Triple Negative Stage IV
Comments
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Ok ladies, time for the news.
After a very long story I don't want to go thru again, I am in hospital with intense nerve pain and loss of movement in one leg and partial in the other. I have a massive tumour wrapped around my lower spinal column. Not operable. Start radiation tomorrow with aim to shrink it. Hope to reduce pain but may not return mobility. I am now dealing with the palliative care arm of my health service.
I think I will not post any more, but may change my mind. I will read occasionally because I've come to care about you all but I need to focus on me and my family.
So I send my love.
Cheers,
Angela xxx0 -
So glad to have found this thread, the stage IV thread in general has been helpful but I often feel a bit depressed given that hormone positive women have so many more options for treatment than we triple negatives do. I know that a lot of women do not have success with hormonal treatments and I'm not trying to belittle their condition because obviously stage IV anything is awful, but it can be hard sometimes to see how many more choices they have. I am still going back and reading posts here, but wanted to say hello and join the group.
@Angela - I am so sorry to hear of this turn of events for you and I hope the radiation is successful and you are back on your feet soon. You'll be in my thoughts.
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Oh Angela! So sorry to hear this. Hoping and praying that the radiation shrinks that nasty tumor! Will so miss your lovely voice on these forums, and am hoping that you'll keep us updated on your condition!
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Angela r - I haven't been on the board for long and so didn't get the chance to get to know you but thank you for documenting your journey on the site. The only thing that has given me comfort since I was diagnosed stage iv a couple of weeks ago has been reading about the courageous fights that everyone is putting up against this horrific disease. From what I have read, you truly are a warrior! Good luck in this next stage of your fight.
Sugarmagzz- looks like you are at the start of the fight - like me. Good luck for you too and I hope your treatments allow you to get this disease under control.0 -
Angela....I'm holiday as you know & have just done a quick check in...
I am so sorry to read what you're dealing with & almost feel guilty for posting my happy holiday pics on face book.
Life I just not fair for some & like you, I have become very fond of my new cyber friends.
Thinking of you every day & really hoping things improve for you.
The biggest luv n hugs to you ((((((hugs))))))
Karen xox0 -
Sitting up in hospital feeling no pain, with food and assistance at a buzz, truly a great way to recouperate. I feel very well, and the palliative care team are working in my home to set me up for a return later this week or Monday.
We are all dealing with it ok. This is a particularly nasty version of our shared nemesis, because it is completely unpredictable. So I just take each day as it comes, and we are all laughing and enjoying ourselves in a way that we possibly never would without these events.
Please Karen, you can feel the opposite of guilt about the photos. I mean it when I say that I love reading everyone's posts and pictures. Similar to Facebook I can see what people are doing in their lives without the burden of visitors. Port Douglas is my favourite destination. Having been there a few times it brings back lovely memories of those holidays.
So cheers ladies.
Much love
Angela0 -
Angela - I am so sorry you are having to deal with this setback. I hope you are back in your own bed, in the very near future.
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Hi Angela,
So sorry to hear what you're going through, but pleased that you were out of pain in your last post! I so understand what you say about relationships being more intense because of this disease - as a family we have drawn closer than ever, also laugh a lot and also cry together at times.
Karen, I understand you feeling guilty about your good news, but I think it's also important to hear about good stuff too. Thank you, Angela, for putting us both at ease about that.
My son is out from Israel. My 2 sisters, him and I went up to a game reserve for 5 days last week and had the absolutely best time. I had to rest each afternoon, but otherwise kept up fine with it all. We saw so many animals each day and were treated like royalty! My son will be with me for another week before going home (sigh). We want to try paragliding - it'll be tandem with an instructor. Have always wanted to do that, and now is the time, while I still can.
The Taxol treatment is getting a bit harder, hair is thinning out, but taking its time, had more nausea and the fatigue is big. Will have another cat scan at the end of the month to see if it's working.
I hope you will get comfortably set up at home, Angela, will be thinking of you.
