Triple Negative Stage IV
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Hope you get good results! Keep us updated. My mom was tested for a protein and something else. I'm pretty sure they are looking to see if she qualifies for this trial.
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Karen - I am praying that this treatment works for you and as you say can be an effective treatment for other TNBC women.
Do they test for protein via tumour biopsy or by blood test?0 -
Karen....fingers crossed for you that this trial works.
Not only will it be fabulous for you but a bit of hope for the rest of us too.....good on you for doing your bit for research...:)
Hope the side effects aren't too bad.
(((Hugs)))
Karen xxx0 -
Thanks ladies!!! They test your tumor.
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Crossing everything that the xandi trial drug will be your magic bullet, Karen!
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Thanks Carolben! I hope you are feeling well these days?
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Carolben,how are you? I was just thinking about you today. Hope you're doing ok..
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I'm feeling better each week away from chemo, thanks Mary & Karen! A little more energy, appetite is better at times, don't feel sick at all and it's just the fatigue and being out of shape! But I've started walking around my neighbourhood and more on the beach and do yoga, so I'm doing ok, exercise wise. Sometimes just the whole shower, wash, dry, cream, dress thing feels like enough exercise for the day~!
Had my scan, all the little nodules which had shrank have grown back (only about 1mm bigger than they were before we started the Taxol) and there are a bunch of new, little ones (4mm) so there has been progression and it's goodbye to Taxol.
They are all still small and my onc says they are very treatable, plus I'm in pretty good physical shape (??!!) so he wants to start a new chemo immediately and I want 4 months off! So we settled at 2 months off, then another scan to see what the nodules do with no treatment, and then we'll decide on chemo.
I'm willing to give chemo another chance - he's talking about Carboplatin and Gemzar - anyone had that combo? He also mentioned Xeloda, Ixempra, Navelbine and Eribulin. How does one ever make a decision about which one to go with, or which combo. I have to trust my onc (which I do) but am also doing my homework (with help from my sisters who both have medical backgrounds). It's a difficult one. In the past, I've just gone with what my onc suggested was best.
But meantime I'm on chemo vacation, will be off to Israel in 2 weeks time, will be able to swim there and have some warm weather after the cold winter here! So looking forward to spending time with my boy (big boy, he's 37). Onc said definately to have a long soak in the Dead Sea!!
I'm disappointed and feel still kinda numb, was so hoping for better news and a long chemo break. And in another way I also kind of feel that this is the way the disease goes, and having progression was always a possibility. I just get scared when I think of the future.....
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Oh Carloben, Im sorry. Iknow thats a big letdown. I have been on Carboplatin and xeloda together. I dont know which it was, but one or the other gave me hand and foot syndrom, so he took me off both. Im on Ixempra now, dont know how well its working as I have my first scans tomorrow. I dont have a really good feeling about it though cause I still have visable tumors on my chest wall. Ive heard it works well, so I dont know. Its all a big crap shoot, you know? I hope you have a really good trip, and have a great time with your son. Israel has always been on my bucket list. Enjoy...
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Carolben- so sorry to hear of your progression. It is such a disappointment. The Xeloda did not work for me, but it was a pill and easy to take. It can cause hand and foot syndrome.
I think lxempra is a difficult one. It can bring your counts down and cause a lot of fatigue.
I've decided against that one.
I hope you find your magic bullet so that you can continue your travels and have as much time as possible with your dear boy. My boys are 13 and 18.
I get scared sometimes too, it seems to go from bad to worse, very quickly. The other day, I told my husband, waiting to die is exhausting!0 -
Well, another chemo bites the dust. Have had alot of progreesion on the Ixempra, scans lit up like a christmas tree...On to something else now not sure just what yet. Kind of a bleak outlook right now.
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Thanks, guys.
Mary, I'm so sorry the Ixempra didn't work, dammit!! Hope they can come up with your magic bullet.
Ixempra & Xeloda are both very expensive here and it's iffy that my insurance will agree to cover them, which narrows my choices a bit.
Anyone know anything about Eribulin?
Hang in there Mary, know you're in a dark space right now, am thinking of you0 -
I know a little about it. I was on it for 2 cycles, its also called Halaven. I couldnt do it cause it was giving me heart problems. It can cause something called long qt that has something to do with the electrical impulses in your heart. Anyway, I couldnt take it but have heard good things about ti from people who have taken it. Side effects were minimal with me the short time I did take it.
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Thanks for the info, Mary, nice to know the options, and the risks! How are you doing? I can't stop thinking about my nodules growing with no treatment. Do we become chemo junkies?
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Hi Karen, you've been at this longer than I have, but it must be so hard with younger kids! I hate that stillness that comes over my son when I have bad news for him. But we can still laugh together, which I love.
Every moment with our loved ones is precious - that's top of my bucket list - time with loved ones, all the rest is icing on the cake!
