Triple Negative Stage IV
Comments
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Im having a hard time on Gemzar by itself. Steroids keep me up for days and then Thursday is a bad day with bone pain. I do usually have a good week-end though, so Im glad I do it on Monday.0 -
Thanks Brenda, I seem to have tolerated the chemos I've had so far, pretty well, nice to hear this combo is do-able!
The thought of going back for more chemo makes my stomach knot, (although I'm keen to do it and to hit those nodules and keep things at bay, hopefully). I realise that even though I didn't have bad se from the Taxol, it's still chemo, and the fatigue, vague sickness, steroid highs, aches, headaches, etc etc. I can totally understand someone saying "no more chemo". But I'm not ready to do that yet.
Working is going well, it's nice to have the energy to do this work, and to come home at 5pm and still have energy to go out for a meal or something in the evening.
I've gotten myself involved in co-ordinating a street collection for our local Hospice. Have never done something like this before. It's going to be on Nov 2nd. And on the 1st of Nov we have our annual walk for cancer - it's a 5km walk, and I"m sure I can do that! Last year it was in the middle of my rads & I helped with the registration, but didn't walk. And I'll be working until the 31st, so I'm keeping myself nice and busy until the scan on the 4th Nov.
How are you doing, Karen, any relief from the pain? Thinking of you xxx0 -
Carolben,
Have they diagnosed your mets as triple negative as well? Just curious.
My oncologist said my second diagnosis (2009) was er/pr+. He wants a biopsy of my lung mets just to make sure they are not mets from my 2009 dx. I went to get a second opinion and this was how all my path reports got reviewed.
It is so good that you are getting a break from chemo. When my blood counts were low I got a one week reprieve and I thoroughly enjoyed it!
The street collection sounds very rewarding and heartwarming. You are nice to get involved in such a project.
Wishing you great days ahead!
Brenda0 -
Hey guys:
Karen - Hugs and prayers go out to you. I am so sorry that you are having so much trouble. Some time back I used the Lidocaine patches which are not as strong as the Fenthynol patches but did seem to work.
Carol - glad you are feeling good. Its so good when we have a break.
Got good news the other day, liver and lung clear but now brain mets and headed to full brain radiation. Anyone go through this.
I think I have checked every box on the list, what you can get from metastatic tnbc. They also had to put in a filter because of dvt and the brain mets paralyzed my left arm for a while. It has just been crazy.
They also want to test my spinal fluid to make sure nothing funny is in there - Lord have mercy.
Only God gives me the strength to wake up every morning, go to work, schedule appointments and just be their for my son.
Another day. Have to thank God for that other day.
Hugs and kisses to all.0 -
Alilou, good to hear your lungs and liver are clear. The chemo you just had must have worked! Is whole brain radiation the only treatment for brain mets? Is there not a new chemo treatment that goes through the blood/brain barrier? How many lesions do you have and how big are they? Sorry I have so many questions.
Hugs,
Brenda0 -
I am new here, but I am Triple Negative. Stage 4, Grade 3, Triple Negative.. spread to my bones and lymph nodes. There was no in between with me on the cancer... I found out on October 1st that I had the breast cancer after being told many times that I was worried about nothing (having to force my doctors to test me) and being told they would find nothing.... they told me about the Cancer and by October 10th they told me they believed it was in my bones based on Bone Scan and Pet Scan results. I actually get the bone biopsy on Tuesday the 29th but they say they are 99% sure it's in the bone and are already treating it as such based on the scans.0 -
So sorry to see everyone going through so much right now. Side effects from Gemzar are not getting any better and Im down to 3 good days a week. Still having trouble with the lymph node in my neck, but will see mo next week and go from there. Alilou, that's great about your liver, sorry about the brain mets. Its always something isn't it? Good luck with your treatment plan. Freedom,welcome to our little group. Don't have any experience with bone mets,but Ive heard that they can be well controlled by chemo, do you have your treatment plan yet?0 -
Hey Brenda: The chemo worked right away. They have me on Taxol and Carbo. With little to no side effects except maybe a little of fatigue and down feeling the second session of the month. But I am so grateful. I three lesions. Not too big but one is pressing on my left arm nerve causing slight weakness. I also have little ones scattered about that they are not concerned about but might as well get rid of them. Their concern is about one lesion that is close to a brain ventricle which carries the central nervous fluid from the brain to the spinal cord. Because of that one is that they want to radiate and then do spinal tap and spine MRIs to make sure fluid is clean. There are pills you can get now too for TNBC brain mets, I'm just not a candidate for it. But God and time will tell.
The radiation to the brain will be whole brain. They can't give me chemo pills and the Taxol and Carbo at the same time and since the chemo has also helped with my bone mets, which I think they are planning to give me Xgeva for that as well they rather do the radiation.
They are hoping that maybe the brain radiation will put little holes in the barrier of the brain so as to try and get some Taxol and Carbo in there because they feel it will do me good considering my response to it. I just grateful that my oncs are always on point with me.
