Triple Negative Stage IV
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My wife had almost died from just one infusion of Taxol. It happened in the infusion room; nurses and doctors running, crash cart, etc. My wife's ER/PR+ turned triple negative about a year ago and she's been on Xeloda since. Xeloda has been working, so far anyway, against her numerous mets to the spine.
Kaylnne, my wife's oncologist has said if the various chemo options started to fail her he'd have her take the Foundation 1 or the other one (I forgot its name).
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minxie - if you dont qualify for the trial, approach the foundationone or guardant health directly for those tests even if your onc is not onboard with this. I still regret not doing this way for my aunt.
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I did foundation one already. It came up with two mutations that have no line of treatment. I did my thoracentesis today. 1.5 liters of fluid. I hurt like hell right now. Talked to my oncologist, he's now thinking Gemzar and carbo. Which is hopefully better than taxol
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It's been too long since I've posted any updates and I seem to barely be able to keep up with reading. Life doesn't quit... it's been a busy couple of months and I can't say I'm a picture of health. Truly I should just avoid pictures altogether. I certainly look the part of a dying cancer patient now. Forget the cute youthful pic you see with each post. I'm bald, browless, lash less, ungodly thin. Crepey dry skin covering bones and a belly swelled to at least the final month or two of the 3rd trimester with no expectant joy. Add to that a black eye. This is how I came out of the MRI which definitely diagnosed mets to my spine, focused on three vertebrae with possibility of diffuse mets in marrow. Also vertebrae have collapsed on to the spinal cord a bit but liver mets are stable and all things considered, I do feel pretty well...look awful. I see my onc on Tuesday then hubby and I fly off to St. Thomas. At my lowest point I thought it very possible I don't make it to the summer and I just had to see the sunshine and feel the warm air before I go, not to mention needed some sweet rest and time away with my love. Things improved shortly after booking the trip. Nevertheless, I have no regrets and can't wait to see those beautiful blue skies and waters.
Seems we may do some radiation to spine and keep with cisplatin and gemzar as long as we can. Not sure I have much hope for a trial. My counts just take too long to recover to their standard. So it's just a few chemos left.
Kaylynne I just hate hearing that Xeloda doesn't seem to be doing much and minxie, I do understand those low moments. Here's to good news for all of us and soon.
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Hello,
I am the sister of a stage 4 triple negative metastatic cancer, originally IDC of breast ER+/PR+/HER+ diagnosed in 2012, completed ACT, was in remission until April 2017 with diffuse liver mets , BRACA2+,with poorly differentiated cells, pathology more towards adenoma carcinoma of unknown origin. My sister has had a horrible year, starting with a very poor prognosis, they have looked everywhere for a primary as the markers look towards GI with one towards Breast, but unable to find a primary. Initially we were told that she was not a candidate for Y90 but after 11 treatments of Taxol and Carboplatin every 3 weeks, and the last several months every 5-6 weeks inpatient due to adverse reaction to Carboplatin and low platelets.This past January we decided to try and pursue Y90 again. Finally after all the chemo and growing toxicity of chemo, they did refer her case to IR to evaluate for possible Y90, one said she was not a candidate but the other said he would do this. She had rough time after the Y90 (only had one lobe done)but 6 weeks out they are calling her partial remission. I have been reading these threads for just about a year and feel like I know so many of you, celebrate your good news and pray with you all during these difficult times. I never intended to post,but this site has had some difficult news in the past few months. I accompany my sister to all her appointments. I have learned so much and am filled with gratitude for all the sharing and help you all offer. I felt compelled today to share our good news because I feel like some positive news is needed right now. My sister is still very weak with platelets around 30,000. but to hear that most of her liver tumors are gone was such a complete glorious news to hear.
I am so happy that you are going on a trip Kaayborg, we are in the Cleveland area and being treated at UH (Dr. Paula Silverman, we love), we went on a sister trip in February ( I have four sisters, we lost our older sister to Breast Cancer 22 years ago) to California for some much needed sun and warmth. It was wonderful.
I am sending positive thoughts, and prayers to all of you. It is so hard not to get discouraged but I really feel that there continue to be options and would encourage all to seek out additional opinions. Much love and prayers to you all
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Kaayborg-Thanks for the update. My heart goes out to you for having endured so much. How in the world does one get a black eye from an MRI? Bless your heart. I am so excited that you get to jet off to St Thomas with your man. Sun, sand and sea can do wonders for your soul. It honestly sucks when I look in the mirror and see the changes due to cancer, not to mention the constant aches and pains. Reminds me of the song, I'm too young to feel this damn old. This is going to sound really cliche and sappy, but what matters most to me is keeping the beauty I have inside. It would be so easy to get bitter and pissed off and stay that way. I'm choosing, as I think you are, to live my life to the fullest and express love and gratitude to all the people in my life. It's really the only way for anyone to live. Have so much fun on your getaway.
