Triple Negative Stage IV
Comments
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If a port is put into the subcleavian instead of the jugular as the literature recommends, it may be pinched between the clavicle and the first rib, which causes it to rupture. I had trouble with my port and an odd pressure sensation when they flushed it. It was dx through a dye study.
I had it replaced today - and put into my jugular.
Wishing you well...0 -
Jackie, you are certainly a huge inspiration - good on you, for getting thru the treatment and getting those mets hit, sounds like it was really rough. Thank you for sharing with us, it gives me much hope.
OBXK, I so get your feeling like you never want to see a doctor again! These days even when they take blood for the weekly test before chemo, my body just wants to scream - please dont stick any more needles in me!! I've never been afraid of needles, but am becoming a real sissy about it. Of course, we grit our teeth and just do it anyway! I also have a port, have heard they can give trouble, hope your port replacement goes well.
Such amazing, strong women, you are all an inspiration to me. I had my week off chemo this week and am visiting family, which is so good, we're all very close, but live far from each other!!
Debbie, good luck for the MRI! I had a bone scan last week, which was, thankfully, clear! It's the first one I've had and they want it for a baseline.
Sending all love and strength
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Another Stage 4 Triple Neg here.....
Primary was diagnosed Oct 2010, multifocal, grade 3. Had 6 x TC chemo followed by BMX & reconstruction.
May 2012 diagnosed with bone mets (had pain in spine & shoulder) then had radiation which helped with pain.
November 2012 scans revealed 'major metastatic skeletal progression' so started chemo.
I had 3 cycles of Paclitaxel/Gemzar & then scans showed slight progression of bone mets but it had spread to liver.
So now on cycle 2 of Xeloda, scans after cycle 3 to see if it's working! Fingers crossed!
Hugs to everyone.
Karen x0 -
And forget to say I was 49 when first diagnosed & I have been tested for the BRCA gene & I don't have it....
Karen x0 -
Thank you for the warm welcome everyone
Welcome Karen hope Xeloda kicks butt for you!
Debbie I have beem doing taxol for almost a year it does take its toll but in my case is working wonders so keep trudging along, good luck with scans next week.
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Karen - I hope the Xeloda works for you!
Jax - so glad you have been able to do the taxol for such a long time. It gives me wicked neuropathy.
Has anyone done carbo for more than 6 rounds? Anyone have purpura?
Wishing everyone the best day possible.0 -
Thanks Karen......I so hope the Xeloda works for met too!! My prognosis isn't too good so really need something to keep me stable for awhile....:)
Hugs to everyone.
Karen xox0 -
I have scans tomorrow, yuck! How often do you all get CT scans?
Hugs, Renae0 -
Good luck with your scans Renae
Since I started chemo again I get scanned every 9 weeks...to keep track of whether or not the chemo is working.
When I was originally diagnosed with mets I was scanned 3 monthly so they could check for progression.
How often are you getting scanned & how long have you been on your current chemo?
Thinking of you..
Karen xox0 -
We are with you Renae xxx
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Renae good luck with scans..I get scanned every 3 months brain MRI and CT
I have been on carbo with taxol for almost a year sorry don't know what purpura is guess I will have to look that one up
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I was scanned after 3/6 treatments and I will be scanned again after tx 6
Renae - I hope your scans show a regression. Fingers crossed.
Jax - the carbo is really hitting my blood counts, so I think I will stop at 6. I think my purpura, is from my low platelet count. I'll ask about if tomorrow.
I've had three weeks off - makes it difficult to get back in the grove.
Hugs... OBX Karen0 -
Well got the ok from my onc. for 2 weeks off chemo so Im off to sunny Fla. on the 19. Iget to stay a week so will be in Hollywood for 3 days and then on to the Keys. I am so excited. Ive never been to the Keys before but it will be so much fun to be somewhere tropical and warm even if I do have to go bald and chubby!
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Mary - wonderful news! I hope you have a great trip. If you make it to Key West, there is a famous bar there that has a webcam - you'll have to go - tell us when to look and we'll all wave back at you
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Oh that would be really fun. As of right now we are having trouble finding a nice place to stay thats not going to cost an arm and leg, but we will be in the keys somewhere. We may end up sleeping on the beach lol.
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Have you Thought of renting a RV, once you get down there? Start a blog with a PayPal button? Or have a friend set up a FundMe page?
I'm sure you have many friends who love you, who want to help make your dreams come true. I know it's awkward - but a lot of people do not realize how expensive cancer treatment is. Just my extra gas expense, eats a big hole in my budget.
I hope you are able to have the trip you've always wanted. Now, if you end up sleeping on the beach - check the tide chart0 -
Help please!
My onc wants me to go on Avastin, together with the Paclitaxel I'm getting now. I'm TNBC with mets to both lungs. Had 4 tx of AC last year and 25 rads.
Does anyone have any experience with Avastin for mets? Need to make a decision, it's hellish expensive, will totally deplete my medical oncology benefit cover. Is it worth it? From what I read the figures from trails are not that great for TNBC mets, no longer survival rate shown.
