Alainest

Checking in to see how you are doing. Have you been in any trials? There are a lot of trials plus new combinations of old meds being recommended. Difficult to keep up but now and then I do see an article or abstract about/for us her2 gals. Hope you are well, enjoying winter in a state with seasons.

Dear Miss Alainest: I just "found" you today. Oh my goodness, your initial cancer wasn't triple negative, but your recurrent cancer was??!! How nightmarish. I'm so sorry for your diagnoses.
I had a recurrence of tnbc but only IIIb.
I am going to start praying for you right now. You will be my special intention on my home alter tonight. I want you to feel better. I want you to have hope.
Can you try Xeloda=trade name, capecitabine=generic name?
It was a chemo tablet originally used for certain lung and colon cancers. Now it can be utilized in some patients with with stage IIIB and IV tnbc metastatic breast cancer.
I started my second bottle of 84 tablets last week.
My regime is three 500mg tabs twice a day for 14 days, then 3-4 days I get some labs drawn to make sure I'm OK to start back up again after having 7 days off. It's a rotating schedule like that for 6 months. It's not pleasant but doable. This is my last medication to try. Or find a clinical trial. I miss the parameters by something in all the ones I've found thus far.
Please know that I'm thinking of you and sincerely praying for you to feel better and have your cancer cells get turned around.
Your What Next "Ohana" (family in Hawai'Ian language) are with you every day and every night. God bless you.
Katie

Sure I understand the craziness when you just dont feel good. That is exactly what I told thst fella .. that quitting wasnt going to make me well and, at least, I could smoke from beginning to end and without help or assist a fricking cigarette. I amucky he said something new, observant, and clever.

The brand I switched to is American Spirit. Just switching was difficult but I found something adequate as a replacement (the company makes pure regular, light, menthol, organic and whatever.

I was amazed, after the first few months that I could recognize my "must smoke" triggers which enabled me to smoke less or smoke one cigarette but not another. During those 2 years I quit 2x for a few months but it did not take until the right thing was said. I could forgive myself being a corporate slave but not for causing my own
demise or further debilitation.

One of the first things I noticed was a difference in my physical behavior. I found myself wringing my hands at a traffic stop and thought "Gee, when is the last time I did that?"

I also now use a neti pot as I have found that my 'deviated septum' causes some problems.

Anyways, please be kind to yourself.

Hugs to you. Everybody goes through the stages of mourning. And it is not the same for everybody. I also had trouble this second time. And I am disgusted with myself, because I wasted a lot of time that I could have enjoyed. I prefer to be treated as normal and work fulltime although it is very stressful at times.

I have a daughter to put through Med School. I cannot quit yet. And I need to feel a wet kiss from a grandchild - I do not have 1 yet. I have a married daughter already. And I have to see my 2 brothers and sister in South Africa again after 10 years. See, I have to live a little longer and not die a little more.

You will feel better again. You will see ...

Hi! Thank you for your message. I had a hard time figuring out how to post my experiences on the website so that they made sense. Some of it is chemo brain, I'm sure. In 1998 when I was 47, I was diagnosed with Stage II breast cancer with node involvement, Her2+ and hormone neg. I had lumpectomy, chemo (taxol/adriamycin/cytoxin),and radiation. I had almost 15 years in remission. In January of 2013 at age 61 I had a recurrence in the scar tissue of the affected breast with a metastasis to my opposite side lung making me Stage IV, a Lifer. I had chemo (taxatere/ Perjeta/Herceptin). Then I had my affected breast removed. When they did the pathology report on th breast tissue, they found no cancer! I had a CT scan of my lung, they found no cancer! Those wonderful drugs put me in remission!!!!! I hope they will do the same for you. So much! So, I've been in remission for 3 years and just had scans and they once again see no cancer. I'm still on Herceptin infusions every 3 weeks. Some side effects of course. And, yes, I'm still tired. The first few days after treatment I have trouble sleeping. Then for a week or so, I get some diarrhea issues, muscle cramping and sometimes stiff joints. Sometimes I have heart palpatations. The next week I usually feel really good...almost normal. I'm now waiting to be scheduled to have my other breast removed. It's just preventative and to make me even. I hate the weight of the D cup prosthesis I have to wear!!