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Carolben- sounds like you are having a great time with your son. You will have to let us know how the paragliding goes.
I started carboplatin/taxol yesterday. It was a relief to finally get going in treatment - three weeks since stage iv diagnosis, I just wanted to get fighting rather than just feeling sorry for myself.
No real side effects yet. Was slightly nauseous but meds took this away.0 -
Carolben, sounds like you are having a great time. Im one of those who like my feet firmly on the ground. I only fly when I have to. I hope you have a wonderful time. Would love to hear about the game reserve.
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Carolben - as a mom of 2 boys (13&18), I can just imagine how special it is to have your boy home. It sounds like you are making some wonderful memories.
My 13 year old and I went on an overnight shopping trip this week. Now that he has discovered girls, he has a new interest in clothes
My 18 year old is across the country, in Los Angeles visiting his
girlfriend.
I'm glad I didn't have chemo this week, so that I wasn't "cancer mom" while they were on Spring break.
I had a new port put in a month ago and I am having trouble with it. I had a dye study last week and had a flush with cath-flow. I so hope it works well next Wed., when I start my weekly Gemzar maintenance. Also awaiting 3 month scan I had Monday. I had a lung nodule and L6 lesion show up for the first time.
Wishing everyone the best weekend possible!0 -
Obxk- I have two boys (turning 13 and 10). I love them this age because they are good company.
I have also been recently clothes shopping with my 13 year old (he is starting to want to develop his own style much to his father's worry. I explain to my husband that it's ok the 13 year old doesn't want to dress as a miniature of his dad or the same as his little brother.)
I hope that your scans go well and your port issues resolve. I had a port put in on wed and all seems fine. Chemo was better through port than veins.0 -
Gabpj- thanks for the good wishes.
I agree - those are good ages. My 13 year old bought black skinny jeans, and huge, vinyl, turquoise and black shoes.
Having bought myself a pair of silver, sequin Topsiders last week - I am in no position to judge
I'm glad your port isn't giving you any trouble. I'm on my fourth!
PS - I spent my entire morning listening to videos by Tim Minchin0 -
I was referred here by my dear friend Karen (Hi Karen!).
I'll try to make my long story short. I was diagnosed Stage 3b a year ago. I went through 15 rounds of chemo (A/C, then Taxol). I had a double mastectomy, no reconstruction, in October, 2012. I finished up my radiation treatment in January, 2013. I've had two good months off, just dealing with post-treatment annoyances like lymphedema, but otherwise I've been feeling well and great.
On March 19 I had a PET Scan which I had every assumption that would come back clean. On March 21 I found out there were some spots on my lungs. After a biopsy, bone scan, etc., I was officially diagnosed as Stage IV on April 1st. (April Fools! Or not...). I have mets to the lungs in the form of 6 tumors, both sides.
I started cisplatin/gemzar on April 3rd. I'm feeling well, although I don't think I was quite prepared for chemo again, as it threw me for a loop. Just absolutely exhausted!
I'm looking forward to getting to know everyone here! Thanks for having me.
Janelle0 -
janelle- I was sorry to hear your news and that you had only such a short time without treatment. I am glad that your new treatment plan started so soon after diagnosis. I was diagnosed just before Easter and waited 2 weeks to start - I am a lot better mentally now that I have begun to fight my lung mets. I hope that your treatment goes well for you.
Obxk- it looks like 13 year old boys are the same the world over. Your sons clothes sound like they come straight out if my son's wardrobe.0 -
A call out to Renae,
How are you doing? Not seen you here for a while. ((Hugs))0 -
And Angela, how are You?
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Janelle - welcome and it just sucks that you have to be here. I might put that zip line in Los Vegas on my bucket list. You up for it
3 month scan report in - progression. So... no gemzar. I will be starting Xeloda. On one week, off one week. Anyone else doing this?
I hear it makes you very fatigued - which sucks,but I could do with the weight loss. I have been living on matzo balls as my comfort food, and I am starting to look like one.
Wishing everyone a great week ahead.
