Calling all TNs

Kathrynn, thanks so much for the message for Michelle. I'm sure it will be appreciated by her family.

Just in case you haven't read this:

Posted on September 5, 2013 at 6:04 AM

Updated Thursday, Sep 5 at 6:11 AM

PORTLAND-- Women with the most aggressive form of breast cancer are getting some new hope from research done right here in Portland.

Women with triple negative breast cancer don't usually respond to the most traditional therapies. The prognosis is also another five to eight years to live, but this new research is aiming at extending that.

Scientists at Oregon Health & Science University have discovered a drug, PLX 3397, that helps boost immune cells. It then helps a new form of chemotherapy, Arubalin, do its job. The hope? Eventually cancers like triple negative will become a lifelong chronic disease and not a life ender.

"Really anyone has been affected by cancer, either with a loved one or themselves, so the faster we get this done, the more people we're helping," said post-doctoral fellow Brian Ruffell.

It's with that urgency OHSU researchers are doing clinical trials for these women. Thanks to a $7 million grant from Susan G. Komen breast cancer foundation, they’re doing these trials in real time. Meaning, as they test this immune boosting drug and they notice side effects or something isn't working, they can come back to the labs at OHSU, tweak the program and hopefully extend the lives of the patients.

Usually, researchers have to wait until the trial is over before they make any changes.

The clinical trials number in 503-494-1080 or you can email them attrials@ohsu.edu.

Hi everyone,

I wanted to let everyone know that as gravely ill as Michelle is, she looked comfortable and BEAUTIFUL!

She couldn't speak but I know she could hear me because of a specific response. Her eyes fluttered open several times, but when I whispered to her one of our famous mantra's on here........FUCK TRIPLE NEGATIVE CANCER! ......her beautiful eyes popped wide open! Her fighter spirit is still strong. I told her how grateful this group is for all she shared with us.

The Hospice she is in is lovely. It is the first time I got to meet her family and I can't describe how loving, caring and strong they all are. (Michelle must be so proud of them). They are the embodiment of what the word "family" means.

Now while I'm on the topic of Fuck TNBC.........I just read the back posts and found out about Naan!!!! I'm still shocked...I can't believe she was stolen so quickly by this horrible disease. Sending love and peace to her spirit and her family.

I am so sad.  Even tho I knew this was coming, I am so, so sad.

Glad that you got to see her, Kathy.  And thank you for sharing your experience with our luvrving.

I HATE CANCER.

NavyMom..... It wasn't my experience...it was "our" experience. I took you all there with me and Luv knew that. :-)

I am so sorry to hear of Michelle's passing . My sympathies and thoughts are with her family and friends.

Michelle's passing breaks my heart. She was so helpful to me when I had questions. Her passing hurts. Love and comfort to her family. Jan

RIP Michelle. I will never forget your strength and positive attitude. You gave us all encouragement and were a never ending source of information. You will be missed, terribly.

Michelle and I briefly shared the same oncologist when she still lived in Missouri. He and I got along well, but Michelle thought he was an arrogant a**hole! I am sure she is happy to know he is retired now! Just wanted to share a little Michelle story.

My most sincere condolences to Michelle's family. She made it quite clear to all of us how wonderful her family is and how much you all loved each other.

Bless Michele's soul. I know she must be with LJ, Suzie, blondelawyer and Inmate and looking over us all. She lives on in all of us that got her wisdom passed onto us. May she fly free from pain now.

Jianci - If you read Luv's diagnoses, the one thing that Luv did different than the rest of us (that I remember) is that she did not have chemo done when she first was diagnosed. I always worried for her since I had always understood that it is the one thing that TNBC responds to well, better than other types of BC. We'll never know of course.

RIP Michelle. I know god will welcome her with open arms. May she finally be free of all pain My condolences to her family and loved ones. She was a great lady.

I need some advise. I know some of you ladies have said that your onc wants to know everything that occurs and others that they're giving you the brush off. I think that my onc is giving me the pass the torch to my primary. And he also said that i should stick with my BS that there couldn't be two generals directing the war. But at the same time he wants to know anything that may happen new like surgery etc. I'm confused because I was part of a study and when I joined it they told me they would need to monitor me through chemo and for the next 10 years.

I don't know if to go back to him and let him know whats happening afraid hes going to tell me again that he doesn't need to see me. My relationship with my BS is great. And there's test every 6 months scans in between. But only of my breasts.

I guess I'm scared because no one is worried about the rest of the body. What if it decides to spread to my bones or blood. Who's going to know. I won't be able to catch “the lump“ like i did with my breast. I guess I'm a little freaked of spreading and who's going to figure it out.

I'm definitely going to need a hysterectomy in Dec because of all the past masses they found and all the bleeding. I'm scared of the surgery. I'm 38, I have a beautiful 7yr old daughter and I'm so lucky. But I would have loved to give her a brother or sister and now that can't be. And i feel terrible. Because shes always asking for one. I'm sorry I'm venting. I'm sorry but I guess I needed to say that last part out loud to someone because I've just kept bottled up inside.

Any advise is helpful. Thanks.

I am sorry to hear of us losing yet another to this disease....................Rest in peace Michelle. I am thankful that we know that she did not chose to do chemo, because it might help someone else to make a different decision. I know there is no guarantee but as I have been told TN patients need chemo.

Yani just do what you feel is best but I will tell you it was my BS that caught my recurrence. I know how you feel though as my first oncologist just did not do what I felt he should be doing. I am learning the new one and going to be asking for more stuff as it comes. She does not do routine blood work but I am going to ask since two more members of my family have been diagnosed with 2 different types of cancer. If you feel like you are being passed on, maybe you need to check in to another doc. I think they follow us just to see if we are still here....(some of them) from what I have been told though is that blood work really don't tell them anything as far as cancer goes, it will just show if something is off and they need to look for cancer......same thing to me but they sling them words. Best of luck to you

Hi all, I am grateful to have benefitted from Michelle's kindness....

also, to anyone dealing with recurrence, you might want to ask your MO about alternatives to Xeloda (platinum drugs, PARP inhibitors , Avastin) as some studies suggest that Xeloda may not be as effective on TN mets as other types of BC. We need more MO's that specialize in TN and not treat us all the same!

Nance

PS Darkness induces sleep (helps the body to make melatonin to sleep). I took a class on brain function and the prof said that for some just the light from a clock radio is enough to interrupt sleep!

Nancyinct, my advise to you would be to get a second opinion.  Also, confirm your HER status:  if you are HER positive you will need Herceptin.  If you are HER negative AND er neg,  pr neg, you are Triple negative.  From everything I have ever read about TN is that you need chemo. So get busy and get a second opinion.  DO NOT be afraid that your current Dr. will be offended by it.  Squeeky wheel gets the grease- be your own advocate and get what makes you feel right. 

I am grateful to be able be outside in the beautiful Autumn air.  And to my wonderful Mother....she always has a listening ear when I need to complain about something.

Thanks, njprn.  I also extend thanks for your son's service in the Marines.  Where is your fella stationed?  Mine is in Jax, FL.  Was deployed to Okinawa earlier this year.

I agree with you that the TN foundation is also a very good site for info and education.