Triple Negative Stage IV
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Phgrahm- Welcome. Thank you for posting here. I hope you will post more.
Hello ladies! I have been away for a little while....The hospital social worker has put a stage II gal in touch with me. I called and she didn't seem very interested in talking and I didn't want to throw myself at her. She said she is just worried about going through chemo (red devil?), surgery, radiation and having it come back. I didn't want to rain on her so I recommend this sight and perhaps another stage II can help her. I just remember meeting with the surgeon when first diagnosed before they did the staging PET...He said "you won't die from this it is curable...you have an agressive form but we will treat it aggressively. ..this will be a tough year but you will live." I just feel bad the more I research the more it is clear thar triple negative comes back. Furthermore, it seems that cancer in general is not curable because people go a few years evenany years in some cases and it comes back. GRRRR.
Any who...My daughter who is six started first grade this week and she asked her daddy to take off her training wheels...BIG WEEK! Going to an all day concert tomorrow woo hoo!!!
Have a great weekend ladies!
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Hi Clinus, I have mets to my lungs, sternum and a couple nodes. I was started on Taxol when diagnosed Stage IV May 2015. But it stopped working last year in October so we moved to CMF. I have been on it nearly 10 months and have been stable. My tumor markers have also been stable. When this chemo stops being effective (which we know someday it will stop) and then we will move on to the next. I still feel l as good as I did 16 months ago. In fact I just returned from a 6 day road trip from Texas to Minnesota and back with my sister to visit relatives and my dads grave. My sister suffers from manic depression and had a really bad day on the day we started back for Texas so I drove the entire first day from Minneapolis to Oklahoma City. I guess my message is keep as positive an attitude as you can and live life!
Hey Phyllis, welcome to the group!😊 What will they be operating on?
Hey Donna, I know what you mean! Every time I get my blood drawn I worry the counts will be too low for chemo. I have been blessed so far and had some close calls...it is just as important that our counts are good. Hang in there!!
Julie
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Some members in another Stage IV forum recommended I come here. So, hello.
Just recovering from SEs of Gemzar carbo + Granix this week....screaming headache most of the day, nausea. Took zofran which makes the headache worse and does the job for the nausea. Ingested a bit of CBD - cannabis - and hope that will lull me to sleep. I'm usually pretty perky. Today I am not
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Hi Satti, welcome to this board!! So sorry for the headaches, hope they get better.
Quick question....were you diagnosed stage IV in 2012 or 2016? Your profile shows both years.
Julie
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Welcome to both Satti and Phlyllis! Satti, I was on gemzar and carbo as well but now do just carbo as my platelets were struggling. I do Neulasta and Neupogen for whites. Never heard of Granix. Had to look it up but I see it is like Neulasta. I did have headaches for a while but they were never too severe. I used to think it was due to the Neulasta but could never be sure. I do hope you feel better soon.
Steph, I hope your daughter is loving first grade. I hang out with first graders all day long. They are a funny crew. I was just a little tired after the first week. Hopefully I'll adjust to match their energy. Of course, I did have to start back with them on my 2 down feeling days post chemo. The first day they had me on steroids though so I was full of life!
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It's Sunday - We got up early to do blood tests at the hospital (so much better when I can do them locally the day before) - My WBCs are not high but would have passed but my NEUTRO abs is low (what is that? Is there a way to bring it up with food or vitamins? the doctor is against those shots) - So I'll try again on Wednesday (pushing chemo off a whole week). She wants to lower the Gemzar dose a little more to try to find the spot where I can get the strongest dose possible while allowing my Cells to rebuild on time for next chemo each week. It's such a pain to spend half the day at the hospital and leave with nothing (no treatment).
