Triple Negative Stage IV
Comments
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Thanks for posting so much information! Lots of things going on with everyone and it sounds like there are many options depending on where the mets are and what has already been covered as far as surgery and chemo.
I have seen a couple of references to superficial bone mets....are there different types? I am having my first CT guided bone biopsy tomorrow to look at my femur where they are 99% sure I have bone mets.
Did many of you seek a 2nd opinion even if you like your oncologist? I am told mine is one of the best in the Dallas area but I can go to MD Anderson for a 2nd opinion if I want but they don't think I will get any different outcome right now, even my breast surgeon said she didn't feel I would get a different outcome. What have you all experienced in this area?
Xeloda doesn't seem to like me - I took 12 of 14 days for my first round and had to stop because of hand, foot and mouth but the issues were on my feet and hands, thankfully not my mouth and this round they put me on 10 days with 8 pills a day vs. the 10 pills and now I am having issues on my hands and feet after 8 days. I hope there is another option or maybe my body will adjust on the next round....I have no idea how many times they will try before they change to something else.
As for working, I am working full-time and haven't stopped but I do have the ability to work from home when needed and have found myself working from bed when I just can't seem to get moving forward some days.
And finally, I have lost my hair for the 2nd time due to the Taxotere but if the chemo is working I will deal with it, though bummed because it was just starting to get long enough to style from the last round.
Thanks for listening and your input!
Sherri0 -
Hey Sherri - Second opinions don't hurt. When I got dx with the metastatic bc I has three and believe it or not the worse treatment and response was from Memorial Sloan Kettering, the leader in Cancer treatment here in New York. Montefiore was a blessing. My onc. had a plan, told me exactly what I had and that I was misdiagnosed with ER+ when I had TNBC all along and we all believe it was metastatic from he beginning, Cornell just didn't dx that way. So second opinions are okay.
I have bone mets the report said superficial. I see my onc about it tomorrow but I believe that they are not large or embedded deep in the bone. At least that's what I believe but I will find out more tomorrow.
My onc is planning to give me Xgeva. She says its a shot that I will get every 28 days. Look it up and question your onc about it.
I lost my hair too and it had grown back so nicely. But you know that is secondary to everything else we are going through even though it depressed me and sometimes still does.
I think is great that you have the option to work from home. My office manager says that she can work that out for me, but I don't really think so. It takes a lot out of me travelling to work but its something I have to do until there is a better way.
But we are here for you to console or answer questions.0 -
I never got a second opinion. I started with my mo 6 years ago and have been with him ever since. He is head of the oncology dept. at the cancer center in the big hospital in our area, so that made me feel better about my choice. Carloben, I hope you got home safe and everything is getting better for you pain wise. Had a little scare last night, found another swollen lymph node in my neck, called mo, they said to watch it, it could just be swollen for some reason, but to call back in a couple days. If its not 1 thing its another, right?0 -
Mary, I hope your swollen lymph node fixes itself! Sometimes that happens, right?
Today I have a little bit of good news: NOT ENOUGH TO DRAIN! It's been 5 days and I have less than half a liter in my pleural cavity. Something is working. I am cautiously optimistic.
Hugs to all,
Brenda0 -
back home and on the mend. Still using pain meds, but much less. Seeing my physio tomorrow. Mary, I hope that lymph node settles down and is friendly!. You are right about it being 1 thing or another!
Got a lot of catching up to do on this thread. CT scan of lungs in 3 weeks time. The moment of truth!?0 -
Mary - keep in mind, you are in charge. If you need a chemo break, tell them when you will be taking it. With our freakishly aggressive cancer, it's all a shot in the dark. Your quality of life is important. I'd ask why your MO doesn't' t want to give you the Ritalin. If it's due to some interaction, I can understand, but I've had a script for it every time I'm in treatment. I don't take it often, just for long event days, that I want to participate in, and otherwise couldn't. Wishing you better days ahead!
Kathy - so sorry to hear that your mom has been poorly. I hope she is on the mend.
Carolben - how are you love? Thinking of you and wishing you well.
This weekend our little town had it's annual festival. Busy time with guests and so proud of my 14 year old who is in the marching band. About 25 people on the porch having dinner as we watched the fireworks over the river. It's Times like this, when you are following a yearly tradition, that I wonder, will I be here next year?0 -
I so know what you mean about traditions, I often wonder about those things, and then it makes me sad, so I try not to dwell...I have a friend coming in March from these boards and we're trying to plan...who the h knows how to plan ahead???0 -
Karen,
You mentioned that you have progression of liver tumors. What are your symptoms? Are you in any pain?
I was just thinking of you.
Hugs,
Brenda S.0 -
Had a great session with my physio this morning - feel a bit more stretched out and able to move. Am much better, but have been sleeping a lot. Not sure if that's catching up on missed sleep or escaping in to sleep a bit? I get nervous when I want to sleep so much, it happens when I get depressed. I've been put on a stronger dose of anti depressants, maybe that's what it is.
It's hard to plan, you're right Mary & OBXK, in terms of years that's the hardest. And I'm tired of people telling me that they are just as likely as I to drop dead in the next few years. That we all only have right now, but we have kinda been given a death sentence, a very real one, and they haven't. Then I think well, they do have a point though. No one knows how long they'll be here; we have just been forced to look that right in the eye! I know with Christmas coming up, and the whole family will be together in Jhb again (sister from La Jolla, and my son!!) and there will be a moment when I wonder if I'll be here for the next one. It happens on birthdays too, and it's hard to look at that, I just feel so sad at those times, as you say Mary, and we can't dwell!
Then we need to plan stuff around chemo too - grab the breaks if and when we can.
