Triple Negative Stage IV
Comments
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Mothersdau., I see your in SC, I live in NC and my onc is a very good one. If you are looking for one closer to you, and would be interested, pm me and Ill give you his information. Hes at northeast Oncology in Concord. Hes on top of it in my opinion.
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Hello, I just wanted to say hi. I am currently NED but having a hard time relaxing and enjoying it. My next lung CT scan is in October. (My lung met was removed in April). I keep expecting the other shoe to drop. I have the start of arthritis, with lots of aches and pains. Every twinge is scaring me that I have started bone mets. How do we get past the fear?
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Geesh penny I wish I had the answer I know it doesnt help you right now and you would like some positive answers.I hope there are some coming.I have not yet been dx with mets but its probably coming and I am a bundle of nerves 24/7 waiting, silly as it sounds. I could use some coping skills right now..this tn thing is a killer in more ways than one. When dx almost 15 yrs ago eith er/pr positive I dont remember being this afraid even though I had lost a sister to bc 5 years earlier
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Oh, Iknow how you both feel.being blind-sided with mets is not a good feeling, and even though I know my chemo is working, (I cant say Im fortunate to have mets on the chest wall,but maybe I am in a way,cause I can see if they're shrinking or not). every ache and pain becomes a worry.
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Hi, I have been on Taxol once a week for three months and then the most recent one was FAC once every three weeks for three months. Just finished that on on June 27. Have you been on any clinical trials? It's hard to know which one to go to next! Any advice? Thanks, Debbie
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No trials for me, but I had a good run on abraxane, now Im on Ixempra, which seems to be working pretty well.
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The clinical trial for copper depletion looks promising for TNBC. Too bad it isn't for people with active mets. It looks like it could be good for NED people though!
http://www.cornellmedicine.org/trials/cancer-and-blood-disorders/solid-tumor/breast-cancer/a-phase-2-study-of-tetrathiomolybdate-tm-in-patients-with-breast-cancer-at-moderate-to-high-risk-of-recurrence.html0 -
MothersDaugter - thank you for that link . I'm going to repost it in TN
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HI Kassie61,
I have been on 3 months of taxol and 3 months of FAC. They are telling me they didn't work because I have a lung nodule that over 1CM on my chest wall. Just had biop on Friday and will hear results in 2-5 business days. They are going try to examine biop to see what drugs may be affective. Not sure how they do it. I am at MDanderson in houston. My husband wantst to take me to Boston because Harvard has a few clinical trials going on right now. Md has one and it has a couple of the drugs in it that the FAC had and I did not do well with SE so I don't want to that. My doctor never mentioned the Xelada is that a good drug to try before clinical trials?
Thanks, Debbiej
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Debbie - I did Xeloda for 6 rounds, Did not work for me, but it was very tolerable. There is a good thread here, I think it's called "all about Xeloda".
You can also sign up at the Xeloda website and they send good info and have a 24/7 hotline. Best wishes!0 -
Ive been told that it is. The time I tried it I couldnt take it because of hand and foot sydrom which was awful, but alot of people dont get that. I was on abraxane, but I think that is a taxane so may not work for you. Maybe you should ask your mo about xeloda. It comes in pill form, and the makers will help you out finacially with it if you meet their criteria. Side effects for alot of people are minimal.
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Debbiej.....I have found Xeloda very tolerable.. I've been very lucky with very few side effects but the best part is not having to go for infusions!!!
As I've said it is working for me, first scan after 3 rounds showed progression in the liver & after another 2 rounds scans showed shrinkage & then the best part, after another 4 rounds the liver mets are barely visible....:) I'm on 2000mg in the am & 1500mg in the pm & on 14/7 schedule. It hasn't shrunk bone mets ( I have loads) but has kept them stable.....good enough for me.
Obviously it doesn't work for everyone as OBXK has said (((hugs))) Karen.
It's worth asking your onc about it, as we know all chemos are like a lottery.....no one really knows what's going to work.
Good luck.
(((Hugs)))
Karen xxx0 -
Hi Ladies,
Just checking in to let you know that I am now on month 24 with Navelbine. I have been stage 4 for 49 months now and am feeling very good. CT scans indicate almost complete resolution of metastases!!!
