Triple Negative Stage IV
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Kaay.. so nice to hear from you and congrats on the two years.. indeed this is great news and pray for many many more years to come from you..
keep strong
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I am still here.....Last weekend I had a setback. Had experienced headaches for 5 days and then nausea also for two days. We went to ER....long story short, MRI found 8 lesions on my cerebellum. I start radiation tomorrow. Will under go 14 radiation treatments then scan to see if it is working. My vaccine trial has been put on hold. Hoping they will still be able to do it after rads. ONC is talking with pharmaceutical company keeping them informed. Since they already have the vaccine made (most of the cost). So prayers that it all works out. I am very optomistic about all of this. I still feel great (as you can tell from pictures this week). And I will lose my hair again....so back to the blonde wig we go. I am unable to drive while undergoing Rads....., but I have the best Support system. From my loving husband, family and dear friends!!
Hugs to all you lovely ladies!!
Julie
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Texas so sorry to hear all this but way to go for your attitude.. totally strong and positive.. you know i feel that fighting this disease changes us and the roller coaster we go through sometimes makes us strong and reinforces our determination. Not always but we end up stronger than we expected.
I pray for you deeply for a quick recovery and for you to get back on the vaccine trial.. I read about it and it really sound very promissing.
Thinking of you and sending you strenghts and courage for you to get through this phase.
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Julie, I am so sorry to hear this. You always weather each change of this crazy disease so gracefully. I will be thinking of you these next two weeks and praying for all the best in putting a stop to this progression. Post whenever you need to. Always here for you as you have been for so many of us.
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Thank you ladies!! I am still doing great! I have had two radiation treatments so far. I am a warrior so not giving up yet! Too much living to do and will as long as the Good Lord allows me to. I have my 11 year old granddaughter visiting us this week from Florida....and we have been busy! No time to sit and think about the BIG "C"....which is a good thing!
HUGS to you all!
Julie
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That's so wonderful, Julie! Enjoy every minute with your grandaughter!
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Thank you Kay!! How are you doing?? I see still on CARBO.
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Yes! Carbo and I are about to celebrate our 2 year anniversary. Things I never knew before cancer include the joy of being in a long term relationship with a chemo drug that treats you well and gets the job done. The only change that I have is a sour stomach on days 2-3.5 post infusion. Never used to have it so a bummer that it showed up one day but it's not too bad and doesn't last long. Really makes me want to eat vanilla ice cream. No idea why but I go ahead and eat away. I am grateful to be feeling so well and for that fact that my children have enjoyed two more years of a perfectly normal childhood without the fear or stress of cancer. Aside from showing up for treatment twice a month, life is very normal.
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Kay I am soooo happy for you.Praying CARBO is your drug for along time. So sorry you experience the sour stomach, but a little of that is well worth the time with your beautiful children. I am relaxing today...my granddaughter from Florida came out to stay for a week. So we have been busy spending time with my daughter (who lives about 40 miles) and my other two grandchildren. I am not letting anything hold me back! We have shopped til we dropped and had a family sleeping party last night with everyone hanging out!! Love my family time!!!
Hugs to you!!
Julie
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Hugs to all, such a mix of sad and happy news. Love you and am sending positive thoughts, prayers and love
hugs
Rose
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Greetings to all you wonderful people! I am delighted to say I am still in the land of the living with all my mental faculties in place. Four weeks have flown by. We drove 4,335 miles between Northern Indiana and Eastern Oregon. We had a fantastic visit with my brother, which was the whole point of the trip. We also enjoyed the Tetons and Yellowstone. Two things on my wish list got covered.
Following are pictures of our trip and some wonderful things that happened right after we got home.
Supper with my brother's son and daughter. It was serendipitous that they were visiting at the same time.
My 80-year-old uncle and his wife drove 8 hours across Oregon just to see us. It was wonderful.
After spending two days visiting in prison, we headed off to the Tetons. We spent one night in a cabin. It was so nice to settle down and rest for a bit. We did our own food and just relaxed. My husband loves photography and is very good. He took three hours from dawn and just drove and took pictures to his heart's content. This is outside the cabin, about 2 miles south of Yellowstone.
