New Stage IV Diagnosis :(

MothersDaughterTNBC

My mom found a lump a week a half ago. She went to the doctor on Monday, mammagram, ultrasound, and biopsy on Tuesday, and got the dreaded news that not only was there one spot in the left breast but there was another spot in the same breast and a lymph node with cancer. My parents met with the doctor on Friday and found out it was triple negative. She had a PET scan on Saturday and found out there were spots on the liver on Monday. The oncologist said 90% sure cancer. She got a port put in on Tuesday and a liver biopsy on Wednesday and started chemo on Thursday. Friday, she went to get an MRI on the brain and thankfully there was no cancer. This week has been the worst week I have ever had!!!



I live in Colorado so I came to SC to be here with them for chemo. My brother was studying abroad in Australia so he came home to be with them as well.



We don't know a whole lot yet but I do know her chemo is AC + Taxol. Any advice for her to have minimal side effects? Right now, she has mainly been tired, nauseas, and an upset stomach.



I've been reading a lot of posts here since we found out and they have been so much help! Other things on the internet have been so depressing so I am thankful for this forum.



If you have any advice for a newly diagnosed TNBC stage IV, it would be greatly appreciated!



I want to get it out of her soooo bad and feel so helpless!



Prayers are greatly appreciated as well!!!



Shannon



PS Sorry so long!!

Moderators

Hello MothersDaughter, and welcome to Breastcancer.org.

We're so sorry about your mom's new diagnosis. It sounds as though her medical team is right on top of testing and treatments, which bodes well for her ongoing care. And your loving support with your family must be a huge help to her.

As well as what you have and will learn from others in this awesome community, the main Breastcancer.org site is packed with information about TNBC, its treatments, treatment side effects (and how to manage them), and much more.

Best wishes to your mother and your family.

• The Mods

barsco1963

Hi MothersDaughter - so sorry that your mom has been dealt such a crappy hand. I am not TN but I do have liver mets and have done well with tx to date - still on first tx from dx.

You have come to the best place for experience, support and encouragement. We are here for each other to help deal with the good (and there will be some good) the bad and the ugly. I am sure it is all a whirlwind right now, but things will settle down a bit and you will find some peace in the routine that will become the "new normal"

Wishing your mom great success with tx and getting the SEs under control.

MothersDaughterTNBC

Thanks for that!



I find a lot of comfort. Everyone has told my mom to stay off the internet so I try to share uplifting things with her. I may get her to look around here so that she doesn't feel alone. I know faith and family are getting her through but others who actually know exactly how she feels is really important!



I'm glad tx is working for you and continues to work a for you!



Thanks!

lotusblossom

Hi MothersDaughter,

I know that a TN diagnosis can be extremely scary, particularly when you are diagnosed at stage 4 from the beginning.

I was also diagnosed at stage 4 with mets to the lungs, bones, spleen, biliary tract and lymph nodes.  That was 4 years ago.  It has taken a long time, but my CT scans now show "almost complete resolution of metastases".  Throughout these past 4 years, I have worked hard to eat right and continue exercising. I also stopped sweating the small stuff and make an efort to ENJOY each day as much as possible. My onc thinks this ( particularly the exercise) has made a big difference in how I feel.

So, you are right to avoid the bad stuff on the internet (and there is alot of it). But there is also quite a bit of information that is useful, like information on how to control nausea, constipation, etc. 

Barsco is right. You have come to the best place!

MothersDaughterTNBC

Wow lotusblossom,



Thanks for sharing! I'm glad to hear your story! I will have to read it to my mom and dad!



I hope you continue to have good news come your way!

candi07

MothersDaughterTNBC, I know it must be very difficult to be told this news. I am praying for your mom and family. Take care!

MothersDaughterTNBC

Thanks!

SewStrong

Hello, I am sorry to hear of your mother's diagnosis. I think it would be easier to be diagnosed myself rather than my mother. One thing my oncologist told me up front was to begin taking a vitamin D3 supplement daily. I take 2000 mg. He told me it would help keep from having a recurrencen. Also, I've been told by 3 oncologists to go on a low-fat diet with lots of dark green vegetables and fruits, like blueberries, nuts like walnuts, and lots of water. I hope this helps.

MothersDaughterTNBC

Thanks Sharon! It has been extremely difficult for the family. I want her to be around for a long time.