I surprised the doctor when she checked me when I showed her the picture I had taken of the breast two weeks ago, but I really always wonder if she can really describe so accurately. I just want to see a drop of improvement. My husband was kind of laughing listening to the two of us trying to convince each other that there's improvement (I've only had 2 treatments of the Gemzar-Cisplane since the Adriamycine did nothing for me). I do think that the aggresiveness slowed down. The Dr said - It's not all red and angry like it was before. We're assuming if the part that we see is more controlled, the part we don't see (in the lungs) is also calmed. I don't know why I'm being so positive. I guess I'm still in denial. That's why I don't tell anyone that I have cancer and the few who know, don't know that it's more serious
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I'm here! Anyone else
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Hi everyone. Welcome satti!
Texasrose, they will be doing a a sternectomy. They think they may need to remove only half of my sternum though. They will also remove the abdominal node.
Just as an aside, I used to visit my mom when she lived in Glen Rose (years ago). I liked it there.
Phyllis
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Hey Phyllis...small world! We love Glen Rose. My husband and I both retired recently from the Nuclear Plant in Glen Rose after more than 30 years. Only lived in Glen Rose for 16 of those when we built our dream home in the country. I travel to Ft Worth for my treatments and to see my Oncologist.
Welcome Ida!
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Hi everybody. I have just had pleural effusion removed which went well and was feeling ok until the oncology nurse came along and was supposed to be talking to me about my new chemo Eribulin. Instead of that she started talking about what do you want to do if this drug doesn't work and we can't give you any more? I felt dreadful. These are the drugs I have had: docetaxol, xeloda, paclitaxel and soon to start Eribulin. Surely there are others aren't there. I don't feel ready to die yet. Barb
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Barb- What s wrong with that nurse? There are plenty of other drugs that you haven't tried - CMF, Adriamycin, Gemzar, Carboplatin, Cisplane... Those are ones I took/take or read here. I always make a list of what people are being treated with here. I take the list to my onc (like she doesn't know - lol). You should report this nurse. She doesn't belong in an oncology ward.
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Thanks. My husband has complained and asked for her to be taken off my case. She made me feel so bad. Barb
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Barb - I am so sorry for your experience. I recently read an awful post by a stage 0 TNBC and it bounced me right out of denial land (where I live happily) and into a horrible state, I understand. I hope you still feel comfortable going there but always remember that you are interviewing your care team and if one doesn't work there are others. I am so glad you have a husband who will not stand for this. They are coming up with new things all the time, just hold on! Upon reading that horrible post I requested the MBC guide from Bestbird and began to read, all the information in there made me feel a little better knowing that smarter people than me are working on this and now I am back in denial land, come and visit the water is warm!!! I recommend the MBC guide that Bestbird has put together because it is just so full of information and knowledge is power! Let us know how it goes!
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Yes, Barb. That is terrible. What was she thinking and how is she not better informed?
Donna, you've got me making a list now too. And then, I found myself Googling paclitaxel b/c if I forgot if it was Taxol or Abraxane and it's both? But Abraxane and Taxol are different name brands? I am confused. Anybody got this? I hated Taxol (couldn't stand or walk for more than 10 min.) but am planning on Abraxane next if the trial works out. Just wondering...okay worrying that big hopes for what's next will end up dissolving fast.
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kaayborg- is your current treatment still working? Are you just planning the next step ( I know you said you like to do that)!? I saw on another thread that you were training for a big run, how's that going? I hope you have a good class this year so far. My oldest just started 1st grade after going to a Montessori school for the past three years. She is frustrated that she has to write letters...she has been a proficient reader since four. I think she is just sad she hasn't really made a best friend yet...ah first grade woes! I hope they get on this TN things so I can live to see her graduate college!!!!!
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Still doing well and just planning the next step. Scans are this Wed. I'm not much worried about them as my onc had suggested waiting longer than 3 mos between scans given I'm feeling so well. I still wanted the scans for the reassurance, however.
I'm not actually training for anything, just running for health. My onc suggested in the spring that I do aerobic exercise as it may improve results so I tried running. I like it and am surprised that I do. I always said I hated running (bad experience in a college class) but starting very slow and adding a minute at a time really makes the difference. Not sure what I'm going to do in the winter though.
