Triple Negative Stage IV
Comments
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Oh Yay for you,Surfdreams! It is indeed a merry Christmas for you!!!
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Surfdreams, I am so happy for you and your "stable" report. It's funny how good we get at speed-reading when the topic is significant to us. I am hoping that the bone scans produce a similar or even better report.
Hugs,
Brenda0 -
Thanks all! And yes, I read the summary report at the end first, then went back and devoured the rest of the report. ;-)0 -
way to go Surfdreams!!! Yay, big hugs, long may you dance with stable boy! Hope bone scan will be as positive.0 -
Whew, finally got my insurance straightened out, so that takes a bit worry off me. The insurance I had was ending Dec. 31 and I had to come up with a new plan. After being on the phone for 2 days, literally with 2 phones up to my ears, or dh on 1 and me on the other, finally got a plan in place, and we qualify for the government subsidy this year, which helps tremendously. I guess being in business for ourselves and not making much money this past year, does have its perks. You got to take the perks where you find them, right? Just did my chemo Monday, hope it works as well this time as the last two times, chest wall mets were coming back really fast after taking 2 weeks off, I hope I don't have to do that again.
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Yay for you, Marywh! I've been trying and trying to get my application completed on the federal healthcare website. It takes me all the way to the end (takes over an hour to get through all my info to get there), and then it kicks me out right before I get to the page to compare what plans are out there. So frustrating to do this over and over - hours and hours. I wonder if the website is working right yet?0 -
We had problems with it too, so we just did the application by phone...it takes awhile too, and many phone calls between insurance company and healthcare.gov, but it is well worth it..good luck.
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Just stopping by to give you an update. My last scan shows stable snd slight regression. I have been on Navelbine for 27 months and mets from the get go 4 and a half years ago. Earlier this year my onc told me that he originally gave me 12-18 months but that my response to Navelbine has changed all that.
Happy holidays!0 -
That's great news. Im still hoping navelbine is working for me, too. Not sure cause I had to take 2 weeks off due to blood counts. Keeping my fingers crossed though.
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Wonderful news!0 -
Lotusblossom,
Is the progression in your lung? Have you tried carbo/gemzar? This combo "vaporized" my tumors.
Hugs,
Brenda
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Merry Christmas (or happy holidays ) to all of you!!!oxoxo
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thanks Mary, wishing you & everyone a wonderful festive season. We had a huge family lunch, 4 generations together!
Have been so horribly nauseous on the Xeloda, started my week off today, so hoping to feel better. So much good food, so little appetite!!
Blessings xxx
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Hi Ladies,
I think I may have been on this board a couple of months ago when first dx but then found another board for Christian women with BC so because I have a very strong faith I felt like it was where I was being guided. However there are not too many ladies with TNBC and now that I am on my treatment I have some questions regarding Abraxane and Avastin that I am currently on and would like to talk with others regarding the SE.
I have been doing Abraxane every Monday and Avastin every other Monday. So far everything has gone well and I have only had a few minor SE. On day 16 started losing hair and it is thinning pretty good now. Haven't taken the step to buzz it just yet. I praying it will just stop one day soon as I was told some women may just thin. I have a little tingling at the tip of my tongue the day of treatment and last a day or two after. Constipation is the norm now but myralax and ducasate help along with diet. Blood tinged in my nose but I have saline spray and gel that helps that. Since my last treatment on the 23rd I have experienced a very slight headache, slight dizziness the first 2 days and tired today along with a slight pain/cramping in my tummy. I don't know if I just didn't drink enough water or what. I took a couple of tums last night as I woke a few times with what felt like heartburn. It seemed to help but has been present most of the day today. I will be calling my MO in the morning to find our more but thought I would put this out there and maybe get on this board with other women who are on the same drugs to gain knowledge of what to about some of the SE's that are starting to show up as I go deeper into treatment. Also I am having neupogen shots on Tuesday and Wednesdays and I experience slight pain and more deeper pain later in the evening but Tylenol seems to work fine.
Hope everyone had a Merry Christmas and minimal SE's during the holiday.
Lucy
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Hi Lucy,
Welcome! I have not had the Abraxane nor the Avastin, but I am taking a daily dose of Prilosec for acid reflux. I am noticing that if I forget to take it my stomach acts up and I cough because of it. My chemo cocktail consists of carboplatin and gemzar.
Someone else may show up with similar tx so hang in there.
Good luck to you!
