Breast Cancer Community

Michelle,
That is very upsetting news, but you are in the right place with the right team who I'm sure will be right on top of the newest and very best drugs and treatment options.
I am emailing someone I have met on BCO who lives in Canada and si involved in a clinical trial about using metformin off script to possibly control the recurrence of bc. The thoughts being that it increases the insulin which decreases the sugar spikes and it is those spikes in insulin and sugar which contribute to the growth of cancer cells.
I don't know if there is a similar clinical trial in the US - but this is a 5 year clinical trial that has just begun.
I can put you in touch with her if you are interested in finding out more on this subject. Just let me know - my email address is in my bio.am bringing the speedos for the cabanna boys - just in case they forget!!!!!!!
Thinking of you with much love,
Judy
I will be on pinkie and

Judy - thanks so much. I've been taking metformin through all this and it doesn't seem to be helping me. There are also hundreds of clinical trials here in the US, including at Dana Farber, using metformin. But if you're already on metformin and diagnosed as diabetic, you don't qualify for a metformin trial. So now I'm going to get off of it - I've taken it for many years.

There's actually another clinical trial using carboplatin and generic Actos. Now there is some controversy about Actos causing congestive heart failure in a few people. But I'm pretty healthy and have no heart issues. So it's less likely to cause trouble for me. The good thing with carboplatin is that it will require a port - there's no way I can do an IV chemo without it. My veins suck, even for a simple blood draw. So that would be another surgery, but the upside is that the "platin" drugs have worked well with triple negative cancers and the Actos would take care of any blood sugar issues. And there is another clinical trial using a drug that is supposed to slow down the mitotic rate of the cancer, thus reducing its opportunity to spread. Since my ki67 score was 90 (yikes!) anything that would reduce it could be a big benefit for me. My radiation oncologist, the chair of RO at Dana Farber, said he'd never had a patient with a ki67 that high.

There are others, and there are plenty of chemos that I've not yet experienced, so I see it as lots of opportunity to find the right combination that buys some significant time.

As we both know - you are with an excellent group of doctors in a superior medical facility.
You and your doctors are very knowledgable and I'm sure will come up wityh the best treatment plan for you.
This lady in Canada is TN - I don't know if that was your original diagnosis. I do know that sugar is problematic for estrogen positive bc - which I have and that is why I am on a white and sugar free diet. Don't know if it makes that great a difference - but it can't hurt to try.
Again - you are in my prayers and I know you will have some answers on Wednesday after your oncologist visit.
Much love,
Judy

So sorry to hear the latest report, but cannot tell you how in awe I am of your attitude! Too many of us when presented with options seem only able to focus on the "bad stuff" and fail to appreciate all that is available to us!

Seems, as Judy said, that between your research and your great medical team, there are many positives!

Of course, we will all be aboard Pinkie on Wednesday...As far as " nuts for munchies"...Well, I can definitely promise "munchies for nuts!!!"

Please know you are in my heart, and I'm sending tons of good thoughts your direction!

Blessings.
Rachael

Judy - yes, TN I am. And I've been mostly white and sugar-free for ten years. If that made a difference for me, I should have had clear sailing by now.

They just don't know what they don't know. And that's the big problem. Research...research...research!

Michelle,
You are correct about what they don't know.
In my opinion bc is caused by the interaction of many things, lifestyle, genetics, pollution, what we put into our body like food, drugs, alcohol and our immediate environment - then something triggers the growth of the cancer cells.
I would recommend you read the book Bathsheba's Breast by James Olsen. He is a professor (not a doctor) who writes about the history of breast cancer from 490BC to the present. It is a fascinating book that I have given as gifts to my friends, family and doctors. You can get it from the library or purchase it on Amazon.com.
It has never ceased to amaze me how our sisters endured so much for so long, mastectomy without anesthesia, chemo poured directly on the open surgical wound and the famous (infamous) Halsted radical mastectomy which was the gold standard until the 1950's and involved removal of the breast, the pectoral muscles major and minor, and sometimes the shoulder. His philosophy was the more removed the better the chance for survival! Sometimes ins. co. would not reimburse treatment for lumpectomies, only the Halsted mastectomy!
I truly admire all the women who have so bravely come before me and paved the way for the treatment options available to us today. When you read this book you cannot help but be in awe of these unsung heoes. I admire their strength and courage .
Women are really great and we have many women on this website that are to be admired also for their strength and courage.
And Michelle you are truly one of those women!
Much love,
Judy

Loud Applause Echoing Your Statements!!