You've been through so much! All I can say is that I'm sorry and I hope with all my heart that Perjeta and Herceptin work for you like they did for me. We'll have a party! Hugs, Jennifer

Hi, glad for your current news. Have you done any trials? Don't give up hope as understanding & management of the different forms of breast cancer are improving.

Hi, Alainest. I just read your "experiences". How are you doing these days?

Hi fellow Metavivor! From your profile, I can't quite figure out where you are in your treatment. I've had breast cancer for a total of 16 years, the last 3 have been metastatic (small tumor in lung). I'm currently in remission and plan to stay that way for many many years thanks to Herceptin, my frenemy. Please feel free to ask me any questions as it seems I'm a little further on down the cancer road, so to speak. Jennifer

Glad for your good news, I have a big check up in December, I will let you know. I guess we learn to live with extra sensory nerves :-}

You are entitled to the occasional hissy fit. You are doing the best you can so give yourself some hugs too.

Hope you are doing well. It's tough but you can do this! Sending you positive, healing thoughts. Barb

Hmmm, Inspire is also a good site. I too am an her2 only gal, lots of research, options, & hope.

Welcome to the site. I am sure that you will find this a friendly place to come when you need someone to talk to. We are all in the same boat when it comes to emotions and feelings about our health. Just know that no question is to silly to ask and if you need to vent because you are having a bad day, we are here for you. I hope you find this site as helpful to you as it has been for me.

Hello Alainest, I know this is scary. You just have to take it one day at a time. Something that helps me is getting a piece of paper and writing down my blessings each day. It gives me something to focus on besides being sick. Besides the usual things for pain, sometimes meditation works and there are no side effects. Light a good smelling candle and take some deep breaths. We are all in this together, please write if you'd like to talk. Sending you hugs!

My aunt by marriage is a Stage IV breast cancer survivor. She takes some medication to prevent it from spreading to her bones but she's been in remission for almost three years now. Still doing great shopping all tye time : ) Also had an aunt Stage III who is 7 years in remission a coworker Stage III triple negative and six years in remission. Put your faith in God and praye everyday for strength and you will be fine. I've heard so many miraculous survival stories and I pray that yours will be one of those as well.

Hello and welcome, we are happy to have you with us. Please feel free to join in the conversations. Here is a link to our cancer dx page for your type of cancer. Take a look at it to get you started on some information. You will notice at the bottom of that page 4 of our active users who have had that journey already, you may wish to contact them for their experience and wisdom. Also, I encourage you to go to the questions page now by clicking on the questions tab at the top of the page and post what is the most pressing issue you have right now. This will introduce you to the community and get you started on the help you need right now.

https://www.whatnext.com/conditions/cancer/breast-cancer

There are also subtypes listed on this page to narrow down the type of cancer to match your dx.

Also, if you can take a few minutes and fill in some details of your journey so far, it will help others as they try to answer questions for you, it also helps others as they search through the data base to find someone like themselves. Confirming your email will allow you to receive updates and notices from the site when someone answers your questions or writes on your wall.

Thanks for being with us and let me know if I can help you find any information on the site. After you have an opportunity to look the site over and see what great things there are here, we encourage you to invite your friends, family or anyone you know that may be helped by the connections on WhatNext to join the site also. Just click this link to invite them to join. http://www.whatnext.com/recruit-a-friend

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GregP 3X Survivor

welcome to WhatNext. I'm sorry you needed to find us, but now that you are here you will find the greatest bunch of supportive people whose combined knowledge is awesome. We can answer your questions, hear you vent and celebrate good news with you.

I see you have begun exploring our site and look forward to learning more about you and your journey

My TNBC Metastasized into my liver in May 2012. Stay strong - there are many targeted treatments out there, and more in trials and in the pipeline. Speak with your team about sequencing your cancer the type of mutations and the percentage can help them put togehter the best treatment plan for you.

Hi! There is a lot of treatment options and hope now for us, keep the faith and hang in there! Hugs!

Welcome to the WhatNext family! The WhatNext family is made up of people like you who are looking for help or looking to help others. To help you along your journey the WhatNext family has put together a Beginner's Guide to Cancer that I highly recommend you check-out here: http://bit.ly/10BQKCi. Also, please do not hesitate to reach out to others or ask for help.

Wishing you the best.

David
Founder, WhatNexter