Brenda
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I was diagnosed with Stage IV, triple negative on 7/2/13. After seeing one doctor who diagnosed me with mastitis and put me on antibiotics for a month while the swelling and redness got worse. I sought the opinion of a second doctor who initially diagnosed me with an infected abcess in my left breast after doing ultrasound. She decided to get me right in to do a surgical biopsy and drain the abcess but after waking up from surgery I was then told I had breast cancer! What a shock! The Oncologist immediately got me on chemo treatments with Adriamycin and Cytoxin. Received treatments every two weeks for about 3 months and had great results, all lymph nodes returned to normal size, and the left breast returned to normal size with very little exterior redness. This is when they should have done the mastectomy!!! However, the Oncologist decided to try Taxol which did nothing and all the redness and swelling returned worse than before. I was at my wit's end, in a lot of pain and really afraid I would not make it thru this. The left breast started ulcerating to the surface of the the skin in big red blisters and it was extremely painful. The team of doctors finally agreed it was time for the breast to be removed, the mastectomy was done the day after Thanksgiving, 11/29/13. I also had fluid built up around the lining of my left lung which they had to drain in the hospital over several days amounting to approximately 4 full liters of fluid. I am now back on chemo--Gemcitabine and Carboplatin. It seems to be keeping the pleural fluid in check and I am now noticing that my hair is growing back! I am so thankful to still be alive and for all the support of my loving, praying family and friends! I have hope for the future. Some days are better than others but I am thinking positive and feeling so grateful for a second chance at life! I have 2 daughters and 2 grandsons, I would really love to be around a while to watch them thrive! God bless all you warriors!
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Welcome to both newbies. I have been on Abraxane, but had no se to speak of, so cant help you there. Got a really bad shock Friday when I went for my scans, not only had I progressed in all areas, but have a new big spot on my femur bone up next to the hip. They said my leg could break at any time so I have to use a walker. They wanted me to use crutches, but I cant because of the lymphedema. Don't know where they'll go from here. They could put a rod in my leg, but that would mean down time from chemo, and I cant do that cause the mets to my liver has grown a lot. Rads to my leg is a possibility, but they usually don't do both chemo and rads at the same time. Will know more Monday when mo is back in the office. If its not 1 thing its another.
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Hi Ladies,
Sunrise - We are neighbors, I am near Olympia just a couple of hours away. Do you have mets to lung? How long have you been on chemo? What SE's have you experienced? Have you had other scans to show any progress?
Marywh - I see you have mets to liver and now bone, is that correct? How long have you been on Abraxane? What is your regimine, weekly/bi-wkly? You have not had any SE's at all? I have been on it weekly since Nov. 25th and the SE I have experienced are constipation (not bad), blood tinged mucus in my nose, hair loss/thinning, and just last week a slight burning in my stomach since treatment on Monday. The nurse told me to start taking Pepcid so that seems to help.
Thanks for sharing...Lucy
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Im not on it anymore, but I was on it weekly. It was my favorite chemo of all of them but had progression after 8 months.
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Welcome newbies. Sorry that you have to be.
Sorry to hear about progression, Mary. Are you moving on to a different chemo?
On another forum, there was a lady who had Y90 Radioembolization for the liver mets. They place beads into an artery that feeds the tumors. The beads radiate the tumors and can work really well. I think she is doing Xeloda with it. It is supposed to be synergistic. There may be other chemo that can be used with it too. Maybe this could be an option for you.
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Hello Ladies- I was recently diagnosed stage IV- met to liver, pancreas, spot near kidney, one node lit up in the non cancer boob, and near my sternum. It's been a crazy month or so. Had first chemo 3 weeks ago, will have next one Thursday. I was so sick from the chemo day 2,3 and 4 after. I am not looking for to this weekend. I do have a question for y'all, who here was given a palliative chemo paper to sign? I just started thinking about this as I read most of your posts.
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Sunrise, I am presently getting the Carboplatin/Gemzar combo and as of Nov. 4, 2013, my tumors in the lining of my left lung were all gone. I am anxious about my Jan. 15 scans. I hope I remain clear of the pesky little beasts.
Mary, sorry about the progression. Have you heard of the Y90 Radioembolization? I have also read about this on the Inspire website.
Hugs,
Brenda
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oh Mary, so sorry to hear your news- damn this disease!! Sending big hugs xxx
On my week off Xeloda & can even enjoy food again, had bad nausea with this 2nd cycle, no appetite to speak of. Will have 10 days off as I'm visiting with family away from home, so nice to start feeling better! Am dreading the next cycle which starts on Friday! BUT, if it does the trick it'll be worth it - I want the stable boy or Reggie!!
Welcome to newbies, this site is just so helpful & it's so good to speak with other women in the same boat - no one else really gets it (& why should they?) I get lots if comfort, hope & wisdom here.