Irishsister-That is fantastic news about your sis. We all needed some good news.
Prayers and love to everyone of you.
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Kaayborg - I'm sorry you're having a rough time. I hope you have a wonderful, refreshing trip to St. Thomas!
I'm starting Gemzar/cisplatin chemo tomorrow. Glad to start beating this cancer back, but dreading the chemo procedure itself.
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I need some help ladies. I'm sorry to be such a whiner when I know you are all going through your own miseries. But I have a serious problem with doing IV chemo again. After my initial cancer TX I was diagnosed with PTSD from the experience. Multiple surgeries, chemo, bad news after bad news really messed me up mentally. I started having panic attacks and thought I had brain mets because I didn't recognize the symptoms. I got addicted to painkillers as a way to escape my fear but I think they never really left. I'd have awful medically related nightmares. I guess I'm not that strong a person.
The thought of doing IV chemo tomorrow makes my cry and have panic attacks. I'm worried I'm going to lose it in there. That horrible room, that horrible chair... I just don't think I can do it again. Help me get through this. Right now I'd be ok just giving up
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Minxie, I feel awful for you. My IV chemo wasn't that bad this time around - I did weekly Abraxane until the rads. Maybe hypnosis? If it helps smokers not have cravings, maybe it can help you not have the panic and fear. I really don't know, as I haven't been hypnotized myself.
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Minxie
I have had that feeling a few times myself. What gets me through it is breathing, just listening to my breathing, counting while I inhale, holding, then counting when I exhale over and over until I calm down. It really works for me.
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Minxie one of the things I love most about you is the honest and real way you reach out. We are here to hear each other's complaints and fears. It's not all roses for sure.
I'm wondering if you could ask for some meds to help keep you calm. I take Benadryl since I was allergic to carboplatin, a sister drug. It knocks me out and I sleep the whole time.
Also remember every chemo is different and affects people differently. This is not your past experience. It's a new one and I will be thinking of you and praying for you all day tomorrow. Remember that. We're all with you in spirit and I am glad to have you as my chemo buddy. This is my 2nd favorite chemo. Carbo/gem was best. Cis/gem is almost equally as tolerable. May it be the same for you.
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Hello everyone. Sharjin for my mom here. I could not figure out how to stay updated in this thread. I went back to starting of this thread and started reading everyone's fighting stories and got attached with everyone. And by the time I come to the end, I see you wonderful people remembering me and asking about my mom's health. I could not be any more grateful.
Thank you so much for remembering me Hartrish, Kaayborg, kay, Minxie , Riley and everybody. I have come from canada in Singapore to be with my mother for a month as she is taking treatment in here. Every night I sleep right beside her and realize how hard it can be to fill up your lungs with some oxygen in this world full of air. My mother had very bad chest congestion in the starting of this month and her pleural effusion was not going away. She was admitted in the hospital and 2drains from both of the lungs were there to drain the water. She was in unbearable pain and all her electrolytes went down. She was in no condition to start chemotherapy. Then the doctors made her stable with infusions, antibiotics and removed the water completely and the they took out the drain from both sides. Now she will start chemotherapy from 4th. It took us a bit long to start the treatment as I really wanted her to get into a clinical trial with immunotherapy called 'impassion132' with standard chemo Carbo and Gemzer. Her oncologist really wants her to be in the trial but it's an UK based study and we still don't know if she will get the immunotherapy or not as it has only 50percent chance. We waited for extra 10days to start Treatment so that she can get the immunotherapy and the wait time is so depressing. If she doesn't end up getting the drug but only placebo, it will break my heart again and the wait time was for nothing. But it's ok. As long as we get to start the treatment, I can hope for her to respond fully to the treatment. Worst part, after draining, my mother felt really good for the first few days and then she has this unbearable chest pain, tightness, cough and congestion but there is no more water left. The tumour in the lungs probably are creating the mishaps. She is continuously on morphine, 5mg/ml 4 times a day. It does help with the pain sometimes and knocks her off, making her sleep almost all the day. I am just praying day and night for her to work this Carbo gemzer combo to make everything better. Good part is, she did a pet scan last month, February and did brain, bone, chest, pelvis, neck can separately this month 21st. Her tumours and nodules haven't changed much in size from that time and the cancer is not spread to any other organs other than lungs. Her oncologist was surprised for such an aggressive cancer not to spread or increase in size much in one and a half month. That's why we could held the patience to wait for extra 10days. I wish I could take some of her pain, at least for a night. Sometimes I feel so bad to live my life seeing everyone is fighting so hard. I never will take life for granted. I know the Almighty is there and everywhere and watching over everyone silently and there will always be good in exchange of pain.
