Triple Negative Stage IV
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Oh Texasrose, I'm so sorry ! I haven't heard much about CMF but here's the thing, if you got to NED once you can get it again ! No new mets is HUGE.
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Texas, I'm so sorry to read of your news. Praying that the CMF will kick the crap out of those nodules and will leave your healthy tissues alone. *big hug*
I am starting Carbo/Gemzar on Wednesday. I have been trying not to read too much about it because I tend to freak myself out. I can't help but see that there are quite a few of us on this treatment. My Onc did mention that the concern will be watching my blood counts. When I did AC/T 7 years ago he had me on Neulasta. I asked him about that again this time and he said we will wait and see if I need it.
Rosie, you mentioned that Day 4 was kicking your butt. Is that usual? I'm hoping that I will be able to work most of the time and then crash on the weekends.
Bless you all and here's wishing everyone a great day.
XOXO
Elaine
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Lainey I hope it isn't too rough. I was on neulasta for AC/T and then again when I was on Taxotere but weekly taxol and abraxane we just kept an eye on my counts and said we would use it we needed to and we didn't. I just made sure on the days where the counts would be low I stayed away from petri dishes (ie public places) and was extra vigilant about keeping my hands clean.
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Hi Lainey, I've just completed my third round of Gem/Carbo and have found it really easy to tolerate. Not muc fatigue and my hair is growing back! I was previously on Abraxane for liver mets which did nothing for me except cause neuropathy which is thankfully now going away. The main issues with gem /carbo are blood counts, they will also keep an eye on your kidney function. My wbc was slightly down after first treatment so onc adjusted the dose slightly. He'd prefer to do that than give injections. You have enough pricks to deal with (his words). Since then I don't even feel like I'm having chemo, just hope it's doing the trick. The gem can also be tough onthe veins and may sting when going in. Ask chemo nurse to put a hot pack on your arm as it's going in. All the best to you,
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Lauralind, Thanks. I am slowly remembering all of the things I learned the last time I did this. Your comment about "petri dishes" brings back a whole bunch of memories.
Isy, thanks for the information. It is very encouraging and I'm going to keep positive thoughts that my experience will be the same as yours. Fortunately they have me fitted with a port so I won't have to worry about the veins in my arms. I only have one good arm (lymphedema in my left) so as much as I dislike it, the port will come in handy.
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Hello. Hopefully I am posting this in the correct forum....TN Stage IV. My first round of treatment didn't work...so I was put on Gemzar/Carbo. After the first 3 months the scan showed I was responding and some of the areas were gone or getting smaller with less uptake. (Yippee) Now, 3 months after that scan, it showed slow progression, nodes are bigger and showing more uptake. I've been through this before with nodes that were "waxing and waning". I know that we are "living with this disease" and rest assured I am grateful for every day, but I feel like I am on an emotional rollercoaster and I am dragging my poor family along for this ride. Part of me wants to just not tell them because I know it hurts them so deeply that they can't fix this for me. I had a pity party for about 3 minutes (with myself), then decided that maybe this is the new normal. Can any of you tell me if this infact is the new normal? Has anyone else had a treatment only work for a short period of time? Has anyone not had Gemzar/Carbo not work? What did they do for you after that? I'm scared as I know this is a good drug regimen and I have tolerated it well...physically well, now my counts are a whole other story...there have been many days I could not get treatment due to counts being off and having to get a transfusion, but I felt fine. I also thought that the fact that I wasn't able to get many of my treatments over the past 3 months could have contributed to "progression", but how scary is that....this disease is that destructive that a few missed treatments could cause such havoc. I don't know what is coming next, what my oncologist will suggest...she didn't even know when I spoke to her today. Any advice would be so appreciated.
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Bosco and Sugarbaby, I love you for sharing about your pity parties. I think we all know it best to think positive, live for today, and take joy from every moment but pity parties are very important, too. There are worse things to happen to a person than what we face but not many. Urghhhh!
Rosieo, I totally believe in water and have heard about the needed water calculated by weight but that is a lot. I say definitely do your 64 oz and after that do the best you can. I have to have a student teacher watch my class mid morning for a potty break just doing my 64oz each day. And, as for your day 4 yuck, I feel a definite day 3 slump. I still work but would rather take the day if I weren't conserving sick days for a rainier future. I just feel very slugglish, like my legs are made of lead and stairs are some kind of mountain instead of just stairs.