Anyone have any info for me please?
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Wish I could help but I dont know anything about it. Im sure someone will be along soon that can tell you something. Good luck.
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I was on Avastin for two and 1/2 years. During those years I was stable. I changed Oncs and she immediately took me off saying I was on it too long and it can damage your heart.
All I can say is I guess it worked for me since I was on Avastin, Zometa and Xeloda and stable while I was on it. But then again was it the Avastin that kept me stable. I don't know. I have mets to my spine.
The Avastin gave me high blood pressure. Onc said my pressure should go back to normal after six months of not being on it. I still take blood pressure meds and I have been off of it for over a year.
Sorry I can't be of more help.
Gigi
PS It also gave me horrendous nose sores
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Thanks for your input, Gigi,it just doesn't seem to me that they have positive proof about the efficacy of the Avastin. It's such a big decision to make, just when I feel that I'm too uninformed yet to make it, and the info I get is not conclusive.
But then I guess in a way they are still testing this stuff on us - I am grateful that we have quite a few chemo options to throw at this nasty!
Thanks, too Mary - I know that between us all we've all experienced most of all the treatments available.
This is such a tough path at times, I get so much inspiration from all you, thanks for being here.
Love
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Hi Carolben,
I've been taking Avastin and Taxol since January. I haven't had scans yet, so I don't know anything about effectiveness for me. Liver numbers have been better, but that's all I know. And as TXGigi said, how does a person know which drug is doing what? Good luck making your decision. I agree with you, that it's good to have more medicines available to us. We've not exhausted the options, and there is hope in that.
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Thanks Judy, how do you find the side effects?
Am thinking of continuing only on the Taxol for now, when we do the scan in 2 months we can see if it's working and I think then I'll re-evaluate it all.
Otherwise, as you say, how do you know which drug is working or is the combo better?
Changed my pic to the last one I had taken with all my hair, it's falling out at a rapid rate - again, dammit!
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Hi,
I've also been on Xeloda / Avastin since Jan (mets to liver). I too had read all the reports saying it wasn't that effective, but my onc said that he believes that it can have some positive ffect when used in conjunction with Xeloda (ie it improves the performance of Xeloda). But he did almost say too that it's worth a try as it doesn't really do any harm. I haven't had any side effects at all from Xeloda / Avastin apart from sore palms and soles of my feet (which is the Xeloda anyway). Oh, and major abdominal cramps on the day of the Avastin infusion. Too soon yet to tell whether it's working or not, plus as you say I wouldn't know whether it was the Avastin or the Xeloda working. Sorry I can't be much more help than that.
Karen x
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No advice either. Wishing you all the best.
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Thanks Karen and OBXK, I think I'm going to continue on the Pactilaxol till they do the next CT scan in 2 months and see what it's doing. If it's not working then I'll re-evaluate.
You guys have been a huge help, thank you all
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Happy Spring!
Today I finished the last infusion of my carbo/gemzar plan. Will have scans 4/1.
My brand new port - would not give a blood return on the outside lumen - GRRR! I see the surgeon for my follow up next Monday.
My good thing for the day ... I had my favorite chemo nurse!
Have a good evening...0 -
Hi all,
I am an old hand at TNBC - see signature but a first timer at Stage IV.
I was recently diagnosed with lung mets and will start chemo (Taxol and Carboplatin) next week for an indefinite period.
I am a 40 year old married mother of 2 sons (aged 12 and 9).
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Hello ladies, could do with some input from you all. I was diagnosed dec 11 stage iv from the start, mets to liver, and was ER+PR+HER+. Did chemo immediately, with no surgery, and I"m back on Taxol again after Tamox failed and new biopsies showed that I am triple neg. I am being treated in a cancer research hospital and they tend to take an aggressive approach to treatment but I'm balking again at the thought of mastectomy. I just don't know if it's going to worth it given that I am now triple neg and I may have less time than I originally thought. Do I really want to spend a good portion of my remaining time having major surgery and recovering from it? Then again, (I have heard) new reports coming out saying that mastectomy even after stage iv can prolong life span. Any thoughts anybody?
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Welcome gabpj. Sorry that your cancer has spread. I hope you have good results with the taxo/carbo cocktail.
Anko - For me, the recovery from my bimx was not difficult. I went to visit a friend on day 4 and out to lunch on day 6. Best wishes!0 -
Anko
More recently, some doctors believe that removal of primary tumour in the breast will reduce the tumour load and possibly, kill off the BC stem cells. There has been research that patients who remove the primary tumours do better in the long run, but there is argument to that research as they'd cherry picked the candidates that will do well anyway (surgery or not).
My breast surgeon has told me that primary tumours do not respond well to chemo as they're slow growing unlike mets, which is very fast growing.
For me, it was a psychological effect as I just wanted the ticking time bomb of my body.
The surgery was pain-free in my case. I was in and out of the hospital in 3 days. Recovery took about a month with a bit of drainage required.
Hope this helps.
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