Triple Negative Stage IV
Comments
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Thank you all. Thanks smiley for telling me your mets are similar to mine. I don't even know if mets to lung membranes make sense or not, just writing what they tell me. One thing I meant to say is that while my initial dx was HEr2+ is small clusters, so treated as HER2+, my second dx and the mets are TN. I will definitely let everyone know my treatment plan as I would love opinions on it!
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Hi ReadingMama:
My cancer was er+\pr+ and after taking some hormonals and the cancer progressing each time my doctor felt it had changed to TN and so now I am back on Taxol chemo 3 weeks on one week off and after two months scans showed total remission in organs and bone healing. There is hope for you too, you will probably go on chemo, I find the SE's very manageable and hope you do. Keep us posted.
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Hi, okay treatment plan proposed! Carboplatin and Gemzar. Hope I am spelling them right. Carbo once every 3 weeks and Gemzer 2 weeks on and 1 week off. So Carbo/Gemzer, Gemzer, week off. Plan is to start next week. Lots of nausea drugs as I had issues with that on A/C and Taxol. Will put in a port, but probably not in time for first infusion. Also will start Xgiva for bones once a month.
Thoughts? Common first treatment for TN Mets? Second opinions?
MO did mention going back on Taxol as a possible future treatment and possibly reducing to just Gemzar if the combo reduces the tumors. Will get a PET scan after 3 cycles, so I guess that is 9 weeks, unless my pain does not lessen than after 2 cycles.
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ReadingMama: The Carboplatin/Gemzar combo works very well with TNBC! I was in remission after 3 months of that combo. I am not sure why it came back so quickly. My theory is that my cancer "morphed" into ER positive while I was getting the combo. So now I am on Abraxane, which is a taxane, like Taxol and Taxotere. I am happy to see that you have a treatment plan! Good luck and keep us posted!!
Hugs,
Brenda
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ReadingMama,
I did carbo/taxol and saw shrinkage after 3 cycles. They don't seem to do gemzar here in Canada. Its apparently approved but needs special permission...my guess is its more expensive and our government wants the doctors to use other things first. Anyways I am happy to hear you have a good plan in place. I hope it is helping you feel some control too.
Kelly
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ReadingMoma - my first mets tx was taxol. I was supposed to get 3 weeks on, 1 week off, but my tumors weren't regressing so I had no week off. I did 18 weeks straight taxol before I stopped. Taxol slightly reduced a few nodules but mostly just kept it stable. I was getting more severe side effects like neuropathy and my neck nodules started progressing, so I stopped taxol. I then found a clinical trial at Vanderbilt which I am now enrolled and it is working great. My neck nodules are almost gone after 5 weeks. I'll get a scan in 3 weeks to check everything.
It sounds like you have a great plan, but you should look into clinical trials. There are more clinical trials available for people just diagnosed with mets as a majority of trials limit the amount of tx you can get before starting a trial and if you get too many, it makes you ineligible. There are a few good trials going on too as a first-line treatment for mets BEFORE you begin regular tx routines. Go to clinicaltrials.gov to do a search
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which trial are you doing cat?
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Delirium - I am doing Cisplatin and GDC-0941 (PI3K inhibitor) at Vanderbilt but the trial is supposed to open at other sites soon. I am going to transfer to Emory in Atlanta as soon as they start participating in the trial. Right now, I am driving or flying every week from Georgia to Nashville. It is 4.5 hrs one way.
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thanks cat. I'm going to look I to it. Kind if feel like I'm on my own looking for trials and such. That travel must be grueling! But so happy it's working for you.
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Cat - thanks. Yes, I was looking for trials last weekend, but didn't find a lot. I wrote down the trial you mention, Cisplatin with GDC- 0941, but I also wrote down that you needed up to two prior failed chemos's for mets. I will have to look again at that one. I didn't write down the sites. Most of the trials I looked at where in that category where you needed, or could have 2-3 failed chemo's for mets. Good to know if this doesn't work.