Just a sample of his work.
Old Faithful obliged us during lunch.
My one walk was out to the Fountain Paint Pot and its friends. 8,000 feet and I didn't get on really well. I like breathing! The sun was really bright, hence the less than cheerful aspects.
i came home to another amazing experience. I've been working on my Master Guide for my Pathfinder Club. It's the highest level that can be reached and it takes a lot of reading and other time to get done. I haven't finished the material, but they Invested me anyway. It's such an honor.
After I got home that day, the best of all came to me. My sister, with some assistance from our mother, rapidly finished a quilt she had started for me. I saw all the bits and pieces before I left for Oregon. We were gone 10 days. The whole thing was completed by the time we got back!
This is with my mother, showing off the back a little. It is all quilted with notes and treble clefs. Because of the way it got done, it is completely reversible.
Myself, my sister, and our mother.
The title of the quilt is "The Music in Me". There couldn't be a more appropriate title for me.
Detail of quilt.
Just wanted you all to know how I'm doing and to encourage you. We take one day at a time, but we look ahead and set small goals of things we want to do. That's how we keep going in good health and cheerfulness. Blessings on each of you.
Raewyn0 -
Raewyn, it just makes my day to hear of your wonderful trip. I am so glad you are enjoying life to the full. Thanks for your words and the beautiful pictures. Always thinking of you.
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Texas, I'm sorry to hear your news. I hope the radiation knocks them out and you continue to enjoy life.
Kay, I'm glad things are going so well for you. Raewyn, looks like a lovely trip! Glad you got to enjoy yourself.
I had my CT scan last week. My metastatic lymph nodes were finally big enough top qualify me for the CDX-011 trial. Unfortunately I got randomized for the control arm and will be getting Xeloda and not the experimental drug. I'm beyond disappointed. I've waited over 6 months to finally qualify, and I get put on Xeloda! If I wasn't trying to get into this damn trial I could have been on Xeloda months ago. They won't let anyone into the trial if they already had it. So now my untreated cancer has been merrily growing away, and the scan showed some pleural effusion as well. I start the Xeloda on the 10th..
I've been having issues I think may be related the the pleural effusion - intermittent shoulder pain, excruciating at times, coughing fits, every morning I have a fever of 99.1. Last night when I was working out I felt short of breath but not sure if I'm imagining it. I don't want to end up in the hospital. Hoping I can make to the 10th and start killing some cells ASAP!
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Raewyn, looks like an amazing trip!!
I did get some good new this week....they are going to let me do the vaccine clinical trial after I finish WBR and do a 4 week cleanse. I finish WBR on 15th of August...so hoping around 11th of September starting the trial. I had my annual physical this last week and all my labs and everything else is great! So I think before I add chemo back into my life I am going to do the vaccine immunotherapy.
Minxie...I am soooo sorry about your trial. That happened to me when I started with Paxol back in 2015. I didn't get selected. Hang in there!!!
Hugs to you lovely ladies!!!
Julie
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Julie, I am so glad you have a plan in place for starting the vaccine. That is great news!
And minxie...urghh...I am just shaking my head in disbelief. How could you have waited so long for what you didn't even need to wait for! I hate that that is even possible and more that there is nothng to do about it. Hang in there and may xeloda treat YOU well and your disease terribly.
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Raewyn,
your posts and pictures are so beautiful! Please continue sharing your amazing experiences!
--sfgirl
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minXie hang in there.. speak to other docs.. get Other opinion .. did you start xeloda?
Rgc .. fantastic pics.. share With us your journey and feelings
Texas.. more encouragements from me
Kaay.. great to Hear from you.
This whole journey is weird. . I have all feelings at once.. scared. Strong.. positive.. anxious..sentimental.. apprehensive.. determined.. sad . Thankful.. lonely. Loving.. caring.. fighting.. giving up.. happy.. powerless.. hopeful..
Really weird any of you feeling the same?
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today was my last WBR. So now I can move on to my clinical trial. I am feeling great and blessed that I feel great. DH and I are taking off for a few days to the beach with our German Shepherd then on the way home we are going to pick up a femal GS. We are naming her Layla.
