Triple Negative Stage IV
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Hey Ladies, missed you all. We took a vacation to Florida for a family get together....didn't touch my iPad once and hardly thought about my cancer. It was awesome!
Hey Kaay, great pictures! Your girls are little dolls! So glad you got to have your chemo. Isn't it strange how upset we get if we don't get our treatments😩.
Big week coming up. CT scan on Wednesday, I retire on Thursday and Friday I get my results from CT. Hoping I am still stable and can stay on current chemo routine.
Hey Susie...not sure what metplastic is.....can you give a little more details?
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This is such a cheery forum, trading treatments and optimism, so I hate to ask, do we ever discuss what metastatic TNBC really means? I googled it when I was first diagnosed and didn't like the statistics so I never went back. I then discovered this forum where everyone seems so in control of their cancer (like I felt with my first BC). I would like to discuss some of the things that we don't discuss (like how long should I expect to be part of this forum - are there any posters from 2013 here?) We can be optimistic and hope today's trial is tomorrow's cure. We should live every day to it's most... But where is the forum that will discuss the reality of TNBC?
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Donna do I ever know exactly what you're getting at here! I spend a great deal thinking about that myself and always end at the same conclusion. There is just no way to really know, though I've collected some clues. When I found out I had mets my first thought was of my aunt who was TN and passed away 1 year after her stage 4 dx, just 6 mos before mine...sigh. (I do miss her so much and wish often that we could have shared longer on this journey. She thought I hadn't a worry in the world being stage 1a when she was 4.) I also read some study for which 12 mos was the mean survival with the longest being 100 months. I worried I'd follow my aunt's footsteps and that study's average but here I am with yesterday being one year for me since mets dx (totally forgot to celebrate)! Now I focus on the 100 months plus some given our tx options just keep getting better. Someone recently shared with me in a different thread a great article about mean survival rates. I'll post it following this otherwise I'll end up losing what I've written so far.
There is a also a gal I read a post for just a few days ago who is going to be 8 years with TN mets this August. She's still doing great! Right after my dx, I actually went searching through the boards for ladies with TN and liver mets and found a poster who will be at 9 years in November. I hold on to these stories and hope mine will be the same. Both have gotten many great years from trials. Often I default to the assumption that b/c I'm TN I'll not fair as well as those with other types and more treatment options. But that is not always true either. Maybe ours odds aren't as good but in the end it only comes down to how you, yourself respond to treatment...stats are just stats.
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Here's the article link: http://www.phoenix5.org/articles/GouldMessage.html
KSkier and bottkota are the usernames of the TN ladies I spoke of if you want to look them up and read their bios.
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And sorry for the incorrect info. I've got bottkota on the wrong side of KSkier. She'll be 7 years in Nov. not 9. But she's gonna get 9 and more!
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Thank you Kaayborg.
Dx 7/24/2015, 6cm+, Stage IV, Grade 3, ER-/PR-, HER2-
Then Chemotherapy 6/21/2016 ?
what were you treated with after your Dx last July? (it's missing from your bio here)
I'm so afraid that I'm on the wrong side of the statistics:
1- My CMF treatments didn't seem to work last year. They just assumed they did since my lumpectomy first had left me with no obvious tumor to see shrink. Since I had had clean margins and clean lymph nodes, the chemo was really just preventive in case one of those tiny TN cells had escaped the surgeon's knife.
2- After 5 treatments over 5 weeks it doesn't seem like Adriamycin is doing anything to shrink my tumor (who knows what's going on in my lungs?) - Tomorrow I see the onc - I'll see if she thinks that's still OK.
3- I can't take the Taxols cause I have MS and it may have terrible neurological affects on me
4- I live in Israel. We're very medically advanced. (I even participated in a trial for Copaxone 20 years ago here - It's a leading MS drug produced by Teva - an Israeli drug company - The trial was being conducted just when I needed it and it served me and millions others worldwide for 15 years - still does for many) - But we're a very small country (the size of NJ) - so we're limited on how many cancer trials are being conducted here. How many trials come out of one tiny state? The Israeli Cancer society lists whatever trials are being conducted here in Israel (not necessarily from Israeli drug companies) and then I can go to the hospital here that is doing it, but it's not such a promising list.
I'm not a pessimist. I've lived with my MS limitations for 30 years. I never let it get me down. I make the best of what I have. I always hope for the real cure to come. But here I am so scared that I'm heading to the wrong way in the statistics.