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Oh, I love that. Looking like a Matzo ball? Thanks for the chuckle. I think most of us feel like that sometimes. I have done xeloda. se on the whole wernt too bad. Then I developed hand and foot syndrom , but was also on another chemo at the same time so they dont know which triggered it. They took me off both, cause it got so bad so fast. Other than that I think it is fairly easy to handle.
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Marywh - thanks for the heads up. I worry about the H&F syndrome and depression SEs most. I have a history of depression, so hard to fight to stay alive, whilst wanting to kill ones self
Maybe I'll just put all my drugs on the second floor and I'll be too tired to go get them.Right now I'm having a good laugh, watching my 6'1", macho, husband, walk my five pound YorkiePoo. That's love for ya!
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I hate this damn cancer. I'm so mad and angry, Karen, that it's back.
You definitely need to come to Vegas - I have yet to do the zip line, and want to badly. Then you can make me one of those matzo balls I keep hearing about! My girlfriends took me out for pancakes this morning. That may be my go-to chemo food. I'm determined to become a regular at this new pancake restaurant. The red velvet pancakes on their menu looked insane.
I think I have my dad convinced to go sky diving with me, too! Crossing off that bucket list...
Quick question, also - in regards to lung mets, just curious as to how many nodules/tumors/funny looking things you all had? I have six showing up on my pet scan. I can't get worried, because worrying won't help a bit, but wondering if this is something for someone else to worry about?0 -
I'm here! I am in NSW for a holiday, sorry. I am okay! My birthday went fine as my scan results came back as no additional mets. What a relief and I happily turned 49. Thank you so much for asking about me. :-) Hugs, Renae
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Karen - so sorry about the progression. I don't know much about xeloda but if you are worried it might be a good time to seek a second opinion.
Csmommy - I have lots of minuscule lung mets with only one that can be measured.0 -
CSMommy - OMG, red velvet pancakes! I would find those, very comforting.
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HI all, been nice and busy on the thread!
Janelle, I also had only a few months from end of treatment to finding mets in my lungs - the biggest was 7mm and some at 4mm and some smaller - on both lungs (don't know how many in all). I was also sure everything was ok, what a shock. Sometimes it still feels like it hasn't sunk in yet. Nice you didn't have to wait long to start treatment.
I did have the best time with my "boy" - of 36!! We didn't get to paraglide, unfortunately, the weather just wasn't obliging - but I have a friend here who wants to do it with me, so it's still on. CSMommy, sky diving is also on my list - got to do that!
Interesting to see how Ben (my son) wanted to take care of me - he did the cooking and all the washing up, insisted I rest every afternoon and sleep for an hour. Was so watchful of my well being. What a sweetie, I'm just mad about him. He's very down to earth and is a calming influence on me. The plan is for me to go over to Israel to visit him in September - all being well. I find it so hard to not be able to plan far ahead. My winter is mapped out for me around treatment, so far. After the scan at the end of this month, things may change....
OBXK I'm sorry to hear there was progression shown in your scan, damn this disease, it sucks big time! I also have a long, intimate relationship with depression, struggling a bit now, (life is back to normal and everyone has gone home again. The bump down to earth after the best vacation). But the anti depressants I take are keeping me fairly on top of things, meantime, thank God. Fatigue does not help either - I get all tearful and sad when I get over tired. I hope you can get the problems with your (4th!) port sorted out!
Marywh, I could bend your ear for hours about the game reserve trip - we saw leopard every day but the last, saw lions eating a buffalo they'd brough down, wild dogs taking a bushbuck, elephant, rhino, cheetah, a hyena who got a zebra - huge herds of buffalo, giraffe, hippos, crocodiles, oh you name it - we were so lucky in the game viewing, had really knowledgeable and enthusiastic game rangers, first class accommodation and food, plunge pool at each room, indoor and outdoor showers. It was just awesome - a once in a lifetime trip! My 2 sisters and son and I get on so well and we laughed a lot, cried a bit too, which is also ok.