Sorry for such a long post. May be I am extra emotional This pregnancy days. But I really love my mom to a point where I see darkness without her and I know it's for everyone. Sorry for whining for so long but I feel kind of relaxed to share my feeling with everyone.
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Minxie, how did it go? How are you feeling?
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Yesterday was a disaster. A friend gave me a Xanax and told me to only take a quarter. I took the whole thing. As soon as I saw the doctor I was a blubbering mess. I was slurring my words from all the Xanax and couldn't stop crying. After that I remember nothing. They were worried about me but I guess I agreed to the chemo infusion because I woke up with a bandage on my arm. I couldn't drive so someone picked me up. I feel like hell today. I have a call in to my psychiatrist. Look s like I need help .
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Well, Minxie, blubbering mess or not, you did it. May the chemo kill those nasty cells. You are wise to be in touch with your psychiatrist. There has to be something better they can do for you. Hang in there. Still thinking of you.
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minxie- You did it. One down. Don’t worry about anything that happened yesterday. Next time will be better. Do whatever you need to do to get through it. Big hugs to you.
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Riley, Hope you are doing well. My mom has severe pain on her chest and shortness of breath. Did you experience any of these? Morphine kind of helps with shortness of breath but it doesn’t go away. Her chemo starting from Monday. She goes out of breathe just walking from one room to another. How long after starting chemo you started feeling better? Did you have any of these symptoms? I am wondering if it’s going to be any better with treatment.
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kaylenne, how are you doing and which chemo are you on right now?
Kaayborg, I are my spirit enhancer. I really hope you get out of this awful experiences and find a good chemo like gem Carbo. How are you doing now?
Hartrish, how are you doing? So happy that your tumour markers going down so quickly.
You all are in my thoughts. Keep posting. Love to read about you all to my mom.
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Sharjin, I am taking the chemo pill Xeloda. How is you mom? Did she get into the trial?
Kay
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sharjin: I am doing fine. Have Gemzar tomorrow and next week April 10th will be mri and ct scan. Will be a stressful week waiting for results to see if chemo working or not. I have asked to meet with radiologists to review mri and ct scans just so I am more knowledgeable about the cancer.
Trying to enjoy each day to the max. Been off the thread some just to refocus some.
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minxie: hope you are feeling better. I am on carbo and Gemzar and have very few side effects. On my 10th cycle. This drug regimen has been good for me. I hope you have few side effects from the drugs.
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kaylynne: how is the xeloda going? When do you get scans or TMs to see effectiveness? I am hoping this drug works well for you.
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Kaayborg: when do you leave on your trip? St Thomas will be warm and beautiful. R u going to do the rads to your spine? I am hoping immun132 gets approved soon so maybe that will be an option for all of us.
Sending prayers and positive thoughts your way.
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Hartrish - I am so glad to hear that the gemcarbo is working for you. We did blood test after the first cycle and markers and liver enzymes were up. I will finish the second cycle Wednesday with blood test on Friday the 13th and consultation on the 16th to see what we do next. I've had the weirdiest side effect with this medicine so I do not have a gut feeling about it.
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Hello all!
My mom was diagnosed with Stage IV Triple Negative Breast Cancer in October 2017. Here is her journey so far...
She was diagnosed with Stage 2A breast cancer in September 2017. She was to have 8 rounds of chemo and then surgery. The day before going in for chemo, they did a scan to measure the size of the breast tumor. During that scan, they noticed a spot on her liver so they cancelled chemo for the next day to discuss the treatment.
One week after learning of the spot on her liver, they did a biopsy of it and confirmed it was cancerous so she was now Stage 2B Breast Cancer. That same week, they did a complete body scan to make sure it hadn't spread anywhere else. They confirmed it hadn't and was just in her breast and liver. They scheduled chemo to target both the breast and liver for the following week.
That following week, they did another scan the day before she was to start chemo, to get the exact size of the tumor and spot so they could compare after the 8 rounds of chemo to make sure they had shrunk. That was a Thursday and she was to start chemo the next day, Friday.
Friday, they called her and said to come up a few hours early for another scan as they think she has spots on her lungs. Keep in mind, the week before, they did the body scan and said she was clear besides her liver and breast. They did the scan around 11 on that Friday and was to start chemo at 1. The dr brought my mom and dad into his office around noon and said 'Patti, everything has changed. You're lungs are filled with cancer and you are now Stage 4. There's nothing we can do for you and you have less than a year to live. We can try the chemo but it's not going to do anything." The doctor got up, shook my dad's hand, and said "I'm sorry, Rich." and walked out of the room.
Within two minutes, two clinical researchers walked into my mom's room, where she was just told she was going to die in less than a year, and wanted her to sign off on them using her body for research and whatnot. Legit, two minutes after getting a death sentence, they wanted her to read these papers and repeat them to the researchers and sign off on her body. Can you imagine that….like are you f'ing kidding me!?!?!?!?!?!?