First grade is a big year. It always takes the kids a while to adjust to new expectations. And yes, first grade woes I well know. Looking forward to three days rest as those kiddos wore me out this week.
Let us live to see those college days!
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Does anyone have mets to lungs? I know I do cause they found them on the PET and then a biopsy showed that they're also TN, but I felt fine. Now suddenly I'm coughing and coughing. What does this mean? It's like I suddenly got bad cold. Coughing, my throat hurts. How will my body fight this with chemo? Will this be pneumonia? I've been in denial and now I feel that I better tell people so they're not shocked. Please give me good news from your experiences.
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Hey Donna, I have mets to my lungs. Largest is 1.5 cm...other 3 are .8 mm or smaller. I haven't experienced any coughing yet...after 16 months. Your coughing could be due to something other than cancer, maybe allergies or sinus. With chemo the immune system is weakened. Talk to your ONC about it. Several months ago suddenly it hurt every time I took a a deep breath...after a couple days it went away, the next time I saw my ONC I mentioned it to her...she responded with, remember not all aches and pains are from your cancer. Some are just normal everyday body changes. I guess for some reason I thought everything was because of my cancer. I forgot that I can have issues just like all the non cancer people in the world. I quit worrying that everything that ailed me is due to cancer. I do mention any changes to her but I don't dwell on it. It makes life more enjoyable.
Hope all you lovely ladies have a good holiday weekend!
Julie
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I spoke to my onc. she said I should give it a few days to see if it's just a cold. I'm drinking tons since that's my usual remedy for colds. Wednesday is my next chemo (I doubt my WBCs will be up anyway). she said not to do the chemo if I have this cold. I guess I'll go see her then.
Can we talk about telling people? do you tell everyone that you have cancer? Do you tell them that it's not a simple case? So few people know that i have cancer, and the few that know don't know that it's metastacized. People know too much about breast cancer and will dig for answers. I feel like my illness will ruin so many lives.
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donna- I can understand your reluctance to tell others. I was amazed by the support my family and I have received since telling. It is clear that not everyone understands what this means sinve they say things like "you're strong you will beat this." I just say that I am going to do my best...my close friends understand as they have gone to appts with me. We have received one meal a week since I let others know in May and have had three benefits since then. The support has been humbling and amazing. I credit my last scan to the kindness I have received. Don't under estimate the power of support! I can't imagine how hard it has been for you to keep this all inside...whatever and however you choose to share know you are not alone, we understand and are here for you!
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hey Donna...glad you talked to you ONC about the coughing. All of my family and closest friends know that I am stage IV. Some of my former co-workers (I recently retired) also knew. I don't post my diagnosis or treatments on social media....but i do tell people if they ask. The support is good. Of course you will have those fools that try and tell you that lemons or some other item will cure you. Most don't know what to say. I don't want people showing me sympathy so when I leave the house I always wear my wig. When my eyelashes fell out with Taxol I wore false ones. I have been stage IV for 16 months and most of my close friends tell me how they forget I have cancer because I don't look or act any different than I did when diagnosed.
Juli
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My preference is to just tell everyone I know. Except with immediate family, I communicated the info via email. I preferred that everyone knew at once to save having to tell people over and over. I update via posthope.org (like caringbridge but with password protection). The only people who don't know are the children in my life, including my students (that is they don't know the prognosis, they do know I have cancer and always will). I also do not give parents of my students access to posthope. The population I work with does not have the best discretion when it comes to what they share with their children so I ultimately don't trust them with the information. I even emailed the entire school staff to let them know what day I was walking in without my hair and told them how to act (say hi and pretend nothing happened).
The only thing I have some trouble with now is what to do with new people I meet. We moved last year mid-June and in July I got my mets dx. None of our neighbors know because when exactly do I bring it up? Families of my girls' new friends don't know either. When you first meet someone it's a bit much to drop in the first few conversations. Plus it hides so well now.
