AR+ TNBC and has led a few of the studies), and she thought since I'm passed the 3 year window for highest recurrence risk, and the unknown side effects of being on the drug for an extended period of time it was time to come off. It was a difficult decision, but I'm only 35 and had to weigh the pros and cons of the risk of cancer returning vs what this drug could do to me long term. I am also considering having another baby next year, and because there isn't a lot of data on it in women I need to be off it for quite a while before I could even think about that.
Very interesting. I was 90% AR+ but got pCR and am 2 years out with no issues. Good to know about it in case of future need.