Thanks Kelly and Brenda, I start on Tuesday and I can't wait. I have been surprised in the increased intensity of my symptons (coughing, shortness of breath) after just one week.
Cheers,
Meegan
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Meegan - the trial is for people who have had up to 2 tx for mets, not that you HAVE to had 2 tx's and it doesn't say anything about failed treatments. I means if you have had more than 2, you would be ineligible. I only had taxol before starting the trial.
Delirium & Meegan - They only have the trial at Nashville right now but are supposed to be opening other sites soon, so you should keep checking back at clinicaltrials.gov. My doc said that there was eventually supposed to be 5 trial sites. I have an appointment at Emory Winship in Atlanta on Thursday to find out if they are starting the trial there soon so that I might be able to transfer.
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thanks for the info cat. I just started my second cycle of ixempra/xeloda and it is kicking my butt again already. I have to see what my brain mri looks like in a month though before I can consider changing. Ixempra and xeloda are thought to maybe cross the blood brain barrier. Hoping I can get gamma knife after a couple months. But I had to focus on my chest and lung first. So much going on at once! Is anyone else taking ixempra? I have not found hardly anyone who is.
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Hi All,
I had a consult with my radiation oncologist this morning. Turns out that the lymph nodes in my neck are not exactly stable. One grew about 2 mm in an 8 week period between CT scans and is pushing into my jugular vein low on the right side of my neck. (The image shows the vein reduced by about half). While he thinks we could take a wait and see approach, it is definitely growing and he can feel it and others when he examined my neck. I asked my favourite question - if you were me, what would you do? He took a few seconds to answer and said I/he would treat them now while they are still relatively small, it will be easier with less potential for negative effects than if they are larger.
He is recommending IMRT (intensity modulated radiation therapy) over 5 weeks. They will create a face mask that will protect my face/head and keep me positioned along with the tattoos. While I will have some salvia related side effects, he says that the tumours are low on the neck and long term my taste should be preserved. Besides fatigue and skin issues, my voice will probably change a little and I will need to keep well hydrated. He estimates a 5% risk of long term negative effects. He says that treatment today is much different than 5 to 10 years ago. He will map out a treatment plan using small targeted doses so we can keep tabs on any potential problems. I have agreed to go ahead and he will review the specific plan with me before we begin and feel good about my decision. I welcome any advice or comments!
Kelly
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Kelly - you might put out a message on the TNBC website asking if anyone else has had this treatment so you can compare. I would be really scared to get radiation on my neck. As you know, I also have nodes on the side of my neck but none of my doctors have suggested radiation. I think I would certainly would get another opinion before proceeding. My neck nodes are almost gone just with getting chemo. Keep us posted!
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Hi Cat, I have posted this to my two Facebook groups, both stage iv and one TNBC specific. Some people report good results, some have had bad side effects. It seems that this IMRT method is a lot safer than standard beam radiation.
What TNBC website are you suggesting? I would like to post some questions there. Thanks! Kelly
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Hi all,
I am much better frame of mind. Have had my 3rd round last Thursday. Doing well. My previous experience with chemotherapy was back in 1978 and it is a world of difference now with all the support I am getting and the drugs for anti nausea and vomiting work fine. No vomiting and very little nausea that is manageable.
I have several good days every couple of weeks. And that is good news too.
I am surprised and happy with the results so far. And hopeful that my blood work will hold up and we can stay on track.
Love to all, And thanks for your support in this.
Dolly
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Good going, Dolly!
Kelly, I think Cat is referring to tnbcfoundation.org. Good luck!
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Dolly, glad to hear your good news.
Brenda, thanks I will check them out.
Kelly
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Sorry, I've been away - having a bad week, and this is my week off ugh! Kelly -Yes, Brenda is right that is the website I thought might give you some information.
Dolly, so glad to hear you are doing better! Thanks for letting us know. Hang in there- I know you can do it.
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What a nerve-wracking day!
I almost did not make it to my ct scan
appointment. There was a problem getting someone to access my venus
port. But the scan went on as scheduled.
