Triple Negative Stage IV
Comments
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You know, Ive been told I have a good head for baldness, but Im short and thanks to the steroids, chubby, and I dont think those two work well together either. Ive always wanted to be tall with a long neck, I thought that, coupled with being bald would make me feel graceful. When I was first dx 5 years ago, I was still thin and wasnt so self-consious about being bald.( I was also 5 years younger and still looked pretty good for an old broad) hmmmm maybe it had some thing to do with turning 50 the year I was dx?
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Hi ladies! Just realized that I had not checked in for a few days. This is day 2 after Navelbine, and I am feeling relatively good. I am relishing this, because I do not know what chemos are still down the road for me, and I know many of them do not leave one feeling this nice. Took a nice long hour walk today in the sun, and fresh air. Felt good to have that spring breeze in my lungs (although the cough and short breath were annoying at times). Been thinking a lot lately about how to get my mind back into "battle mode". Being outside today helped.
Funny thing, but for the first two days after my treatment, all of my bone aches ( where some mets are) nd particularly in the rib and liver area were completely silent. No pains ANYWHERE. Makes me wonder if the meds are working and keeping the cells from dividing? I dunno. Today, they have started to intermittently "wake up".
My son, and husbands birthdays are being celebrated next weekend, so that means 16+ people in our teeny house:-). I am looking forward to seeing everyone, but totally NOTlooking forward to some family members wanting to talk about this issue at every moment-- or the "look" that people give you when they see you for the first time. What is worse is when you are completely happy to see them and they fall into you bawling. I don't need that right now. I dont need people to come and visit and then starting asking the hard questions when conversation gets light. NO, I am NOT going to want to talk about where, or how much this has spread. NOT when we are together celebrating. Lets celebrate being together, and being alive, RATHER than using out get-together as a fact finding mission. Sorry, had to vent.0 -
The last time we had a family get together, and the topic of course turned to my health, this time I just simply said, "I really would prefer not to talk about this today.Period." Worked for me...
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I actually had to go off on them and then refuse to answer any phone calls or text for a month and created a carebridge site and now a blog to update treatments for the family to cut down on the all the questions. There was some flack in the beginning but now the family loves they get to know what is going on and I don't have to talk about it every 5 minutes. I had one of my Aunt's come up to me after a Family get together to let me know she had been thinking about me and reads my blog/facebook/carebridge even though she doesn't comment. I still get questions periodcially especially at work from some people that work in other buildings a rarely see me especially with it being the time for College Basketball pink games.
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Am happy the Navelbine is not making you feel horrible, 11tybillion - just had my 2nd weekly Taxol and the first one was really easy, so am hopeful it will contine to be so. Hope the birthday celebrations will be a blast!
I'm going up to visit family at the beginning of next month - love them all to bits, and definately dont want to spend it speaking about cancer!!! (give me and everyone a break, please!!) They get that - and I'm good at changing the subject! Family get togethers are celebrations for me, I love being with them. Also we have little grandkids (my sister's daughters) so it's very much a celebration of life and being a loving family together!! There is one cousin I've never been close to who has been calling me with this very concerned voice, am I in much pain, is the treatment terrible? I guess people all deal with it in different ways. I just hate when people walk on tippy toe and tread on eggshells around me, but I get they are uncomfortable and don't know what to say.
I'm also happy to come home to my sleepy seaside town after the big smoke of Johannesburg though!
My eldest sister sends out e-mails to all the family members with updates about what's happening with me. I couldn't handle having to email or call every one of them. I speak lots with my 2 sisters, and my son, and my Dad. With Ben, my son, sometimes he needs to speak about what I'm going through and sometimes it's the last thing he needs. We face time and skype a lot and it's been good for him to see me, see that I'm doing well.
Weekend is up - hope it'll be a good one for all!
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Hi All,
This is a great thread - thanks for setting up.
Thinking of you Elisha.
