Triple Negative Stage IV
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Welcome TexasRose! I hope you get very good scan results!!!
Barbar, hang in there! For us stage 4 metsters there is no such thing as a cure. So, we are always working on regression and/or containment and stability. NED would be ideal.
Hugs,
Brenda
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Thanks Brenda. I think it's the shock today as I have no symptoms I thought I wS ok. I can't feel the node in the neck but I am most worried about the liver. How does xeloda work . Is it just to try to stabilise ? Unfortunately we are trying to sort out to move as well
Does anybody get back to NED from this ?
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Psorry you showed progression. I'm sure you'll get past the shock, horrible though it is. Only question I can try to answer is the last one - I do think you can get back to NED. I had progression to hip, brain and a few lymph nodes and it has now practically all "disappeared". Although as Brenda says its containment we're aiming for. Just have to find the cocktail of drugs which works for you to keep it under control - and remember there are new drugs all the time.
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Hi . How do you stay strong and keep fighting . I have gone from feeling fine 36 hours ago to desperate and hopeless . Would love to hear a few people's stories of how they have positively come through regressions and kept themselves fighting Barbar
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BD
I think we all go through high and lows with this. Looking at my 18 year old son is my general spur to keep going. I didn't think I would see his 17 th birthday when I was first diagnosed- he'll be 19 in October. I have a v positive oncologist who believes life is for living and that there are major breakthroughs and encourages me to believe. I think you have to believe you're going to be a long term survivor.
I also focussed early on on trying to take some control. The only thing I could do myself was improve my diet and exercise so I walked a lot more places and focussed on what the nutritionist told me and lost 24 kilos. If nothing else it made me feel better about myself.
When you hit those 4am dark moments, just remember we all get them, and dawn will come.
Sorry, I'm can't give more practical help.
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felt even worse today when onc nurse phoned and asked me,among other things if I wanted to discuss what I wanted when chemo no longer works. I said no I want to concentrate on fighting but when off the phone I broke down in tears
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no wonder you felt worse! Some people just don't engage their brains before opening their mouths. Keep concentrating on what you want to concentrate on and ask her to make useful suggestions about what you can do to support yourself, be it rest, diet, exercise or anything else
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Bosco thanks for your understanding.
Does anybody get into years rather than months with triple negative stage 4?
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yes people do get into years. My anniversary was last month - one year living w stage 4 and I'm still working. To be honest, I didn't notice it.
Others on here have longer periods.
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thank you so much for your encouragement. It means a lot to me. The medical people make me feel depressed. I suppose it's because they work with it you become less of an individual but I am nearly a year with stage 4 as well and am beginning to get my fight back with family and this forum .Thank yo
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Keeps my spirits up
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Hi warriors,
I was dx 2 years next month with stage IV as well. Been fighting ever since. I am also still working but going to half time by December. I am also considering applying for disability. I am told that they will process and allow it pretty quickly. That would be nice. Have to keep up the fight and not let it get you down. We are human and will have low days but you just can't stay in that place for too long.
Have a great day tomorrow ladies. Lucy
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Thanks . Here's hoping the xeloda works . I start it on Friday.I really like your poster Bosco Barbara
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Bosco I love the poster !! and I would like to add, you are allowed time to rest, you've earned it.
Barb: fingers crossed it works ! I hope you feel ok on it. Its tough to feel positive ALL the time, but you aren't actively dying yet right? So keep living ! That's what I tell myself often.
Lucy thanks ! Im still working part time, I still have a LITTLE sick time left, though I did fill out FMLA papers last week... folks here at work can and want to donate time to me so that will stretch out the full time pay checks for a bit. Then I will consider disability... I have mixed feelings about it, psychologically it feels like Im giving up or something.
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hi everyone. Hope you are all doing as well as possible. Just to say I seem to be coping ok with the xeloda so far which I started on Friday. I am trying to encourage myself as in the last week I have driven my son to Heathrow which is a 3 hour drive from where I live and taken my younger daughter to a prom at the Royal Albert Hall as well as coping with my autistic teenager and her sleep and behavioural difficulties so feel I am doing pretty well physically.