I've had periods during the last month where I haven't thought about chemo - I've thought about cancer - but not about the coming chemo. And it's been really, really nice. Really nice. I have been on a chemo vacation for the last 2 months, and even though this whole trapped nerve in my back thing took me down, I'm further away from the last chemo and feel better for it. It's been good to have a break. Now I'll be very interested to see what those little nodules did with no treatment.
Hope this will be a good / better week for all0 -
I went to see the PA who does my thoracentesis today. I have more good news: Not enough fluid to drain, and even less than the last time she looked, which was around 7 days ago. The last time I was drained was Oct. 4. Something is working. Thanks for all your good vibes.
Hugs,
Brenda0 -
Adnerb, great news! What treatments are you doing now?0 -
Stride,
I'm doing carboplatin every 4 weeks and gemzar every week (3 weeks on, 1 week off). Hope it is working for you as well!
Brenda0 -
I am getting a little nervous. I am having pain in my liver and spleen area. I don't want to eat because it makes me feel bad - more abdominal pain and nausea. Even very loose pants hurt. I am drinking Ensure , but I am losing weight and muscle tone. I feel like my life force is leaving me.
I hope they get my CT scheduled this week.0 -
Karen, I'm sending you hugs and I hope you get your strength back somehow. You have always struck me as a strong, vibrant woman. We need that woman back!!!
Love,
Brenda0 -
Oh Karen Im so sorry. Sending you hugs and prayers...0 -
Karen, do you have any anti-nausea drugs? There are several kinds out there, if one does not work another might.
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Kren, I'm sending gentle hugs your way...0 -
Thanks for your love, concern and support. It means the world to me. As many of you may have experienced, stage 4, can be an isolating place. I am now staying on a continuous schedule of Vicodin, it seems to be helping with the abdominal pain.
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Its kind of a depressing time for many of us, I think. Yesterday I got my handicap parking pass, and the wheel chair goes everywhere with us now, not that I use it that much but its there if I need it. I feel like an 85 year old woman most of the time. Karen Im glad the vicodin helps, Im on Oxy 4 times a day for the chest wall and lymph nodes. Liver is not painful right now. I just hope I feel well for the next 3 weeks, ds wedding is on Nov. 9th.0 -
Hugs to both of you, Karen and Mary.
Brenda0 -
Dang, Karen, hang in there, you've been a source of inspiration to me. Hope you'll get your ct scan done soon, the not knowing is worse than knowing, I think.
Great news, Adnerb, sounds like something is working, long may it last and continue to improve!
Mary I'm sorry about the need for a wheelchair, am sure hoping you'll feel well for your ds' wedding - you too have been a comfort to me, thank you for sharing your wisdom and strength.
Shabat shalom, Chanah, and everyone else too, hope the weekend will be, if not pain free, then at least controlled. I'm off the Tramel for my back now, it's such a relief to not have that crazy pain, I feel for all who are in constant pain, it's horrible.0 -
Hey Carolben, Im so glad your pain is finally getting better. Thank G for pain medication. I never dreamed I would need to be on it all the time. I did go to the SC state fair yesterday, took my chair, but mainly pushed it. We had a good time, saw dancing bears and racing pigs and the best fried donuts ever. Got in free cause it was people with disabilities day. Oh well, C has to have some perks somewhere, right?0 -
Mary, glad to hear you are managing your pain, and that you have found new perks that go with our disabilities! I had to laugh. Thanks for your humor.
Hugs,
Brenda0 -
Saw the research team today. They seemed surprised that I DIDN't want to try a different chemo. The MO said - well we'll just have to put you into hospice.
I think he forgot I was only on loan from my MO of 10 years, for the trial. I did come away with fentanyl patches, anyone have experience with them?
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Karen, how are the fentanyl patches working? I hope they help with your pain!!!
Hugs,
Brenda0 -
Went to pick them up, but my insurance had not approved them yet. I bought a 3 inch memory topper to put on my latex mattress today. It relieves some of the pressure points on my ribs and spine. I want to eat, but when I do, I am in horrible pain. I am drinking Miramax and taking stool softeners. Slowly drinking Ensure so that I don't throw it up. This sucks!
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So Karen does that mean you don't want to try any more chemo? Or are you waiting to see your regular mo? I hope the patches help, Ive not had any experience with them. For me, more little tumors on my chest, but will see my mo next week, if the gemzar isn't working its on to clinical trials for me too. Hugs to everybody.0 -
Gentle hugs go out to everyone, especially to you, Karen. I hate that you are in pain and that you are having a hard time keeping your food down. I vomited yesterday, but that was because I forgot to take my anti-nausea medication. Karen, do you think anti-nausea meds might help you? I also take Megace for appetite enhancement. It's a milky solution that is pleasantly flavored.
Brenda S.0 -
Karen, sorry you are having such a rough time - have been thinking of you since I read your post last night. Hope you get the Fentanyl patches soon, I hear they are very effective. Will you be having a ct scan or sonar to see what's happening to your liver? Sending you love, hope the pain improves to where you are comfortable and can eat a bit. How are you sleeping?
Mary, sorry to hear about those chest tumors - hope your appointment with your mo goes well.
I'm enjoying my time of chemo - I'm working in the afternoons until next Wednesday, which I'm enjoying. Feeling so much better. Just under 2 weeks till I have my scan! Looks like the next chem will be gemzar & carboplatin. It's been good having this break.
Thinking of you all with much love0 -
Carolben,
I have been on Gemzar/Carboplatin. It has been pretty doable. If you don't count an itchy rash now and then, it's okay. People respond differently to different things, I know, but I've heard other people say it's not so bad.
Hugs to everyone.
Brenda S.0