Lainey and Sugarbaby, I don't have any terrible side effects other than my slow day 3...and sometimes I just think that's a steroid crash. Some tingling lips, slightly raw feeling, dry mouth (which helps in drinking the water I'm supposed too), and I do have some tinnitus which I had with Taxol too. Had one platelet delay and now do Neulasta. I also have some painful veins that continue to act up post treatments even though I've had a port for a while now. I do wish I had gotten the port from the get-go. I took and antibiotic for the vein pain (phlebitis) and it has helped (no longer need ibuprofen for the flair ups). I don't recommend gem/carbo without a port...I thought I was okay at the time (didn't mind the burning during tx so much) but problems came later and have persisted...didn't know this was a possibility so maybe I'm rare. Not terrible but we don't need more annoyances if they can be avoided.
Sugarbaby, after gem/carbo fails and I hope it doesn't any time soon (I know of 2 people who did multiple years on it), if liver function is still good, I'll do Xeloda. The roller coaster...ohhh, at the moment I think I'm over my worry about what's next, what if...,etc. because all is good at the moment, but one thing even hints at going wrong and I'm sure I'll slip back into pity and fear. I can at least tell you gem/carbo is working well for me now and has since August. Scans in 2-3 weeks.
Take care all! Thinking of you always!
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Oh i have my pity parties as well ! What I saw is, I visit but just dont live there. Trying to find a new normal, whatever that turns out to be, is hard because with us our normal is always changing. I think thats one of things Ive found most difficult.
I was told the next chemo I will be on will be xeloda or halaven. I reached NED (neck down) from the taxanes and so far my scans have stayed NED (5 months). I started a chemo holiday in Sept but as soon as something pops up on a scan I ll go back on one of these. I have scans Dec 7.
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Good morning Ladies.
What kind of scans does your MO schedule you for when checking to see if the chemo is working?
I am having pain in my back (have had it all along but it seems to be getting a little worse) and my MO asked me if I want to get an MRI, a bone scan, and a CT scan. Yes, he asked me :-)
All those tests!!! The radiation alone will be killing us.
Rosieo
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Good luck to all you Gemzar - Carboplatin girls. I started this regimen in 2013 and had great success with it. I originally was on one week on and one week off, but also had to back off several times, to my final regimen of once every 3 weeks. This allowed my platelets to recover (with the help of Neupogen shots about 4 days and 1 day prior to each chemo. I had an allergic reaction to Carboplatin after a year - during infusion, but I didn't want to stop the chemo as it had been easy for me to tolerate and we triple negative girls have a limited number of chemos available to us. I googled this problem and saw that other doctors were using a de-sensitizing procedure to be able to continue using Carboplatin after an allergic reaction. I showed the literature to my Oncologist, and she worked with their Pharmacist to come up with a de-sensitization protocol, and I continued on that for another year. My last chemo was in May. Later in May, I had some very concerning symptoms, and MRI revealed mets to the brain. My chemo was stopped at that time to deal with the brain mets. I had Whole Brain Radiation, and then in August, had Gamma Knife performed on the brain mets. About a week after that, I had my first PET Scan. The benefits of a Pet Scan are that any active cancer lights up like a Christmas Tree. My miraculous news is that nothing lit up in my lungs. A couple of bone mets still lit up, so I had radiation on those. I just had another PET scan earlier this week, and no active cancer is lighting in my lungs still, and the mets they radiated in my bones are showing up as scar tissue now. One of the 2 brain mets is completely gone, and the other one is continuing to shrink away. I am feeling very blessed these days. God is good. I think that they have come a long way with cancer medications and that there is hope.
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Thank you so much for replying. I always know I am not alone in this, but sometimes I am just not bold enough to put these questions out there. I hope this Gem/Carb protocol kicks back in. I was on Tax 6 months ago...had progression, then switched to Gem/Carb and it seemed to work for 3 months, then I had a few times when I couldn't get treatment, or could only get partial treatment due to blood counts (but I felt great)...then had a transfusion...again, I felt great...they kept saying "we don't even know how you are standing up right now as your counts are so bad". My PET scan yesterday revealed slow progression again....you know the feeling, your phone rings at 5:35 pm and you look and see it's your onc and your heart sinks and your stomach turns. I've been on this particular roller coaster for over 3 years, every 3 months, good scan, then not so good, then good, then not, so on and so on. I am a person of consistency and control (yes, I am a control freak on every aspect) so as you can imagine this makes me nuts. I'm sure in that I am not alone. I am fortunate to have a wonderful family and four amazing, young children, but it breaks my heart to have to tell them when news isn't good. I always say "it could be worse, don't worry, I'm strong" then I hang up the phone and cry not knowing what I will have to tell them next. I put myself in my parents shoes, my oldest brother had cancer many years ago (he is fine now) and then there's me, will I ever be able to honestly tell them I am fine? Why do they have to go through this again? I can't imagine the pain you must have when your child calls and tells you they have cancer, let alone TN Stage IV. OK, OK....sorry got off on a rant there. ....