We plan to paraglide, wanted to do it in April here, but the weather didn't oblige, so that's exciting!0 -
Carolben- parasailing sounds fun! I went on "The Sling Shot" with my 13 year old - it shoots you up 200 feet at about 100 miles an hour - then it slowly brings you down. We were a block from the Atlantic ocean, wonderful views, great memory.
If I can pull it off, I may take my older son, on a hot air balloon ride.
I have a bone scan scheduled for Tuesday to rule out mets. I am very anxious about that. This new trial drug can cause bone and muscle pain, I hope that is all it is.0 -
Karen, dh went on the slingshot at Myrtle Beach, I stood on the ground and watched him..you were so brave!!!!
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Marywh - I must have been on drugs! It really looks, much worse than it is.
I had my bone scan today, from where I was, I could see hot spots. They did extra snaps of my hip that hurts. It's going to be a long wait. I am very nervous.0 -
Dammit, Karen, it's a worry of mine, too. Onc wants me to do a bone scan in November too. I am sorry to hear you saw spots, damn this disease!!
This slingshot sounds like fun, I've always loved these amazing rides etc. I'm off to Johannesburg, where my eldest sister lives, on Sunday and fly to Israel on Tuesday. I am so excited, I'm already about half packed. It's been left late, we got a better ticket price that way, so it's going to be a busy few days! This time next week I'll be in a hot (climate and political climate) Israel, with my son, ahh, bliss!!
I just want to forget about scans and tumors and bones and doctors and chemo and needles and cancer for a while. I know that's not possible, but a break like this will do me a world of good, I'm sure.
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Carolben - I hope you have a wonderful trip. One of my dear sweet neighbors (16) Has been in Israel since Sunday, her mom is a bit worried. She is in a two month Army training camp - a part of her education.
My scan suggest mets in my spine and pelvis. Awaiting approval on MRI. I too am a bit tired of it all. But was happy to be here to make my 14 year old his favorite cake and his favorite pasta for dinner yesterday. Life goes on...
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Thanks, Karen. I'm also happy you were there to make your 14 year old his favourite dinner - that is one of a mother's joys!
Sorry to hear about the new mets, that really sucks! Hope you can get the MRI done soon so you can make a plan of action. Waiting around with tests and results is hard, I found that once I start on a new chemo then I know I'm doing something, at least! Stay strong, but we can also cry when need be.
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I geuss this just isnt a good time for any of us. I will be starting on my new chemo next week. Dont know much about it and have never heard of it. Its called vp-16. Went to the beach for a couple days this week, it was really nice to have a little vacation before I get started again, and Karen I thought about you, we were staying right across the street from the slingshot..went to Ripleys believe it or not museum, that was fun. All the years Ive been going to that beach and have never been. Its amazing the things you want to do when you're in our situations. Carolben, again, have a wondeful time on your trip..
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I think this is where I belong, though I don't really know the pathology of my mets yet. I am thinking TNBC because my first dx was TNBC. My second dx was barely er and pr positive. I was 50 when first dx'd.
I read through the whole thread!!! What an amazing group of women!!!
I was just in the hospital for 5 days because I had shortness of breath. I have pleural effusion that will not go away. Numerous, tiny spots were also found in my left lung.
I am still waiting for my onc. to call about pathology. He wants me to start carbo/gemzar this Friday.
I am reeling from this latest news. I find it so unfair! My beloved Scottie, Angus, was just diagnosed with incurable bladder cancer. Now we both have cancer. My 18 year old keeps asking me if I will get better. I don't have the heart to tell him that I will be in treatment for the rest of my life, however short that will be.
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Adnerb - I know what a scary time this is. I think we go into a type of shock when we get this diagnosis.
I'm sure you will feel a little better when you have a treatment plan in place. I have done carbo/gemzar, for me, it was much easier than T/A/C.
I am sorry your pet is also going through a tough time.
I hope you have a great response to the gemzar/carbo.0 -
Still havnt started on my new chemo yet, insurance has refused to pay because its not a "breast cancer" chemo.Wth? Ive done all of them, except for a few doses of adrimycin (sp) which my mo said would put me into heart attack range. I geuss they would rather pay for the heart attack than chemo? I have to go through the drug company, which takes extra time. Very discouraging and scary as Im watching my chest wall tumors get bigger by the day. Also have 1 that keeps getting infected, along with the lymph node thats involved too. Seems like Im on an anti-biotic all the time.Have I ever mentioned that I hate cancer?
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Mary, I can't believe your insurance carrier is putting you through the ringer! That is just not fair.
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The sad part about it is it is a pre-exising condition insurance company, they dont use oncologists for their decisions, they use internists.
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Hang in there, Mary. I am hoping you get what you need. What are the steps involved? Is there an appeal procedure?
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There is an appeal procedure, but it would take too long, I need to get started back on chemo as soon as possible because the chemo I was on didnt work and I was on it for 4 months. Hopefully I'll get approved for the drug company help, I should find something out in the next day or so. If not I'll just go ahead and start treatment and argue with them later.
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Way to go, Mary! I hope this next one works!
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