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Israel, wow! It is often so easy for me to forget how ladies gather year from all over the world.
I have no idea what happened to my signature. I was on gemzar/carboplatin combo right after dx and it seems like when I modified this June since I now am only on the carbo, it dropped the gem/carbo date. Anyway, I hear and understand your fears. Nobody wants to be us. This is craptastic stuff. But no matter what all we can do is live well each and every today. I do hope you find hopeful news tomorrow. I'll be thinking of you.
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How do you set up that signature? I filled in my profile but how do I post a signature? (The profile info sets up the signature info?)
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I'm guessing you just need to go to your profile and modify your settings (upper right corner), switching from private to public on your dx and tx info but I'm not great with all this and cannot figure out how to get that date back on my gem/carbo. It's in my profile still, just doesn't display.
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I went to the oncologist today. she agreed that after 5 treatments (weekly over 5 weeks) of adriamycin there is really no improvement on the size of my tumor so we're stopping the treatment. I feel so relieved. I just really hated adriamycin so much. There's the whole fear with it that if the IV isn't in perfectly it will burn out your insides or something. I'm just totally unrelaxed the whole treatment. I never felt that way with an IV before. I was't like that when I had chemo last year. I was getting monthly IV treatments for my MS for years - Totally relaxing. I'd walk around, prepare coffee... I'm not afraid of IV's but this adriamycin had me crazy nervous. I don't move my arm (or even breathe) the whole time. So tomorrow's chemo is cancelled. I walked out of there feeling sooo relieved. I felt like I'm cured. Pretty silly. It means that a good drug isn't working for me. I told her that I want gem/carbo (just like kaayborg
- the emoticon is a joke like when little kids want things just-like-big sister. - But you do seem so happy with the gem/carbo). So the oncologist said it does seem like the best idea for now. Maybe in a cycle of 2 weeks chemo and then one week off. Then she started to think that maybe the gem should actually be every other week - Sounds pretty confusing to have 2 different cycles running at once. sounds like I'll be there every week but never sure what I'm getting that day. The doctors in this hospital make all the decisions as one staff so she wants to discuss it with them and will call me on Thursday. she said that her other thought is maybe some other drug - something like emboline (not exactly but I forget exactly what). She's so concerned about my WBC's I just made it for each treatment now. And she's so concerned about neurological damage with my MS. I had read about one of the drugs making your fingers and toes tingle. I told her mine already do, so what's the problem? But she's afraid. It's a problem cause the oncologists really know nothing about neurology (and the neurologists know nothing about cancer).
I gave her my whole speech again to convey at the staff meeting that they really screwed up there by not taking my followup seriously after the first time when they knew that I was TN. She's new in this hospital (and on the young side) so I don't really think she's going to get up and shout my frustrations out at them, but I really push her every time.
(I figured out the signature - Thanks)
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Donna, it sounds like your appt. went well. Two quick things about gem/carbo. First, there are two well studied schedules, both of which your doctor is discussing. Both are equally effective so much as we know anyway.
Second, it does not sound like you have a port. I highly recommend getting one. Gemzar burns during the infusion. It's not terrible and I put up with it for several infusions as I didn't want a port. However, it also really kills your veins. I had tons of hard knots and eventually after a 6 stick attempt to get an IV in, I got the port for the next round. Sooooo easy with a port, no burning...wonderful. We're in this for the long haul so I recommend the port 100%. Even after I had the port, my veins continued to be sore due to phlebitis. I thought I'd permanently damaged them but it did go away in a few weeks after no longer using them. Of course, not everyone has this trouble, but Gemzar is known to be particularly rough on the veins. You'll be fine for the first round if you can't get a port right away (a heating pad helps with the discomfort) but get a port I tell you. I have not regretted it!
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I am terrified about a port but you're convincing me. My veins really aren't that great and I think I'll panic if it burns during infusion. There's one thing I don't understand and can't find pictures online - If the port is near the top of my chest covered by my V neck shirt... How does the IV work? I have to take off my shirt or just pull the V open enough to get to? Then What? I have the IV tubing sticking out from under my shirt neck during the IV? Does the shirt have to be left open? I've really never noticed anyone getting their treatment from some weird angle (don't really stare at each other and there's space and some curtain but I would have noticed somewhere). Can I have blood tests done there too? (not in the chemo room, some other place like our clinic).