At any rate, I am hoping that if I can get more consecutive treatments without breaks I can continue on this regimen. My onc did mention she is going to see if these areas can be radiated...does anyone know about that? She said it's every day, but didn't seem to know the duration. My oncs office is over an hour away, so not exactly the most convenient, but I'd give anything to get these nodes clear. I have never been NED. I pray to someday be there with you! These nodes have waxed and waned for years.
Kaayborg....funny (or not so funny story about phlebitis). I was playing with a hoola hoop with my kids and swung it around my arm...the next day my arm swelled up like a balloon full of huge marbles. I called my onc and they thought I had lost my mind, so I called a national cancer institute and they said "sounds like phlebitis, take some ibuprophen", but it took almost 2 months to go down. No more hoola hooping on my arms. I ended up with a port before my 3rd treatment. At my second they tried to do an IV for 7 pokes, that pretty much did me in, then the burning sensation up my arm was enough. I set up the port as soon as possible.
Rosieo my onc currently has me getting PET/CT scans every 3 months. It is very controversial, but from what I read pretty normal. My previous onc didn't do any, nor blood work which was not to my benefit as it was only by luck during a fertilty examination (we were transferring embryos) that we found out I had met bc to an ovary. Characteristics were completely opposite of my original dx. Lots of losses all the way around.
I am so, so grateful for your replies.
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Thanks for your posts ladies. This is a great conversation here. So many things to say...
Rosio - My onc does CT of the abdomen, chest and pelvis every 3 cycles, which is 9 weeks (shorter than the 3 month schedule, maybe b/c my liver mets are large and extensive???). I only have liver mets. Is that the same for you? I don't know if this matters is what kind of scans are best. I did have a bone scan when the liver mets were first found based on my back pain and a brain MRI b/c of migraines but they were clean.
Surfdreams - Were you really stage IV triple neg. in 2009? And you are still doing so well?! Either way, I'm adding you to my list of stories of hope. Loving all those years!!!! May you have many, many more!!!! Also, thanks for sharing about the desensitizing. It was just mentioned to me today that after 6 cycles allergic reactions can occur b/c of build up. If this happens with me, I'll be sure to get that literature from you if unknown to my doctor as well.
Sugarbaby - We are much alike in the control freak area. Guess you're my phlebitis twink, too. My fourth treatment, 6 pokes, and extra burning and I rushed for my port as well. I would have gladly gotten a port sooner but there was no reason to, known to me anyway. I figured why add more foreign material to my chest before necessary. I am glad to know in 2 months phlebitis may be history. Also, glad to know about calling the National Cancer Institute when needed. Hula hoops...ouch! My purse strap sometimes falls off my shoulder and...Wow! And, you are also a story of hope to me...3 years and many more...rollercoaster or not.
Now a few more questions for you Sugarbaby, about your young children. I have 3 aged 12, 9 and 6. When I was stage 1A, I told them about cancer, about treatment I might need, about how things looked very good, how cancer doesn't mean you're going to die, about how I would always be honest with them so they didn't need to worry that I wasn't okay but just not telling them. And now stage 4...they know I have cancer again, they know it is more serious and so I will never stop having treatment. I have not brought up the "D" word. I have not gotten bad news from scans yet...only potentially bad news that I privately freak out about. My husband and I had decided we would tell more about how things were going to keep converstaion open after our youngest revealed in a conversation that she didn't think she was supposed to talk about my cancer (ouch!). I started a thread asking others what they tell their children. All posters seemed to keep bad news to themselves. I do get that. I don't want them to feel my worry or worse worry as they are children and not adults but I also don' t want them to feel shut out or wish they were told sooner. So I'm still on the fence. Would love your perspective. What do your kids know? How do you stay honest but not alarming? Have you bridged the topic of death? I worry that they know and fear it but keep fears to themselves because I'm not talking about it. No actual signs of this except perhaps from my youngest. My aunt died last year. Same trip. neg. cancer in a year's time. I honestly cannot remember what they knew about her similarity to me but they know she had breast cancer and died. This occurred before I was stage 4. My oldest asked about her once and I explained about stage differences and how were in different situations. Has she figured out that has changed? I don't know. Heavy I know but...what to do?