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I am terrible about telling. There are major people that still don't know. we have't told my husband's brother and wife, nor my inlaws. We live in different countries. We have a close family but it's easy to skip talking about things on the phone. They're the type who will have endless questions and I'm afraid they'll drive my husband crazy with questions and advice. I would like to tell my nieces already but I have to tell my inlaws first. Once I tell my nieces the info will very quickly spread in the community.
As a start, I finally got caller-Id on my phone (we just never bothered with it before). So now I can be prepared for the caller. I really don't want to discuss treatments or anything else with anyone. I will start slowly. (I still think if I don't say it, it will go away)
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Hi Donna
I think whatever feels right to you is right. You can get into awkward situations though as happened to me at my daughter's swimming party when one mother of a friend of one of my daughters started talking to a mother of a friend of my other daughter and one knew about this and one didn't. It hadn't been deliberate on my part it was just one is a parent who knows everything that's going on and had found out.
Anyway do what's right for you. We are all different. Love Barb
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It's wrong what I'm doing. I'm lying to everyone. I don't think I'm going to beat those horrible odds that we're ignoring. CMF didn't work for me. Adriamycine didn't either and I don't think the Gemzar-Cisplane is either. Too many people who love me have a right to know. They need to pray for me as much as they can. Last year's first run with cancer can be a secret but now things are different. I don't feel well and I don't think I can keep faking. My kids are 15-28. They have to be prepared. Not lied to. Maybe I belong on a different forum, but you are my friends. Tomorrow I'm supposed to go for chemo (WBC's are up
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Follow-up a few hours later. I ate supper and now I feel better. I have more strength to keep fighting. Tomorrow I'm going to try to see my onco before the chemo. But I do think that I have to start telling people something
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Donna, the ups and downs on this ride are nuts! You have every right to take your time in telling those you love. We each need to share with others in different ways and at different times. I hope you hear good news about treatment soon. And you belong right here...don't go. I count you as friend, too. We all need each other on days when we feel great and days when we don't.
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hi everyone:
Donna, I still remember 15 years ago when my close friend called me to tell me about her cancer recurrence.she was apologizing for telling a mutual acquaintance while standing shellshocked in the hospital parking lot before she told me. She was trying to prevent me from hearing secondhand about her health. We laughed but when my cancer came back I similarly fell to bits. Itold some and not others. Just do what feels right . I've usually also expressed how awkward/painful/tentative etc I've felt. The ones who were hurt did so because they had wanted to help from the start- no issue once they understood how we were still trying to cope. I recently spoke with my dad about hiw our telephone calls were becoming trite as I was only telling good news.. We keep learning..
BarbDenise, I had a consult with an anesthesiologist for a surgery, and he asked me "why not let nature take its course if I had stage 4 and stop everything"?!?? He was disciplined by the hospital.
I have neck lymph node Mets and mets on/in my lungs (& elsewhere), and no one is certain what explains my cough- strctural blockage on my airway, vocal chords being pressed, fluid/mets in lungs - or a combination- but codeine pills control it.
I do know there are many options for chemo - I too love having my list. I got it after my (somewhat yucky) ONC made a point of stressing how I needed already 3 recipes in 12 months in terms of hope for the future.
My clinical trial failed for me after 4 weeks: a liver met went from 3.5cm to 8.3cm. Starting now CMF. Here's hoping!
Good wishes everyone.
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I haven't posted in a while... I've felt paralyzed for about two weeks anticipating my 8week scan, couldn't stop thinking about it and couldn't face logging in here. These crazy mind games are worse than the chemo. I had a ct Friday and now paralyzed waiting for results.
I'd hoped to have an appointment with a second opinion doc by now, but got overwhelmed by the search. Anyone have recommendations on the west coast? Are there mos that specialize in triple negative
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Hi Josie, CMF has been good to me. Praying it will be the same for you!
Julie
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