We're all wasting precious months just waiting and seeing whether the treatment we're on is working or not. In the meantime our tumours are growing before they try a different drug on us. If you've only got 12 months to live, why waste 3 of them waiting to see if some drug works or not?? I told my onc I wasn't happy with this waiting, so he suggested Caris Target Now (based in Phoenix, AZ). A sample from my liver biopsy was sent off to them last week (costs c. $4,000). They screen not just for ER/PR/HER2, but for about another 13 different genetic-type-things (don't ask me!!) and, based on your results, they list the drugs that will work and those that won't (based on all the research out there). The benefit is that you don't have to go through needless treatment that won't work for you, and instead go straight to the treatment that should. My onc says that this is the future of cancer treatment and that one day all cancer patients will have this as a matter of course. Of course, it's a huge cost that many people can't afford which seems so unfair (I couldn't afford it - my aunt recently died and the proceeds of that are funding it).
My Stage II cancer was diagnosed in Sept 11 and the subsequent chemo I had obviously failed because I was diagnosed with liver mets in Jan 13. I can't help thinking that if all ladies had the test early on, we might not have the progression we have to Stage IV. Initially they said my cancer was slightly ER+/PR+ and HER2-. But as the Tamoxifen clearly didn't work, they suspect it's now TN, though I'm awaiting biopsy results.
x
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Der. Forgot to add the website. Sorry if you guys already know all about this - I don't know what the usual practice is in the US. Ignore me if you already know what I'm going on about!
http://www.carislifesciences.com/
(They test for BRAC genes etc too).
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Tortoise- thanks for the heads up on the testing. I'll check it out.
Carol - it sounds like you have a lovely family. I hope the 2nd treatment is an easy one.
Hyde- I'll have to check out caring bridge. Sounds like a good solution to keeping everyone informed.
I had a port dye study Monday. The damn thing has to be replaced. So much for my relaxing 3 week chemo break.
But today has been a good day. I went to the bakery and they had my favorite cake by the slice, my friend who I was going to call to invite to dinner was in the bakery, I stopped in the hair salon hoping for a Friday slot and she said, I can take you right now. So... If the new raw bar has wonderful She Crab soup on the menu - it will have been the prrfectb day,0 -
How old were you when you were diagnosed?
Renae, 480 -
I was dx @ 29 out of the gate with Stage IV
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i was 40, but they said it must have been around for a few years...
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I was 45, diagnosed stage IV from the start. The onc said I must have had it for 10 years...
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I was 58, stage 1 grade 2 TN. From mx to lung mets took 8 months!
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Flippin 'eck Carolben, you look about 40!!!
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49
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42 - 49 - mets at 51
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Hello everyone. I'm new posting to this forum, but I've dipped in from time to time. Great idea to get us stage IV triple negsters together. A bit about me, diagnosed with stage 1 TNBC in October 2009 treated and told that I was probably cured. I wasn't! It came back in April 2012 (I don't think it ever went) in pectoral muscle and then within weeks was in my liver, pleura, sternum and nodes. In June I started on Carboplatin as part of a UK Triple Negative Trial and it worked well for me. By October 2012 I was NED. I have the results of my latest scan on Monday, so we'll see. I came across the following article about copper depletion therapy, have you chaps heard anything about it? http://weill.cornell.edu/news/releases/wcmc/wcmc_2013/02_13_13.shtml
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Interesting study there about copper depletion. I just had it confirmed that my cancer is now Triple Neg (initially was weakly hormone pos). There is some research that says that killing off BC stem cells is key (they're the ones that drive the growth of the normal BC cells). And it says that although there are very few stem cells in a tumour, they're mostly HER2 positive, even though you may have been diagnosed as HER2 neg. In which case Herceptin might be appropriate. I asked my onc about it and he's going to look into it (apparently my path report did say there were a few scattered HER2+ cells - I asked if they might be the stem cells, and he's going to look into it). There is also a trial at University of Michigan of a new drug for Triple Neg which you may want to check out.
