I need encouragement from my fellow survivors

Shannon 

hugs to you. I am 51 and dealing with bone metastasis. Different chemo have different side effectS 

you can request liver biopcy to see if TNC changed to Her2.

hugs

RozHopkins said:

No not in your shoes.

But seems like you are having a tough time to say the least.  I would hate the thought of long term chemo whatever the mix of drugs are.  I just had the more common four treatments no rads and that was enough for me.  The treatment seemed worse to deal with long after completion, due to late side effects.  50 years old, and are battling on, good luck to you and I hope some one gets back to you with similar problem.  Sorry you have a heavy heart this time of year too.

So sorry you have this tough road ahead of you and I hope you will respond to all the treatments well and send this beast into remission.  You are only 50 years old and I hope this relative youth (I'm 66) means you're strong enough to deal with whatever they throw at you.

Happy Holidays, Suzanne

Shannon, I am so very sorry that you are having to go through this.  It just sucks!

I have been Stage 4 for 8 years now.  Originally ER+, now ER - and her2+.  Since liver mets this year, I will also be on chemo until it stops working.  I have good days and bad days, but I really enjoy the good days.  Being scared is a normal feeling.  If you get overwhelmed, ask your onc for help.  I was getting too weepy this year and we upped my dose of lexapro.  That has helped a lot.

Good luck and keep fighting!  Hugs and prayers!

Shannon, I am so very sorry to hear about your cancer.  I have Stage 4 that has spread to my ribs, lung and liver but it was initially ER+, her2 unknown (diagnosed in 1987 before they began testing for her2).  It metastasized to ribs and lung in 2005.  This year it spread to my liver.  Strangely, that biopsy came back ER neg and her2 +.  I was put on taxotere, herecptin and perjeta.  The taxotere was hard on me, but I only had to do 6 treatments.  I am now on herceptin and perjeta every 3 weeks for as long as it works.  The side effects on the two are sometimes bad, but not nearly as bad as taxotere was for me.

We are all so very different and there are so many types of breast cancer.  I don't know a lot about triple neg, but I have become good at managing side effects.  

Our bodies are all very, very different and I can only tell you what works for me.  For diarrhea, lomotil (prescription) works for me, immodium doesn't.  For constipation, I take metamucil (they have wafers or capsules now), increase my fluid intake and drink a small cup of prune juice.   I also take a probiotic every day and I personally recommend align (one once recommended by my gastroenterologist when I had a gut infection).  I have tried most of the over the counter probiotics and my gut likes align.  For fatigue, I now often take a nap.  I was never, ever a nap taker, but it does help me now.  Also, I walk twice a day-often just about a mile, but, when I can, 3 miles.  Exercise does give me more energy and seems to help with the aches and pains.  I had the black nails and lost 3.  I couldn't do much about that, but I did try and protect them.  When I  would lose all or part of one, I would dab it with neosporin and a bandaid during the day and then, when I wasn't using my hands as much, I would take the bandaid off and let the nail breathe to avoid a fungal infection.  I somehow didn't get the eye tearing, but I did get blepharitis (inflammation and swelling of the eyelids).  That is another story.  I do have chronic nose drip-even now.  I have switched to the Puffs with aloe and I have a "nose" chapstick that I swipe under my nose in the morning to keep the skin from breaking down.  For neuropathy, it helped me to keep my feet elevated up on a pillow whenever I wasn't walking and to keep my feet bare when they burned.  Thus far, I have missed the severe neuropathy, but it is hard to avoid if you are on a taxane longterm.  There are meds that can help somewhat such as antidepressants (they block nerve pathways), lyrica and pain meds.  For most folks, narcotics make them sleepy, but for about 25% of the population (me included), they can pep you up.  Sometimes when I am really exhausted, I think all of the aches and pain can contribute.  For me, a tiny dose of a vicodin (I am talking tiny as in 2.5mg hydrocodone with 150 mg acetaminophen) helps a lot without the side effects.  My stomach is still pretty nausea prone, so I reserve that for very rarely and I realize that low a dose wouldn't do it for most.  I am really sensitive to meds and my onc jokingly calls me a "cheap date."

As I said before, our bodies are so very different.  So what I am really trying to say is learn yours as best you can and advocate for yourself.  The squeaky wheel gets the grease.  Pick the brains of a trusted oncology nurse or oncologist for help with your individual problems and don't give up if something doesn't work.  To be honest, my nurses have usually suggested the practical tips and meds and then I ask my onc and he says ok, good idea...lol.  I bring my nurses food bribes from time to time.  Nurses and physicians love food.  It certainly can't hurt to balance my whining with a little goodie, right...lol.  

Quality of the life you have left is important.  Speak up and get help with those side effects!  Sending you healing hugs!!!

P.S.  If I ramble, please forgive me because I know I have chemo brain too.  I haven't figured out what to do about it except to not worry about it.  Worry just makes it worse, so I just flow with it.