I feel like I'm hogging up this forum here but hope to get onto the right treatment and move on...
Eribulin is the other drug they're considering if not gem/carbo. Does anyone here have experience with Eribulin?
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No worries. A V-neck or button down works perfectly (I've even done reg. T, sort of my accident, though you do have to stretch it quite a bit). You pull the shirt slightly down to the side. I always slide my bra strap over my shoulder while they access just so it's out of the way, then it can go back in place once it's in. They tape all in place and just a small tube hangs outside your shirt...no need to leave anything open. It's so unnoticeable that my center puts a colored sticker on you just to make sure no one forgets to de-access you before you leave. If you get a power port it can be used for blood draws, CT scans, chemo...just about anything, anywhere. So much more comfortable during infusions as you can move freely and never feel a pull. I forget it's there. You can even get numbing cream so you don't even feel the stick. I got the rx but never filled it as the stick is so much easier than any IV was, I never thought it worth the trouble. The only negative for me is that mine is extremely visible (I am very thin). Nurses love it b/c it's so easy to find but not so much me. I was self-conscience about swim suit season and tried so hard to find a tank-style suit that would hide it. Never did and wear what I want without care now. It should only show with strapless if at all.
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I definitely am missing something... When I get chemo (or my MS IV's) - The treatment takes 2 hours. There's a pole that holds my 3 bags of drugs. The needle is my arm or hand. The tube goes from my hand to the bags on the pole. I can stand up and wheel the pole with the tube infusing the drugs from those bags up there into my arm. The tube is by my arm.
(I know I sound crazy here, but I don't get it). When I have a port and get up to take my pole of drugs for a walk isn't my tube of drugs hanging across my chest/stomach since it's feeding into my port which is through my V in my shirt? I think I need to see a picture
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Hey Donna. I also have a port. In fact it is my second port. The first was removed 1 year after my initial diagnosis in 2013. Then when my cancer had metastasized to my lungs I had a new port put in. It is so much easier. I have labs drawn from my arm (I can only have it done from my right arm due to lymphedema). The lab techs sometimes have a hard time getting my vein to pop. But when I get my chemo infusion every 3 weeks (and it takes 2 hours), it only takes a minute for them to access my port. They usually spray some freezing spray on it before they access it. The needle in my port is attached to a tube that goes to the chemo that is hanging from on an IV cart (not sure what it is called). But anyway....I can unplug it from the electric monitor and wheel that cart around the room and take restroom breaks if needed. Then when I return to my chair I just plug it back in and all set. I am unplugging the electrical cord not the IV it self. I highly recommend a port...especially for anyone that is Triple Negative since we will be on some type of chemo for the rest of our lives. I don't worry if it shows..like you Kaay mine is easy to see and access. Below is a picture of me receiving my chemo infusion. Hope this helps with your questions.
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Now I see - They sneaked it out your sleeve so it's not so different than if it's attached to your arm by the elbow bend. (Why aren't you smiling?
)Thanks - No more port questions
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Hello EVERYONE, I know I have been missed but I see the board has been busy without me!
I also recommend a port!
So now, back to me
I had a PET scan at Mayo on Monday...No lights!!!!! I don't know what this means really but am thrilled and was called an "extraordinary responder." I don't think this is a technical term but I have never been extraordinary in anything so I am milking this all for what it is worth. Prior to my scan on Monday I had 10 low dose taxol infusions. My initial PET scan, I say, lit up like a Christmas tree....lights in the breast, lymph nodes, approx. 20 small lights in my liver, mammory gland behind the sternum, iliac (sp?) bone, and collar bone (this was found to be a benign giant cell tumor). This scan, all the lights are out and the benign tumor in my collar bone was very dim! I look like a normal person...well at least a person without cancer. I am very excited about this but also feel naïve. I couldn't really get the doctor to tell me what this means, she just said we can move to maintance chemo - three weeks on and one week off for three months until my next PET. Does anyone else know what this means with regards to recurrence, overall survival, ect.????? So odd, this scan made me so happy and it was so crazy to see when I had been expecting to see "lights," and now I just want to know what it means...Sorry this post is really all about me! I will start checking in five times a day and growling at you ladies for not posting your every thought again! Thank you in advance for any ideas as to what this..."now you see me now you don't" game my cancer is playing on me!
