Triple Negative Stage IV
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Spirit Blessings - I had a good run with Abraxane for 15 months. If you search these boards for Abraxane, you'll find lots of women who have had good success with this chemo and, although it's not side effect free, it is usually a very do-able chemo. I went 3 weeks on and 1 week off. I lost my hair (but some just get thinning hair so I wouldn't shave it until you see what it will do to you). Another common side effect is nails lifting and turning black - some women have them fall off. My NP suggested that I put vinegar in my dish water to kill fungus that can grow under the lifting nails. They're painful and look gross - the best advice I got from these boards was to keep them polished and cut short so they wouldn't catch on things to pull them back. A good hardening polish seems to save the nails. The other nice part of this is that you don't have to look at them being so icky. I used Sally Hanson Hard as Nails and never lost a nail and they returned to normal over time. Neuropathy is common, but mine isn't debilitating by any means. I had shortness of breath, but I still do, so I'm thinking it's the lung mets causing that. My feet swell with every chemo I have ever had. They would give me an anti-nauseau pre-med with the chemo. I would also take Immodium after chemo as I often had diarea for a few hours afterwards. All of these symptoms improved after the first 6 months. My nails re-attached and hair even started re-growing - though very very slowly! Drink lots and lots of water. Carry eye lubricating drops with you for when eyes get stingy and watery. That's the bad and the ugly of my experience. As for the good - I was able to continue working and living life pretty normally. I never got sick with it. I would get tired. But otherwise, I felt good. I have a chemo that's good to me now too overall, but I miss Abraxane being in my arsenal. It's one I would definitely be fine with doing again! I hope it treats you well.
Mamasboy - have you invited your mother to read and post on this site? We would love to meet her. There are some sites here that deal with recipes and nutrition that might be very helpful for her as well. And I wouldn't call us brave. We're doing what we have to do, just like most others would do when they find themselves in our shoes. There are lots of chemos out there to try, and I'm hoping her radiation shrinks that tumor down to a size where they can get rid of it. You can always get other opinions as well if you're unsure of her current treatment. Best wishes, and tell her to jump on here as she sounds like a great lady!
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Well I seem to have a plan in place. I have a consult with a Dr at a research clinic on the 14th. Chemo scheduled to start on the 16th with my MO. Gemzar and Avistan. Anything I should be aware of?
Thanks for any info!!
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Just wanted to tell you that debbiej, who joined this thread in Feb last year, has passed away. We got friendly and communicated by e-mail since then. She had mets to the lung from the get go, it spread to her brain, spinal fluid and then all over. She was at home with her family when she passed. Her husband set up this site for her. This disease really sucks!!
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Oh, Im so sorry to hear this. This disease truly sucks.
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What a beautiful woman. I know you'll think of her often, Carolben. Thanks for letting us know.
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Surfdreams - YAY for Stable!!! Wonderful news. So happy to hear. May you and the stable boy have a long and happy relationship!
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Hey Brenda. Yes. if the doc can get the tumor away from her chest than they will perform the surgery, if not then I don't know what's next. Right now she's only on the carboplatin. They had her on cytoxan and another one previously. She goes to the doc on Wednesday so I'll make sure to tell her to ask about gemzar. She said she wasn't on any medications accept for some nausea pills and stuff to combat the side effects but that's about it. Thanks for info. Everything helps.
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Mama's Boy, you are a good son! Please tell your mom to post here when she is able.
Brenda
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It can't get any better than this!" said Charlie Redfern. Charlie is my
oncologist. He called to tell me about the latest scans. He still
wants me to do my last chemo tomorrow, and I will still see him Monday
for my scheduled appointment. It sounds like he wants me to take
anti-hormone pills anyway, and he will try to convince me on Monday why
it might be a good idea.Thank you for your prayers and kind words. You have helped me get here. I know I am not cured, there's
still no cure, but this is the next best thing.Hugs to everyone,
Brenda
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I know this is a morbid question, but I just can't get it out of my head. What is the longest that anyone knows of someone surviving with stage IV?
I want to prepare many future notes and cards for my children to read, but I don't want to go through the emotional turmoil quite yet.I may not feel as pressured if I know the possibility exists for a longer life. Thanks
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I read about people who survived longer than 10 years at mbcn.org.
I have friends who were diagnosed with early stage TNBC around 2004 and they are still around.
Slowloris, I noticed that you don't have stage 4 cancer. You have every reason to think that you have better chances than most stage 4 ladies. Don't worry too much. Worrying stresses you out and that is not helping your immune system. You need your immune system to be working if you are getting chemo again.
