How are people with liver mets doing?
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Grannax: I say go for it. You will be in a room of people that support you. Remember, you are a warrior!!!!
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I agree Grannex. Go for it. I was the main speaker at an American Cancer society fundraiser gala snd was terrified. I was rewarded in so many ways fir putting myself out theremuou are the perfect ambassador. I agree however that summarizing you in one paragraph is impossible. Go snd have fun. Enjoy your pampering.
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Oh Grannax, the pictures will be so cool! I can't wait to see them.
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Thanks for the encouragement. I think I'm going to do it. Yikes. I woke up this morning with a story in my head. I quickly wrote it down before I forgot the words. It's basically one paragraph. Should I share it here for all of you to critique?
My DS is not home from work yet. After he gets some rest, I will tell him about next Friday and see if he's available. He is on call so he may have been in the OR all day and night. He's an anesthesiologist.
I agree that the more exposure we can get, the more money for research, etc., will help all of us. Not just for MBC but any cancer with spread to the liver. What's the worst thing that could happen if I do it? I'll fall flat on my face and they will put the video on TV! That would be terrible but it would be exposure for sure.
I don't think that is probable, if they let me wear flats! I have some sparkly silver ones.
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Thanks for the replies guys, grannax, I was on taxol for a brief time, 9 weekly tx. They showed improvement with liver and lung Mets. We stopped chemo for about 2 months to try and figure out why I was so sick and all to have radiation for some bone mets to alleviate pain. So during a hospital stay I did have some ct scans that showed stable to slight increase in liver and lung Mets. Actually I felt pretty good about it since I hadn’t been having any treatment. Anyway now I’ve started doxil, I think you try to give it 3 months to work before you scan. Hope you all have a strong happy day
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Grannax2. DO IT! Represent us Stage IVers and post photos.
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Grannax2, I'm interested to hear your one paragraph story. I'm sure we all are.
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Here it is:
There's a monster in my life. He's real, not just a nightmare. He killed my mother and her mother. He haunts me and my family, including my sister. The monster is metastatic breast cancer.
I, however, am living with, not dying from metastatic breast cancer. I've had four diagnoses of breast cancer ( the first at age forty four) and even though I've had six different chemotherapy drugs, countless surgeries, radiation, hormone therapy, and targeted therapy, my monster still came back with a vengeance. However, successful treatment to the metastases in my liver has given me new hope. I knew nothing about SIR- Spheres Y-90 as a local therapy to treat "a lot of liver tumors." This treatment is my superhero that fights my monster. Liver tumors no longer have to mean certain death. I had my SIR Spheres Y-90 procedures 1-1/2 years ago and my tumors have been inactive since May 2017. My superhero zapped them into oblivion with the power of Yttrium.
I don't see my monster anymore.
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Grannax2. Bravo.
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Grannax. Great job!!!! Love it!
Bsbs
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awesome grannax! That’s it! I’m going to talk to my dr about the y90 thing. It’s just come up too much lately:) you guys have helped me understand that while the bone mets are the loudest to me and my drs right now maybe it’s time we pay attention to the silent stuff.
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grannax, I love it! I've found the accepted thought, decision, for these procedures, where I am, is that stage 4 is “systemic" and they 'wouldn't' be helpful. But I mention it in discussions every so often to let them know i am interested and have not checked it off my box of possibilities. I was very close when on Abraxene, then I it stopped working. It definitely makes a difference in some cases.....it would be great if the possibilities were known and used by more in the MSBC community.
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Grannax, walking that stage can't be any scarier than Stage 4! Just do the Texas Two Step and promenade, girl! I can't wait to see the photos!
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Thanks ladies. I talked to my DS last night and he's excited for me. He liked my story, too. And, best of all, he thinks that they will be able to come! Now pray for Suzanne to says it's ok for him to walk me down the cat walk! I'm not so scared now.
You can Google her. Suzanne Lindley and Say Yes to Hope. Very inspirational lady from Canton, Texas.