I am thrilled!
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Good to hear from you lotussblossom. It's funny, but I was thinking about you yesterday and wondering why I hadn't seen you around. Glad to hear you are doing well.
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Marywh,
I also was having dizzy spells and waking up every day with a head ache. Had a brain scan and it was fine. I think the oncs are just being cautious. Good luck.
Gigi
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Carolben - sending best wishes for your last taxol treatment today. Now you can focus on that visit to your son!
Lotus blossom - great news that you are so well and Navelbine can work for so long. You obviously tolerate it well.0 -
Lotus - I am over the moon with happiness for you!!!! Enjoy the feeling.
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Lotusblossom.....49 months with triple neg mets & still doing well is fabulous to hear!!
Gives us all great hope
Glad the brain scan was clear.....
(((Hugs)))
Karen x0 -
Marywh,Txgigi & kazzie61-
good to hear your brain scans were clear - i hate how cancer makes us second guess every ache or pain we have
Marywh- have they resolved/ diagnosed your thyroid and bug problems yet?
Txgigi- have you started abraxane yet? I hope it suits you as we'll as xeloda did.
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The thyroid problem is Hashimotos disease, which could have been caused by the radiation I did 4 years ago. I really dont know quite what it is, They said they would explain it when I go in for my follow-up. Its a type of auto-immune disease. Bug problem has stalled as they dont want to start me on anything else until I get this thyroid thing under control. I just know according to all my bloodwork, Im allergic to all stinging insects, and to keep my epi-pin handy. I swear if its not 1 thing its another!
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Marywh - sorry about the additional diagnosis. I remember when I did my first chemo (ac) and my medical oncologist going through with me all the risks ( you have a
1 in 50,000 chance of getting this this etc). My radiation oncologist didn't do this - just said I should do it. I always thought my medical oncologist was overly pessimistic but she is the only one who predicted at stage I, I could still end up stage iv so I guess in the end she was the most honest even if it is not what I wanted to hear.
Not sure if this helps but my mother had an underactive thyroid removed 25 years ago and is on daily tablets as a result. She never had any trouble with either the op or the follow up drug taking - to the extent that it has been pretty much been a non issue for the past 25 years.0 -
My cancer center just called, I have the antigen, for the drug trial (Xtandi) Next up more screening. In the mean time I am fighting a bad case of poison ivy! Dr. gave me a shot yesterday and a prednisone taper pack. Today, the itching is tolerable. Looks horrible.
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Karen......that's fabulous news re the trial
Fingers crossed for great success xxx
Not so good re the poison ivy....hope it clears up quickly.
(((Hugs)))
Karen x0 -
I hope your trials work well for you.I havent heard of this drug but will look it up.its about yime there were more trials gor us triple negatives.btw what is this antigen and how can I find out about it? Please keep us updated
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http://clinicaltrials.gov/show/NCT01889238
Here's a link to the trial.0 -
I hope this trial works well for you, Karen!
My mom is meeting with Lisa Carey on Thursday. I guess they are having a tumor board on Wednesday and will have her records. They will be talking about course of action and possible clinical trials she may benefit from. I'm not sure how that works since she has only gone through 3 AC treatments and will be doing Taxol after that. They told her that they would probably do a few tests but not sure what kind on Thursday as well. Guess we'll just have to wait and see. Seems like there is a lot of that these days.0 -
Well, I think another chemo has bitten the dust. Went ahead and did Ixempra today, but my tumor markers are up and liver enzymes are really high, as well as tumors on the chest wall are getting bigger. Scans are scheduled for sept.3 but they said they may move them up, according to the rest of my tumor markers that will be back tomorrow. Such a bummer........
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Sorry to hear your news Mary. i hope the other tumour markers come back ok but they bump up the scans anyway - you are already living in a state of scan anxiety so may as well get it out of the way.
How was your trip away?0 -
Sorry to hear that Mary. Hoping and praying for the doctor's wisdom, knowledge and guidance on the best course of action!
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I started the xtandi drug trial yesterday. It's an oral drug. 4 pills once a day.
Awoke feeling a little drugged and slight headache.
I sure hope this turns out to be a good treatment for those of us who are chemo resistant.
About 20% of women with TNBC are antigen positive.0
