Triple Negative Stage IV
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Hi All ,
My mother has been diagnosed for Breast cancer TN 4th stage from past 2 years , Doctor says all combinations of chemo has been done and her cancer is not curable . A Doctor said her cancer is likely to spread to her brain in another 6 months or an year . We are very much worried about this , what do we have to do for her long survival with a healthy life ? Please do tell me if there is any alternative treatment for her to get it cured ?
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First about my WBC (I talk about myself a lot) - I received first Gemzar-Cisplatin on Wed, did a blood test on Sunday (for Port today-Mon) and all my numbers are fine in just 4 days?! - I'm sending them to the chemo nurse to find out if they'll still go down, or is OK for this week's chemo? Is my chemo dose too low if it's not affecting my WBCs and other numbers?
Welcome (?) to the new people here. if you have TNBC IV this is where you belong. The other boards won't have the correct info for you (unless some TNBC IV person posted there instead of here).
I would like to discuss something - Do you feel like you know what your onc is really thinking? I see Gunasheela got an honest answer but she's going to try for other opinions.
I feel like my Dr has decided that I'm incurable and she's just going through the motions hoping for a miracle. The CMF didn't work, the adriamycin didn't work. Now I'm trying Gemzar-Cisplatin. She's concerned about my Cells tolerating the chemo, pain medication and my nausea (Don't have), so she gives me a lower chemo dose. She doesn't want to say it, and I don't want to hear it. But I really want to know what she's really thinking.
I'm just rambling - I've told very few people about my cancer and only my husband knows about this TN IV. The rest I just let them see how well I'm tolerating the chemo.
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I put in the port today! Now I see blood on the bandage. I didn't look before and neither did they so I don't know if it's new. I don't want to go back to the hospital today if it's just blood from the stitches on the skin. It's 8 PM here and I'm going to be up all night worrying that I'm bleeding inside
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Welcome to the newbies on our TN stage IV discussion board. So not to be harsh...but stage IV is not curable. It is treatable and women do reach NED (no evidence of disease) or stable...which is where I am after 15 months. As TN we will be on some sort of chemo for the rest of our lives or possibly immunotherapy.
So...with the above being said. You can definitely live life as stage IV. I worked full time as an HR Manager until 2 weeks ago when I decided to retire at 54 with my husband. We have been on several trips over the past 15 months and have several more planned in the next few months including our retirement celebration down the Danube River on Viking River Cruises. I plan my life around my scans. My last scan showed stable and my next scan is end of October. So life is good for these next three months. I made a decision not to live cancer but to live life!
Julie
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Texas, you make me feel bad. I'm usually such a positive person and here I just feel like I have no control over the situation. CMF didn't work for me. Neither did Adriamycin. I like the Gemzar-Cisplatin - (Had one treatment so far and no bad side effects). I'm praying this is my miracle drug since this board seems to feel that there's a miracle drug out there for everyone - You just have to find yours
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Hi all- Donnadd I remember the same experience trying to decide to go to the hopital because of bleeding when my port was installed. It was scary becaue of the major arteries and not being able to see! Hope its sorted . Texas your frankness is appreciated. Gunasheela there are many options that might also include clinical trials to maybe extend your mom's life, stabilize/slow her tumour growth. Perhaps looking on this forum can show some of the options people have tried/ are trying. I am currently on a trial with no idea how its working .. And no definite idea on what future treatment options may be. It is a scary world living from scan to scan but beats the heck out of the alternative!
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Hello Second chance and other new people:
I'm still adjusting to trying to using a forum (instead of only being a reader! ) and just comment when I am healthier or relate to a comment.
Secondchance, much of my met growth is in my neck and chest (and lower spine, and liver and maybe a stomach lymph node). some of my lung issues they think are from a blocked airway and I manage the shortness of breath and coughing with codeine pills to slow the coughing. I may get my lung drained by needle but its being monitored. Hope chemo goes well for you.
I am also so happy for those with NED or no lights! it does give hope.
And Gunasheela, I did have a brain met but it was treated with a cyberknife (a laser of radiation, kinda) and no further signs. There is also whole brain radiation and a forum just for women with brain mets if you want more information for your mom. There are responses for mets.
take care everyone .