All the best fellow battlers
Barbara
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Laura I know what you mean but I have been doing this for 2 years next month and although I think I can still work for a while I am ready to focus more on my health. My job is a higher level management position and it can take a lot out of me and I really think it is time for me to cut back. My hope is to apply for disability by January so praying that will go well.
Barb I am glad you're doing well on the xeloda. I did ok on it but it was hard on my feet and hands. They did lower the dose once but it still was so harsh for me. I have been off of it since July 16th and after 3 months and my poor feet still look sad. My hands are a lot better.
I started a new phase II study trial and it is Eribulin weekly 3 weeks on 1 week off. Started it last week Monday and so far so good. The side effects are neuropathy of hands and feet (poor feet), possible hair thinning, possible low blood counts and possible nausea. They say possible because many of the patients on the trial are not experiencing them.
I know a young gal who is 35 and has 4 kids who was dx a month ago with BC and she is leaning on doing all natural treatment. Starting to do the Gerson Therapy. She shared a lot of things with me and it all sounds interesting bad inviting but I have my reservations yet. I do use essential oils on the various pars of my body where they say there was and is cancer and I use a diffuser with the lavender oil at night when I sleep. I drink a lot of juices I make myself and eat organic. No dairy and little meat and when I do its organic chicken and wild caught salmon or halibut.
There is so much out there and I really do feel that I am supposed to be on this journey with my current team. I am a Christian so I do believe in prayer and that God has lead me on this path
Just wanted to share a little more about me and my journey and also put the topic of alternative medicine out there.
Have a great afternoon ladies...Lucy.
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Good morning all...well I got the results from my CT last Friday it was good. The largest tumor (in my lung) which was 1.4 cm is now half it's size. The next largest which was .5 mm is now .4 mm and the other 5 are unchanged. This is after just 8 weeks, 2 sessions of Paclitaxel (3 weeks on 1 week off) looks like it is doing the trick.
So far the only side effect is my hair loss. No neuropathy yet. I try and walk 2 miles each day to keep up my circulation. I work full time and stay busy. Praying things keep shrinking and maybe one day I will be NED
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That's fantastic news Texasrose...YIPPEE...\o/
I started a new trial drug had my second treatment yesterday and praying and hoping it does the trick too. I would love to hear NED!!!
Have a great day Warriors!!!
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Praying with you Spritblessing that you have good results!
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Hey Texasrose, glad to hear you are still working too. Sounds like our situation is simliar. Did you have it recur just in the lungs or was it in the breas as well? I see you were first dx in 2013. Did you have treatment back then as well? If so, what was it?
I am always so curious as to why they do the various treatments on us who have the same type of cancer. They said they would recommend TAC when I first spoke to my team but then they found the nodules on my lung and changed it.
You can pm too if you like. I know I am praying for a miracle to see NED in my journey. Have a good evening...Luc
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TexasRose and SpiritBlessing, I am in the sidelines cheering for you both!
TexasRose, sometimes I think a steady regression and stability are better than NED! I had NED for 5 months. It was an amazing time, but my disappointment when the MBC started creeping back into my system was almost worse than my first diagnosis.
SpirtBlessing, I hope Eribulin is the magic bullet that finally gives you what you want, NED. I love the spirit by which you are dealing with this God-forsaken disease.
Hugs,
Brenda
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Brenda, you're probably right about NED. Just been recently that I have heard of a few having the clear to go with NED and I was thinking it would be nice to hear that. I see you have had a lot of different drugs. I was thinking about that this time around that I have had 5 different ones now and how bad that in itself is. I am thankful that I am still here after two years and will continue the fight.