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Hi Ladies, I'm also on CT scans after every three treatments, though I've just started on the stage 4 treadmill so don't know if this will keep going. Both times my onc has left the final decision up to me, always says we can wait another cycle if you wish. Surfdreams was also really happy to hear about your success with Gem/Carbo combo. I'm feeling really good on it so far and feel I could stay on it indefinitely if need be.
Telling kids is such a hard one. I want our household to be as normal as possible, I don't want doom and gloom to pervade especially while I still feel so well. We've decided to take each day as it comes and just be there to answer any questions as they come up. I've got two teenage boys who both find it hard to do deep and meaningfuls especially with their mum, they both find it a bit awkward to talk about and I don't want to pressure them. Be really glad to hear others perspective on this and the gender debate. I do think it's different for girls..
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kaayborg - I seem to be on the 2 year plan. Every two years, something changes with my cancer. I was stage 2 in 2009, but went to stage 4 in 2011. Started Abraxane at that time, and it kept me stable till 2013, when I started the Gemzar/Carbo for bone mets. 2 years later - this year in May, had brain mets which required whole brain radiation and gamma knife. Chemo isn't very effective for brain mets due to the blood brain barrier, so surgery or rads are the options. now that my brain treatment is done, my oncologist would like to err on the side of caution and talk me into restarting the Gemxar/Carbo, but as long as nothing is lighting up on my PET scan, I am ready to let it ride till something lights up again. I feel great (knocking on wood here), and will restart chemo when things start going south again, but so far, I'm enjoying this big chemo holiday. I'm hoping to get at least 2 years out of it! The desensitization protocol involves infusion over a long period of time. My day with that consisted of being the first patient of the day, and the last to leave. I would first get IV steroids and ant-nausea meds and IV benadryl. Then the Gemzar was administered as normal. Then the Carboplatin was started as a very slow drip. Through the course of the day, it would slowly be sped up, but still administered slower than usual. The total day's infusion would take about 9 hours.
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Sugarbaby...I had a short dance with NED while on Taxol. It lasted only between scans (8 weeks). I am now moving on to another chemo "CMF". I will start that this Friday. Hoping it keeps me stable but would love another dance!
Rosieo....my scans are typically CT. I do have a PET scheduled for today but only because we see a little progression and my TM's are up. My CT scans had been every 8 weeks but will move to every 12 weeks with the new chemo.
Pitty Parties....boy do I know about pitty parties. It seems last week I was having one every hour, definitely not typical for me! And they came out of nowhere! Last for a few minutes and then gone! It felt like I was pregnant again with the everything made me cry...and I am definitely not pregnant!!!!
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Surfdreams Im like you, Im on a chemo holiday until/if something shows up. I had a brains mets last Dec, I had a craniotomy to remove it and then cyberknife radiation. I had 2 little spots show up on my MRI in October and had CKS again just one treatment. My neck down scan remained NED. I have scans again Dec 7. As I am JUST NOW starting to feel somewhat better, I'd love to stay NED and OFF chemo for as long as possible. My rad onc said we can keep doing the CKS as long as they didn't get big or have too many, but said we would keep a close watch on it. So for now Im having a brain MRI every 2 months.
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hi everybody. I have been on xeloda til today 6 rounds. Today oncologist has decided to give me 3 month chemo break because of side effects but am worried because of lymph node in neck Tumour markers stable. Barbar
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Hey Ladies....had a PET scan done yesterday. Results came in today....and we have some progression in lungs. Two new mets showed up measuring 7 mm. Starting new chemo tomorrow. Hoping it will keep me stable.
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Texasrose - I am praying for your chemo today. Let it work long and well with easy side effects. May you find peace in the terrible times of waiting.
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Texas Rose
My thoughts and prayers are with you. Let this chemo help you back to NED
Rosieo
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Thank you Kaayborg and Rosieo!!
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ladies I admire your strength , courage and resolve .
As a physician myself , I am trying my best to help by wife combat this disease that indiscriminately attacks and disrupts lives .
I read your posts with awe !
As we are pursing the clinical trial route with the pdl1 in Atlanta, and I wonder if any of you have had experience with immunotherapy ?
