Triple Negative Stage IV
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Well, started on Ixempra thurs. and it is indeed the chemo from hell. Woke up Sat. and felt like Id been hit by a truck, Sunday wasnt any better. Today, up and about but moving Slowly...Carloben, sorry about your stuff going on. If its not 1 thing its another with this disease.Hope everybody else is doing ok..
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Mary, I just read up on the se of Ixempra - sheesh - it does sound rough - hang in there. How often do you get it?
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Thank goodness Im only doing it every three weeks.Not only are the se bad but you're there for the whole day too.
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Carolben - I hope your rbc climbs this week and gives you extra energy. Meanwhile enjoy your short chemo break. We have rain forecast all week and it is sorely needed in my regional area - but it also means I can't get outside to exercise and I know exercise improves my mood and energy levels. On the positive side, I have a weekend planned with my three bridesmaids (and husbands) to wine country this weekend. They all live away so I don't get to see them too often (one I haven't seen in four years).
Mary - I hope that your body adjusts to the iexmpra and that you don't feel like you are hit by a truck next time. Iexmpra is not available in Australia so I don't know much about it.
Gab0 -
Mary- I hope you are feeling better!
I don't think I have it in me to do another hard one. I hope the next round is easier on you.0 -
So I felt better for a day and then it started all over again - another course of antibiotics and I just went to bed for the week. Gosh I was flattened, coughing and sniffing and just exhausted. Saw my onc yesterday and he says my lung xray looks ok, no visible tumors, so they haven't grown (YES!!), lungs sound clear, I just need some serious building up. Rest, eat, drink (and be merry ha ha) So no chemo this week either - next week we'll carry on - that's a 4 week break.
Hope your tummy is settling down Karen? My gut goes from 1 extreme to the other, I've kind of got it manageable now.
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Carolben - so glad to hear you are on the mend. It takes some some to get your strength back after a week in bed, so glad your lung mets were stable!!! Wonderful news. Continue to be well!
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Hello
I am new to the group. Diagnosed in Feb. 2013 - Straight out the box stage IV, TNBC. Mets to bones, lymph nodes, liver and spine. I am 45 years old. Happy their is a discussion board for Stage IV, TNBC. I am currently on Abraxane and Xgeva shots. I also get decadron before the abraxance. Not much side effects ohter than fatigure and hair lost.
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Hi everybody, this thread has been quiet for awhile, hope everybody is doing well. Ixempra has turned out for me to be as evil as everybody said, and in addition to that I had a severe reaction to some kind of sting, dont know what it was ants maybe? Anyway ended up with a trip to the er by ambulance on Sunday stayed about 4 hours and they shot me up with benadryl more steroids (arghhhhhhhh) and more anti-nausea meds. This has not been a good week. Did start with an allergist today, so hopefully will get to the bottom of that problem.Im sure it has some thing to do with the chemo and counts being so low, but who knows?BC is just the gift that keeps on giving...
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Welcome to the stage iv tnbc thread - faith girl. I was diagnosed at a similar time to you. I am up to my 5th round of carboplatin/weekly taxol and like you my main SE seem to be tiredness and hair loss. I have lung mets.
Mary- I am sorry to hear about your allergies. Heres hoping the allergist gets it all under control.
Thank you ladies for reactivating this thread. Being stage iv tnbc can feel quite isolating so it is always good to hear from other people with tnbc.0 -
Faithgirl - hope your Abraxane continues to treat you well. It was very good to me for 15 months before it was time for a change. Most of my side effects occurred in my first 6 months with it, but all were manageable. Kept my mets stable and hopes it does the same for you. Many women have had very good luck with Abraxane!
Sorry to hear of your complications, Marywh! Hope you're on the mend.
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Hi all. I've had some changes since I last posted. We've determined that not only did the chemos work for me, but the molecular test I also had done showed that there's no chemo that will work. I had a PET scan last week which not only showed progression of my lung mets, but new mets in my liver, my peritoneum, my lymph nodes, my vocal cords, and my arm. So I'm off the chemo, and trying to get into a clinical trial for an immunotherapy treatment. I have an appointment next Tuesday to find out if I got in - it all depends on whether or not my tumors include a particular protein. I had a brain scan today, and I'm trying my hardest not to focus on it and say it's only for a baseline setting. I had one in March that was negative save for some lesions that they said were due to migraines
Welcome, faithgirl. Sorry you're having to be here.
What a terrifying allergy, Mary! Glad to hear that you're ok!! I hope you can get some answers with your new allergist.
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Csmommy - I will be thinking about you this week and hoping you get into the immunology trial - you really deserve some good luck with all you have been through!
Your oncologists sound like they are proactive and at least the molecular test saved you from wasting time and enduring side effects on chemos that weren't going to work. Where did you get the test done?