Later in the day I was
in a car accident. It was the other party's fault, but she insists it is
mine. I have an appointment tomorrow to have my damage fixed (front
bumper and headlights!). I was not physically hurt, but I felt messed up
mentally.
When I finally got home my younger says, "Your doctor left a message." Oh no. Not today. Today is my unlucky day.
Doctor's
message: "Good News. Scan looks much better. Will talk in greater
detail when I see you Monday. We will decide whether to continue or
change to monthly injections."
Wow, to me this is good news in a
very huge way. This means the new chemo has been working and I get to
pick from two things: more chemo or monthly injections. I wish I could
say, "No treatment!" but after two weeks of no chemo I feel great again.
I will find out what my doctor thinks on Monday.0 -
Brenda, what a day you had! I am glad that you were not hurt in the accident. I am so very happy to hear the good news that your chemo is working!!! Hope today is uneventful
~Kelly
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Wow, Brenda, what a day. I would be stressed! But, so happy to hear about the good CT! Great news! I have my CT on Monday and should get results on Tuesday. Tuesday, I start cycle 3 of the cisplatin/GDC drugs. I'll be flown to Nashville again so I don't have to drive - yea!
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My CT results were amazing. Radiologists called it "complete response" even thought there are just a few little spots - not sure they are even cancer. Woooooo Hoooooo! Clinical trial is working wonders and I am feeling better too.
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Congratulations!!!
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Oh Cat, that IS the most amazing news! I am so very happy for you.
Kelly
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Cat,
I am so happy for you, too! Cheers!!!
Brenda
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great news Cat!
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Thank you everyone for the cheers. I sure hope this lasts. My neuropathy is getting worse so eventually will have to stop the Cisplatin but they said I would continue on the PI3K inhibitor to help keep the cancer at bay, which is just daily pills. Still waiting to get into Emory in Atlanta instead of having to travel to Nashville every week.
I hope everyone finds their right treatment!!
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Did you guys know this?
A cancer’s stage does not change
An important point some people have trouble understanding is that the stage of a cancer does not change over time, even if the cancer progresses. A cancer that comes back or spreads is still referred to by the stage it was given when it was first found and diagnosed—information about the current extent of the cancer is added to it.
For example, let’s say a woman was first diagnosed with stage II breast cancer and the cancer went away with treatment. But then it came back with spread to the bones. The cancer is still called a stage II breast cancer, now with recurrent disease in the bones. If the breast cancer did not respond to treatment and spread to the bones it’s called a stage II breast cancer with bone metastasis. In either case, the original stage does not change and it’snot called a stage IV breast cancer. A stage IV breast cancer refers to a cancer that has already spread to a distant part of the body when it’s first diagnosed. A person keeps the same diagnosis stage, but more information is added to the diagnosis to explain the current state of the disease.
This is important to understand because survival statistics and information on treatment by stage for specific cancer types refer to the stage when the cancer was first diagnosed. The survival statistics related to stage II breast cancer that has recurred in the bones may not be the same as the survival statistics for stage IV breast cancer.
At some point you may hear the term “restaging.”Restaging is the term sometimes used fordoing tests to find the extent of the cancer after treatment. This is rarely done, but it may be used to measure the cancer’s response to treatment or to assess cancer that has come back (recurred) and will need more treatment. Often this involves the same tests that were done when the cancer was first diagnosed: physical exams, imaging tests, biopsies, and maybe surgery. After these tests a new stage may be assigned. It’s written with a lower-case “r” before the new stage to note that it’s different from the stage at diagnosis. The original stage at diagnosis always stays the same. While testing to see the extent of cancer is common during and after treatment, actually assigning a new stage is rarely done, except in clinical trials.
http://www.cancer.org/treatment/understandingyourdiagnosis/staging
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What are the implications? For example, as I read your signature, I am thinking that it needs to be changed? Is your BC still stage 4 or is it stage 2 with metastasis to the lung?
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