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Thanks for the info Tortoise, I'll be going to my onc tomorrow with a lengthy list of questions. Whereabouts in London are you, I'm Walthamstow.
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Tomorrow I go to meet a new surgeon, who will replace my ruptured port.
I would really just like to stay home and never see a doctor - ever again!
However my eldest son graduates HS in June and I want to see him graduate - after all my hard work
Wishing everyone the best week possible...0 -
I'm in Surrey, near Woking - I go mainly to the Guildford hospitals. Good luck tomorrow - let me know how you get on. Wow - Carboplatinn worked well for you! I'm on Capecitabine - have to wait until April 3rd, to see whether it's spread anywhere else or not. How you getting on emotionally?
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Good luck, OBXK. Hope everything goes well. Where in n.c is Columbia?
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Thanks Mary. Columbia is in NE NC, by the Outer Banks - we're called the Inner Banks.
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Oh, too bad.Thats a long way from me. Im about 20 miles east of Charlotte. I have seen a lot of womwn on here from n.c but we're all pretty spread out. It would be nice to meet the "n.c girls" wouldnt it?
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Mary - yes it would. If your ever headed down to the OBX - look me up. I also spend some time in Charlottesville in the summer.
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Renae thanks so much for starting this thread
Here is my story originally dx in Feb 2009 at age 43 stage 2 no positive lymph nodes no vascular invasion had bmx and did 4 cycles of taxotere/cytoxin went merrily on my way and enjoyed life doing checkups every 3 months. 3 year checkup everything good MO says big milestone feeling great. 2 months later I start seeing flashing lights go to onc he says stress(working alot and friend dying from stage 4 bladder cancer but lets do an MRI to be sure but don't worry. MRI scheduled for next day I knew I was in trouble when they said we have your MO on the phone. MO tells me I have 4 tumors in my brain and need to see RO asap. See RO the day after that and started WBR that afternoon for 10 days worse time of my life between radiation and the steroids. I call it my twilight zone period I went to bed one night perfectly fine and woke up barely able to walk or dress myself it was horrible and I thought this is it I will be lucky to see summer. Pet scan also showed 2 tumors in the lung. After radiation started Taxol/Carbo had terrible nausea tried every med under the sun before finally getting it under control have been on this combo for almost a year every other week(body couldn't tolerate 3 weeks on 1 week off) got to skip 1 treatment last year right before Xmas feeling fatigue and joint pain but other than that I am hanging in there. Long story short all but 1 of the brain tumors are gone and the 2 lung tumors have shrunk significantly. I will celebrate my 1 year anniversary with mets in April by taking a cruise with DH and DD (who have been wonderful through this whole thing).
Sorry this was so long but wanted to give you all some inspiration, a year ago I didn't think I would still be here but I am and not doing to bad.
Live, Love, Laugh
Jackie
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dont apologise, it was lovely to read your outcome. keep going jackie & keep LLL xxx
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Jackie - thanks for sharing your story. So glad you are doing so well, after all you have been through.
I saw my new BS today - he is going to do my port replacement Thursday. I have chemo, the following Wed.
Wishing everyone a good day!0 -
Warm wishes for those of you in the path of the winter storm. Stay safe.
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Hi all, I didn't know a port could ruture, how did that happen and how did you know? I'm really sorry that happened to you I know what you mean about not wanting to go. I have stage iv tnbc, have a port, have had a lumpectomy and then a lobe removed from my lung where it had mets. Now I am on my 7th taxol chemo and it is really hitting me hard, don't want to do anything anymore. I am having a MRI of brain next Friday because I am having headaches a lot. Sometimes migraines sometimes just pain and pressure. Feels kind of like sinus pressure thing so I am sure hoping and praying it has not gone into my brain. Sounds awlful is it has. I feel sick just thinking about it. Jackie you are so strong to have made it through that. Truely amazing! I will let you all know when I get my results back. Wish you all well and I love hearing from you all! Debbie
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