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Today is the last day of my off week, tomorrow is day one of cycle 2. I've got such mixed feelings. I feel great and have a productive day planned, but am also anxious to get on with it. Not looking forward to the long day with onc appointment, all the extra blood draws and tests (I'm on a trial that requires a lot of extra stuff on day 1) and the treatment.
I lost my hair last week, sigh. It's not a huge deal for me, but I know it takes some getting used to for the people around me. I've also become very sensitive to the sun, so finding an outfit with good coverage and a coordinating hat/scarf is a real pain. (Note to self - add laundry to today's to-do list
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I used my brand new (2 days old) port today!! I was glad that the nurse took off the bloody bandage and didn't say "OMG! Why didn't you rush to the hospital when you saw blood?!?"
. Yes, to all that recommended a port, it is much better sitting for 2-3 hours with full use of both arms, and not worrying about it. And now I use my better arm/vein for the blood tests which is a big help. Before I insisted on saving the better vein for the chemo and my other arm has smaller veins (at least it seems that way).Today was my second Gemzar-Cisplatin treatment and now I get 2 weeks till my next treatment
. I really need to see some reduction of the tumor. It is large and a few little ones have popped up near it since the Dx. I need to see that there really does exist a drug that can help me. Since I've joined this board I make believe that the statistics that we ignore don't apply to me but I think I have to see some movement in the right direction. CMF and Adriamycine haven't worked so far.I can't bring myself to tell people anything. I've only told my closest relatives (and not all of them either) and I haven't told anyone that it's metastasized. I can't bring people the sadness and pain. I don't want to answer questions and discussed it. And I don't want people talking about me. Everyone knows someone whose had breast cancer so their first question is - How much chemo will you need? - what do I answer? Indefinitely? Once I say anything I'll get questions and lots of stories and advice. I don't want to hear everyone's encouraging stories - I have TN they don't. That's why I only come to this board. The encouraging stories here matter.
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Hi sherriw - don't mind sharing at all. Right now, my treatment plan is adriamycin/navelbine once per week for three weeks, then I get an off week. The plan is for 6 cycles of this regimen then have another scan to see how it is working. After that, it's all up in the air. My doctor is looking for relevant trials as am I.
I'm searching clinicaltrials.gov for triple negative mets trials, and there are a lot. I encourage others to do the same. There can be so many variations between each one of our tumors, so it's also a good idea to have your path reports handy while you are looking. And there's nothing saying you can't get on another trial after you've finished one, as long as you meet the timelines in the inclusion/exclusion criteria. So, for all of us, don't ever give up hope.
Texas was right when she said TN is not curable, but it is still possible to reach NED. Boy, would I love to hear and see that my report. And Texas you are such a positive inspiration. Thank you. Congratulations to you on your long lived NED! Enjoy your retirement and time with your hubby. That certainly is a dream of mine to make it to those days!
I'm still hopeful that day will come for me. That one trial that could turn out to be the magic bullet could be in the making.
Hang in there ladies; we've got more fighting to do, but all that we've been through has just made us stronger!!! I go for a thoracentesis tomorrow to drain fluid that has accumulated in the pleural space of my left lung. Looking forward to relief from that!
Hugs to you all!
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Does anyone know if it is ok to color my hair while on Xeloda? Trying to keep on keeping on while fighting this craziness. So glad Xeloda isn't supposed to make me loose my hair since it just grew back in after Taxitier last year. My last PET scan showed pretty much all the Lymph nodes aroumd the left side of my chest as active cancer, plus a spot in my pelvis, one vertebrae in my back, and a small spot on my lower sternum. Kind of crazy how it spreads like that.
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Congrats on your retirement. I'm going to be 52 this year and am thinking that sounds pretty appealing. How many different chemo meds have you been on? I'm on number 2 and also had 25 radiation treatments. Hope Xeloda works for me.
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So what can you tell us about your diet? Do you never eat sugar or processed foods? I've read some radical recovery books on diet and sounds pretty interesting.
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Montana Lady : I have continued with coloring my hair and highlights since starting Xeloda in June and haven't had any problems
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Hey Secondchance....wish I was NED. I am stable, which means there has been no progression and some regression....but not NED. I am Very happy with stable and can definitely live with that.