My sister and I called UW Carbone Cancer Center in Madison, WI and got her in for a second opinion. I happen to know a doctor there so they were able to expedite her appointment. My whole family went to her initial appointment for the second opinion and this was with Dr. Burkard. HE IS INCREDIBLE!!!! He sat down with us for an hour and half and went over everything about breast cancer and how it works, the different types of treatments, the side effects, the successes and fails, everything!
He seemed to be focusing on the treatment of the breast tumor and the liver but didn't really mention the lungs. We were kind of confused so we asked about her lungs and how he was going to treat that. He began to say that he wasn't concerned about her lungs and wasn't quite sure what the clinic that initially diagnosed her was seeing. He pulled up her scans from the clinic that initially diagnosed my mother and showed us her the two small spots on her lungs, that he couldn't be 100% sure were cancerous, and wondered why they told her that her lungs were filled with it. He said that humans are born with spots on their lungs so that's what this could be or it could be scar tissue which humans tend to have. He said he'd never say it spread to her lungs without extensive and invasive testing. He said though, that since it spread to her liver, the spots on her lungs are most likely cancerous but the absolute least of his concerns with her cancer.
She went on to have four rounds of chemo, I can't remember what they were but I will find out. Chemo did what it was supposed to do and 'cleared the lungs, shrunk the spot on the liver, and shrunk the tumor in the breast.'
Since she was doing so well, she participated in a clinical trial where she was taking two forms of chemo in pills; ribociclib and bicalutamid. She was on those for one month, which she started at the end of January 2018. She had a scan just this last week and the trial pills didn't work at all. The spots on her lungs and liver have grown as well as the breast tumor and has spread to her other breast.
Her main onc was out of the country last week when her results came back but she saw another one in the department. The plan is to go back for more chemo but wanted to make sure she saw her main onc which she sees in 2 days to make sure he agrees with that plan. We are terrified for what he will say but very hopefully. We know this is not how it's going to end...this is not her time to go!
It's been one hell of a roller coaster ride but no one is giving up. UGH! I can't even explain what the last 6 months have been like but I'm sure you all have an idea.
Peace, love, strength, healing, and happiness to those fighting cancer and to their family members, their loved ones, their caregivers, and their support groups!
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Hartrish: Many many prayers and good wishes for your coming scan. You will keep getting good results. And enjoy your life to the fullest.
Kaylenne: My mom was on Xeloda for 8cycles and it was easy on her. All the way I have loved Xeloda treatment as it was easiest on my mom. Hope you keep getting the best out of it. Hugs.
My mom is not doing so well. To get into the trial took so long for her, she did not have started a single treatment yet after 2months of finding out this metastatic pleural effusion. We are so frustrated with everything. Yesterday was her long awaited chemo schedule and by the time she got to hospital, she had slight fever with severe breathing shortness. They canceled chemo, got her admitted in the hospital to observe her and check her for infection and did lots of blood test. I will get to know today if she is able to get chemo today. If they tell one more time study wants her to be stable first, I am straight coming out of this and starting chemotherapy without trial. With MPE, prognosis looks so grim. I am so afraid and can’t take anymore to watch her suffer for air like this.
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I too have dr Paula Silverman and love her , I get my chemo on Tuesday at the chagrin highlands
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Hartrish: Many many prayers and good wishes for your coming scan. You will keep getting good results. And enjoy your life to the fullest.
Kaylenne: My mom was on Xeloda for 8cycles and it was easy on her. All the way I have loved Xeloda treatment as it was easiest on my mom. Hope you keep getting the best out of it. Hugs.
My mom is not doing so well. To get into the trial took so long for her, she did not have started a single treatment yet after 2months of finding out this metastatic pleural effusion. We are so frustrated with everything. Yesterday was her long awaited chemo schedule and by the time she got to hospital, she had slight fever with severe breathing shortness. They canceled chemo, got her admitted in the hospital to observe her and check her for infection and did lots of blood test. I will get to know today if she is able to get chemo today. If they tell one more time study wants her to be stable first, I am straight coming out of this and starting chemotherapy without trial. With MPE, prognosis looks so grim. I am so afraid and can't take anymore to watch her suffer for air like this.
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Just out of curiosity, is there anyone who is BRCA1/2 mutation negative and still doing good to the carboplatin, cisplatin therapy in the TNBCmetastatic recurrence?
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sharjin: I did not do a trial because it was going to take to long to clear me and I wanted to start treatment to get control of the cancer. I have diffuse cancer in my liver so did not want to wait. I am hoping once this tx stops working I can get a liver biopsy for some targeted theapy but won’t stay off to long to clear me. Cancer is too aggressive.
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