Thanks in advance
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I'm sorry it has taken me some time to get back to you about what I have told my children. I can not give you advice because every child and every family is different I think you really need to gage your children, but I can certainly tell you what has worked (at least I think for now) for us. Our children are young 6,8,10,12 and I believe some of them could probably process things better than others, but the truth is I don't talk to them about the "d" word…I talk to them about living. I talk to them about hope and believing in ourselves, our faith and treatments to come. I don't want to burden them with the "what ifs" before need be. Maybe that is not what would work for you, but I don't think anything I have said to them is dishonest. Being a control freak, this works well…I can control if and when that conversation happens and what the content will be. Now, if they asked me directly, I would have to be as honest as their emotions can comprehend. In our case, my children have gone through the first time with us, losses of embryos, postponed adoptions, more cancer, it has been a never ending rollercoaster, so for now, I can get my treatments, keep it somewhat under control (though I wish that were better), make them meals, treat them well and love them to the moon and back……that's what I will do and that is what they need to know. Regardless of everything, I love them and they need to have faith beyond measure. I hope this helps. I know someone wrote this above about pity parties….go there to visit, just don't live there….that's how I feel about the "d" word. I can stress myself out about it, but not for long.
On a separate note, I think I will post this elsewhere under a different topic possibly, but I wanted to ask you all a couple things. I had my treatments yesterday, and my oncologist discussed a couple things with me as the last Pet said "slow progression" . In the past when I have had nodes waxing and waning, it was a problem with the characteristics with the "c", so I was asking her about getting a biopsy. She mentioned to me that once you are dx with Triple Negative, the characteristics never change, they can never go back to positive. Have you ever heard of that? Also she mentioned radiation…has anyone ever had radiation on nodes and how long does it last? She also mentioned about rather than getting Gem/Carb on day 1 and Gem alone on day 8, she is considering giving me gem/carb day 1 (a split dose) and the same gem/carb on day 8…..she thinks this might help with my counts…even my neutrophil count was only 1.0 barely made it yesterday as that is the cut off for treatment. Argh!!!
Just curious to see if anyone has any suggestions.
Many thanks.
PS, Texasrose53. Having just received a not great scan myself, I know your frustration. I wish you great success with your new chemo.
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Sugarbaby, thanks for your reply. I like knowing we have children the same age. I have some more specific questions for you but no time to word that out right now. I did want to say right away that trip negatives not changing to positives is absolutely false. My doctor gave me a very specific stat that trip-neg turns HER+ about 30% of the time. This is one of the things we hoped would have happened for me to open more treatment doors and why it is our plan to biopsy again when chemos stop working (it can change at any time in the journey). I don't know about changing to hormone positives but for some reason I think I am remembering a post from someone where that had occurred. My doctor did not mention that though so I'm thinking maybe not something that occurs, or not very often, or she would have mentioned it as well. As for the gem/carbo schedule, it can be done that way. I get gem and carbo on day 1 and 8, though I'm not aware of it helping with counts one way or another.
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kaayborg
I really hate to be so stupid but you said you are planning to biopsy again when chemo stops working.
What are you going to biopsy.?
Rosieo
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Rosieo, you make me laugh. Aren't we all just learning more than we ever wanted to know about cancer? They will biopsy one of my liver tumors. This was done initially to make sure it was indeed breast cancer and not a primary liver cancer. Then, my biopsy sample was sent to Foundation Medicine for genetic profiling. It's tested for hundreds of things but mine only hit three, one that confirms why gem/carbo works so well, one that doesn't point to any known helpful treatments, and one for some drug that is only standard treatment for hormone positive cancers but I might be able to get as part of a trial or with some begging at the feet of my insurance company (apparently my young age can help in the begging). The biopsy can be done again later to check for changes in the tumor make-up that might point to more targeted treatment options. The James Research Hospital (at Ohio State University) where I am being treated also has its own genomic testing platform that might find something different for trial matching.
On a different note, I think I have recalled the gal I thought I remembered whose tumors changed from trip-neg to hormone positive and I got it backward. She was hormone positive and morphed to trip-neg. Not the cool direction.
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kaayborg, for your information, my BC hormone receptors status changed from negative (at the diagnosis of BC in 2002) to Er/Pr+ while HER2 remains negative at the diagnosis of MBC this year.
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Thanks Xavo. That's interesting. And to Rosieo and Sugarbaby, here's an article that explains it all. http://www.breastcancer.org/research-news/20120620
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Thank you Sugarbaby! Your question about the biopsy....I had a biopsy when diagnosed as stage 4, my ONC said that there is a possibility that the new tumor was not triple negative.
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Texasrose what chemo are you starting and when? I hope it gets you back to stable and then NED !
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