Montanalady...retirement is awesome. I am 54 and if you would have asked me prior to diagnosis when I planned to retire, I would have told you not for another 10 years. I loved my job, the company I worked for and the people I worked with. But I started thinking about all those things that I could miss out on by delaying my retirement, spending more time with my kids, grandkids and DH, plus the traveling we want to do...I decided I didn't want to regret it if I waited. When people would tell me they were busier as a retiree, I didn't believe them...but it is true! Plus my stress level has gone way down. Everyday is a Saturday! And the really funny thing...i don't think about my cancer near as often as I did while I was working.
Donna...I understand not wanting to tell people. There are some really weird questions and some even stranger ideas that people come up with. I had one person tell me to eat lemons..that they knew a man who ate lemons all the time and his cancer went away! I wear a wig when I go out of the house and I get so many compliments on my hair...how do I say..thanks you can get the same style at the Gals boutique at Baylor hospital. It is easier to just say thank you and smile.
Well will sign off for now...prayers for each one of you lovely ladies on this board.
Julie
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I wasn't able to get treatment, my white counts were too low. First time I've had trouble with my counts and I'm devastated. Onc said another week off and a dose reduction. I am completely freaked and cried all day. Now it's the middle of the night and I'm too upset to sleep.
I was assured this is common and it's not time to panic, but it felt like a punch in the gut. The tiny little bit of stability and confidence I'd built since dx was yanked out from under me.
Lemons? I was told oranges, but you have to eat them peels and all. Telling people is the worst. Losing my hair has triggered another round. A wig always seemed like too much trouble, but maybe it's worth a little bit of privacy
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Sherri - I'm always crazy about my WBC and I always ask the Onc if I can get those shots to build up my WBC (had them last year when i had my first run with BC) but she thinks my body has to be able to handle the chemo, and she lowers the dose, and she says it will be OK if we push it off a week - I WANT MAXIMUM CHEMO!! KILL THIS MONSTER!! - That's when I get the feeling that she's not fighting the cancer enough for me.
About my hair loss - I'm ahead of you all. For religious reasons (I'm an orthodox Jew), I always wear a head covering- used to be berets, scarves... But about 3 years ago I started wearing a wig - Less of a hassle and looks much better than scarves and caps. So now no one knows that there's no hair under that wig anymore (actually, there is still some hair left but it's not enough to stave off questions). So my secret is safe till I decide to tell.
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Sorry Texas for mid-speaking. I read that, but had NED on the mind😊. Congrats either way, you are still an inspiration. Im so happy to hear you are living your life. I plan on doing the same. I'm really fatigued today; not sure if from the chemo, the filgastrim shots, or the thoracentesis I had yesterday (or the combination of it all). I'm still pretty sore from the thoracentesis, but I can breathe so much better. They removed 1.5 liters of fluid! And that is not even all of it. I plan on resting as much as I can this weekend, and getting my wigs cleaned. Gonna need them again soon. Nice weekend to you all.
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Hello, Ladies! Just got back late last night from 9 days in Southern Utah enjoying nature's wonders. It was a wonderful time and I've got a bit of post vacation depression having to come back to reality. I'll post a happy pic or two soon. So grateful to be able to go and to feel so completely well and healthy. Great time bonding and making memories with my family.
Welcome to all you new ladies, Secondchance, Montanna, and GunaSheela. Keep posting. We all need each other. To Secondchance, I thought I'd mention that I have a local friend who is having the same difficulty as you with lung fluid. She just had a fluid tap installed, PluereX. Her DH mentioned a cool video about it on youtube should you ever want to check it out. GunaSheela, I echo others comments to look into what trials may be available.
Donna, I am glad you got your port and that things are working out well with it. I don't know why any nurse would be offended that you got one. It's pretty standard to have one at stage 4 here, though always the patient's choice so long as veins still work. When is your next scan? Low doses can still be effective but I think if you continue to tolerate the lower dose well you could ask to increase and see what happens to your counts. No harm in asking. Effects on counts are cumulative however. I did not have trouble in the beginning but did progressively as time went on, first adding Neulasta and then Neupogen and also giving longer breaks and reducing doses, and dropping one drug in the combo altogether. Rest assured that not having trouble with counts is not a sign that it won't be enough to work.