Gabpj - know what you mean about happy to be starting chemo to hit those lung mets - I felt exactly the same - never thought I'd be keen to start chemo! The waiting is the hardest part and there is lots of that. But once I'm doing something to fight it I feel easier. Hope the new chemo will continue to be fairly easy on you.
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HI all, been nice and busy on the thread!
Janelle, I also had only a few months from end of treatment to finding mets in my lungs - the biggest was 7mm and some at 4mm and some smaller - on both lungs (don't know how many in all). I was also sure everything was ok, what a shock. Sometimes it still feels like it hasn't sunk in yet. Nice you didn't have to wait long to start treatment.
I did have the best time with my "boy" - of 36!! We didn't get to paraglide, the weather just wasn't right - but I have a friend here who wants to do it with me, so I think we should. CSMommy, sky diving is also on my list - got to do that!
Interesting to see how Ben (my son) wanted to take care of me - he did the cooking and all the washing up, insisted I rest every afternoon and sleep for an hour. Was so watchful of my well being. What a sweetie, I'm just mad about him. He's very down to earth and is a calming influence on me. The plan is for me to go over to Israel to visit him in September - all being well. I find it so hard to not be able to plan far ahead. My winter is mapped out for me around treatment, so far. After the scan at the end of this month, things may change....
OBXK I'm sorry to hear there was progression shown in your scan, damn this disease, it sucks big time! I also have a long, intimate relationship with depression, struggling a bit now, lilfe is back to normal and everyone has gone home again. The bump down to earth after the best vacation. But the anti depressants I take are keeping me fairly on top of things, meantime, thank God. Fatigue does not help either - I get all tearful and sad when I get over tired. I hope you can get the problems with your (4th!) port sorted out!
Marywh, I could bend your ear for hours about the game reserve trip - we saw leopard every day but the last, saw lions eating a buffalo they'd brough down, wild dogs taking a bushbuck, elephant, rhino, cheetah, a hyena who got a zebra - huge herds of buffalo, giraffe, hippos, crocodiles, oh you name it - we were so lucky in the game viewing, had really knowledgeable and enthusiastic game rangers, first class accommodation and food, plunge pool at each room, indoor and outdoor showers. It was just awesome - a once in a lifetime trip! My 2 sisters and son and I get on so well and we laughed a lot, cried a bit too, which is also ok.
Gabpj - know what you mean about happy to be starting chemo to hit those lung mets - I felt exactly the same - never thought I'd be keen to start chemo! The waiting is the hardest part and there is lots of that. But once I'm doing something to fight it I feel easier. Hope the new chemo will continue to be fairly easy.
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HI all, been nice and busy on the thread!
Janelle, I also had only a few months from end of treatment to finding mets in my lungs - the biggest was 7mm and some at 4mm and some smaller - on both lungs (don't know how many in all). I was also sure everything was ok, what a shock. Sometimes it still feels like it hasn't sunk in yet. Nice you didn't have to wait long to start treatment.
I did have the best time with my "boy" - of 36!! We didn't get to paraglide, the weather just wasn't right - but I have a friend here who wants to do it with me, so I think we should. CSMommy, sky diving is also on my list - got to do that!
Interesting to see how Ben (my son) wanted to take care of me - he did the cooking and all the washing up, insisted I rest every afternoon and sleep for an hour. Was so watchful of my well being. What a sweetie, I'm just mad about him. He's very down to earth and is a calming influence on me. The plan is for me to go over to Israel to visit him in September - all being well. I find it so hard to not be able to plan far ahead. My winter is mapped out for me around treatment, so far. After the scan at the end of this month, things may change....
OBXK I'm sorry to hear there was progression shown in your scan, damn this disease, it sucks big time! I also have a long, intimate relationship with depression, struggling a bit now, lilfe is back to normal and everyone has gone home again. The bump down to earth after the best vacation. But the anti depressants I take are keeping me fairly on top of things, meantime, thank God. Fatigue does not help either - I get all tearful and sad when I get over tired. I hope you can get the problems with your (4th!) port sorted out!
