Triple Negative Stage IV
Comments
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Carolben: Good luck with the Xeloda! It might be what you need to zap those tumors/nodules!
Hugs to everyone,
Brenda0 -
Karen? I hope you're okay. Write us a note when you have a moment!
~Brenda0 -
Carolben, Im sorry about your progression, but Xeloda is a good chemo. I was on it for awhile with another chemo, I cant remember which one, and I got hand and foot syndrome really bad, but mo thinks it was due to the other chemo, not the Xeloda. Side effects for me not bad at all. Hope it works well for you. You all are always in my thoughts. I started Navelbine Monday, so far so good....0 -
Reggie = regression. I haven't met him either, but I've heard good things about him. Hoping he'll be in my future one day!0 -
Reggie, I hope you are here to stay! Progie, stay away!!!!
~Brenda0 -
Since July (1st diagnosis), my mom was on AC and now she is on doxil. The liver mets are shrinking while the breast is stable. The lymph nodes are a tad bit bigger but they don't know if it is the angle of the scan. She will have another scan on December 4th so hoping for more good news.
She has a rash on her arms that feel like sunburn. The onc says he thinks it might be cellulitis so she is on antibiotics to see if it clears up. Anybody have this before?
Happy Thanksgiving! I hope you all have a wonderful day!0 -
I had an itchy rash that was caused by chemo. My doctor lowered the dosage by 200 mg. and it worked.
Hope you have good news about your mother's scan!
Happy Thankgsiving Day everyone!
~Brenda0 -
I want to meet Reggie again too - met him briefly after 3 months of Taxol, then he dumped me! Ned would be good too, here's hoping Xeloda will lure Reggie back!
How are you doing Karen, hope you are managing the pain & are comfortable?
Mary, good luck with the Navelbine, you could do with a bit of Reggie too! You too, Surfdreams! We all could.
Posted on another thread common to some of us, but just have to tell you that I finally did the skydive & it was totally awesome, would do it again in a heartbeat!!
First 11 days on Xeloda been fine, fatigue creeping back slowly & some nausea, but nothing drastic. Want to pack in doing things while I still feel good, so I'm back at yoga and trying to get a swimming routine going. Sorry to rub in all our good summer stuff while you are in winter!0 -
Hi Ladies, I have read through this entire thread now and am so glad I found you. I was diagnosed with lung mets in October and have had a tough time since then, both physically and mentally. Shortly after the lung mets I also contracted pneumonia so along came pleural effusions of course, in both lungs. I just got out of the hospital this past Saturday where I was for 9 days, I ended up with a Pleurx on each side which a homecare nurse comes to drain 3 times a week. Before the lung mets I was on Xeloda for 4 cycles and the nodes at my collarbone shrunk down to almost nothing but the lung mets grew. Now I have started Eribulin/Halaven. I have read good things about this chemo so I am hoping it works on the lung mets and dries things up too. I keep trying to tell myself it is good that the Xeloda at least worked great on the nodes, shows that the cancer is not completely chemo resistant. Anyone out there have Eribulin/Halaven experience?
Again, so glad I found you all, really need people to talk to that I have this in common with.0 -
Hi! I just read someone post on bcmets.org about having a good reaction to Halaven. I also know someone from New York whose husband posted on TNBC.org that her pleural effusion is gone with the help of Halaven.
My treatment was/is Carboplatin/Gemzar. My tumors disappeared after only 5 weekly treatments!
Take care.
Brenda0 -
I was on Halaven for a short period, but it gave me heart problems so unfortunately couldn't stay on it. I have heard good things about it, though. I had to skip my 3rd round of Navelbine due to low wbc, but will start back on Monday.It seemed to be working well the 2 cycles I was on it though, had a lot of shrinkage on the chest wall tumors and the lymph node. Hope it continues...
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Adnerb and marywh, tumours shrinking or even disappearing that is the kind of great stuff I need to hear, thanks.0 -
Staypuff - I totally agree! To hear from Adnerb and marywhy that there is progress makes me very happy.
Adnerb, I have just completed my first two weeks of Carboplatin/Gemzar and am praying for positive results!
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I've been on the Carbo/Gemzar cocktail since March. I go for a CT scan tomorrow and bone scan next Thursday. We shall see. I'm drinking the lovely "contrast" as we speak in prep for tomorrow's test. Feeling a bit anxious! I was originally set to get this chemo 2 weeks on and one week off. I've had to keep backing off and now I am set back to 1 on and 3 weeks off - due to low platelets and WBC. I'm hoping it's still working for me anyway, as it's been a particularly do-able chemo. I could keep up with it forever (however long that may be) as long as it keeps being kind to me. Fingers crossed and trying to remember to breathe!0 -
wishing you the best test results surfdreams!
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Good luck with your scans surfdreams. Keeping everything crossed for you.
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Thanks for the well wishes. I don't see the Onc. till next Friday to get the results, but I know I'll have to go get a copy of them before then - I won't be able to wait a week to find out. I was always the kid secretly un-taping the Christmas gifts under the tree to see what was in them. When I watch a movie, I always fast forward through the scary parts. I can't stand suspense. It's my turn for the scanxiety.0 -
So you read the last page in the book, too? I do.
