Joan Lunden

Have any of you ladies checked out the Joan Lunden thread on the TNBC Foundation website?  Everyone is so perplexed, as am I, as to why she is foregoing the rest of the chemo, and perhaps radiation as well??  There is also a lot of discussion there about how little anyone knows about TN.  It would be wonderful if Joan and Robin Roberts who also has TN could talk more about it.  I myself did not know anything about TN when I was diagnosed, and I thought I knew a lot about bc.  No one I've talked to since DX knows anything about it either.  The more awareness of TN the better!

I wish Joan and all TN sisters the very best treatment and advice they can possibly get.  Hopefully she is getting good advice, but the reports that are out there leave a lot of questions.

Paula

Hi sisters. Aurora from the Stage IV threads here. Just wanted to pass along that The Today show contacted another Stage IV patient from another online mbc group and requested her to appear on the show. After she sent her picture they turned her down because they just want "bold and bald" women to parade in the window outside the show. Several of us Stage IV sisters are outraged that they limit their support to only women who fit this outer appearance show of disease. We are writing the show ti request that all types of breast cancer patients be included in their campaign. The show is to air Oct. 1st. The e-mail address for the show is: todaypinkpower@gmail.com.

From your comments above I gather you are also not very satisfied with what the media is putting out there for TN breast cancer patients. Perhaps if we all write to the show they will include segments on ALL  types of breast cancer patients and not just "bold and bald".

Thanks for your support

Aurora

I hate that they seem to focus on bald and beautiful. Good God that is not what chemo is about. This isn't a party club for heaven sakes.

This is a deadly disease that we are getting better treatments for but we need a cure people are dying.

Early detection is good but not the answer.

There is a clinical trial for TN that includes a study medication given neoadjuvently with Taxol, then surgery is done to look at the effect of the study drug, then a continuation of chemo (most likely the AC portion) after the surgery.  This trial is ongoing and is offered at MSK, so it is possible she is participating in it, and they have decided she had enough benefit not to continue with the AC portion.  I have a friend who was diagnosed with TN at the end of 2013 and was offered this trial at Moffitt here in Tampa.

Placid, Maybe it was carbo & Taxol - I didn't hear that it was "experimental."  Yes, 95% is great, but even one % of TN still there can do its damage if left unchecked.  At least that's my understanding.

Placid,  I taped the Today show on Thursday and Joan Lunden was again interviewed by Matt Lauer for an update.  She said the pathology showed a larger and smaller tumors.  After (presumably) Taxol, there was no evidence of the smaller tumor, but the larger one was either 60% gone or 60% still there (unclear).  So much for her initial statement, which I assume was pre-pathology report, that her cancer was "95% gone."  Thankfully, she is getting good advice and said there was no question that she will go ahead with more chemo - assume that would be the AC. 

She was on Dr Oz today and said she did chemo, had lumpectomy and is now doing chemo again for a few months. She said she has peach fuzz on her head but her doctor said she would lose it again. So I don't know if she did Taxol first and now doing A/C or not. She said she was very tired and even had to have a blood transfusion..

Red devil is a very common nickname for Adriamycin. You'll se it used often on this site

Checota….my first tumor was ER+, then my second tumor was weakly ER+…however the oncotype called the second tumor TN. I am on arimidex, and because I had to go off arimidex for chemo, the MO made me start over with the 5 year. In other words, I lost credit for my first year.

Joan Lunden has organized a medical team with which she is satisfied. I read one of her blogs about the time she was anemic and needed a blood transfusion for her low hemoglobin. Then in the article she admits that she did not know what hemoglobin was and went on to copy/paste an excerpt explaining the role of hemoglobin. I have a medical background, but REALLY? are there women out there who have had children and do not know what hemoglobin is? At that point I surmised that if she did not not about hemoglobin, she did not have a full understanding of TNBC. I suppose this is an example of a question my biology students used to whine "Why do I need to learn this?" My answer was that one day you will face a situation where you need to make a decision based on scientific evidence and doctors do not have time to teach you the basics. It will be up to you to have had the basic ground work understood so that you can make informed decisions.

My understanding is that oncotype is only done on those tumors that are ER+ to determine if chemo would be beneficial. In my case, the first tumor was strongly ER+ and the oncotype was borderline. My MO told me "arimidex will be your best friend". Then the second tumor was weakly (30%) ER+ so the oncotype was ordered. That is when it flipped to being TN and a whopping 42 score. I obviously had to undergo chemo as do all TNBCs because there are no known markers on the TN cell for which drugs have been developed to attack.

You are so welcome Checota. Looks like your MO has guided you through the best treatment IMHO. I feel the odds are in your favor that you will be fine. I am certainly not going to dwell on the what ifs of BC. I am such a dog lover! Nothing makes me happier than kisses from my pups. (Sorry DH…he is really awesome and supportive). Have a wonderful weekend, all.