Marywh, I could bend your ear for hours about the game reserve trip - we saw leopard every day but the last, saw lions eating a buffalo they'd brough down, wild dogs taking a bushbuck, elephant, rhino, cheetah, a hyena who got a zebra - huge herds of buffalo, giraffe, hippos, crocodiles, oh you name it - we were so lucky in the game viewing, had really knowledgeable and enthusiastic game rangers, first class accommodation and food, plunge pool at each room, indoor and outdoor showers. It was just awesome - a once in a lifetime trip! My 2 sisters and son and I get on so well and we laughed a lot, cried a bit too, which is also ok.
Gabpj - know what you mean about happy to be starting chemo to hit those lung mets - I felt exactly the same - never thought I'd be keen to start chemo! The waiting is the hardest part and there is lots of that. But once I'm doing something to fight it I feel easier. Hope the new chemo will continue to be fairly easy.
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Oh that sounds like so much fun. I have all these places I want to go...My bucket list is full of them.Unfortunately I cant fly anywhere that far due to lymphedema, cancer is a gift that just keeps on giving...3 hour flight or less is about all I can do...So I go on all these trips on the net. Maybe one day...Did get to Florida about three weks ago,my sister lives there and my other 2 sisters,dh, and I flew down for a week. We had so much fun. Funny tho, I was alittle worried about going cause tumor markers were rising again, but got back and they were the best they had been since last august. Geuss that just means I need to go on vacation every couple months!
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Renae...so glad you had no progression & were avle to enjoy your birthday! And here's to many more to come!!!
Angela...I do hope things are still going along ok for you. Always thinking of you & sending luv n (((hugs)))
Karen...that sucks about the progression. I had progression on Gemzar also & have just finished 3rd cycle of Xeloda. I had my scans this morning, results on Thursday to see if it's working. I have a sneaking suspicion that all is not right with the brain scan due to something the radiologist said! Feeling pretty scared......
Our kids are so important to us.......anytime we can have with them is a blessing.
Take care lovely ladies.
Karen xoxox0 -
Hi all,
I haven't been on for ages but it's good to hear about you guys and sorry for the ones wo've had progression. I had a scan following my first 4 cycles of Xeloda / Avastin and was amazed to learn that it has significantly shrunk my liver mets! I cried my eyes out when I heard - I think it was the relief!! So I'll be continuing on that for a while. Just hoping that I can be one of those for whom it works well for ages. Fingers crossed.
I also wanted to let you guys know about the tumour profiling I had done (Caris Target Now, cost £4k,000 but remarkably my insurance company was persuaded by my oncologist to pay for it!!). Part of my liver tumour was sent across the ocean to Phoenix AZ a few weeks ago and I've recently had the results. They identified the 3 mutated genes which have caused the cancer (little buggers). Based on that, they list the drugs they think have benefit, and those they think won't. Strangely, Xeloda appeared on the 'no benefit' list, and it's worked well, which suggests it's not 100% reliable - mainly coz it's so new. But they suggested two further breast chemos that they think will work - gemcitabine and nab-paclitaxel. They also suggested two melanoma chemos - temozolomide and dacarbazine. So this is want the onc will go through once my Xeloda stops working. He wouldn't have done it in this order without this profiling. he would have given me other drugs first based on his best guesses which woulld have failed. (It did clearly show that I would get no benefit from the 3 chemos I was on originally - Epirubicine, cyclophosphamide & taxotere - so I really believe that all cancer patients should have this at the point of diagnosis so time and money is not wasted giving us drugs that just won't work (during which time, they become secondary - like mine).
Anyway, I feel like I've been given a stay of execution. Doesn't look like I'll be going anywhere just yet.
Have any of you guys had this done? Would be interested to hear your thoughts.... I do think it's especially useful for TNBC. It should buy us more time. How does the payment thing work for you US / Canada / Ozzie ladies?
xxx
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