What sort of new year wishes does one say? Better health, of course, & may we all make some beautiful memories & have lots of good days, & peace too!
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Hi Ladies,
I just found out yesterday that a mass I had removed on my outer arm was metastatic tn breast cancer. They are scheduling a PET and figuring out what chemo to give me. It's a very small cancer center and he is also going to make me an appt with one of the major research centers here in my state. I had moved and my new MO isn't familiar with tn so he wants me to consult with the other. Right now I am just trying not to freak or panic.
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I'm keeping my fingers crossed for your good scans, Brenda!
lostinmo -- I'm sorry to hear about your progression! Welcome to our little site! Lots of good information here, and lots of people who are on similar journeys as you. Please don't freak or panic. It sounds like your Oncologist is making wise decisions to get a handle on your treatment. Things will settle down once you have a treatment plan in place. In the meantime, please take time to breathe and to process your news. Please keep us posted on what you find out at the research center. Triple Negative is aggressive, but on the bright side (if there is a bright side), it often responds better to treatment than the positives. Hang in there, and come back here often. ;-)
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surfdreams - I see you had Abraxane in 2011, I just stared it on 11/25. Can you share some of the side effects you experienced and did you take anything more with it? What type of things did you do for preventative to side effects?
Lostinmo - looks like you had treatment before surgery. When were you done with the last treatment before it came back? This is all still new to me so I am trying to figure out what things I need or should do.
Thanks Lucy
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Thanks Ladies.
Lucy, I finished radiation in October of 2012 and found the new spot on my arm September of 2013. So I was almost a year out.
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Surfdreams, thanks for keeping your fingers crossed for me.
Welcome to lostinmo. Surfdreams is right TNBC responds better to treatment, i.e. chemo.
Hugs,
Brenda
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Hi
everyone.First
all of let me say that you all are so so so brave. I've watched my mother
battle this thing for months and I'm so amazed by her strength and the strength
of all of you. Stronger than any man I've ever known.My mom
was diagnosed with triple negative breast cancer in May. She started chemo
treatment in June. They had her on cytoxan and another chemo drug that starts
with an "A"...andro...something...Anyway,she
had about 18 rounds of chemo. She lost her all her hair and her nails
turned black. She developed naropathy in her hands and feet but suffered from
no nausea and was able to go to work everyday. We were all so optimistic
when it was time for the PEP scan results. To our devastation, the results showed
that the tumor only shrank from a 6.3 to 5.7 and the core of the tumor which
was suppose to get softer and translucent, according to the dr's, got harder
and denser. How does chemo make it worse?! They diagnosed her at stage IV and
said she had a 20% chance to live another 5 years. And the tumor had attached
to the chest wall so they can't operate. Also, they found 2 very very small
specs on her lungs, hence the stage IV diagnosis, but they are so small
that they couldn't get a needle through it to do the biopsy.However,
when she saw the radiologist, he was convinced that he could shrink the tumor
by 80% and get it away from her chest. He was very optimistic while the other
doctor was all doom and gloom. I don't know what to think! He started her on 40
rounds of radiation over the next 8 weeks (5x per week) and once a week she is
getting chemo treatment. The chemo drug she is getting now is carboplatin. I
researched this drug and it says that triple negative responds very well to
this specific chemo therapy which is great.My
mother was an RN for over 30 years and is a top nursing administrator so she
knows her way around dr's and hospitals. She's keeping a positive attitude,
started yoga and stopped eating chicken, beef, and pork adopting a plant based
diet keeping dairy to a minimum. She doesn't drink soda (she use to down two
bottles of Pepsi a day) and only drinks water, herbal tea, almond milk and some
juices. I became a vegetarian with her just so she doesn't have to go through
that journey alone.While
visiting last week, she lifted her breast and I could see the tumor coming out.
It was black and hard..it looked so evil and painful. It just broke my
heart.I'm a
mama's boy through and through. And proud of it. My mother is my best friend,
hero and confidant. If I go 48 hours without talking to the lady I start
leaving stalker like messages on her voicemail. lol.I feel
like she's doing all the right things. But will the radiation work? Will the
carboplatin work? Or is the doctor blowing smoke up our ass? Will the lifestyle
change work? I'm terrified. Absolutely terrified.0 -
Mama's Boy,
Will the doctors surgically remove her breast tumors? Also, are they combining the carboplatin with another chemo? I am no expert, but I thought that carboplatin is better when combined with another drug like gemzar.
You and your mom are being proactive in battling this awful disease. She is lucky to have a devoted son.
Good luck to both of you.
Brenda
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