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Mom has stage 4 mbc. looking for hope.

Hi,I'm new here. My mom has MBC. Its in her liver and adrenal glands and lymph's in her tummy. She was first diagnosed in 2013 at stage 1. She is Her2+ and er/pr-. She did the TCH treatment plan. Had her year of herceptin. Double mastectomy, reconstruction with the expanders and implant method. We thought she was in the clear and then it came back Sept 2016. Her tumor markers rose sharply and she had pain in her right upper belly, which we now know was the cancer in liver. So far she's had 10 chemo treatments, but her body is not tolerating full doses. Her last petscan was very promising. Seems "most" of the cancer had gone, and 2 of the 3 tumor marker numbers were back to normal range...so we continue on this treatment. Her body is so so fatigued. I came her looking to learn more and looking for hope. I have been with her to every appointment and every treatment and promised to be take every step with her. I'm not going to lie, its the hardest thing I've ever done in my life. Im feeling broken, but wont let her see that part of me. I'm 51 years old, mom is 70. she is my best friend. I guess I just needed an outlet...thanks for listening.

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Dear Seeshell,

Hang in there. You're a wonderful daughter being present to your mother at this trying time. It sounds like she's getting good treatment though chemo is draining.

Try to help her to get nutritious food into her body as she fights this metastisis. If she's unable to eat solids, try juicing carrots for her and also giving her fresh soups. I read that carrot juice has a special ingredient in it called abscisis which fights cancer. Add a good multivitamin and other supplements that will help her keep her strength up.

I went to my Health Food Store and bought a whole food multivitamin that has no artificial colors or additives. I also bought a B-Complex Vitamin, extra vitamin C etc. I had been feeling extremely depleted taking all the anti-cancer drugs, but with the supplements, I'm feeling better, and eating better.

You can ask her Oncologist if these vitamins would be acceptable for her to take. My Oncologist has okayed everything I'm taking and my monthly bloodwork has been pretty good. My tumor markers go up and down however.

I'll keep both of you in my prayers. Have faith that your Mom will improve. This is a difficult road to travel, but with God all things are possible.

Please keep us posted. And for yourself, make sure you get enough REST to be able to help your Mom!

Best regards, Kats3

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Thank you..this is good information. I'll try the carrot juice for sure. Her oncologist has her on a vitamin regiment. She lost most of her taste sensation with the first go round with chemo. She cant stand the texture of meats especially. On really bad days, we are lucky to get a protein shake or yogurt in her. She seems to taste salt and sweet, just no distinct flavors. 4 years without tasting chocolate? How does one do that??. She also is one of the few that has permanent hair loss from the taxatere. She has a good attitude and faith and believes she's going to beat this. Thank you for your replies. I am trying to stay strong and healthy, but being in my 50's I am going through my own madness! Going to Dr. to help with insomnia and some depression issues that have arose. I never let her see it though. I do my best to keep spirits up. She doesn't need one more thing to worry about. Just actually saying it out loud helps...thank you so much for response, and prayer. Wishing you all the best through your own journey...it is such a roller coaster ride. I admire anyone who can go through all this and still be so positive and strong. thank you again. :)

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i do carrots jiuce. five pounds each week. or buy bolthouse farms, it is the purest

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Seeshell, I can't imagine what you're going through. My heart is heavy for both you and your mother. When my mother was being treated for kidney cancer (admittedly, very different from MBC), it made me feel pretty helpless myself to see her look so frail and scared. But it sounds like you are an amazing daughter and caregiver, and I want you to know that you are not alone; we're always here to listen. <3 You'll also find a lot of information about metastatic disease here, and I also have some resources for caregivers if you're interested. All the best to you.

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Thank you....This is the hardest thing I've ever had to go through..but not harder than what she's going through. I wont complain. I appreciate your reply, just knowing that someone is listening and knows....helps greatly.

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Seashell in sorry to hear you are traveling such a rough road. I will pray for you and your mom that God will give you the strength to keep fighting and he will guide you every step. You will never be alone. God bless you both. Sending hugs your way. Xoxo

Sharon

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Thank you so much..you have no idea how much it means.

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God bless you for being a support for you mother. I don't know what I would do without mine. I have had many ups and downs with my cancer. I was cancer free for 7 years and mine came back exactly 7 years later January 2016. Unlike your mother I am triple C negative. I have no genetic connection. I am estrogen and progesterone negative. The cancer has mest to my brain and bones. I am cancer free after radiation to my brain. I will be praying for you that God's continues to strengthen you in supporting your mother.

