Triple Negative Stage IV
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Hi Cat and Lost! I wish your doctors/team would hurry more. Triple negative cancers grow faster than other types. My doctor hurried to eradicate my mets. I am glad that he did.
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Tomorrow I will find out through tumor markers, if I will stay on vp-16 or move on to something else. This is getting very discouraging as this is the 10th chemo Ive been on. Nothing seems to work more than 3 months. I really don't know what I'll go to next.
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Welcome Catwhispurrer. Sorry that you have a reason to find yourself here, but welcome! I had very good luck with Abraxane for a long time. I hope it treats you kindly!
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Hope you get good news marywh
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Mary, good luck to you! When you have a moment would you please update us on all of the chemo regimens you have had? They are not listed under your signature yet. Come to think of it, I need to update mine as well.
Thanks.
Brenda
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Thanks for the welcome ladies. Sorry to be here but it sure helps having a great group like you all.
Mary - I hope you get better news.
I talked to my Dr and told him I was scared to wait 2-3 weeks to get set up on the clinical trial, so he is trying to fast track getting into it. I want to start SOMETHING by next week, so if they cannot get me into the trial, then I want to start something else.
I had a pelvic CT, MUGA, and bone scan today. I meet with him tomorrow, get bloodwork done and fill out more paperwork. He is trying to get me started by next Wed. I meet with a surgeon tomorrow to plan the port placement and hope it gets put in next Monday.
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Good luck with everything Cat. I know its overwhelming at this point. Thoughts are with you..
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Thanks Mary. Did you get the tumor markers yet?
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Does everyone with mets get a port and keep it in forever? I am dreading a port as it was really bothersome last time. I am very small and thin and the thing seemed to take up half my chest and stick way out! It was always irritated too because it was right under my bra strap. I have consult with surgeon tomorrow to put it in. Anything I should ask about port second time around, besides hoping that they don't collapse my lung again like happened with the first port? At least this will be a different surgeon than the first time.
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Cat I do think they try to get most of us a port, it's just easier on our veins. I'm thin too and hated how my 1st one stuck out. The one I got put in this time was smaller and not as noticeable. Wish I could have kept it.
Stuck with a picc line instead. Hope they get you started soon so you feel less stressed about it all.0 -
They put my 2nd port on the other side and it is not nearly as noticeable as the first. I wear a sports bra and its much more comfortable than a regular bra. Different surgeons place them differently. No news on the tumor markers, will find out tomorrow when I go in to see mo.
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I asked my onc if I will ever get rid of my port. He wants me to have NED for a year before we can even consider it. I don't like the way my port looks, but I am so glad they do not have to look for a vein. The last time they did that, they had to use an ultrasound machine to look for a vein!!! That is nerve wracking!
So yeah, I guess having a port is part of the stage 4 tnbc package.
Hugs,
Brenda
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hi ladies. I've been lurking for a while. Playing the waiting game right now. Surgery should be within two weeks to remove nodules from my lung and then more chemo I suppose. I don't have a treatment plan yet though. I feel like a time bomb. I can't figure out why the drs don't understand how fast this darn triple negative grows! I remember from my first appointment this time last year with my MO that she told me the rate at which my cells were dividing. I wishes after the fact tht I had not been in such a daze and had asked more questions when she said: typically we consider a slow growing cancer to be 10% or less and a fast one 20%. Your cells are dividing at 90%. Wth? She breezed right through that sentence and it took me 10 minutes after I left to think WHAT!? I don't even trust my scans because who knows how it can grow or spread in a day or week at those rates. Anyhow, I don't know why I went off on that tangent but just wanted to say hi.
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Markers came back elevated again, so on to #11. Will start on either Doxil or Carboplatin Monday. If my muga scan comes back ok, I will start on doxil first. You can't do doxil if your bilirubin is up, so he wanted to try that first. It's really getting scary cause there's only 4 more chemos to try, then on to trials.
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Mary, hugs!!! This next one will be the one that works for a long time.
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Welcome Delirium - hate for you to be here too. I just joined this group and am in about the same place as you - doing all kinds of tests without a firm plan yet. I am supposed to start a trial but couldn't stand the waiting and knowing its spreading/growing, so I told them I needed to start by next week - either the trial or something else because I can't stand this wait anymore. Even though I have spots in many places, my onc said it is "miniscule" as far as mets go but he understood how I feel. At least my pelvic and bone scans were clear so far!
Hugs to you. hang tight. I hope you have a plan soon as I think it should get better once we get going.
Oh no, Mary. I hope this next one kicks a**s.
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dammit, Mary, I'm sorry!! big hugs xxx
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Has anyone decided for Xgeva? I thought I was having a kidney stone and went to the emergency. The ER doctor said no and with a CT confirmed.
My doctor did let me say that my tumors were decreased and chemo was working.
But, he says my cancer has metastised to the bone.
Anyone heard of this drugs and the effects?
I have finally got used to Abraxane and right now I'm ok on chemo?
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Hi Kimmie - I just started this mets journey so not familiar with that drug. Maybe check the NCCN website for info? If you find anything out, please let us know. I am curious with what other treatments people are doing.
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Kimmie I can't help either, just dxed in Jan so I know basically nothing. But I can say HI.
Hi Delirium.
Hate that anyone has to be here.
