I went to Boston on Thursday to meet with my consulting onc and I'm so glad I did. Everyone who knows me knows that I consider this man my life line and when I got the bad news last week, I was thinking a trip to see him was unnecessary as we already knew that after the Estradiol, it was back on Femara, and now we'll see if the estrogen indeed rebooted the efficacy of the AI.
My DH said he though we should go because I always feel better after meeting with him.... and he was 100% right. I was so afraid he would push chemo on me if Femara fails and I have never benefited from the three chemos I have tried. I was prepared to hear that my options were whittling down and was really frightened.
Well, thankfully, my onc was in agreement that chemo makes no sense yet as I am still completely asymptomatic... what a relief. Rather, he talked about a bunch of new trials that will be opening up soon that he thinks would be really good for me... and they have minimal side effects.
What I wanted to tell you guys is that although the focus of the PARP INHIBITORS is for BRCA positive, triple negative BC, they are testing drugs that make estrogen positive cancers sensitive to the PARP and they have already tested this on animals with fairly good results.
He agreed that most of the participants will be BRCA positive, triple negative but he is hopeful that this new treatment can help many more women than initially thought. That made me feel good. He also talked about another new drug but when he tried to explain how it works, by DH's and heads started spinning!!! He saw our dazed expressions and started to laugh, saying that the complexity of this stuff is what makes him believe there must be a G-d. Neither DH nor I can even remember how to pronounce the drug (and we consider ourselves fairly intelligent people) but neither of us can remember it so I cannot tell you guys what it is.
The reason I am posting this is to say that although the cure is not around the corner according to my onc, there is a lot going on and hopefully we will all be around to take advantage of new treatments when they finish the human trials.
My husband has not always been uber supportive (he is afraid and his way to deal is to stick his head in the sand) but his advice to me to sit in a car for over 7 hours in one day to hear this man speak was truly inspired.
On a personal note, when I met with him for the first time almost 3 years ago, he said that my cancer was very unaggressive and that he expected me to be around a long time and said he was talking being around for grandchildren (daughter only 23 now and I am not ready to be a gramma yet) and he says that despite everything that has transpired in the last 3 years, he stands by his initial statement. Damn I hope he is right. Even my DH has fallen in love with this guy. He has helped me tremendously in recovering from my bad scan results and restoring my equilibrium!
Now we will wait 2 months, and then scan again to see if the Femara is doing it's magic on me.
Robin
| Posts 1 - 15 (15 total) | |
|---|---|
|
Reneepals Joined: May 2006 Posts: 1,155 |
Nov 7, 2009 10:47 am
Reneepals wrote:
Robin, Please, Please get the name of that drug if you get a chance. By the way, How are you feeling on the Femara? Are you getting the Femara side effects, i.e. joint aches, dizziness, Etc..... It gave me pain, but that has subsided, although some days are tough. I also got hypertension and the fatso phenomenon. I am so happy to hear that your lifeline helped you out mentally & emotionally! I know that there is no cure yet. But I really feel that they are coming up with great new ways to treat this damn disease. It is just a matter of how long will it take to get it approved!!!!! Our Heather had told me about a breast and lung cancer vaccine called Stimuvax, that is another exciting treatment that we will be able to put in our arsenal. (Not me though, I do not have the MUC1 gene expression.) But it will lead to new therapies. I really am doing fanatastic on Femara but I am trying to get all the info I can on fighting the hormone positive beast. Hugs Renee
|
|
RobinWendy Joined: Mar 2007 Posts: 1,283 |
Nov 7, 2009 10:52 am
RobinWendy wrote:
Well, I'm not going to speak to him again until January and am unwilling to use my email privileges to ask him about the name... but I promise the next time I speak with him I will ask him to email me the name. As to the Femara, I was one of the lucky ones who had absolutely NO side effects from it while I was on it for the first 3 years of my mets dx. So far, after being on it again for one week, I have not noticed anything in terms of SE's. And I know for sure that no SE's does not equal "no benefit" so I am not concerned but happy that I'm feeling fine so far. Gosh, I never even heard of the MUC 1 gene expression!! dx Stage II primary BC in Jan. 2001;dx with DCIS on other breast in Jan. 2003; dx with mets to lungs in Jan. 2004 (What's up with me and January, anyway?)