Welcome freedomchild. Despite the fact that it is not the greatest club to be in these group of ladies are very informative and supportive. I too was misdiagnosed and led around by physicians. I was told by many doctors that since the lump in my breast hurt I was fine because pain was good it meant no cancer. I have since learned that cancer is not painless. Believe the best thing for you now is that you know. Learn everything you can from real people that quack jobs on the internet. Speak to your oncologist like she/he is your friend and ask all the questions. Right them down so you don't forget. Once you have the answers and the treatment you will feel more and control and more yourself. Take time to mediate and hurt. Hurting is a healing process. Mothers and wives tend to want to be strong for everyone else. I don't want them to see me like this, I want them to know I can handle this.....I am woman, hear me roar. That attitude almost killed me. I have since learned that my time to pray, mediate, cry, be angry, etc., is important. I have bone mets as well. So far thank God not too much issues with them although sometimes there is ache around my rib cage when I breathe deeply but always speak to your doctor if there is pain or pressure and believe they will come to the rescue.
Mary: Hope the chemo gets better. Lord I hate when my weeks get short but you are in my prayers and I know that you'll come out of it.
Hugs and kisses all.0 -
FreedomChild, Welcome to our very exclusive club! Bone mets are so much more manageable than soft tissue mets, I hear. I have mets in the lining of the left lung.
Mary, 3 good days are better than no good days!
Allilou, I still think it's great that you don't have the lung and liver mets. Sorry for the pain caused by the bone mets. Sounds like you are ready for the brain radiation. Please keep us, your friends, updated!
Hugs,
Brenda0 -
You're right of course, I'll take the 3 days, its hard sometimes not knowing if and when I'll get a break from it, since right now I'm doing it every week with no break. Feeling better tonight, so Sat. and Sun. should be good.0 -
Yay! Have a good weekend, Mary!
Hugs,
Brenda0 -
Brenda, they couldn't get enough tissue to check, but from the histology of the cells they got to test, they reckon it's also 3- in my lungs.
Alilou, you're going thru so much, big hugs!
Welcome Freedomchild, you'll meet some amazing women here. Great advice from Alilou!
Sorry you're struggling with the Gemzar, Mary, hope you'll have a good few days. It sounds like you haven't had a chemo break for a long time? I feel unsettled cos if my lung mets were growing during chemo, what are they doing without it?? But, I'm still pleased to have had this break, feel a lot stronger.0 -
Just checking in with everybody. Its been quiet for the last few days. Go to see mo Thursday, but am not encouraged, new growth on my chest wall and lymph node in my neck is still swollen...on to clinicals?
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Mary, what clinicals are available? I'm sure there's a chemo regimen you have not tried. Navelbine?
Hugs,
Brenda0 -
Im sure there are some I havnt tried, due to sucky insurance Im kind of limited. I have been on chemo off and on since 2008. Im really kind of hoping that there is a clinical trial I can get into, but will talk to mo about it. I may have to travel to Duke or Chapel Hill, there's usually something going on there.0 -
Just popping in th o say hello! I am learning how to adjust my pain meds and am comfortable most of the time. Sleeping more, but still enjoying life.
Hugs...
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Glad your getting adjusted, Karen. No more treatments? I had some bad news this week, Gemzar isn't working, so on to Navelbine...another bites the dust. Mo gave me next week off though, so I'll be in good shape for the wedding..start new treatment a week from Monday. He is really perplexed about my chest wall, and had the hospital photographer take pictures of it..I guess I'll be the subject of the next mo meeting, Oh well at least I'll be famous for something, right?0 -
Karen! Good to hear you are managing your pain. I also want to know what's next in your chemo arsenal?
Mary: Oh, the perks! You make me laugh! Thanks for reminding me how tragically funny we can be!
Hugs to everyone,
Brenda0 -
Glad you're more comfortable, Karen, that must be such a relief! So great to hear you say you're still enjoying life, that's what it's about, grabbing all those good times! Good for you!
Mary, sorry the Gemzar bombed, hope Navelbine will be much better! Glad you have the week off, and hope you have a wonderful time at the wedding! The lady with the mysterious chest wall! What is it that's going on there? You mentioned that you can see tumors? Why are they perplexed? Just interested.
I was involved in a Hospice street collection today - had a 24 hour tummy bug on Thursday and was knocked off my feet (again), didn't even get out of my pyjamas yesterday! Was responsible for an area near my house for the collection (I'd organised a bunch of people to shake the tins) and it was so good to be feeling better, and strong enough to do it! Don't think we took in a fortune, but we did okay.
Because of the tummy thing I couldn't do the bc awareness walk on Friday, it was raining and cold and I decided to be a bit wise and just stay in. But I was disappointed.
Anyway, the sun is shining today and it's a good day, hope you all feel the sunshine today!0 -
Carolben, the tumors are on the outside of the chest wall. Theres a group of about 5 that will abcess, but cultures show no infection. They drain away for a few days, disappear and then come right back. That's the first sign that I know chemo had quit working, but I don't think mo has an idea of why they're abcessing like that.0 -
Hello girls!!
