Aug 5, 2009 05:20PM AnnNYC wrote:
(well, except for the uterine lining part -- hopefully that'll get figured out without too much trouble)
Please respect that this forum is for members with stage IV/metastatic breast cancer only. There is a separate forum for caregivers and friends: Caring for Someone with Stage 4 or Mets.
Posted on: Aug 5, 2009 05:19PM
Hi all. I just got the results of my CT scans after 3 months on Estradiol therapy. All nodules are either smaller or stable. I'm very excited about the results but, of course, there is a hitch. There is a mass in my uterine lining that was biopsied three months ago -- and benign. However, it has grown as a result of being on the Estradiol. My gyno wants me to go add progesterone to counteract the effects of the estrogen on my uterus but my onc doesn't. Annoying to say the least. Going to gyno on Friday and will report what he says. In the meantime, I'm still thrilled that this new (and old) tx is working. When it stops working, I will go back on Femara which will hopefully be rebooted and be effective again. I was initially on Femara which worked for me for three years. Love to have another three year run on it!!
Posts 1 - 30 (43 total)
Aug 5, 2009 05:20PM AnnNYC wrote:
(well, except for the uterine lining part -- hopefully that'll get figured out without too much trouble)
Aug 5, 2009 06:06PM Bonnielv wrote:
So happy for you. Aside from the uterine thing, this is very promising. Also, I didn't realize that we could go back to an AI. Femara worked for me for 9 months before stopping. I will discuss this future option with my onc at next appt. if this gemzar works.
Aug 5, 2009 06:08PM - edited Aug 5, 2009 06:09PM by Jellydonut
WooHoo! Great news about stable and smaller!
I am also on Estradial but I had a full hysterectomy years ago so those lower female issues are a non-issue. My Onc is shocked at how well I'm doing since I'm highly ER+.
Good for you. I'm sure your docs will come to the right conclusion about the uterine problem.
Aug 16, 2009 08:53AM DJ64 wrote:
Back when I had been on Tamoxifen all my ct scan came back with an enlarge uterus. I had more endometrial biopsies than I care to remember and ultrasounds. All were negative. I had a recurrence and went on Arimidex. Soon I began having bleeding episodes. No one could tell me why including my gyn doc of many years. Finally I was recommended to see a wonderful gynecologist. He wanted to do a D&C before doing a hysterectomy. Turns out the enlarge endometrium was due to polyps.
Hope your problem turns out to be as simple as mine.
Aug 16, 2009 09:56AM respin wrote:
Wow, that's fantastic news!
I'm interested in this 'rebooting' of hormonals....I just had progression, and lost Femara. My dr. won't repeat it (then again, I'm new to this, Femara was my first line...and apparently I have quite a few drug options.)
Did your doc give any kind of reasoning to try Femara again?
Aug 16, 2009 09:59AM Marybe wrote:
Robin, Congratulations! That is really wonderful news in spite of the uterine problem.
I responded to your original post about estradiol because I responded very favorably to AIs for almost 10 years with minimal SEs. I did not respond at all to the oral chemo that was next and even though the tumors did shrink slightly in my liver after 22 Abraxane/Avastin treatments, I still question if the SEs were worth it. I chose to quit the Abraxane and as of now he is giving me a break, but he says we have to do some form of chemo. When I asked him about the Estradiol he told me it is not a new treatment, that they had been doing it for years in Europe, but that since I am so estrogen responsive, he would be afraid to try it on me. I asked him if my cancer is still slow growing as it was in the beginning and he said yes, but now there is more of it and it is in more areas. I am not afraid to try it, but he is. I have not mentioned it to him since, but have been following your progress.
I have recently been exploring radiofrequency ablation and IMRT since I heard a speaker give it glowing reports and examples of cases she had great success in treating. I am going to ask about this on Wed when I go for my zometa and faslodex and am assuming he will tell me, it would not work for me for one reason or another. Not a bad attitude on my part, just going on past experience whenever I show him an article or tell him about a treatment someone else is having success with. And what do I know? The man had kept me going all these years at Stage lV so he obviously knows what he is doing, but I know that I do not want chemo even if it does work if it is going to have the SEs the Abraxane/Avastin combo left me with. According to my last scan, it said I had a hysterectomy which I called and questioned because I did not so they reviewed it and I was told my uterus has gone through atrophic changes and is so small it looked like I had a hysterectomy!! I got a laugh out of this, but am also now wondering about these guys who read the scans......surely things just don't dry up and totally disappear. They never said anything like that on my last scan. Oh well, I am going to ask about the rad treatment and again about Estradiol when I see him Wed.