Sherri, I do understand your worry when treatments get delayed. Felt exactly the same but I have learned to relax about it. I've had many delays and reductions but have remained stable for over a year now and still on the first line of treatment. Stable is the name of the game. Can't remember if I shared here or not but someone shared an article with me that being NED does not mean longer survival. Stable is just as good. I'd still leap for joy at being NED b/c doesn't it just sound great? But, since that isn't so likely given the extent of mets in my liver, I really hold on to researched truth that stable is what matters most.
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Hi Ladies - I was wondering if any of you are on Xeloda. My scan last month, the first after my thoracotomy, looked good but there is still an area in the hilar region that lit up, though no corresponding structure showed up on the CAT portion. I have another scan the end of October. If this looks problematic my oncologist wants to try Xeloda. How effective is this for TNs?
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Hi all,
I've been lurking around the Stage IV forum for a while while I have have tried to get my head around my diagnosis and have decided that it's now time to jump in on this thread.
I was diagnosed with TN lung and lymph node mets in mid-July this year not even six weeks after I had finally finished all my treatment following my initial diagnosis in December 2014. My diagnosis was made following a routine check-up with my oncologist where I happened to mention that I was feeling generally unwell - I had put it down to the summer heat here in the Middle East and, also, the fact that I had just finished 18 months of treatment. She decided to do a CT scan as a precaution. My last CT-scan in February of this year was clear so neither of us were really expecting anything.
However, the scan showed numerous nodules spread over both lungs and, also, numerous swollen mediastinal lymph nodes. She followed the CT up with a lung biopsy and PET scan. The PET scan showed multiple enlarged supraclavicular lymph nodes on my left side, the largest measuring 0.5cm, multiple nodules scattered through both my left and right lung fields, the largest in the left lingular segment measuring 1.4cm, and multiple enlarged mediastinal lymph nodes, the largest measuring 1.6cms plus small pleural effusions on both lungs and in the pericardial area. The lung biopsy confirmed the diagnosis and the pathology showed that it was TNBC.
I've just completed my first cycle of Abraxane and Avastin - each cycle consists of Abraxane once a week for three weeks with Avastin on week 1 and week 3. I then have a week off. I start my next cycle this coming Wednesday. Once cycle 2 is completed, we will do another PET to check on the progression and if the treatment is working, I will carry on with this delightful cocktail for another 4 to 6 cycles. If its not working, we'll move on to something else.
I'm really struggling to come to terms with my diagnosis and the fact that I will likely be on some form of chemo for the rest of my life but I guess I will ge there eventually.
I look forward to getting to know you lovely ladies.
Take careDi x
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Welcome Di - I'm another newbie, just finished my first cycle of abraxane plus trial meds (atezolizumab or placebo) so it seems we are on a similar path. Fingers crossed the abraxane is good to us both!
Thanks Kaayborg and Donna for the encouragement. I've settled down a bit and trying to be patient for Thursday when we try again. My doc and the trial nurse were both out last week, so dealing with the fill ins made it extra difficult. The trial nurse acts as my case manager handles absolutly everything's okay I can't wait to talk with her tomorrow. I want to do another blood test right away so we know we are at. Is that crazy? Anyone know how quickly your white counts can move
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Hey Kay, welcome back! Can't wait to see pics of your trip with your family. So glad you had a great time!!
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I'm ending my 2 week chemo vacation (one week off every 3 week cycle so it's actually 2 full weeks minus one day chemo free and then only one long week chemo - 8 days every three weeks that I have chemo in my life - 2 Wednesdays and then I get my 2 week vacation again - The Emend and steroids really keep me nausea-free so I'm handling the chemo well and that is all I ever tell the few people that know that I have BC).