May I join? I'm new around here, unfortunately. Trying to keep my head above the sand. My Taxol didn't really give us the response we were hoping for and stopped after 7 sessions. I'm onto the CAF/FAC treatments now. This was my first one this Friday and I'm doing okay so far. Just nervous that we're going to "run out " of chemos. I know that's probably a pretty premature worry but one in my mind none the less. My anxiety was a bit more high at the last meeting with my onc. I liked going weekly for treatment... I felt like I was at least 'doing something' (even though we weren't..). I'm so paranoid as to what the off weeks will be like since I won't see anyone for 3 weeks (and going ever week made my time FLY by!). Ah well, I hope to get to know you girls as the time goes on
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Damn, Mary, that sounds horrible - they seem to act as a reliable marker re chemo working or not, are they very uncomfortable? As you say, if it's not one thing it's another. Anyway, enjoy your time out from chemo and go have some fun at the wedding!
Welcome ipray, sorry you need to be here, but glad there is here for you! I know just what you mean about being nervous to run out of chemo options (but it seems to me that we still have quite a few), hopefully the CAF will knock your mets out the park! I did AC last year, and Taxol this year, it does make the time go quickly when I get weekly chemo, but I was happy to have the 3 weeks between chemos with the AC, it was harder.
Scan tomorrow morning at sparrow's fart - 07h45 in the next town, 30km away, should hopefully have results by midday...... got butterflies in my tummy. Been feeling like I need a good oiling - all my joints feel rusty and tender and fragile!
Every year they have a Plett for Peace thing on the beach, so I'll be going to that this evening, with some friends, have a picnic on the beach and see what's been organised for Peace!! Should be fun tho. I haven't been out to something like that for a while now. Nice that the summer is coming and we can do these things in the evenings, soon we'll be swimming in the sea, can't wait!!0 -
Carolben, have fun tonight and I'm keeping my fingers crossed for you tomorrow.
My ct-guided needle biopsy is on Tuesday. I am nervous about that.
Welcome ipray. I only recently joined this group, and I can tell you it's a good one.
Hugs to everyone!
Brenda0 -
Oh Carolben and Brenda will be thinking of you both. Sending good vibes to both of you. Yeah Carolben, they hurt like hell until they abcess, then they drain and ok for awhile. Hi ipray, sorry your finding yourself here. Don't worry to much about the number of chemos, you never know whats going to be your magic bullet. I think Ive probably been on 10 in the past 6 years and still looking for mine!0 -
My CT-guided needle biopsy did not happen. After the CT scan, the radiologist said there were no more tumors in my pleural lining. I can't help but be very happy on the one hand, but suspicious of those evil cancer cells on the other hand. Where are they now? Are they looking for another home in my body? Did the chemo and prayers zap them or are they lurking and waiting to pounce again?
I choose to put this episode under "Big Joy".
Love,
Brenda0 -
Big joy is right, Brenda! Sounds like you're dancing with Reggie!!!! Enjoy that!
Mary - that sounds so uncomfortable. Sorry you're having to deal with that! Is there something in particular that you use topically to clear them up, or is it that they get treated from the inside out with chemo?
ipray - sorry that you have a reason to be here, but welcome to our little crowd. Take some time to breathe. You've found yourself a wonderful group of ladies here.
Carolben - I can't tell you how jealous I am when I read that you're going to the beach tonight for a picnic. How heavenly that sounds!!!! It's cold here, and about as far away from a beach as you can get. Suck up some of that healing salt air for me tonight, please. There's nothing else like it!0 -
The beach sounds wonderful to me too. I hate the thoughts of winter, as I am a hot weather person, last week we were in the 70s, this week we're not so lucky, weather is supposed to be good for the wedding Saturday, sunny and in the 60s. hope it doesn't change as its all outdoor. Brenda, that is good news, although I understand the feeling of the not knowing if and when and where next. So happy for you. Surfdreams as far as my chest wall, there is nothing topical to use on it except for a cream pain reliever. Chemo usually gets it under control, in fact that's when I usually can tell if Im having progression, they pop up first.0 -
Just checking in. Carloben Ive been thinking about you. How scans go? Hope everything is going ok for everybody else.Its been quiet on this thread. Wedding was great. Weather was a little cool for an outdoor wedding, but still really pretty. Lots of old ladies doing old dances and young kids teaching us the new line dances. My feet are just now getting over the shock, as heels and I do not get along anymore. Had a bad case of bronchitis to go along with everything else, but caught it quick on Friday so was ok for the wedding. Hope everybody is doing ok and this thread will pick up again. I enjoy it..0 -
Mary, good to hear that the wedding went well. Sounds like you had a lot of fun in spite of the heels!
Surfdreams, who is Reggie? I know NED and the stable boy. I don't think I have met Reggie!
Hugs to everyone,
Brenda0 -
scan showed slight progression, a few mm and some new nodules that they didn't see last time. Onc happy with slow growth. Going to start Xeloda next Wed. Will see him on Tues again.
So glad the wedding went well, Mary, and you got to kick your heels up (literally!).
Bit nervous to start new chemo, as always, sounds not too bad tho.0