So here's a question for you...have you done research on any natural treatments? I know someone who is doing all treatment naturally and she has stage IV TNBC. She found out and they told her she had 6 months. It was in both breasts, chest, lungs and I'm sure more more but I stopped asking. She is doing the Gerson Therapy treatment. It's pretty extreme. Not sure how it's doing or if she has checked. She was already pretty extreme before the dx. She will be a year next month so she is surpassing what they told her. Makes me wonder sometimes. I know I really struggled at first because I always ate healthy and organic and exercised and then the dx.
So much out there that's for sure. Blessings ladies...Lucy
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Spirit/Lucy I have read about folks have good results on natural treatments, but I think its a very small minority. The way I look at it as that a. there are plenty (as yourself) of people who ate healthy etc and still ended up with a diagnosis and b. If it really worked across the board, there would be no cancer at all. That being said, given 6 months, I think anything one can try, what do you have to lose?
I've been curious about the very recent study that came out that eating a low methionine diet killed the base tumors in TNBC. That equates to vegan. I did read that taking glycine has almost the same effects of eating vegan without all the dietary restrictions.
My neuropathy is getting worse, the bottoms of my feet are SO numb. I have another treatment tomorrow, Im thinking about emailing my onc to say its worse before tomorrows dose and see if she wants to tweak the dose or not. Then I have my week off and I have scans before the next cycle starts.
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Lucy, yes I have had a lot of different treatments! My first diagnosis was more than 10 years ago. I think there's a few that I have not tried. One of them is what you are getting - Eribulin. Ixempra kicked my butt the first 10 days after infusion.
I think Gerson therapy started right here in San Diego. I would like to look into it. I like doing things in moderation when it comes to alternative therapies. I grew up eating only organic food. It was just the way it was. We lived in a big city but we had our own chickens and veggies were growing in our garden.
I also made sure I set a good example to my young students. I exercised and ate the "right" kind of food.
Hugs,
Brenda
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Hi everybody. Just wondered what side effects anybody who has done xeloda had suffered? I seem to be suddenly much more tired although still active and I am getting stomach aches like constipation .
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Hi Barb,
I was on xeloda for 3 months and my only side effects were my hands and feet. My feet were so burned as basically it is a burn from the inside out. They were so bad after the first week on it that they had to lower the dose. They were all but blistered. For two days it was like walking on glass until they lowered it. After thatched pain was less but still very irritated and red and peeling. My hands didn't get as bad. But the other thing was the pigment of my skin on hands and feet were dark brown. They all looked just awful. Off it now as it didn't do much for me. Onto something different now since the 13th.
How long have you been on it?
Lucy.
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hi Lucy. I have only been on it a week so far and the tiredness seems to have eased a bit today .its hard work though with the kids summer holidays especially as I have an autistic 15 year old. She is lovely but having behavioural problems at the moment. Barbar
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Hoping everyone is doing well.
Luc
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Hi Lucy, Im doing ok, didn't bounce back quite as far but Im at work today so that's good.
How are you doing?
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Hey Lucy...my cancer came back in my lung (1.3 cm right lung) and 6 small (less than .5 mm) one on my sternum, 2 lymph nodes, 3 left lung. But after the 8 weeks on Taxol the 1.3 cm is now half that size..whoo hooo! I am happy with the change in the right direction.
My original diagnosis in 2013 was all left breast. 2 cm tumor and 4 nodes positive for cancer. I had bi-lateral mastectomy, 6 rounds TAC and 28 radiation sessions. That all ended in May of 2014 and in May 2015 we found the metastasis. Not sure why the Doctors choose different treatment for the same type of BC. I actually changed Oncologists since my original diagnosis. I changed to one that my daughter wanted me to see. My daughter Manages one of the Units at a Hospital and she has a close relationship with one of the Oncologists that has patients on her unit. They have talked about my diagnosis and treatment since day one. The other Oncologist was going to have me do a different treatment than the Taxol.
I am early in the game of metastatic BC, you have played so much longer than I and give me the Hope for continued success. You are an inspiration!
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