If this benefit/ fundraiser can give knowledge to other stage 1V patients with liver mets, then it's worth me wobbling down the runway. Every excuse I had for not doing this has had an answer. It's just come together. Except for what to do about my missing boob. I guess the seamstress and I will figure that out on Friday morning.
Oh, the announcer reads my story while I'm walking down the runway. Sure glad I don't have to read it. I get all teary eyed when I talk about my mother. I still miss her.
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miaomix. I'm curious, what awards have you won? I've never won an award. You said there are several, what type of work do you do?
If anyone asks me what I'm passionate about, I'm going to tell the about BCO and all my friends here. You are my lifeline. I read and write every morning and night. You've helped and encouraged me through almost two years of struggle. Z if you're reading, you were one of the first.. And Cure ious. And several that we've had to say goodbye to. All instrumental to get me through my meltdowns and cheer me on in the good times.
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Grannax2, your story is very well-crafted and I am proud of you. You will look gorgeous and you will not be afraid and you will have a blast. It's good to remember that these moments are exciting, and real excitement can feel very much like stage fright. Just tell yourself you will receive any jitters as joy!
A voice teacher once told my nervous daughter before a public performance, "Just take care of the song." That diffused her stage fright enormously, because it took the focus off of herself. It's just human to feel self-conscious on stage. Now whenever I do any public speaking, I think, "Just take care of the words, the message, the hearts listening."
Maybe you can find a way to make that helpful to you. I can't wait to hear that you had the night of your life!
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hi Grannax that's a beautifully composed message and I'm sure you're relieved that someone else will read it while you get to strut your stuff.
For the past 30 years my company designed and produced scenery for well known TV shows like Today on NBC, Saturday Night Live, four Super Bowls, Wimbledon, local and national sets for the news and sports divisions of the various networks. In the process I won five Emmys and the more prestigious Gracie Award for an innovation I contributed to my line of work. Maybe becaus of the drinking freely available at those shows, I could never gather the courage to get up when my name was called and would send the producers to accept on my behalf. After I attended the first one, I simply stopped going althogether, I was always a contrarian with an attitude, so it fit my personality well and there was always someone desperate to sit in my chair. Now 13 years after I retired, I look at my old profession as if it was from a past life. I love writing now...perfect while living with MBC.
Enjoy the event! Big hug
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Grannax-you go girl! You will be exquisite!
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Grannax, I love your paragraph you wrote for the event! Enjoy the fabulous parts of it - the pampering, the gift of the dress. As for your hesitation about the public performance aspect - rather than worrying about what people will think of you or how you will look on stage or even on TV, turn the focus to the fact that your story needs to be heard. It may make a difference in the life of another who hears your story and learns about Y90, regardless of whether you walk that runway like a model or walk it in slow, snail steps at your own pace, in your own way. That is the value you bring to that stage. I suspect you will have a memorable time, and doing something out of your comfort zone will build your confidence in other aspects of your life going forward. You rock!
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Enjoy your day Grannax. You will be great, I’m sure.
Any news on Z? It’s been seven weeks since she last logged in. Worried...
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At this point it appears that Z must have made a conscious decision to leave the boards for a while. I'd love for her to pop back in and prove me wrong, of course. I miss her.
I've been on BCO for 11 years so I've seen other women leave like this. One Stage IV gal who comes to mind is Ann (coolbreeze) who was quite active here for a long time and then left suddenly. Years later, she is still doing well and communicates only through her blog, butdoctorIhatepink. And some of you may remember the years when writer Kathy Rich would pop in only once a year, on January 15th, to let us know she was still alive. She lived 19 years at Stage IV.
I won't cast aspersions because I have also disappeared for a few months at a time over the years. But I'd sure like to hear from Z soon, and some others I can think of as well.
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I adore Ann Silberman. "But Doctor I Hate Pink" is a Facebook page, as well, and she updates it frequently, unlike her blog. Her chemo tips really helped me when I was facing AC late in 2015. Seven (or is it eight?) years of continual treatment have taken a serious toll on her QOL, but she has been around to see both of her sons graduate from college and has grandkids!