Again, I am so happy it is working for you. Marybe
Aug 16, 2009 11:49AM LuAnnH wrote:
This is especially exciting for me to hear. I am hitting the end of the road on hormonal options here shortly after 3 years and would love to get more time out of this option. I am nervous about feeding my body estrogen after all these years of starving it but I will never find out if it works unless I try it. I am watching this tx and looking into vaccine trials. Thanks for sharing and I'm so glad to hear its working!
Aug 16, 2009 03:50PM getwell wrote:
WOW!!!! That is great news. I am so happy for you. I have decided to go with an alternative practioner, for many reasons, and will start treatment on Tuesday. Hope to see you soon.
Love and Hugz,
Aug 16, 2009 08:55PM Reneepals wrote:
I asked my Onc if I could try the Stride trial for the Stimuvax/ breast cancer vaccine trials. Apparently, I do not have the Muc1 expression. SHIT! I so wanted in on this trial. Well I am doing well on Femara, so I'll keep looking. But the Estradiol is definitly one I will try.
Aug 17, 2009 08:43PM - edited Aug 17, 2009 08:44PM by Marybe
Thanks to all of you who responded to my post and answered my PMs re this treatment. I am seeing my onco on Wed. and am taking the articles I printed about estradiol treatment as well as ones on IMRT and radiofrequency therapy. Hopefully he will feel that one of them will work for me so I have an option other than more chemo.
Aug 21, 2009 08:17AM RobinWendy wrote:
Here's an update on my uterine issues...
My gyno wanted me to go on progesterone to counteract the effects of the unopposed estrogen. My consulting onc in Boston said absolutely NOT. So, then gyno says I should have a hysterectomy. Spoke to Boston onc and he said... unnecessary and wanted me to get a second opinion from a gynocological onc at Dana-Farber. I had the second opinion appt yesterday and the guy came up with what I thought was a brilliant compromise. I can have something called a hystiotomy (sp) which removes that part of the fibroid that protrudes from the wall of the uterus. It will stop the bleeding and should give me the 6 to 9 months I need to finish the course of estrogen before going back on Femara before it starts to grow again and be a problem. It is done vaginally, only a day procedure with no cutting of the abdomen, which is a bitch to recovery from. I was so glad I schlepped to Boston yesterday to meet this guy. Now I just have to see if my gyno is willing to do the procedure. If not, I will find someone else. I'll keep you all posted.
Aug 21, 2009 10:33AM heatherpalmerton wrote:
Oh Robin, I am so happy for you. I have learned alot from you and your experiences. I have always been afraid to get 2nd opinions. I see it pays to do that. I hope your gyno will do the procedure for you. Heather
Aug 22, 2009 09:46PM LuAnnH wrote:
Robin, that sounds like an awesome compromise. Getting things done vaginally is always easier than cutting the abdomen. Unfortunately I had to have my hysterectomy done via the abdomen and my complications from surgery was a blood clot in the lung. Was a long and painful process. Anyway, I love to hear the good news that comes from the 2nd opinions. Keeping fingers crossed your gyn will do the procedure.
Sep 4, 2009 09:57AM RobinWendy wrote:
Well, after a month of considering all my doctors' opinions, I finally have a consensus and a plan of action. It turns out that my gyno simply does not do this procedure often enough to feel comfortable doing it. And he says he knows no one to refer me to (hmmm). So, I consulted with - of all things - an infertility surgeon who does this procedure all the time to help women with fibroids get pregnant. He was so kind and took so much time with me both on the phone and in person last week. We talked about every single option and weighed the pros and cons and I am doing the less invasive procedure. I did not identity it properly in my prior post.... it's called a hysteroscopic resection. The surgeon I am doing this with is in Boston, as I could not get a recommendation for anyone in NY although I am sure there are many talented surgeons out there. Fortunately, traveling to Boston is not too much of an ordeal and it is now scheduled for Friday, Sept. 18th. I will stay over in a hotel after the procedure and go home the next day.