I will keep you in my prayers.
Brenda
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Brenda, No I am not stage IV YET. In 18 mo.s, I've had the cancer pop up 3 x. I had a PET on Wed, Friday confirmed I have numerous nodules subcutaneously over sternum with possible deep level node involvement. I started my 3rd treatment of chemo, this time gemzar/carbo combo. I can count atleast 9 different lumps, with 2 now on left breast. First recurrence was only 5 wks after I was done initial tx. This recurrence was only 6 wks after 2nd mx.
So , no, although I'm not there yet, I do believe it will happen someday. My cancer is so high grade, it replicates so fast. I'm not pessimistic, just more pragmatic. My prognosis for life expectancy was not given (nor asked), but I was told I would probably be on some form of chemo for the rest of my life, however long that is.
I am not pessimistic by any means, I know that a vaccine is being worked on at this time, as well as numerous trials for tnbc. I'm always hopeful for better treatment as well as a cure. I guess I asked that question bc I developed a slight cough and I thought perhaps it had traveled to my lungs. Thank God the scan proved otherwise.
Thanks for your answer. I hope you are well.
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I did not know until today that Karen (OBXK) passed away last month. I am so sorry to be the bearer of sad news if you did not know this yet.
Sweet lady. May she rest in peace.
Hugs to everyone,
Brenda
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So sorry to hear about Karen, Brenda, thank you for letting us know. I always got something out of what she posted, she will be missed. This is the 2nd one now, and there's another woman here in my town who is so bad, sure she's on her way out too! I hate this disease, you make a whole lot of new friends and they die..
Good news is my scan last week showed stable, so the Xeloda is doing its work, thank God, I'm really so relieved!!!!
Slowloris, it sounds like you have a real bitchy strain of 3neg, dammit (hugs). I hear good things about the carbo/gemzar combo - didn't it make all your lung tumors disappear, Brenda? Hang in there, it's hard to hear that we will be on one form of chemo or another from now on. And the life expectancy thing - well, they have stats, but we are not stats, and however long I have left, I want to live it as well as I can, and take some joy out of every day. My qol is still good (apart from se), so as long as they can keep me stable, that should continue, and I'm doing stuff that makes me happy. Am pleased it's not in your lungs!
Taking a beating with fatigue, just checking in quickly, I feel a morning nap coming on!
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Sadly, debbiej's name has been added to the BCO List of Angels.
celia
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So sorry to hear of debbiej. I did not know her, but i grieve just the same. Everytime I hear of one of us passing, a little bit of my heart seems to be cut away. May God rest her soul.
Carolben, thanks for your well wishes. So far, 2 tx with Carbo/genzar down. I can already feel it working, as the swelling in my hand has gone down since I've been on it. My "bitchy" tnbc likes to set up shop in the skin and lymph system, so now that I can see less swelling, I know the meds are targeting those little suckers in my skin. Praying for a long run on this .
time to make dinner. The kids don't let me think I'm sick in any way. They still want their dinner! I thank God for my family every day.
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Slowloris, the carboplatin/gemzar combo wiped away my tumors. I hope that you are having the same experience.
Hugs to everyone!
Brenda
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Does anyone have brain mets? I was just diagnosed and will begin WBR on Thursday.
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my mom is 77 and dx 2009 and now has mets in liver 3 tumors they want to put in clinical trial but not sure she is going to do it! Does anyone recommend and chemos or clickable trials?
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Mamapeg, so sorry to hear of your brain mets. I don't know anything about it, but I'm sure there are sisters here that can advise you.
How did they find this out? Did you have symptoms, or just request a head scan?
Praying for a stop of spread and that WBR shrinks anything thats there down to nothing. God bless. (((hugs)))
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I don't know anything about brain mets either, but I do know there is a brain mets thread that's supposed to be good and pretty active. Things for me have been a little rough the past couple weeks. Got started on the vp 16, which seems to be working pretty well right now, don't have as much pain in the liver and the swelling is down. Now Im off of it for awhile cause platelets are too low. Have thrush in my mouth from the chemo, so maybe I did need a break...I just hate to take one when I know its working. Will check my blood again Friday. I was so sorry to hear about Debbie, this disease just doesn't quit, does it?
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Has anyone ever had their Onc tell them that they were not a candidate for surgery? My Onc says if I was to be opened up my cancer would spread like wildfire....I always thought that was a old wise tale? I don't want surgery, but if removing my lung and the tumor in my chest wall prolongs my life.....