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Soooo good to hear you are cancer free! What a battle you have been in!! Thank you so much for replying and for the support and prayers...it really does mean a lot to me. I want to be stronger...and I want her to thrive. I'm such a mamas' girl. Hugs and prayers for you too.

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I echo all the words of compassion others have sent your way. What you are doing is wonderful, loving and beyond difficult. But, as you point out, you're an adult woman with your own life and issues. Please, please, think of ways to balance your caretaking duties so that you can continue on without sacrificing your own health and well being. Join a group, perhaps at the medical center where your mother is treated,or seek out a social worker or therapist if you are struggling. Remember to do those things that sustain you, whether it's a hobby, exercise or time with your own family. With luck, your mom will survive and continue in treatment for years, so this may be a long haul.

Consider calling Share's Helpline. There are trained peers who can discuss with you the role of caregiving . They will also have strategies and tips----and they will take the time to listen and respond. You don't have to do this alone. Reach out if the burden is too heavy.

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Thank you so much. I will give it my all. I appreciate you reaching out. it means a lot.

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Hello! I am also on here as a daughter who's mom has MBC. My mom's original cancer was in 2003 with a couple early local reoccurrences in 2009 and 2014. She is her+ and ER/pr -. My mom's tumor markers began to rise in September 2016 and scans plus biopsy found mets to the liver. She was taking herceptin at the time, so they now have her on Kadcyla (herceptin plus a chemo agent). Wondering what your mom is on? My mom has also been complaining of fatigue that seems to be worsening with the length of treatment. She also has problems with constipation as a result.

For the fatigue, I found some wacky nutrition advice to try flax oil with cottage cheese. It can't hurt so she's going to try it. Making sure a diet is well balanced can help but I also sometimes worry about depression and anxiety having a role in her fatigue. I feel stress with all she has going on, I can't imaging how it is for her. She knows I have a lot going on in life in addition and sometimes I feel like she keeps it in to protect me. Maybe having someone else to talk with would help.

You are not alone and neither is your mom. This site is a good resource for support and ideas. Take care!!

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Hello MissySer! Thank you for connecting with me. I hope you are doing well. It really is a tough journey we are all on here. I hope your mom is hanging in there. I just got back from the cancer center. Today we did labs and hydration treatment with IV anti nausea meds. She gets those pretty frequently. Does your mom get those? With our first go around with chemo, The oncologist never suggested we do that, but he left a year ago and our new oncologist pretty much insists on it. We spend 3 days a week at the center most weeks. Mom is on paclitaxel, herceptin and perjeta. It seems to be working according to her last petscans in February. I hope it continues to do its job.

I also think my mom holds things in from me, because she doesnt want to add to my plate, or just doesnt think I'll understand. I know she acts stronger for me than she feels at times. I guess I do that too. We are too close not to read each other pretty well...so I'm sure I'm not getting away with much...she still gives me that look only a mother can haha. The first time around with chemo and the year of herceptin...they are like a blurr...but I really tried to make it as enjoyable as I could for her. I made handmade cards for every chemo day, and brought her a little gift for each one to celebrate her one step closer to beating cancer. We had chemo parties...I brought cupcakes and we wore silly headbands and matching hats or wigs...I so believed it would be one and done....I'm sure most of do. The reoccurrence and diagnoses was a big blow. I'm guessing you know more about that than I do. hugs. My mom is not one to reach out for help, or therapy...very private and spends her time with dad and I mostly. She will talk to the other women who sit next to her at chemo and share her 'cancer story', but I dont see her getting on here for support. She is just not that way. I wish she would. I've mentioned joining our local support group but she isnt interested. She doesnt seem to care to research treatments, therapies, meds, nutrition. She always tells me, She's in God's hands and its going to work out the way its meant to. She has peace that I havent found yet LOL...I will. Thank you so much again for your kind and understanding reply. I do have days where it feels like I'm all alone in this. I hate that there is so much of this going on the world....thanks again. hugs and prayer for you and your mom.

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if she is a believer, perhaps she can talk to her priest, or pastor. also support groups are badly named....not enticing. but you can model the behavior you wish to see. tell her perhaps that you are angry with god...or whatever. i tell people the truth a lot....what could happen, i have a killer disease.

i am thrilled to hear you are card making....being creative is very helpful. i do all kinds of projects. we have art theaphy in our hospital.

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What a wonderful daughter you are. I am Stage 4 as well. It came back after 15 yrs. Prayers for your mother and all the best.