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Carolben, how are you? Havnt seen you in a while. Did my muga scan today, but havnt heard anything yet. I will start one or the other Monday morning. Im glad, I hate not being on Anything!
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I think I relate to you gals and love all the brain storming with treatment options etc.
Cat- Just a question. Is the trial you were trying to get into something that is targeted for you? The reason I ask is that there was a trial that would have been perfect for me but I had been on a platinum drug previously and that made me unable to participate. I completely understand the wanting to get started but wouldn't want you to lose out on a great opportunity because you started on a different regime.
marywh- Was one of your chemo drugs irrenotecan & cisplatin? I don't think its used too often but I had a good response with it. I would love to see something work for you.
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LovieLovie, I don't think Ive been on either of those. I will write them down and mention them to mo. Thanks a lot.
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hi I'm a new member I'm 25 years old and I was diagnosed with breast cancer when I was 22 and a half. I had a mastectomy and radiation and chemotherapy. I thought it was all over until last year when I was diagnosed with metastatic breast cancer involving the brain and then I got meningitis carcinoma 2013. At first I could handle this and I was doing fine. I'm a very positive person but ever since the second diagnosis I been going downhill crying a lot but it was mostly from the side effects of cisplatin. I have lost my hearing and I have to get hearing aids and I will be starting gabapentin for my neuropathy pain. I keep hoping things will get better. I get very moody at times and take it out on my fiance. What can I do to bring my spirits back up?
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Lovie - I am trying for possibly two different trials. The first one is for:
A Randomized,
Double-blind, Placebo Controlled, Phase II Study of
BKM120 Plus Paclitaxel in Patients With HER2 Negative
Inoperable Locally Advanced or Metastatic Breast Cancer,
With or Without PI3K Pathway Activation.If I qualify, I will start next week. If I get in and get a placebo, it is just taxol I am getting and I had a LOT of bad side effects with it first go around. That is why I am not all that excited about it. The second trial is based on expression of a certain protein and you had to already had paclitaxel within the last 12 months, hence, if I do taxol for the first trial, it will make me eligible for the second trial if I express the CDX-011 which they have already sent my tissue to see if it expresses this so I will know if I would qualify for the second trial. That second one is this:
A Randomized
Multicenter Pivotal Study of CDX-011 (CR011-vcMMAE)in
Patients With Metastatic, GPNMB Over-Expressing, Triple
Negative Breast Cancer. (The METRIC Study)Hi Faith - Welcome! I would be moody too if I had to deal with everything you have been dealt. I think sometimes the drugs do things to the mind too so I would discuss this with your physicians (whichever ones you feel comfortable that will listen to you). Maybe they can adjust drugs or give you something to help keep the mood up. Please let us know. (((hugs)))
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Thanks I will mention it when I see him
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Faith- It breaks my hearth that someone so young has to deal with this. Next time someone asks you what they can do tell them to plan 1 fun thing that you can look forward to each week. Go shopping, to lunch, the movies, find a set of swings or picnic in a park. It did wonders for my attitude. Don't worry if you need to cancel there's always next week.
I only had a low dose of cisplatin so I didn't have hearing loss. Is there any chance its temporary?
Have you tried vitamin B6 for the neuropathy? I could feel when it was wearing off and I would go take more.
Cat- I'm very impressed with your research. I didn't like taxol either. It was very hard on my nails so I put tea tree oil on my fingers and toenails every night.
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Faith, I am so very sorry to hear about what has happened to you. Breast cancer is a horrible disease that you do not deserve! Anger is natural, you do not need to feel guilty. Does your fiancé understand? I sometimes think we get more upset when we not expressing ourselves to the right people. Those closest to us are not always the ones to talk to. We are always here for you, vent and scream away. What you have been through is more than horrible. Holding you in my heart. And yes, try to do fun things to keep your mind in the moment, things that make you feel good. Hugs, Renae
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Hi Mary, have been reading here quietly, & think you are amazing! Chemo # 11, and very few breaks in between - gosh Mary!! But I know that scary feeling of not having any treatment. Am hoping so much that the new chemo will work well. Also hoping your muga scan comes back with good news. You really inspire me. When I moan about being on number 3 I will think of you & get off my pity pot!
Am having scans of liver, abdomen & chest on Thursday, see onc on Fri for results. Was stable after 3 cycles of Xeloda, so hoping for more of the same. Have had some unusual vomiting (sudden, intense) so we lowered my dose & hence the scan of liver etc. felt much better on the lower dose - even went paragliding (!) with my son, who is visiting from Israel, just love my boy, lovely being together!
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Hi Ladies,
Just turned 40 and I am newly joining this group as my doctor confirmed my staging yesterday. I have a 13cm tumor in my left underarm area. Started Gemzar/Carbo and just completed my first cycle. So far the treatment is very tolerable. The doctor said we will to do 2 more cycles and then try surgery. The good news is the tumor is definitely shrinking but I am sure that the area was so large with swelling from fluid and the biopsy to begin with. After that she will put me on some type of treatment for six months. I asked about including metformin. She wants to start me on a PARP trial after. She said it is phase I but couldn't find any research on it, I don't think she has anyone on it yet. I need to ask more questions next time.
I am a self employed insurance agent and thankfully my husband and step daughter (part-time) joined my agency in October to help with all of the new affordable care act enrollments so it definitely takes some of the pressure off in the work department.
Teresa
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