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Hello ladies,
I have been off these board for several years now. My BC became stage IV three years ago this month. I am going back on chemo next week. Does anyone have any words of wisdom about Xeloda. I heard that there might be better outcomes when Xeloda is given with another chemo drug, but haven't found out much about that. Seeing my onc on Monday and want to have good questions for her. Thank you, Aimee
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Hey Steph, that is awesome. Basically what I was told by my ONC several months ago is that I will always be on some type of treatment (chemo for now) until the rest of my life. Even if I were to reach NED. She said we know without chemo my cancer returns, as it did between my initial diagnosis in 2013 and stage IV in 2015. So it kinda sounds like you are NED, which is awesome.!🎉🎉
I too had a great week. I retired on Thursday after working for the past 40 years minus the 6 weeks I took off with my two children when they were born. I also receive good news from my CT scan on Friday...I am still stable😊. One met did decrease from .8mm to.4mm. So I get to stay on my current chemo which is awesome. I will have a PET scan in 12 weeks to see how I am doing.
I have booked an 8 day river cruise on Viking for my husband and I to celebrate all good events. We sail in September from Germany to Hungary.
Aimee...welcome back to the boards. I haven't done Xeloda but the F in my CMF cocktail is similar to Xeloda. There is a discussion board that is solely about Xeloda. Maybe someone on that discussion can help. Where are your mets? What other chemos have you been on?
Julie
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Last week I didn't get chemo since we stopped the adramycine since it wasn't working, so I panicked at every ache over the weekend that the cancer is attacking me. Wednesday I'm starting Gemzar but not with Carbo - I'm getting it with Cisplatin instead. I think the Cisplatin instead of Carbo is because my WBCs were doing so badly with the adrmyacine.
Did anyone here ever take Cisplatin? I'm getting scared of Gemzar-Cisplatin side effects.The Emend worked beautifully for the adriamycin but the Dr. says this will be worse. She thinks cannabis is the way to go but it's a whole production to get so I've been pushing off applying for it.
I'll be doing a 21 day cycle - 2 weeks treatment one week off. I'm all scared again about the chemo.
Another question - Do you eat specific things to get your WBCs (and whatever cells) to rebuild quickly for the next treatment? Someone recommended 5 apricots and 5 almonds every day to me. Last year I took a shot the day after the chemo each time but this time the Dr (different onc) says that it won't help if the next chemo is in just a week and anyways my body has to be able to build it itself. So what helps?
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Well, ladies, I've been missing you. I have no idea why but my notifications periodically turn off for certain threads.
Welcome, Aimee! Sorry, I can't help with Xeloda but I do know someone locally who did very well on it for a good while. She did not have it in combo but she would say she would marry Xeloda and have its children if she could. Hope you feel the same.
Donna, ask your onc about Neopogen. It can be given in between chemos. I do Neopogen (a series of three shots on days 2, 3 and 4 of the cycle) after my first treatment, then Neulasta (just one shot on day 8 of the cycle, after the 2nd tx). Neulasta is the one that needs longer than a week to work. For a while I just did the Neulasta on day 8 and it was enough of a boost to get me through the beginning of the next cycle but after a while we did have to add the Neopogen as well. (Also, FYI, the tube does hang from the front of your shirt but they often tape it to your clothes at the shoulder as shown but hard to see in Texas' pic).
Texas and Steph, so wonderful about your scans! Texas enjoy that trip in Sept.! Sounds wonderful. I'll be envying you as I'm back to school then. Steph, my onc said the same as Texas' about chemo even when NED. Nonetheless your news in fabulous!
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Oh, they didn't run it through the sleeve - it's just taped up - Now I see it.
Tomorrow (Wed) I start the new Gemzar-Cisplatin chemo. Sunday is the Onc. Monday I'm getting my port. Tuesday is blood tests (locally - not a big deal, It's just one more thing on my calendar). And then Wednesday is chemo again!! But the next week is NO CHEMO!! After those five weekly adriamycin chemos I'm so excited to mark my calendar with every third week chemo-free.
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This week is a no chemo week for me too, yay! I'm tired today, but have ten more days to rebuild until my next appointment. Nothing, not even a blood draw!
Yay Steph and Julie on the good scans! I've got another month until my first scan since diagnosis and starting treatment. I've already got butterflies just thinking about it.
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Sherriw- I hope your scan is good. I will be happy to hear all about it!