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ugh!! after 15 years??!! NO fair!! I'm really sorry to hear that, but hope you are staying strong! They say take it one step at a time....sometimes all of it coming at you at once is just overwhelming....thank you for replying and giving me strength when you are fighting for your own...I appreciate it so much...will add you to my prayers as well. <3

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I know....thank you. I appreciate it.

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God Bless you. Being the caretaker is just as hard sometimes as being the cancer patient. I had Stage 2 breast cancer in 2005. I was then diagnosed again in 2016 with Stage 4 metasticized breast cancer in both lungs. I went through 20 chemo treatments. I thought it was going to kill me. But ... I've been off chemo since November and I'm finally feeling more like myself. I'm still very tired but I can deal with that. I had to go through the bad to get to this good. Take care of yourself. You are very important and how you feel is important too. We are here for you and your mother. Hugs!

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So glad you are getting a break from the chemo! 20 treatments is a lot! mom is going on her 11th treatment since October 2016....and we're are praying for that break to come. She is not tolerating the doses this time around at all.....they keep experiment with the amount and she is at a lower dose..but the scans seems to be still looking better. Thank you for telling me your story...it brings me hope that we can hang in there. I hope and pray that you get stronger by the minute and grab a hold of all the good parts in a day! Thanks again for sharing hope. Hugs!

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Thank you for your sweet words. They made me smile. Praying for you and your mother.

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We're all here to support you and your mother. You're a wonderful daughter. Your support is helping her in so many ways. God bless.

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Thank you...some days, I know she is just being strong for me....she amazes me everyday just by getting through. When I think back through the last 4 years...its been one thing after the other to endure....and yet, she does. I come home and crumble...but get back up and go again. I guess the statement of taking it day by day rings true...one piece at a time. Thank you for your reply and support. God bless you also.

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My heart is with you & your mother. I am going through this with my 39 year old daughter. She has stage 4 inflammatory mbc, HER2+,ER-. She also has been treated with Herceptin but also was given Perjeta, another targeted therapy,along with Taxotere. She got a very good response from that combination. She was taken off Taxotere after 6 months because of multiple hospitalizations for infections due to neutropenia. She was on targeted meds alone for 18 months & started Navalbine the end of February with none of the side effects from before. It sounds like your mother has had a good response too but the chemo has to be adjusted do she can tolerate it. I agree with the thoughts expressed above. We made nutritious smoothies with fruits which I added Greek yogurt to so she'd be getting protein too. She also couldn't stand the texture of meat. I'm glad that you shared & hope it's okay that I responded since I'm not a patient but walking this path with my daughter every step of the way.

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Thank you so much for responding...Its really good information..and I so hope your daughter continues to do well. I'm guessing its got to be just as hard to watch your daughter go through this. I promised mom in the beginning to be there at every step and I wont stop. I know you feel every pain that she does and would give anything to make it better. No one can love you like your mom! hang in there mom....thank you so much for the support. I'll try some smoothies out on her again! we did some the first go around...but I havent recently. Sending lots of hugs. I cant wait till mom can have a break from chemo...I know she will have to be on the targeted therapy for the rest of her life....but her body is demanding a break soon...She has been hospitalized twice so far from infection....will pray for you and your daughter.

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Hello! What a wonderful daughter you are! I know your mother truly appreciates all your love and concern for her! I, too, am HER2+ and er/pr-. I was diagnosed from the get-go with Stage 4 with mets to the liver. And I, too, share a very close relationship with my daughter who had just turned 19 a few weeks before my diagnosis. At the time of my diagnosis, I was very scared and thought my prognosis was grim. That was two years ago and I am feeling good and am very hopeful that I will be here to see my daughter graduate from college next year! My treatment started with taxotere, herceptin and perjeta. The taxotere was very difficult. But after 6 months that was stopped and now I receive herceptin and perjeta every three weeks. I tolerate these drugs very well and live a good life. I have been able to enjoy many special times with my family these past two years and am even able to forget, at times, that I have stage 4 cancer! Hopefully, your mother will have a similar experience. Continue to support her and encourage her to use this website too! Blessings, Caroline

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ahhhh! what a ray of hope you are!!! thank you so much!! this brought tears to my eyes...I hope mom gets to feel those words and forget at times she has this!! I'm so happy for you and hope life continues to bless you more than you can imagine!! Mom and me are a team..I'm not going anywhere. I'm glad you and your team are doing well...sending hugs and thank you again for the reply.