My parents asked the oncologist if she should eat anything or not eat anything and he said to eat whatever she could eat. I find that a little strange since I have seen so much about foods that have cancer fighting properties. I told her to eat lots of blueberries and green vegetables. I just bought Dr. Joel Fuhrmans book on Immunity on my kindle (we share books) and told her she might want to read it. I haven't finished it but it has a lot of information about foods that build up your immune system and then combat cancer. I wish the doctor would have told her this stuff your doc has told you. I just don't understand how a doctor can say that food can't help or at least make her feel a little better during chemo. Weird.



Thanks again. I will pass this along to her!

exbrnxgrl

Hi,

So glad that you and your mom are beginning to see that there is reason to hope. Yes, people do die from this and the reality is that most of will, but not today:)

As to nutrition, some oncs don't seem to want to deal with this aspect of treating bc. Although I don't believe that certain foods will cure me, I believe that a good diet is helpful to everyone and sound nutritional habits can make us feel better. That being said, I also believe food and the socializing that often gets with it greatly contribute to QOL. So, if your mom wants dessert or a glass of wine, she should thoroughly enjoy it.

Caryn

MothersDaughterTNBC

Thanks Caryn!



I definitely think the social aspect is a huge part since it is hard to find healthy options at restaurants. It is also good for her to go out as she had depression before all of this and the diagnosis has made it worse (as to be expected). I think she is trying to figure out how healthy she wants to go. I just want her to feel good during treatments (if that's possible) and I have heard that a healthy diet can at least be bearable.

208sandy

Hi:

Just wanted to share a couple of things with you - first of all where in SC - I was treated in Greenville and had wonderful doctors there (I have since moved back home to Canada where I also have wonderful doctors).

As for foods - right now with chemo your Mom's onc is right - it's whatever you CAN eat right now - healthy can come later after chemo.  Also did they give her Emend - that is the drug they give you a day or two before chemo and because of that I never had nausea - I was mostly in a fog for a couple of weeks, then one week of normal then back to chemo.

There is a really good cookbook called "Eating Well Through Cancer" written by Holly Clegg and Gerald P. Miletello, MD the ISBN #is 978-0-9610888-8-0 it was a "freebie" from one of the drug companies that my cancer clinic was handing out but you should be able to order it either online or at a bookstore - it had lots of helpful tips and really quite good recipes (I gave my copy away but as you can see I kept the info so I could order another one).

Last tip "stay away from Dr. Google" it will just make you anxious and there's often no way of knowing where the information is coming from - I've gotten many tips off BCO but ALWAYS CHECK WITH YOUR DR OR NURSES before you take any supplements or radically change your diet.

Sending hugs, S.

MothersDaughterTNBC

Thanks Sandy! She is in Columbia, SC. My brother has been cooking foods from that book. Some really good food! There have been a few recipes that my mom couldn't eat because it had a strong smell. That has been the go to cookbook so far.



They gave her compazine which has helped but she still gets a little queasy every once in a while. She gets Emend at the same time as chemo.



Thanks for the tip. We definitely won't do anything without asking the doctor first. We want the chemo to get all those little buggers in her body. We definitely don't want anything interfering with that. We've already had someone tell her to take probiotics in addition to a bunch of other stuff. The doctor said no to probiotics so we've learned not to make decisions based on what others say or what we read. We even asked about antioxidants because we've heard sometimes that can effect the chemo. I try to look at proven research rather than some random website that claims crazy things.





I told her there was probably a healthy medium between the radical diets and the unhealthy diets. Someone recommended "Crazy Sexy Diet" by Kris Carr. I don't know much about her but I think? She is on the radical side? My family doesn't have very healthy habits so I do think it will be good to go a little bit healthier.



Thanks again!

208sandy

Good to hear from you - I had compazine but never took it (I still have the full bottle - need to get to a drug disposal I think) - also I did have and still do take Ativan - it helped immensely - first it was given to me for nausea and now I take it for anxiety (on days when I have scans or I know I am going to be stressed more than normal).

Oncs get "crazy" when you try to take supplements mainly because they are trying to breakdown your body to cure it with the chemo and they sure don't want you taking anything to interefere with that.

I have been a mostly healthy eater all my life BUT during chemo I developed a taste for of all things EASYMAC (probably the most disgusting food on the market) - the problem is the smell of almost anything turned me off as did the look of anything green - before chemo I ate salad every single day - sometimes twice a day and had for years and years - I have just now in the last six months been able to eat salad again (I finished chemo in November '08) - oh yes, another thing I did during chemo was start taking Zantac 2X a day - the 75mg - the onc suggested it and I took it for almost two years because I had pretty bad reflux - again, check with the onc but it might make your Mom feel better.