|
|
ElaineD Joined: Feb 2008 Posts: 979 |
Nov 7, 2009 10:54 am, edited Nov 7, 2009 10:58 AM
by ElaineD
ElaineD wrote:
What a tremendous boost this must have been for you. I'm doing well on PARP (cycle 8 starts on Monday)-it's keeping me stable, which is more than xeloda did for me. The research team here are hopeful that it will be useful for many other cancer types (I'm BRCA2),-but here they are opting to offer it next to prostate cancer sufferers. I find the new developments very exciting, and like you, hope that I'll last long enough to take advantage of them. Am so very glad that your meeting went well and that you have been reassured-that really is worth it's weight in gold. Diagnosis: 11/4/2007, 5cm, Stage IV, Grade 3, ER+/PR-, HER2+ |
|
Reneepals Joined: May 2006 Posts: 1,155 |
Nov 7, 2009 10:54 am
Reneepals wrote:
Oh... ok ...... whenever you can. I didn't know about the Muc1 expression either. That shows you just how individual breast cancer is for every patient. Renee
|
|
pitanga Joined: Sep 2004 Posts: 564 |
Nov 7, 2009 11:13 am
pitanga wrote:
Great news, Robin! it's wonderful that you have access to a doc who thinks about things so carefully and keeps his ear to the ground. Here's to good things happening for you on more AI's! First dx 1999, age 39, Stage IIA. 2009--Local recurrence and mets.
Diagnosis: 2/5/2009, IDC, <1cm, Stage IV, Grade 2, mets, ER+/PR-, HER2- |
|
Krystyna Joined: May 2009 Posts: 37 |
Nov 7, 2009 11:51 am
Krystyna wrote:
Hello Robin, I am just new with bone and liver metastasis and also completely asymptomatic(except the back pain after my recent spine radiation treatment). My oncologist does not want me to start with chemo hoping that Aromasin combined with Everolimus(RAD001) or just Aromasin(depends what I get in the randomized clinical studies) will do the job?? From what I read most of you start with an aggressive chemo and switch into AI later on.. I understand that chemo did not work for you. I hope that I do not sound to ignorant, but it is all new to me. Krystyna Diagnosis:12/18/2006, IDC, 2,5 cm multifocal, grade 3, 3/21 nodes ER+, PR+, HER2-, October 2009 liver and bone mets. |
|
Runnr Joined: Aug 2006 Posts: 48 |
Nov 7, 2009 12:09 pm
Runnr wrote:
Robin, It was so uplifiting to hear the news from your consulting onc. Like you, I am trying to stick with treatments that don't involve chemo or are least toxic chemos. I'm currently on low dose Xeloda and want to go off of it in the near future. Low dose estradiol is probably next for me and my local onc is willing to try it, when the timing is right. I have an appt in a week at Sloan to discuss additional future treatments. At this point I have mets to bones for over 3 years and am asymptomatic and doing well. I will be asking the onc at Sloan about several treatments that are in trial. I'm wondering if your consulting onc metioned any of them: Eribulin, low side effects, good results Saracatinib (AZD0530), shows promise, given orally, few side effects Nexavar and Arimidex, (ASCO published in 2008) Iressa and Arimidex, (MD Anderson) If I learn anything I will post the info. I'm so glad you made the trip and are feeling better! Claudia |
|
claygirl Joined: Dec 2008 Posts: 14 |
Nov 7, 2009 02:45 pm
claygirl wrote:
To all of you who provide this much appreciated info...thanks. My latest scans showed extensive increase in tumor activity in my bones, as well as, new sites in the bones. (the pain was steadily increasing so I guess I wasn't surprised) My onc switched me from femara to aromasin. I will still be receiving zometa. I don't think they know if the femara worked at all. For the first time since diagnosis in july 2008, I find myself losing hope. When I read these posts about new treatments, it helps. Thank you, Jackie Diagnosis: 7/13/2008, ILC, Stage IV, ER+/PR+, HER2- |
|
chk8 Joined: Oct 2007 Posts: 19 |
Nov 7, 2009 03:15 pm
chk8 wrote:
Thanks for the info Robin. My early breast cancer history is very similar to yours with IDC on one side and later DCIS on the other side. My journey to the world of mets began in 2004 in my bones and spread to my liver in 2007. I, too, have been told that my particular cancer is persistent but not agressive. Aromasin is the only AI I have not tried and my onc is trying to get me stabilized on chemo before trying that. It's good to know that new things are in the works. |
|
Fitztwins Joined: Dec 2004 Posts: 7,730 |
Nov 8, 2009 11:35 am
Fitztwins wrote:
I love doctors like yours!!!! Did you want to hug him or what? When my oncologist is excited about a treatment, it gives me hope. Fingers crossed that Femara will be the champion it once was. Thanks for the update. Janis Wash away my troubles, wash away my pain, with the rain of shambala
Diagnosis: 12/12/2004, IDC, Stage IV, Grade 2, mets, ER+/PR+, HER2+ |
|
LuAnnH Joined: Aug 2006 Posts: 8,741 |
Nov 8, 2009 02:25 pm
LuAnnH wrote:
RobinWendy, are you going to DanaFarber? I am assuming you are. I was there last year for a advanced breast cancer conference and they have some amazing stuff going on for HER2 pos and PARP Inhibitors. I know that is somewhere I will be going when the day comes I'm not happy with the decisions being made locally. LuAnn -- www.luannsblog.typepad.com
Diagnosis: 7/2/2006, IDC, 2cm, Stage IV, mets, ER+/PR+, HER2+ |
|
RobinWendy Joined: Mar 2007 Posts: 1,283 |
Nov 9, 2009 09:30 am
RobinWendy wrote:
Janis, He always give me a great big hug after I consult with him. I even thought for a second he was going to hug my husband!!! LuAnn, Yes, I go to Dana-Farber. I was supposed to be your roomie at that conference when I had to cancel at the last moment due to a scheduling conflict. I think that facility is really top-notch and that they are cutting edge. That's why I schlep to Boston whenever I need to change treatments. Luckily, my local treating onc does not let his ego get in the way of my best interests and is totally willing to work with my specialist. dx Stage II primary BC in Jan. 2001;dx with DCIS on other breast in Jan. 2003; dx with mets to lungs in Jan. 2004 (What's up with me and January, anyway?)
|
|
LisaSDCA Joined: Jan 2007 Posts: 2,246 |
Nov 10, 2009 02:02 am
LisaSDCA wrote:
Robin, I like your doctor. It's marvelous that you have this expert on your side. Onward to Femara success!!! Lisa Stage IV mets to brain 11/2008 Mets are Her2 pos (!)
Diagnosis: 1/24/2007, IDC, 2cm, Stage IIa, Grade 3, 0/3 nodes, ER-/PR-, HER2- |
|
nmiller Joined: Oct 2009 Posts: 10 |
Nov 10, 2009 11:40 am
nmiller wrote:
Robin, I live in NC but started going to Dana Farber early this year after being treated for the last 2 years in Charlotte. I am now on a trial at UNC (TDM1 and Pertuzamab), but still keep in touch with my doctors at Dana Farber. I am so glad you had such a great experience there ... I also LOVE them. I see Dr. Winer and Dr. Freedman who were both amazing... so supportive and so positive. Are you seeing Dr. Winer? Your description reminds me so much of him. Whenever we see him, he spends so much time explaining possible new treatments, talking about my disease and treatment specifically and then even taking time to ask me about my life and give me restaurant recommendations! I only wish that I lived closer to Boston and could have all my treatments there (and I actually would have continued to make the treck up there for treatments if they had had a spot open for me in their TDM1 trial, but the only open spot was at UNC and I am certainly thankful to be on the drug!). Diagnosis: 6/26/2007, 6cm+, Stage IV, 0/27 nodes, mets, ER-/PR-, HER2+ |
|
Fidelia Joined: Sep 2009 Posts: 47 |
Nov 10, 2009 10:57 pm
Fidelia wrote:
Hi RobinWendy, thank you for your inspiring post and for answering my PM in such detail. Claudia thanks for your detailed information - I have copied it so I can quote some of these things to my onc next week. Reading your experiences about Drs at Sloan and DanaFaber makes me think I am visiting a witch doctor - no disrespect to my onc - she does try - but seriously - she has never mentioned ANY of the stuff you have experienced or researched - sometimes it is hard to keep hoping when access to help is sometimes so complicated! Fidela |
© 2009 Breastcancer.org. All rights reserved.