Donnadd- You will live your port!
Texas- So happy your scan shows stable and shrinking! I will be looking forward to hearing all about your cruise, the commercials look amazing! Enjoy!
Kaayborg- my daughter starts first grade in three weeks, where has the summer gone?
In general- while scheduling my next appointment the lady said she has a friend who is going on ten years after her stage 4 triple negative diagnosis. She said she oly has yearly check ups now...I asked her to see if she would be willing to talk with me because this was so encouraging!
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hi everyone. Zarovka started a new thread in the stage 4 forums last month titled how many are we 2016. Z is attempting to count the number of metsters posting or lurking on our stage 4 threads. We are both thinking that people have possibly missed that thread because they likely only respond to threads marked as their favorites. If you don't mind bumping over to that thread if you have not done so already it would really be appreciated
Thanks so much, Mary Anne
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Started Gemzar-Cisplatin yesterday. My nurse seems to be offended that I want a port. Like I don't think she's handling poking me weekly well
. So I strengthened my case by complaining that it hurt going into my arm and must be wrong (it really was hurting) so she had to redo it in my wrist. I said - This is the last time!! Tried to get her excited about the port too. Maybe it reflects poorly on her skills if her patients ask for a port 
The anti-nausea IV drug (forgot which) plus Steroids and EMEND are really doing their job. I hope they continue. I'm really making an effort to drink a lot. I think Texas is the one who says she's never nauseous and she drinks tremendous amounts. The Steroids give me energy (I go down in amounts in pills for 3 days) - I love Steroids.
Sherri - How are you getting Herceptin if you're HER2- ?
Kaay - I'll ask my onc about Neopogen (hope they have it here). Don't know why she didn't suggest it. She prefers to lower my chemo dose. I really don't want to have to move the chemo a few days as my WBC's build. cause I'll end up in the next week and I've already planned my off week every third week and they're good where they are. And Wednesday is a good day for chemo for me.
I met with the hospital cancer dietitian. Very convenient- She came to speak with me during the chemo. I thought I could get some ideas for building up my WBCs. Everyone seems to say there's nothing special to eat for that. Anyone have any advice on that? The dietitian was more interested that I eat at all, not what I eat cause her Cisplatin fact sheet said I'll be nauseous and have no appetite. Well I've made it to day 2 and I'm eating away
. I hope these two drugs won't catch up with me in a day or two when I finish my emend and steroid pills 
. My husband thought she was wonderful cause she gave us the link to aicr.org and something called Healthtalk.aicr.2016. I'm not sure what this lady gets paid for. She's supposed to understand all the info and guide me. Not tell me where to go do research .0 -
Glad you're doing well Donna. The steroids always make me eat a lot!
I had two primary tumors, one tn and one her2+ so I had herceptin for a year. I finished it last October. We did a biopsy on my liver to checks the mets, came back triple negative.
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Hi ladies. I'm new to this board. I've been battling triple negative cancer since February 2015 (diagnosed at 39), and literally have been in some kind of a treatment since then. The cancer had moved to the nodes on the contra lateral side this spring, and I just finished radiation for that. Then had a CT/PET scan this week and was given the devastating news yesterday that it has now engulfed all of my lymph nodes on both sides of my chest from my neck to my groin. Also have skin mets. So, Now am officially stage IV. I also have a significant amount of malignant pleural effusion in my left lung with 60% of my lung filled with fluid, and I'm in a great deal of pain. No masses in any organs, but was informed that this is now a significant threat to my life. I wish I could have started chemo yesterday, but I am starting Tuesday. I also know there are a lot of clinical trials for triple negative metastatic patients, so there are options. Still very scary now knowing my mortality as been given a violent shove into serious in my face. I've got a lot of reading to do on the earlier pages on this thread to see what info might help me, but wanted to introduce myself since I'll be on this board a lot I'm sure,and because you all are always so supportive and helpful. Hate that any of us have to be on such a board, but I know that there is so much love and support here, and that I'm in a good place. Hugs to you all.
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Sorry to meet you this way Secondchance, but welcome all the same. I'm also very new to stage iv (just finished my first cycle), so I'd be very interested if your comfortable sharing info on your treatment plan. Good luck Tuesday
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Hello all. I'm new to these boards/threads. Looking forward to talking to others who have TNBC. It will be nice to hear others stories and comments.
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