The surgeon was quick to point out, however, that my gyno's recommendation was not "wrong", just coming from a different perspective. But I am sooooo happy I don't have to have abdominal surgery. That's all the news for now!
Sep 4, 2009 12:06PM AusAla wrote:
Happy dancing for you, Robin! Soooo glad you've got your plan in place and that there will be no cutting of the abs. I hope you know how much we appreciated how you share invaluable information with us.
I am on Tamox now and getting GOOD results. Typically I've gotten good runs with hormonal targeted therapies. Almost six years with bone mets and no chemo yet. I am pumped about Estradiol!!! I see it in my future!
Think of you so often and love ya,
Sep 9, 2009 07:16PM getwell wrote:
September 18th is my best friend's birthday and only wonderful things happen on that day! You are such a trooper. I admire your smarts and your spunk. You go girl!!!! I look forward to meeting you and Kelly for lunch soon.
Sep 10, 2009 06:20AM riverinerabbit wrote:
This sounds really positive. You sure have done your homework.
I've been on the Estrogen for 10 days with disastrous side effects. The nausea became so severe. Looking into an estrogen patch to try minimise that side.
Let us know when you go in so we can wish you again.
Oct 3, 2009 06:36PM Marybe wrote:
I have not gone on estradiol YET, but it may be an option for me down the road, I just returned from Houston TX where I spent a week and had a consultaion with an oncologist at MD Anderson who thinks I may have been taken off the aromasin prematurely since the only change he noted in reviewing my records was that my tumor markers had gone up and he said often there is a jump up and if you give a medication enough time it will go back down. My tumors did increase in both number and size before going on the chemo that I quit back in July because of bad SE's and he feels that since I did get new mets while on Faslodex it is the one that was not working. So his recommendation is to go back on the aromasin and if that fails he recommends megace or high dose estrogen (estradial) which my onco said he thought would be very risky for me to do since I was so estrogen +. So I am just thrilled to death that I don't have to do more chemo as of now and that this onco who specializes in hormonal treatments by the way, agrees that estradiol is often a very effective way of treating advanced breast cancer I am hoping my onco will go along with this and I am getting my RX for aromasin filled and plan on starting it again on MOn and will continue to get my monthly zometa. How are you doing Robin....did you get the surgery and is estrodial still working for you?
Oct 3, 2009 06:56PM RobinWendy wrote:
So glad to hear from you. Sounds like you got some good advice in Houston!! I am so happy for you that you get to have a chemo break!!! It seems you and I have a similar history... I consulted at MD Anderson, I've done well on AI's and chemo does not work for me, either!!!
I did have my surgery on 9/18 and it went off without a hitch. The surgery was at 7:30AM and I was back in my hotel room (had surgery in Boston, live in NY) by 11:30AM!!! I had a little cramping and now I feel great. So far, the surgery seems to have done its job... I have no bleeding, just a touch of staining.
I will have my next scan at the end of this month and we will see if I am still responding to the estradiol. One one hand, I hope it is still working but on the other, I want my uterus to go back to normal. I do have hyperplasia which is.... "pre pre-cancerous" but everyone believes it will go back to normal once I go off the estradiol.
Of course, I will be a bit of a freak as the scan gets closer and closer but I don't let anyone "see" that side of me. I keep it to myself. As soon as I know the results, you can bet that I will post on this thread.
I'm really glad we connected and that you get to be on easier treatment ten years out from your Stage IV diagnosis.
Take care and keep in touch.
Oct 6, 2009 04:12AM marie1963 wrote:
Marybe: Have you tried all the AI's? Arimedex,Aromasin, Femara
Robin: Same question also with you, Robin.
Thanks ladies. Just can't believe that the oncos in the hosp. I go believe that
if Femara doesn't work, most probably, the other AI's won't work,too.
Xeloda didn't work for me. I have mets in bone,liver and lungs in Sept 2008. I stop Xeloda due to high bilirubin.