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I did not know that Ann is on facebook, so thanks for the tip! I am right with her on treatment toll. Today is the 8th anniversary of my Stage IV phone call (what a way to start the dreaded Pinktober; I mean, the timing still feels like a cruel cosmic joke), and I definitely feel what you're saying about the QOL drift. But... I'm still here to gripe about another Pinktober, so there's that.
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Houston scientist Jim Allison awarded Nobel Prize for Immunotherapy
Houston scientist Jim Allison was awarded the 2018 Nobel Prize in Medicine Monday for his pioneering research that has led to a new type of cancer treatment that frees the immune system to attack tumors.
Allison, MD Anderson Cancer Center's chairman of immunology, conducted research that's led to a class of drugs that unleash immune system brakes. The research realized the tantalizing promise of immunotherapy, which is now taking its place alongside surgery, radiation and chemotherapy as a prime weapon against cancer.
Is anyone under the care of this MO? Participating in some of his immunotherapy clinical trials? I would love to be under his care. I wouldn't mind taking risks if I had a chance at a complete remission.....it would be so nice to wake up one morning and realize this long nightmare had been only a dream...
I too miss Zarovka's voice and hope she's doing great. Hopefully she will update us soon....
Last but not least: James Allison, one of two cancer researchers who won the Nobel Prize in Medicine Monday, struggled to get drug companies interested in his cancer discovery. (But of course...what’s new)
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That's amazing lulubee. I am a MD A patient. During my second DX I was with Dr.Cristofanilli. He is at NW in Chicago now. This time I went down there but did not stay. I saw the MOso briefly I don't even remember her name. Dr Cristofannili is my favorite MO of all time. Personable and smart. His research led to CTC blood test.
I'm in for the whole event now. We are "part" of a famous designer's show. So it's not just us, eight other survivors. It's a real fashion show with real models strutting their stuff. Also, a couple of male models who will walk us down if we want or by ourselves. Then on our second walk my DS can walk me down. My family gets seven free tickets too. It's getting bigger and bigger but I'm not scared anymore. I've listened to all of your advice. Actually, I may just walk like the Miss America girls used to. Walk in the sixties when they didn't have to be professional models to win. And, I'll be thinking " Thank God I'm not wearing a bathing suit". I'm committed to doing this
I'll wave at my family and pretend I'm Miss America!
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Hi all-
Grannax, we are all so proud of you for putting a face on MBC, its the most fun to do stuff that was never on your radar before!!! I'll bet its uplifting, and that afterwards you won't believe you even considered not doing it! Lots of really caring people in the audience will be rooting for you, and so mostly maybe just try to relax enough so that you can enjoy and really be in the moment..
I've been quiet cuz there just have been no developments of note for a long time now- at this point, don't suppose anything much will come up until San Antonio conference in early December.
Jim Allison is fantastic choice for the Nobel, he pushed so hard to move pharna into this field, and is still pushing MD Anderson to be sure to do genetic analyses of biopsy samples following progression on immunotherapy to see why resistance crops up, and is pushing hard still in the lab to try to figure out what combinations of drugs or targeted agents could make immunotherapy work on lots of other cancers:
And yes, the boards are not the same without Z!! Hope her chemo is doing great and she comes back, but yeah there is so much on her plate...
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so excited for you Grannax!!! You are going to rock that runway!!!!!
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Grannax-How wonderful! Love the paragraph you wrote. Just go for it, and post the pics. I too have stage fright. I was in chorus in Jr and high school, and being very shy, it kind of brought me out of my shell. I would look up at the ceiling, but eventually, I could look at the people. I even sang in a smaller group in a select chorus. I did readings at my sister's and nephew's weddings, as an adult, and I was a nervous wreck! I hope they let you walk with your son. Big smiles!
Lynne
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Grannax, The more you tell us about Friday, the more exciting it sounds. Enjoy every minute and tell us about every single detail. I laughed when I read that you will be thinking how grateful you will be that you won't be in a bathing suit. Can you imagine walking down the runway in a skimpy swimsuit? Well our Miss America, you will shine.
Hugs and prayers from, Lynne
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changing treatments again. Find out more Thursday. Ugh
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