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Interesting. I always thought that was an old wives tale as well. Here's a link to the American Cancer Society
in answer to this question. I would sure show it to your Oncologist, and ask for clarification:
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Slowloris,
I asked for one. I have never been symptomatic with pain to liver, lungs, or back.
I did notice over that last couple of weeks, that I am hitting the wrong keys on the computer. THANK GOD I DIDN'T PROCRASTINATE!
I am VERY fortunate that I have EXCELLENT Doctors that order tests when I ask for them. Anyway, 15 treatments of WBR, then back on chemo. Lungs and liver progression and found 2 spots on my spine.
Done with work - going on Leave of absence and then disability.
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There is this guy from New York who is very worried about his wife. I met him online on the TNBC website. He contacted me because his wife and I were having the same issues with breathing and mets to the lung. He now wants to talk to someone who has had experience or is now using a catheter to drain pleural effusions. If you are interested in helping this guy and his wife, have had lung mets and experience with a catheter, would you please PM me so I can give you his phone number?
Thanks.
Brenda
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Kimmie and Surfdreams, I have had 2 surgeries, both bmx. 1st was skin sparing with TE's. 5 wks after rads were done, tumors came up in my skin. 2nd was a more complete mx with flap recon . 4 wks after surgery, tumors came up again between my breast and on the unaffected breast skin. When I spoke to the MO about seeing the BS again, she said no. Her exact words were "It's like whack a mole... If you take them out, they will pop up somewhere else".
Apparently, my cancer likes to set up shop in the skin on or near the breast. It's better to treat it there, keep it there, and try to prevent it from going to an organ. When I talked to my niece who is a veterinarian, she agreed. SOME cancers will stay where they are for a long time, and if their preferred spot is no longer available, it forces them to go somewhere else. I never actually read any papers on this, but my experience shows that it can be true for some of us.
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Hello 11tybillion,
You can count me in on this page too. I can completely understand how you are feeling. I was originally diagnosed July 2011 and have been fighting ever since. I think I had a 6 month break in 2012 with no re-occurrences. Came back in my lymph nodes, then lungs, then brain (with 10 WBR) kept them at bay until recently, now a spot on my liver and one of the spots on my brain has started to grow again. According to the Oncologist, he has given me 3-6 months. I am married and have a 3 year old. I find this hard to wrap my head around it. I have been really positive and trying to keep it that way but this was quite a blow. I am starting 8 radiation treatments starting Feb 6 to the brain and lung. Then another chemo(don't know the name) in hopes to shrink the liver tumor. Oncologist gives the chemo a 5% chance of working. Hey, I would take 1-2% chance at this point! What else can we do?
I'm still trying to navigate this sight and takes me awhile to find a reply. Is there an easier way than going through all the posts?
Hugs,
Lisa
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Lisa,
I noticed you have not had the carboplatin/gemzar combo. This combo got rid of my lung mets. Also, I heard the xeloda goes through the b/b barrier? It is oral chemo and has its own host of s/e's.
There's a lady who goes by the username "leggo" who is a dietician and attributes the shrinking of her tumors to DCA. You could PM her. She is very nice and eager to help. She said she refused brain radiation and her tumors shrank anyway.
Don't go by statistics from your doctor. You are a unique individual and your bc is also unique.
Take care!
Brenda
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Hello ladies, I have been a lurker for a few months, well since November when I learned my cancer was back and metastized. After the first PET scan, there was activity in the liver, pancreas near my bladder, and two nodes, 1 near my sternum and one in my non-cancer boob. I have had 3 rounds of chemo, and just had my second PET today. Thursday I will learn if it's working. I spent 18 months NED!! Or so I was told. This is all so surreal right now, as it has been a quick 3 months. I was ok when the Onco told my husband and I what they found, but it became overwhelming when they brought in the chaplain and a social worker to speak to us. I do remember the apt I had before the PET scan, the onco said they would have me meet with the surgeon to discuss that portion. After that, nothing more was said about a surgery option. I have been waiting to hear how chemo is working before I broach this question. I also did not want to know the onco's take on prognosis. I don't want that to have any affect on my positive mind set.
So that's it- reality!! Looking forward to sharing this journey with each and everyone of you, even though I wish it weren't to be.
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Hi Lory,
Welcome! I joined this thread in September of 2013, so I have not been a metster long, like you. Were one of your tumors biopsied to determine the pathology of your mets? Hormone receptor status changes sometimes. If you look at my signature you'll find out that mine did. I hope that your new chemo cocktail does its job and eradicates your metastases. Don't lose hope. There's a lot more chemo you have not tried. Stay positive!
Hugs,
Brenda
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