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Oh absolutely! It doesn't ruin it at all for me to know the ending.0 -
Surfdreams, I am hoping and praying that your results are the best that they can be! Carbo/Gemzar since March! No wonder you needed to taper to 1 week on 3 weeks off. This combo does a number on my blood counts as well. So instead of 3 weeks on and 1 week off my body has only been allowing the nurses to do 2 weeks on and 2 weeks off!
If my next scan is still NED I might get a chemo holiday. That may not be till February, though.
Hope you all are having a good weekend!
Brenda0 -
I am currently on Xeloda. Side effects-are bothersome but do able. Hoping to not go to other drugs. I have been given the horrible "death statistics". Anyone out there beat the standard 2-4 years statistic?0 -
Maybe 6 years for me. Im saying maybe because there has always been a questionable area in my liver, that they now classify as mets..but its been there since I was first diagnosed.
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texascc......that's very interesting! I've not heard the 2 to 4 years before....did that come from your onc? Most stats I read ( on Dr Google!!!!) say average from prognosis is 9 months!!!! I'll take 2 to 4 years though....... I'm 2 years this May coming since secondary diagnosis & to be honest, very scared of 2013!!!!!!!'
Surf dreams.....good luck with your scans....sending hugs.
Adnerb.....got everything crossed that your next scan is NED.....
(((Hugs)))
Karen xxx0 -
Yikes, 9 months that's scary Karen, I heard 1 to 3 years. What are you feeling Karen? What makes you worry about 2013? (did you mean 2014?) You mentioned more fatigue, is there other stuff going on? Apart from having stage iv bc that is! LOL. Sorry, that's a big ghoulish.
When I asked my onc his prognosis he said "months to years". They go days to weeks, weeks to months, months to years. Was only diagnosed stage 4 end of Jan this year, but they said the mets may have been in my lungs all the time, but so small as to not be visible on x-ray. So do I count from original diagnosis of May last year or Jan this year? Whatever, I'm not going anywhere fast, apart from fatigue and the odd nausea attack out of nowhere, I'm feeling good, so I get a bit sob, but not enough to really bother me. I've always been the one to break the rules, so stats don't really do it for me. I've spent a lifetime making sure I fit no ones' stats, I'm not going to start doing it now!! I'm really just trying to get the most out of each day - conciously find something to really smile (inside & out) about, notice something beautiful, make eye contact and smile at a stranger, etc. But I have my days when I hunker down at home and potter and rest and do very little.
TexasCC I'm also on Xeloda (have you gone to the All About Xeloda thread?), just finishing up first cycle tomorrow. So far it's been easy apart from what I mentioned above. It's early days, I know, but Karen's experience is it's very do-able.
And look at what we're saying!! "I could do this chemo forever" It's bizarre, but I so get it. To have one chemo at a dose that has few se, that will keep me with the stable boy - yes! What a new normal we have!
Surfdreams, holding and crossing everything for good scan results. Scanxiety is horrible. I get the lab to e-mail me a copy of my report when they send it to my onc. Once I got the results 3 hours after the scan!, but I get them the same day. I cannot read the end of the book first though!!
Tomorrow I see my onc and get the next cycle of Xeloda to take home, it's kinda nice not to be having long IV chemo for a change.
How's the Navelbine, Mary - how often do you get it? Hope it's being gentle on your system, and your chest tumors will clear up to show you it's working!0 -
Karen (OBXK Karen) if you read here, know I'm thinking of you and hope you are comfortable and the pain meds have been sorted out and will keep you that way. I miss your input here! Big hugs0 -
This past week hasn't been good. Im paying for the extra week off with what they think is an inflamed liver (hes not saying progression in the liver but the way all the other tumors are growing at a really fast pace) Im afraid it is. wbc was good enough today to do chemo, so hope it gets them under control again.
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Carolben......yes, I did mean 2014!!! I'm scared it's the year my time will come......
My onc also believes my mets have been there since the beginning - October 2010 - as micromets. So I'm not sure if I've been stage 4 since October 2010 or May 2012 when I was officially diagnosed....sigh!
Last March he said my prognosis was 6 to 12 months & then when the Xeloda worked he said that changed things. So who knows. I've been feeling quite anxious & 'scared' lately.....maybe I should get the bloody scan over & done with!
Anyway, take care & hoping you get a good run out of Xeloda & very little side effects....:)
(((Hugs)))
Karen xxx0 -
The 9 month number is the median survival for those with triple negative mets. I refuse to accept it! We are not stats.0 -
Well, Im having a good run if nine months is the median......I hate this damn disease!!!!!!!
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What I've found on Doctor Google is 3 years average for stage iv. Since mine was dx in 2011, I'll choose to ignore those stats. I like what others have said... those statistics are out of date, they don't take into account if death was due to a different cause, everyone is different in the way they respond to treatment, it doesn't take into account the person's age, yada, yada, yada.
I was able to get my CT results faxed to me today so I didn't have to wait till Friday. I never took a speed reading course, but I guarantee, I never read so fast as I do when I read my scan reports. STABLE. Yeah, Baby!!!! I still have to get my bone scan on Thursday, but I worry so much more about the mets to the organs than I do the mets to the bones, so I'm not dreading that one so much. And I know I only have to wait a day for the results as I see the MO on Friday. Wonderful Christmas gift to me!
I'm holding all you girls close in my heart and thoughts for good news of your own as well. You don't know how much your support helps. I'm there for you as well. Best wishes for your upcoming scans, chemos, visits. Thanks again for your kind words.0
