Triple Negative Stage IV
Comments
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Karen, thank you for your kind words. When does your world top spinning? Is this ever going to get better? I mean dealing with dying so soon? Will there ever come a time when it's not in your head, you are able to eat, and you are worried about other things?
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Brenda, you know, Ive been venting here alot, but I do know that you do get used to the idea and can live a pretty normal life. This past year has been basically a really good year despite progression. I dont care what people say but your life outlook does have alot to do with how you feel. Some days are worse than others. These boards are my lifeline.This is basically my social life now, other than my family, because everybody understands what youre going through. I have met some wonderful people who I can tell anything and everything to. I felt like a pariah going to sapport groups cause I was the only stage IV person there.
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A pretty normal life sounds good, Mary. I know it will never be the same, but to hear someone like you say "normal" is a huge thing.
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Adnerb - I am the type of person that is able to accept things. Once you get to that place, life just goes on. Meals to cook, laundry to do, celebrations and spending time with those you love best. On bad days, you learn to appreciate the good minutes, a hummingbird at the window, a card from a friend. Give yourself time love and stop in here, whenever you get frightened, or angry or just need us to pull up a chair at your pity party.
MRI is Thursday. Results Monday. I hope this doesn't bump me out of my drug trial.0 -
What drug trial? Tell me more about it, please, or send me a link. Thanks.
Hope your mri result is good. Fingers crossed.
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Fingers and toes crossed for your mri, Karen
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Hi Ladies, I am new to your triple negative area. I had always been HER+. It sounds like I will start Taxol weekly on Monday. I did do this last year with herceptin and did pretty good on it. Just mouth sores were my main problem.
I have several nodes (neck and mediastinal) and a spot on my liver. I am just so freaked by the spot on my liver!
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Brenda - here's a link to some info:
http://m.seekingalpha.com/news-article/6923292-medivation-and-astellas-initiate-phase-2-study-of-enzalutamide-in-breast-cancer-patients
It is Xtandi, it is used to treat prostate cancer. I go for my first appointment since starting it, next Monday. SEs so far are fatigue and muscle/bone pain. Doable. I started it on 8/26.0 -
I hope you do very well, Karen!
Hugs,
Brenda
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Oh my, have you seen this article? Sounds very promising!!
http://www.curetoday.com/index.cfm/fuseaction/article.show/id/2/article_id/2157
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Just had my first session with gemzar/carboplatin. Gemzar again next week and the week after if my body allows it.
How's everyone else doing?
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I start Gemzar Monday will do it continuously for 6 weeks, if my body can stand it. Hope it can. This is the first time in 6 years I really feel like I have cancer. Ive been off chemo for too long. Hope everybody else is doing ok.
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I've been on Gemzar/Carbo since March (when I had progression on Abraxane). Just had scans last week. CT & Bone scans showed stable. yeah! This, even with getting kicked out of chemo for the month of July, and backing off the days I take chemo because of poor platelet counts. I love the stable boy. I've never met Reggie, but have heard great things about him. Ned is only in my dreams, but the stable boy is a great reality at the present time! ;-)
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Surfdreams for some reason I didnt realize you were tn. I start the Gemzar tomorrow as a single agent, six weeks on. Keep your fingers crossed, next step might be clinical trials.
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Best wishes to you Mary, that the Gemzar is kind and very effective for you! Reading your DX bio, I'm curious/nosey. Our bios are very similar at initial diagnosis. But I notice you're IV from the start, and I was Stage II. I'm curious why the difference do you think? If you don't mind me asking, did you have metastasis from the beginning?
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No that was a typo on my part, I wasnt stage four until a year ago august. I started as stage 2b.
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It is nice to read that there is a new normal everyone is attempting to adapt to out there. I am so overwhelmed I am not even sure if I have my diagnosis correctly set up. I went from stage I to IV since June and my tumor is visible in my reconstruction. Totally not right!. My head is spinning. I am on Xeloda and Taxorere and Xeldoa fave me hand and foot on my feet at day 13 so I didn't get 14 days. I find out tomorrow what we are going to do next. It is nice to see there are options out there, I just pray everyone finds that silver bullet that has been mentioned a lot. I will definitely be hanging out in here more and hope I get to know everyone better!
Take care!!!0 -
Hey everybody, Im sure glad this thread is picking up a little.Karen didnt you have your mri thurs? Hope everything went well. I start Gemzar tomorrow, I always get nervous starting new treatment. Im praying this one at least gets everything under control...
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Mary, where are your mets? Mine are in the lining of my left lung.
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Mary - I hope the gemzar isn't too bad for you. I think the worst part for me was muscle spasms. I like Skalaxin for those as it doesn't make me tired or depressed.
MRI showed progression of spine mets. T3 - 12. They also have not causd cord damage. So far it has not knocked me out of the Xtandi trial.