Anyway, I just wanted you to know that I am sorry about your progression but maybe it is just something that leads you to good results from the trial. Take care of yourself0 -
Welcome Faithgirl, sorry you need to be here, but these boards have been a Godsend for me! I've drawn so much courage from what people share, as well as knowledge.
Mary, I'm sorry the Ixempra is so hard - an alergic reaction and trip to the er is not helpful either!! Hope you can get to the bottom of it!
CSMommy, hoping your brain scan will be clear, and you get into the immunotherapy program. I heard 3-bc can be resistant to many of the chemo drugs available? I agree with Gabpj about the silver lining - not putting you through a bunch of chemos that wouldn't help. Sending big hugs.
I'm taking a knocking from this weekly taxol now - each time is harder. Sometimes I just want to stop it, say "enough chemo, I can't anymore", but then at the last scan the nodules had shrunk, so it's doing its job, so I guess it's worth it to press on. Only 4 more to go, then a scan to see what's happening in my lungs. But after this lot I am so taking a chemo holiday - my body needs time to rest from chemo, for a good few months!
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Just curious I haven't worked since 2nd diagnosis. Trying to allow my body time to heal. Not sure if I will ever go back to work. My family is my priority. Currently doing chemo and radiation. Have been told chances of further mets 80%. Considering applying for disability, does anyone have any words of wisdom??
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Thats how I look at it too, Carolben, each chemo is closer to at least a break. Ixempra seems to be doing the job right now, visible tumors on my chest wall are shrinking, so thats a good sign, I hope. Only 4 more too go. Still puts me into October, but....CS, Im sorry to hear of your troubles, I know sometimes its so scary, it takes your breath away...I know everytime I get bad news its hard to function. But we do it. Will be thinking about you....
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Mary, I don't know that the day will ever come that I can go to an employer and say 'I can promise you to be here Mon to Fri from 9 to 5 for at least 1 year'. So far I've applied for medical compensation from unemployment, but they will only pay for a limited time.
I think the next step here would be to be medically bonded. Am not sure how things work in your part of the world.
Must be great to see those tumors shrinking, makes having the Ixempra worthwhile. I have a big lump in my groin that comes up, then goes down, up, down. Of course it was down last time I saw my onc. If it's up on Tuesday when I go for chemo I can show it to the chemo nurse there for a start - I even took a photo of it! I have no infections and have no idea what it is, probably a gland. Just keeping a note in my diary of when it's up and when down. Oh the obsession with this strange body of mine.....
Hope Sunday will be sunny inside and out!
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Could be a lymph, I have one in my armpit that does that even though it doesnt light up in scans..MO doesnt seem too concerned about it..He says its the least of my worries. Thats comforting, right?
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Adding my voice,too...
I was diagnosed June 2011 with Micropapillary Stage IV TNBC and am learning to LIVE with this diagnosis. Never dreamed that I would still be here 2 years later (you know, we have ....CANCER... Stage IV)!! Taxol originally took me to NED, then when it wasn't effective against recurrent tumors (multiple lymph nodes in my axilla and neck) I switched to Doxil. That was effective against my cancer but beat me up too much - horrendous mouthsores -poor quality of life. Now giving my body a rest and will start Xeloda next. In fact, I have been on a chemo break for 4 months now, I feel great and have been able to take a couple of trips. Fortunately my cancer has been staying in my lymph nodes and not any vital organs.
I heard ithe Xeloda was easier to 'live' with and hope it will be effective against my cancer. I will share my experiences and would love to know other's experiences with this drug.
I have continued to work part-time, maintained my exercise regimen (strength & toning & yoga) throughout treatment. It helps to live my life as normally as possible. I am blessed such that I have been able to check off some of those things on my bucket list, for example to visit a friend from elementary school that I haven't seen in over 20 years and to go for a hot air balloon ride!!
This diagnosis has helped me to reprioritize my life. I have also discovered that there is abundant love and caring out there.......
It helps to know there are others out there with the same diangosis, thanks for sharing.
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Thank you indianadeb for sharing your story. A 4 month chemo break sounds great!
Here's hoping xeloda is kind to you. I haven't been on it but from what I have read it seems like a doable chemo.0 -
CSmommy....so sorry to hear of all your issues & fingers crossed you can get on the trial & that it gives good results....xxx
Indiandeb....I have been on Xeloda since February this year. I have found it very doable & convenient, very few side effects. My first scan after 9 weeks (3 cycles) showed progression & then my next scan 6 weeks later showed stable in the bones & slight shrinkage in the liver. My next onc appointment is this Thursday so fingers crossed the bloods are all good....no scan this time! I rally hope to stay on this one for a long time!