I will keep you all posted on my vaccine trial.
Hugs to all you lovely ladies!!!!
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So glad to hear, Julie! And congrats on Layla, too. Enjoy the beach!
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Glad to hear the good news, TexasRose!
I started the Xeloda last Tuesday. All was fine until this Tuesday night when horrible diarrhea struck. I've had to miss work. My doctor got me a prescription for Lomatil which seems to be helping. I think I'm on a ridiculously high dose of Xeloda (4600 a day) so I'm going to beg to have it reduced.
I had the diarrhea episode when I was sleeping over my boyfriend's. I thought it was food poisoning, but when it kicked in again the next day at work I knew it had to be the Xeloda. Which meant having to have a discussion with him I'd been avoiding. He knew I had BC and that it had come back last summer, but he didn't know about the current lymph nodes. I finally broke down and told him. We love each other and this is so hard knowing we don't have much of a future together. My first marriage was a disaster and now I've finally found the most wonderful guy and I'm not going to get to grow old with him. Crying...
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(((Hugs))) Minxie. No doubt about it, we and those we love are being robbed. Hold tight to your good man and enjoy what you have. I am glad he's completely in the know and is there for you. Hope you are feeling better soon.
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Xeloda has not been kind to me.
I just emailed this to my doctor and the research coordinators. I see my doctor next week. We'll see what he says.
"This past week on Xeloda has been a nightmare. The gastrointestinal symptoms have been as bad or worse as when I was on ACT chemo. The Lomatil seemed to help early on, but stopped working completely over the weekend. I've had diarrhea 8 times over the past 24 hours, along with nausea and vomiting. I've lost 4 pounds this week. My feet hurt so much I can hardly walk.
This is not doable for me. I can't live my life doubled over with cramps and tethered to a toilet. I'll give Xeloda one more try only if I can get on a reduced dose and a 7/7 dosing schedule. If the trial does not allow that I'm dropping out."
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Oh, Minxie! I am so sorry to hear this. You simply must feel well so dropping out, though so disappointing is what must be done. Find something better. And, time for me to do the same. Carbo and I are breaking up. No longer working for me. Appt. this morning to get the details of what is next.
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Well, my appointment went well but no clear direction on treatment at this point. I meet with her again next week for another blood draw and to make a decision. Two local trial options: 1) CPI-444 alone or in combo with atezolizumab 2) AGEN1884 (first time tested in humans...not loving it). I may not qualify for the first. Could do Opdivo off-trial, possibly with Abraxane, though insurance doesn't like adding the Abraxane off-trial as much. Looking into trials at Cleveland Clinic and Vanderbilt but I don't see any. Immunos are the first choice, Xeloda the second, followed by Halaven. What happened to my back pocket you might ask? Y90 hasn't been going well for patients my onc has had try it in the last year. Progression elsewhere in the meantime of gauging the procedure's effectiveness while the liver is inflamed has been the problem. I trust her and know the load of aggressive cancer in my liver and so can't consider pushing to try it anyway. Maybe down the line if we have more information...if I'm here down the line. Oh, my, how progression rocks one's confidence. What to do? Also, had Gardant 360 done and will do biopsy again to get more info.
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Don't know where to post or chyme in but here I am. I'm stage IV and TNBC so I guess I fit here. My story is so convoluted and complicated right now. I guess I just need to vent and I'm scared. I was taken off a Pembrolizumab trial yesterday with 7/7 xeloda that I've been on since December 2016 in Portland Oregon. This last month has been a nightmare. The beginning of the month I had a follow up PET that showed new lymph nodes lighting up and ones from 3 months ago gone. But also new tiny bilateral pleural effusions and fluid in the belly (ascites). This has been the case since December, we play "whack a mole" with all the lymph nodes in my body. I still don't show a speck of cancer in bones, brain or organs. They have mostly resolved around my head and neck, (where this started) and mainly I have chest and mesentery nodes that have been wreaking havoc for months with pain and pressure on stuff where they sit and inflame. Was to have Immunotherapy infusion #13 yesterday but had CT first. Trial doc declared ascites and pleural effusions "progression" and ended trial for me. That is okay as I was ready to be done anyway because the side effects have just gotten intolerable (hives, fevers, crushing fatigue) but she refused to entertain the idea that the fluids *might* be an inflammatory response to the pembro, which my local oncologist believes they might be. My local oncologist suggested higher dose of steroids and for a longer period to see if fluid would resolve and tap and check for malignancy if it did not. I will not be seeing trial doctor anymore. She was terrible anyway.