Now, I have ascites. I ask my onco to try other AI's but their protocol include only Femara.
They gave me instead Megace just for the meantime.
Oct 6, 2009 05:41AM - edited Oct 6, 2009 05:43AM by Marybe
Marie, There is a link on here where I gave my entire history which I think was called rollcall and everyone told of their treatment history. I was first treated with tamoxifen since I did not have it as preventative....went on to Arimidex, aromasin and then faslodex. I then did oral chemo with avastin and from there went to 22 wks of abraxane with avastin before I quit due to SE's. My onco wanted to do more chemo and was of the opinion once you did the AIs you could not go back. The onco at MD Anderson does not feel this way so yesterday I went back on aromasin,,,,it has been about 5 yrs since I was on it. The onco at MDA did mention megace as what we will try if the aromasin fails and also high dose estrogen. There are so many different drugs and so many treatments and it seems each onco has his own opinion. The onco I saw at MDA specializes in hormonal treatments and I trust his opinion expecially since I responded so well to them before. You can always get another opinion, you know.
Oct 6, 2009 07:54AM RobinWendy wrote:
Was on femara for three years... it is the goal of my estrogen therapy to "reboot" the efficacy of the femara so I can perhaps get some more out of it. I did try two other AI's (faslodex and aromasin) but neither worked for me. I also went on Tamoxifen, as I never went on it after initial chemo and that did work for about nine months. Your onc may well be right but if down the line you are not in bad shape and want to try another AI, I hope your onc lets you do it.
Oct 19, 2009 11:02PM Marybe wrote:
Robin, How are you doing? My onco told me on Wed. that he does not agree with the onco at MD Anderson's recommendations, but we will try the aromasin for awhile and see what happens. I got the written report from MD Anderson and in it the onco says high dose estrogen therapy may be a treatment for me which I am sure my onco cringed at when he got his copy of the letter since he had a fit when I mentioned estradial. I have been back on the aromasin for two weeks now and the only thing I have noticed is that I have that feeling like I have arthritis and my rt shin aches really bad at times. I forgot that I had this before until it came back, BUT to be off chemo, it is worth an ache or two. I am limited as to what I can take for pain since I take coumadin daily, but I will take tylenol arthritis formula if I need it. Please keep reports coming on how you are doing.
Oct 20, 2009 07:36AM RobinWendy wrote:
I go to my onc next Tuesday and then he will write my prescription for my next scan. I'm not nervous yet... but in another week I'll be a wreck as usual. I'm feeling great... the surgery I had worked at stopping the bleeding which is such a relief. So glad I didn't do a hysterectomy. Of course, the longer I stay on the estradiol, the more chance I could end up needing one anyway. Everything has a "catch" in dealing with this insidious disease, but so far, so good.
I think your onc is being a little like an "ostrich with his head in the sand". Of course, in the end it is your decision. I'm not saying that the estradiol therapy will work for you... but if you should run out of no-chemo options, you might consider forcing the issue. If after 3 months or even 2 months on it, nothing good is happening, then off it you would go. But thats they way I've always been... if I thought after hearing about a tx that it sounded good to me, and I had the support of one of my doctor's - even one you only went to for a 2nd opinion, I would make it happen.
When I went to MD Anderson for a consult 6 years ago, they wanted me to do the most aggressive tx first... taxotere. But, after going to Sloan for a consult, they said why go right to chemo when you can try femara first. I hated Sloan, but I ended up taking their advice rather than MD Anderson's, and it worked out quite well for me. I had a local onc who was willing to do either, and he thought the easier road was better as well. We must be our own advocates.
I went to a seminar this past Saturday and the head of Sloan Kettering breast center said one thing that really resonated with me. He said to beware of doctor's who say... "this is what I can offer you". He thought that such a statement meant that that particular onc was really saying, "Here is what I feel comfortable doing" and not necessarily what was cutting edge or "out of the box". What the hell, we are Stage IV... how much harm could it really do.
OK, enough lecturing. You are an intelligent woman and you can make your own decisions. I respect that. I just cringe when I hear about a doctor who is unwilling to try new things. I sure will keep you posted on the results of my scans and good luck on the Aromisin.