Wednesday I'll start my second cycle of Gemzar-Cisplatin and here is the place where I can discuss the reality part of my Stage IV TNBC. -CMF (last year) didn't work for me and Adriamycine didn't work now. I've had 2 treatments of Gemzar-Cisplatin now and I'm hoping that just one cycle of Gemzar-Cisplatin is just too early to see improvement cause my large tumor is not getting any smaller. I actually took a picture and I stand by the mirror every night holding up my phone looking for any improvement since I took the picture on August 12th (maybe I'll post it as my picture by my name and info
). There is no point in my going for a scan since it can only show bad news and they're already trying all they can. If the part we can see hasn't improved at all it's pretty likely that those "invisible" tumors in my lungs aren't getting any better either. I worry every time I feel an ache anywhere and yesterday I felt like it was hard to walk and talk at the same time.Now here is my question about all the trials... Ten+ years ago my friend got into the Herceptin trial and she feels that's what save her. She's considered cured. Herceptin is now an accepted drug that actually works (no use for us TNs). She really lucked out that when she needed the new drug the trial actually was with a successful drug. So where is our "success drug"? They didn't find it 10 years ago. They didn't find it last year either. So why do women feel that there's so much hope in the trials? Is this TN's miracle year just like 10 years ago was HER2+'s miracle year?
Sorry I'm not such a positive person (though I also live in denial, not letting anyone know, planning to be cured before I have to tell). I need more honest info. I want to meet ladies who have been stage IV TNBC for at least 5 years. I'd be happy to hear that they're getting chemo once or twice a month for years, but I need to hear that there's really a treatment that works. I don't mind sampling CMF, Adriamycine, Carbo-gemza and all the other options till I find the one that's right for me, but I need to know that it's there. Hoping that this year is the TNBC miracle trial year isn't enough for me. - Where are the women who thought 2013-14 were the TNBC miracle trial years?
I don't want to read statistics but I do want to hear more. Is there another forum like this one somewhere else? - I like this forum and feel at home with the women here but I also need more. Does anyone here belong to a different TNBC forum that is giving you more first hand info?
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TNBC diagnosed on 8/8/2016 stage IV. Both lungs identified with markings and started chemo yesterday 08/23/2016 (Carboplatin/Taxol). Brain , Liver etc looks good in initial PET scan. Can anyone provide me some updates and the treatments you have done for the similar situation.
Appreciate your reply
-S
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Clinus, my heart goes out to you as you begin this frightening journey. It gets easier, quite a bit easier. I began my chemo just about a year ago. I began with carboplatin and gemzar (gemzar's great for the liver, where my mets are, and carboplatin is great for TNBC). Due to trouble with platelet counts we had to drop gemzar. My onc feels carboplatin is the most important drug for me and so far it deems true with stable scans continuing. Xeloda has been mentioned as a next tx for me but a trial of immunotherapy and abraxane is what we are most hoping for. I wish you the best with carbo! Keep posting with us!
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Hi clinus - Welcome to the club. Is stage IV your first run with breast cancer? You're on the right drugs though there are others too. Read through this forum section and you'll see the drugs they try for TN. If the Carboplatin/Taxol is working for you keep with it. My PET is similar to yours. I had CMF last year for my first run with BC though it obviously didn't work for me since I'm here in the Metastatic BC section now, though Texas (look up a few posts and you'll see her), is holding stable with CMF. That's how it goes. I've tried Adramycine which is also a drug used for TN but it wasn't helping me. Now I'm getting Gemzar-Cisplatin and we'll see if those are my "lucky drug".
Are you being treated in a good hospital? Are you happy/confident in your oncologist? That's the important thing.
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WBC VENT!! Now that I posted my "2 weeks vacation between chemo" analogy, I got to the hospital on Wednesday for Chemo and my WBC's were too low for chemo. I'm not devastated about waiting for chemo but it's throwing off my whole calendar. I was set for blood tests near home on Tuesday mornings with chemo 2 out of 3 weeks on Wednesdays. Now I have to go to the hospital (an hour away) early Sunday morning to do the blood test there, wait an hour and a half for results and then do chemo that day if my WBCs went up. My weeks are now totally off since the chemo schedule now moved down a week and won't be Wednesdays anymore. This WBC business is really infuriating!!
That was just a Vent
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You have every right to VENT! It would be nice if at least our treatment schedule could be predictable but not so...stupid blood counts. I wish the changes didn't cause so much disruption for you. I really like schedules. I do not like going with the flow but I suppose I am learning to adapt.
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Hi ladies, I'm just popping in to say introduce myself. I've read this thread off and on but never posted. You've all posted some good information. Thank you!
Right now I'm not on any treatments although I may have surgery in October.
Phyllis
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