So here I sit. I can't breathe very well, have pretty significant pressure in belly which makes me unable to pee very well. I have a weird unidentified bumpy rash on my neck. I'm sick of the LE in my left arm and hand. Have very little appetite or thirst but am eating a little again and trying to sip liquids and believe it or not, I do feel a little better on higher steroid dose than I did last week...when I thought I was starting to shut down and die. I soldiered thru the weekend while 25 people camped on our 5 acres for the eclipse on Monday (we were .5 miles from exact center of totality) and by Tuesday I was ready to be admitted to the hospital. I was ready to have a port put back in and go traditional chemo, I was NEVER this sick on AC-T 4 years ago and that is sad and scary. I'm feeling a little sorry for myself and cry at the drop of a hat. My local oncologist (who is amazing by the way and gave me her personal phone number a month ago and we actually TEXT, I say that just to tell you how nice and caring she is to me) will see me this coming week and if I am not better we will do thorocentesis. (sp?). I need this little pause and I just want to feel better so I can have a clear head to figure out where to go next.
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PeacockGirl,
My heart goes out to you. Did they try to do something about your ascites? Are they consider doing paracentesis ?
On a different note, did you get to see the totality of the eclipse? I've been camping in the field near Madras, OR. The totality moment was far more impressive than I imagined. Aren't we lucky that we've witnessed such a rare celestial event?
--sfgirl
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yes I experienced totality with 40 other people in my horse pasture it was epic! Were you at the symbiosis event? That looked amazing. In other news I'mfeeling better today slept with no coughing last night and eating and drinking better today. The rash in my neck is going away too ..,prednisone is doing something. -Nichole
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PeacockGirl,
I was at Oregon Solarfest event. Don't know if they count that as a part of Symbiosis. My body still badly aches from sleeping in the tent. But it was so worth it, seeing totality and a "diamond ring effect" - wow.
--sfgirl
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Hi everyone. In April 2017, I was diagnosed with Stage 3 TNBC, a tumor in my left breast and 10+ lymph nodes affected. I saw a oncologist here in Oklahoma City but opted to get my direction form MD Anderson in Houston. I received 4 doses of AC chemo over 8 weeks. My last chemo treatment was July 13th. An ultrasound showed about a 10% decrease in the size of the tumors. I was supposed to start Taxel next but my intuition told me something wasn't right. I asked for a PET scan. My original tests were CT Scans, MRI's and ultrasounds. The PET revealed another small tumor in my liver and the biopsy at MD Anderson confirmed it as TNBC and now stage 4.
I had horrible side effects with AC chemo. I wasn't myself and I couldn't do anything to stop the crying, depression and feeling physically crappy overall. When I found out I was stage 4, I immediately signed up for a trial that was anything but chemo. My markers came back negative for the trial so I am ineligible. If the flood waters recede, my next appointment in Houston is Sept 7th to have CT scans, etc. then follow up with my doctor on the 8th. Bottom line, I don't want to do chemo. My fear is that I won't have quality of life and why extend it if that is the case? What happens if I do nothing? How long will I have? These are the questions I will ask my doctor. I am open to feedback and your experiences.
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Kaylynne, my wife's Estrogen Positive turned triple negative with multiple mets to her spine. She had A/C back when she was ER+ with a horrible and near fatal reaction to Taxol. A/C was not kind to her. She's now on Xeloda and Zometa for a bone strengthener. Xeloda has a whole different set of problems but, for her, doable. The Zometa is also a type of chemo that helps to get rid of dormant cancer in the bones.
Check out Xeloda and read comments in the Xeloda forum.
Good luck
Mike W.
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