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Hello There I know it's rough. But you hang in there baby. You are a very loving, caring daughter to be by your mother side every step of the way. I know my daughter was there for me every step of the way. I don't know where I would be with-out her and the rest of my family and friend and this support group. Things are going to be o.kay with you and your family. God is in control of all things. Were going to will this battle together. Take Care and keep us up dated on your mom progress and remember Only The Strong Will Survive. Thanks Be to God.

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yes! thank you...You sound like one of the strong ones!! I really appreciate the support and kind words. WE can do this.....I'll keep telling myself over and over....I'm lucky to have stumbled across this group. thanks again. Will come back along the way for updates...thanks again. We are off to hydration soon..must get moving...thanks again!!! God bless you.

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Seeshell God bless you. Your mom is truly blessed to have you in her corner . There is a saying "a Mother can take care of 10 kids, and sometimes not one child of the 10 can take care of one mom/mother.I pray that God will strengthen you and your mom daily.Don't forget to give yourself some TLC and I hope Share can find you a caregivers support group to attend.

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Sweetheart, this is tough!!!! no lie, it is very emotionally difficult. My cancer care practice offers free theraphy and i go every week. find a priest, or theraphy person. say the things out loud you dare not tell anyone. it helps. and never believe this is easy. if anyone tells you anything esle, walk away. i am finding exercise is helping with the fatigue. Make sure you and your mom get a little in everyday. schedule her naps. mine came every day at 3, and to be sure, it is not really a nap. Watch comedies on tv , laugh and enjoy some stories. it will give you a break. i am in my 22 month of treatment and getting better. find some joy every day, eat well and laugh. be kind to yourself.

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Stay strong when I first was diagnosed I has lesions in my bones. In my scalp my family pulled thei hair and so did i I'm ready for another PET scan on Friday and I'm not going to lie I'm scared very scared although the prior ones have been good scans I was diagnosed in October 2013 and my progress is good I wiil send prayers your way.

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How great that your mother has you as her support system! I see there are 31 other posts so I won't write alot. Know you are in our prayers and sad to say many of us are in this same situation. You are certainly a blessing to your mother.

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hi, just wanted to update you on mom. I don't post much on this site, but trust me, I check in and read your posts quite frequently. It does bring me hope. I have some good news to report...Mom's last petscan came back with "no active cancer". She will now stop taking the paclitaxel and continue every 3 weeks with Herceptin. She has been taking perjetta along with Herceptin for the past year, but onco says she wants to reserve that for future if needed. We were really hoping and praying for this result and so hoping it will continue for us. Mom has suffered from Cdiff? (spelling?) and is on a strong antibiotic at this time....I'm hoping she will get past this and just get stronger being off the chemo. While reading the petscan report. It noted that calcified artery disease was seen. She suffers from fibromyalgia and high blood pressure also. I just hope she can feel better soon. Thank you all for information you share. Wishing and praying for you all to feel good!

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Wonderful news! I have read all your posts re: your mom and I want to tell you that you are a wonderful daughter. I am very encouraged by her progress. MBC is a tough road and we all need family/friend support. I am newly diagnosed Stage 4 and have been on Ibrance and Letrozole 3 months. There are minimal side effects and I feel good. Prayers for your mom that she feels better soon,

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Bless you both.

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I'm back! I needed to turn to you all again. Life is still a roller coaster, and I guess its going to continue that way. after being stable and No Cancer activity at all for 7 months, mom is once again diagnosed with a cancer in her liver. I'm so mad...she was just getting stronger again. she has been on the Herceptin every 3 weeks this whole time. I guess it means it has stopped working? The 3rd time hearing "your cancer is active"...is just bad. it just happened yesterday, so we are still pretty raw and dealing with it. Next line of defense is starting the Kadcyla drug. Anyone take this? How is it working and for how long? We will be going to Stanford to see if the spot on liver can be surgically removed, or possible burned out? Trying to stay hopeful, since there is only a spot this time....the last time her whole liver was full and no mention of surgery as an option. We do petscans every 4 months. Her last one was beautiful...amazing how fast this can change. Her tumor markers never rose this time, there were no indications of it coming back like last time. I just wanted to up date again. and see if any of you were going through the same things? Hoping for a great response with the kadcyla. will start that on Monday. My heart is just broken ..again. looking into my mothers eyes as she tries to take it all in is the worse thing I've ever been through. it hurts. I so hate this disease. I know you do too. thank you for being an outlet to me...even if no one reads this at all..I got to say it out loud. God carry us through this life please....its so hard.

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