Calling all TNs
Comments
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Hi stupidboob, I usually do not sleep with a night on as I feel I fall asleep faster and sleep better.0 -
Thanks, kathy. its beautiful.
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Kathy,
Thank you so very much for passing on our love and our thanks to Michele and her family. I wish her peace and comfort after such a valiant struggle and hope that her family will find peace knowing how she helped so many of us with her strength and love of life. I just picture her in that pink bunny suit and it brings a smile to my face and tears to my eyes. She truly is a sister! Please hug them all for us.
Doreen0 -
Hello everyone:
A sister on another thread posted this update on Michelle :
I'm afraid my next update here will be to tell you all of mom's passing. She is resting comfortably and pain free at home. She is no longer able to open her eyes for more than a few moments. The nurses have told us that she will be gone in the next few days. She is surrounded by family and we are all grateful for the cards, letters, and warm wishes. I think, even though she can't talk to us anymore, that mom is still listening and that she's pissed and angry that cancer is winning this terrible war. There was never acceptance, only an amazing fighting spirit that refused to give in even for a moment. My mom is a brave warrior and I know she would tell you all to keep fighting with everything you've got, but above all to live as if there is no tomorrow.0 -
Kathy, thanks so much for passing along our thoughts and prayers to Michelle. May she be at peace and free of pain.
I haven't posted in ages but do check in from time to time. I wanted to say hello and wish all you ladies a wonderful day. I'm was so happy to see everyone posting about what you are grateful for. LauraJane was a very special lady and I think of her whenever I see the plant I put in my front garden in her memory.
Take care.0 -
Hello to all,
It's been a long time since I've posted or checked these forums. Just wanted to say hello. My prayers for Michelle and her family...0 -
Thank you Kathy. It is so thoughtful of you to include us. I can't write really write anything about Michele as it hurts too much. I'm sure you will tell her family how we all feel about her.
Tazzy- thank you for passing along the update.0 -
Kathy - thank you for taking that to Michelle. I've been off for the past few weeks, so I'm only now hearing the latest, but I remember her from when I first started checking in on the thread over the past two years. So sad to hear, especially knowing how strong and determined she was.0 -
I'm grateful for every chance I get to see my nephew, who is about 2 1/2 and is growing up into quite a little young man. Had a get-together today with my brother and sister and their spouses, which doesn't happen all that often.0 -
i
I'm just so sad...and angry! How can this disease still be a mystery to to solve??0 -
Kathrynn, thanks so much for the message for Michelle. I'm sure it will be appreciated by her family.0 -
Thanks Kathy for taking care of Michelle AND us on here too...appreciate you letting her know that we soo very much care for her and her family....
It seems that I hear about someone being diagnosed with bc almost every day....
I just don't understand how there can't be a cure yet...just think how cool it would be to have a cure...no more young women dealing with this..no more of us older women missing out on grandkids and a happy retirement....
Yah..I know we could be hit by a bus but I would rather take that chance...lol0 -
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.0 -
Kathy-Thank you for relaying our support to Luv. I don't even know what to say. She was such a positive force on these boards, and will continue to be, as we will always remember her smiling words.
Jianchi-That sounds promising!
5thsib- I too have had lasting pain, and they can't figure it out. It is so frustrating. I feel like everyone thinks I should be doing so much better, I pretty much hibernate because I don't want to bring people down. My 3 month check up is here again. I am trying not to freak out like I usually do, but not being too successful, My chest tightness has never gone away, even with more than 6 months of pt twice a week, and my surgery was 2 years ago! Progress has been very slow for me, but at least I am here, right?
Sugar-I often think of LauraJane, Suzie, blondelawyer and Dawn. I have a beautiful peach tree that I planted in remembrance of Suzie and LJ. This was its second summer and even though it is a small tree it produced quite a few tasty peaches! Must be LJ's green thumb watching over it!0 -
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.0 -
Just read on the "What's for dinner" site that Michelle (LuvRVing) passed away about a half hour ago.
So sad to hear this but she is at peace now. Prayers and hugs go out to her family and friends.
Doreen0 -
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.
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Thank you Dormac.0 -
NavyMom..... It wasn't my experience...it was "our" experience. I took you all there with me and Luv knew that. :-)0 -
heartbreaking.0 -
I am so sorry to hear of Michelle's passing . My sympathies and thoughts are with her family and friends.0 -
love hugs and prayers to her family0 -
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. Jan0 -
I read Michelle's diagnose over and over. Recurrence is such a scary thing. She started with Stage 1 and no lymph nodes involved, but three years later... I can't think too much about this... May her rest in peace.0 -
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.0 -
I am indeed very sad to hear about Luv - she was an amazing woman. May she rest in peace free from pain. My thoughts and prayers are with her family during this very difficult time - so glad they could all be there for her in her final days.0 -
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.0 -
Such sad news about Michelle. Losing two of our own in such a short period is devastating.
There was some information in the news article from Portland that concerned me: "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."
Where did this information come from? I've never heard that before. From everything I've read, TN responds better to chemo that other forms (just not followup medications available), and I've never been told I only have a prognosis of 5 to 8 years. Everything I've read does say IF it does come back, it is more likely to do so within the first 3 years, but after 3 years the odds of recurrence decrease significantly.
And I don't really care for another statement in the article: "Eventually cancers like triple negative will become a lifelong chronic disease and not a life ender." A lifelong chronic disease??? I want a CURE.
I am thankful to Susan G. Komen foundation for the money for research and for the research they are doing. I just think that whoever wrote the article didn't have all the facts.0 -
I hear ya Sib...and I think that statement was incorrect also..maybe they were talking stage 4 tn?
I guess I didn't know that Michelle didn't have chemo the first go around...guess she had her reasons...and we all have that choice...0 -
The article is very poorly written. It is supposed to say not "survival" but "disease-free survival" as in this definition:
disease-free survival
(dih-ZEEZ ... ser-VY-vul)
In cancer, the length of time after primary treatment for a cancer ends that the patient survives without any signs or symptoms of that cancer. In a clinical trial, measuring the disease-free survival is one way to see how well a new treatment works. Also called DFS, relapse-free survival, and RFS
The years quoted come from a study of DFS for TNs from a few years ago. The study had found 4 (or 5) years DFS for most. But what it also found was that TNs diagnosed after 60 tended to have 8 years DFS. Maybe this new study can find out why the difference in DFS years for the oldsters and make it applicable to younger TNs.
One can only pray. We need a cure!
Carol0