Judy, may I suggest that you place the name of that book into our "Tips"...Seems like it could provide much for our members!
Thanks in advance!

Blessings,
Rachael

The origin of the name of this book is very interesting.
In 1967 a surgeon looked at the Rembrandt painting of Bathsheba in Her Bath and noticed a problem with her left breast. The surgeon learned that the model who was Rembrandt's mistress died after a long illness and felt the cause of her death was breast cancer.
I will put the information in the tips section as you suggested Rachael.
Judy

Judy - that's so kind of you!

Interesting that you would bring up the Halsted mastectomy. I am reading a book called "How We Do Harm: A Doctor Breaks Ranks About Being Sick in America". One of the authors is or was the Chief Medical Officer for the American Cancer Society, a practicing oncologist and is a consultant for CNN among other talents. I'm about halfway through and that Halsted mastectomy was discussed along with many other treatments that were thought to be the "gold standard" until they were proven not to be. I'll download your suggestion to my Kindle.

I participated in one clinical trial for a non-steroidal anti-inflammatory drug many years ago, around the time of the Vioxx debacle. That drug never made it to market here in the US as a result, although I thought it worked beautifully. I'm hoping that by participating in one or two clinical trials, I improve not just my chances but the chances of all those bound to come along behind me. You never know which one turns out to be the magic potion.

Hugs,
Michelle

Judy, Rachael and Michelle,
It sounds like an interesting book. I might tale a look at it.
I wonder if things that will work are kept from us. Too
much money to be made. I hope they can live with
themselves if they are doing this.
Hugs,
Cindy

Oh Michelle, I am so sad to hear this distressing news. Judy and the others are right tho, you are in the best location for the best Dr's. Thank goodness, you have a team that will come up with some good solutions for you.

Your great attitude is amazing. You are my "Hero" of the year for your great blogging and trying to help us all with your info.

Sending all good thoughts and many prayers your way.

Now go kick bc's butt.

Fondly
Jan

Michelle, I too am distressed that you've had any less than great news, ever. I don't need to repeat that you've obviously got a terrific team working with you, but am so glad that you do.
You know, this has come upon me so fast that I know next to nothing about bc treatments, options, etc. I will, however, be learning in the months and years to come.
What I do know is that you've been such an inspiration to me in my own new diagnosis and surgery, and such a comfort in letting me know that it's ok to have bad, and very bad days sometimes. Your willingness to share information and to dispense cheerful encouragement has been absolutely essential to me in keeping my chin up.
I too will be sending you positive thoughts, prayers, and hugs for Wednesday.

Janie

Thanks, Janie! I do feel lucky to have a great treatment team, and I know that lots of thought is going into the next steps.

You might want to check out my blog and look at the posts from June, July and August of last year. I documented (with pictures) my chemo treatments. It will be helpful to you, I think, especially the first treatment day posting. Fear of the unknown is the worst, and you'll be able to see in some detail how my treatment went. I promise you that just like the surgery, the anticipation will be worse than the real deal.

Hugs,
Michelle

Michelle,
I am sorry to hear your news but so happy that you have such agreat team of doctors and that you all work together to figure out what is going to work best for you. I love that they include you in deciding that and not make all of the choices for you. But I have come to know you wouldn't let that happen that is one of the things I have come to love about you your spunk and energy to fight this all the way anyway you need to. Keep up that great fight my friend I am here for you and with you all the way I will be on Pinkie any time you need her and with lots of snacks and drinks to go around for everyone. I will makes one just for you also !!
You are in great hands Doctors, your friends here, and I am sending a lot of angel hugs and angels to watch over you My prayers are with you always Roberta,