I haven't done Xempra but my onc has told it is a very harsh chemo....so hugs to all you girls on it.....(((hugs)))
Take care.
Karen x0 -
New here. Age 36. Just diagnosed in May with TN IDC, with mets to collar bone, spine, ribs, shoulders and full Liver involvement. What a scary thing. Married 18 years this past June, have 4 amazing children. I guess I'm in for a real fight. Nice to have a place to vent with People who actually know what your going through, sorry you are all here though. My thoughts go out to all of you. Keep hanging in there, you all seem to have positive spirits. I'm working on staying positive too through this hell.
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Caylians wife - welcome to the triple negative thread.
We are all in for a real fight and it helps if you have a good oncologist. They are learning things about triple negative all the time and you need your oncologist to be on top of any new developments. I also find this site to be a great database of knowledge.
I am 40, married for 15 years with 2 sons.
Anyway, good luck with your treatment. I hope it goes well for you.0 -
CayliansWife, I am not triple negative but I saw your question on a different thread, I thought you might find this brochure useful: http://www.tnbcfoundation.org/State-of-the-Art%20Treatment%20for%20TNBC.pdf
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I am Triple Negative stage iv. I started Navelbine 3 weeks a go. Today was my 3rd treatment. 2 weeks a go I found a lump under my arm, in the lymph node. I showed it to my doctor today after I felt that it was getting bigger. He told me that its too early to say that the Navalbine is not working and we will watch it. He also said that it could be because of the port that I have on this side and maybe it will resolve by it self. Somehow its hard for me to think so.
I was wondering if any one had the experience of finding new tumors that you could feel it your self without a scan while on chemo.
I don't want to loose hope. Iv been on a lot of different treatments and my cancer is progressing. I'm so afraid to get to the point that no medication is going to work.
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Hi all:was just wondering how many of you tn metsters also are brca1or 2 I know tn is more common in brca1 myself and most of my family members have brca 1 3 of us sisters with bc this is my second bc tn but my 2 sisters and my first bc was hormone positive I wanted to ask csmommy what is this test you had that determined that no chemo would work? ALso want you to know that im thinking of you and hope there is something for you.....Karen I had cytoxan and taxotere had a pneumonia after 3rd tx and spent 2 weeks in icu almost didnt come out so they said it was the taxotere and stopped chemo but after them finding a suspisious spot on my rib that appeared shrinking while in hosp they suspect mets as it shrunk thus assuming the chemo had shrunk it but as of now its stable so no biopsy til it grows wondering if ixempra would be used if it progresses or would they try the taxotere again? And Marywh I hope the ixempra se subside and is it worst than taxotere do you think for se? Not sure I could go through it again if se never subside.hope to hear from all of you re: some of my questions best to all......Brenda
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Mg - I haven't been on Navelbine so can't comment on how long it takes to work. I do have some subcutaneous nodules in my axilla and I know that they play on my mind so I can sympathise with what you are going through. Mine haven't got bigger in treatment but because I feel them so often I am unsure if one of them is getting smaller or stays the same. I hope someone can answer your questions.
Brenda - I am brca negative ( or quadruple negative).0 -
IndianaDeb,
A four month chemo break sounds wonderful to me. I have been on Xeloda 3 1/2 years and it has been working well. I have mets on my spine. Xeloda is bound to give you peeling feet and hands, watery eyes and fatigue but I find the SE's to be tolerable.
Best of Luck
Gigi
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Hi Marywh, how are you doing on the Ixempra? Hope it's not too horrible. I saw my onc last Tuesday and he did a fna of the lump in my groin, and it's a cyst - no malignant cells (music to my ears), whew!!
Indianadeb, good luck with the Xeloda, I haven't had it, so am no help there! A 4 month chemo break sounds like heaven! I'm almost there - another 3 sessions of Taxol and I've done the 6 months. Then I'm going on a chemo holiday - I don't care what they see in the CT scan after, no more chemo this year! I have plans - Israel to visit my son in September and Christmas with family in Johannesburg. My body needs to have a break, and I know that once you dont put the chemo into my body it starts feeling better and can get stronger again. My last chemo should be Aug 6th.
Welcome Caylianswife, sorry you need to be here - I also try to stay positive as much as I can, I'm sure it does have an effect on the body. Tho, of course I have my days in the pit too....
Also mgordon, welcome and sorry. I also get scared of the meds not working and running out of options. I think we all do. Triple neg is not to be trusted!
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Hi all. Carloben, Im so glad it turned out to be a cyst. I know you're breathing easier. Just got back from the mo, have been having bad dizzy episodes, dont know if its from the ixempra or allergy or a combination of both. He scheduled me for a brain mri on thursday, to rule out brain mets. I really dont think it is, but he wants to be sure, which is a good thing.Have I mentioned lately how much I hate bc??????????
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