Wishing everyone the best day possible.0 -
Hi Brenda, my mets right now are in my liver, right breast (although that tumor could be a new primary cancer) not going to waste the time to find out because my treatment wouldnt change.Right lymph node under my arm and numerous tumors on my chest wall. Suprisingly those are the tumors that are giving me the worst trouble. Had to have a culture done on one of them today, but they went ahead and started me on the Gemzar. Karen Im sorry about the progression on your spine.What will they do now? Chickadee we are on kind of the same path. Didnt you just finish Ixempra?
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Karen....sorry to hear of your progression but so pleased you can continue on the trial.
Big, warm hugs being sent your way...(((hugs)))
Marywh......I did 3 cycles of Gemzar....didn't tolerate it too well & had progression! That's not to say it won't be good for you. I'm having success on Xeloda with very few side effects whereas other woman don't have success & have loads of side effects...I think it's a lottery really as what will work for one won't work for another....it sure does all suck!!
Good luck with the Gemzar & here's to kicking cancers big fat butt.....:)
Have a good day lovely ladies.
(((Hugs)))
Karen xxx0 -
Karen, good to hear you are still in the trial.
Mary, gemzar depletes your rbc, I think. Eat plenty of red grapes and pomegranates. I am just hoping that I will be healthy enough for my next gemzar.
Karen, a lot of women seem to do well on Xeloda. Good for you!
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Good luck with the Gemzar, Mary, hope you tolerate it well & that it'll get those mets.
Karen, so sorry to hear of tour progression, I hope the trial will kick the life out of those mets!!
Sherbab, I went from Stage II to IV in 9 months, so I understand how overwhelmed you must feel. Hang in, I hate it, but this does become our new normal.
And hear, hear Karen/Kazzie - let's kick cancer's big fat, ugly butt!!
So I'm in Israel visiting my son and landed up in the local hospital's ER yesterday - inflamed nerve in my lower back AND Shingles. The stupid part is that I did something to my back during yoga before I left but just ignored it (was so scared it was mets to the bones). Anyway they did an X-ray and said no mets visible. Whew! Am having a bone scan in November anyway.
Bad, bad timing, doc told me to have bed rest till I go home. Am so disappointed, but my son says he's quite happy to just hang out with me while I'm flat on my back. It was so painful, no sleep for 3 nights & agony, just cried & cried. And, like all of you, I'm pretty tough!!
So, once again, our paragliding plans must be put off, dammit!
It's horrible to be so far away from my medical team, just wanted to go home, at first.
Ben (my son) is so amazing, cooking for me, waiting on me hand & foot, not letting me do anything. Gosh I love him so much, am so blessed!0 -
Speaking of pomegranates, Adnerb, they are so plentiful here, sweet and delicious - great with yoghurt!
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Surfdreams, really happy you're dancing with the stable boy - big, big YAY!! Have heard of NED & the stable boy, but who is Reggie? Hope this keeps up and you can dance with stable boy for a long, long time
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I'm rooting for everyone going through treatment and cheering the stable boy and whoever Reggie is.
My son and I ate our first fresh pomegranate the other night. It took us 45 minutes. The conversation that went with it was very worthwhile. He is 18 and still reeling from my dx. I love him so much it is so heartbreaking. The other one is 28 and has a serious girlfriend. Somehow I think he'll be okay.
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Carolben - I am so sorry you were in such pain, I hope it has lessened. Nothing worse than feeling bad, when you are away from home. But, I'm glad you stayed on with your son, I'm sure he'll be a stronger man for it.
I've been reading up on TN mets. From what I am reading, it seems the basal cell subtype, goes to lungs and brain, another like mine, liver, bones. Chemo that is designed to change the DNA, is less likely to work, on non - basal subtypes.
I am not doing another harsh chemo. For me the quality of my life, is worth more than quantity. I have a very difficult time on chemo and I don't want my 14 year old to watch anymore of that. This trial drug has reduced my quality of life, but is doable.
Wishing everyone a great weekend!0 -
Karen.....very interesting! My cancer sub-type is basal & it has gone to bones & liver....go figure!!
I've been reading a bit about Metformin & intend asking my onc about it next visit. I've also read a lot about food, especially sugar, feeding cancer & keeping calories down particularly in Triple Neg!! I have been doing this ever since my secondary diagnosis & my onc is always saying I've done better than expected & my cancer hasn't 'behaved' like a normal Triple Neg.....who knows though. There are so many things written out there & a lot of them seem to be quite contradictive.
I hope you can keep going with your 'doable' chemo & can keep a good quality of life. Big luv n hugs xxxx
Have a good weekend girls.
(((Hugs))
Karen xxx0 -
Karen - and here I am eating an ice cream sundae!
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