Take care, S.

MothersDaughterTNBC

I think they gave her Ativan as well but she hasn't used it I don't believe. She takes Lexapro and Ambient CR so it may be that she was worried about taking all of them at the same time. They just increased her Lexapro dose so hopefully that helps her deal with the depression.





She has talked about not having an appetite. I don't think she has developed any cravings yet. We have to make sure she eats sometimes.



EasyMac was a go to for me in college. The nurse told my mom that she used to tell people to eat healthy but now tells everyone to eat what they're craving. Apparently she went through chemo herself for bc so she knows first hand about the cravings and the appetite.

MothersDaughterTNBC

Her cravings were double cheeseburgers.:)

ProfTNBC

So sorry to learn about your mom's diagnosis.  I am also TN.  I've been through AC already.  I found that using anti-nausea medication before being nauseated helped the most, and to get whatever worked.  (There is a lot on the market nowadays - surely something that will work well for your mom.)  I also used Ativan/Lexapro at night to help me sleep since rest is so important to healing.  I took up eating lots of spinach - I like it, and it is iron-rich.  D3 is a good idea as you've pointed out (or someone did).  My doctor prescribed glutamine powder to control muscle aches (I couldn't tolerate it in apple or any other juice, but found tapioca pudding to be just the thing that worked for me - I took two scoops of the powder a day).I used Tylenol on a regular basis to also help control the pain. I walked for exercise, but spent a lot of time on the couch when I wasn't at work.  Taxol was another story.  There is a thread on this website about taxol dose-dense and weekly taxol.  When your mom gets to Taxol, you may want to consult whichever thread is relevant in terms of what folks have done to help them through the side effects.

Good luck to you and your mom - and your whole family.

MothersDaughterTNBC

Thanks so much! I'm so glad that I've found this site. My mom asks what the forums say since she is afraid to read anything. Someone sent her a blog about Emma Stone's mom and she clicked on a couple of links on the page. Bad idea! She read a bunch of stuff that really scared her so she stays away from the Internet at this point.



Thanks for the info everyone! I will pass along!!

corll

LotusBlossom:

I was just diagnosed TN Stage IV with mets to lymph nodes and lungs.  This is a recurrance after 3 years, DR wants to put me on Xeloda.  What did you take?  He is telling me the average time span in 1-1/2 to 2 years with this diagnosis.  I'm not sure what to do at this point, very unsettling right now and could use some advise from someone that's been there!  Thanks!  Vicki

Milo

Hi Everyone - I am posting here to help get some positive ideas (and to take a few minutes from crying).  I was diagnosed with triple negative breast cancer on Jan 10, 2012.  I went through 4 chemo treatments of taxotere and cytoxan and then 35 radiation treatments which ended July 2, 2012.  I did everything my docs recommended and I thought I would be able to resume a regular life and live for a long time.  I have continued to have 3 month blood tests with my chemo doc, and check ups with my radiation and breast surgeon docs.  My July tumor marker blood tests were elevated, so my chemo doc had the tests redone on Aug 13th.  On Aug 14th, my chemo doc said the tumor markers had increased again and he recommended a PET scan.  I had the PET scan done this morning.  This afternoon my chemo doc called me and said my PET scan showed 3 lesions on my spine.  He said I needed to have a biopsy of one of the lesions to see more about the cancer receptors and I needed a MRI of my brain to see if the cancer had spread there.  He said I have stage IV cancer and only about 1-2 years left to live.  He said that's the average years for someone with my cancer.  I am devasted.  I took a break from crying and went to the gym for Spin class but I can't stop thinking about this awful news.  I am very healthy and never expected this to happen. Does anyone have some words of wisdom for me?   I am in Atlanta, GA and there is a Cancer Treatment Center of America south of Atlanta.  Should I leave Piedmont Hospital and go there?  I welcome all recommendations.  Thanks so much.

Luah

Milo: My heart goes out to you, what devastating news. I can't advise you on cancer center, just want to let you know I'm thinking of you. I have read that there are multiple options for treating mets to bones, and they are effective for many women. So please don't give up hope or let your onc put an expiry date on you! You may want to speak with another doctor/cancer center if only to get another perspective.   

Milo

Thanks Luah.  I appreciate your words.  I have been researching other oncologists online tonight.  It's hard to find a replacement for my current oncologist in Atlanta on top of dealing with cancer again.  I am thankful to be able to read about others who are in my same situation and have been able to have great lives.  Thanks again for your thoughts.