HER2+

Hello! My name is Caroline and I was diagnosed in March 2015 at age 57 with stage 4 breast cancer, HER2+ with mets to the liver. I had no previous or family history of cancer. I am currently doing well and now receive Herceptin and Perjeta every 3 weeks. Initially, I was given these two drugs with Abraxane but stopped taking Abraxane after 6 months. I would very much like to hear from others who are also on this metastatic breast cancer journey regarding treatments they have tried and how they live with their diagnosis.

23 Replies

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  • Hi Caroline! Welcome to the group. Glad to hear you are doing well.

  • Hi, I am also Stage IV breast cancer HER2+ and was on Herceptin and Tykerb. After four months my cancer hadn't spread and after two years I'm grateful for the treatment received. Though I have fatigue and skin scaling and cracking, I am not afraid for my future as much. My cancer had eaten through two vertebraes that have since been removed and replaced with titanium cages. I have a rod along my spine holding it in place. And I had two pins surgically inserted in my right hip because the cancer left a hole that weakened it. I had to wear a brace around my torso for six months and walked with a cane until my hip operation. I'm thankful to be alive!

  • Hi! Thanks for responding. It sounds like you have had quite a journey! I am glad that you are handling it with determination and a thankful heart! I do hope that your quality of life continues to improve and that your cancer remains stable. I would very much like to continue to hear from you. Take care, Caroline

  • Hi Caroline, I too was diagnosed with Stage IV Metastatic Breast Cancer in September 2015 that Mets to my lungs. Also HER2+. Initially I was on Taxol and Herceptin thru my port and very aggressively. I came thru it very well and did lose all my hair. PET Scan showed tumors had shrunk so he put me on Herceptin every 3 weeks thru port and I take Anastrozole every night in pill form. My hair has grown back and I feel good. My only complaint is fatigue and lots of that. My Dr is keeping me on this regimen as long as my body will tolerate it. I am very sad not knowing what is to come but try to take every moment I am given and try to appreciate everything while I can. My mother always told me "there's no way around adversity, you have to go through it." So I plan ways to make everything special for me and my friends and family. I want to leave a legacy of great memories behind and I am working to that end. I was 66 when diagnosed and 67 now and planning my 50th class reunion this year and my son's wedding in November and praying I live long enough to plan my 50th wedding anniversary in 2018! I take each day slowly but it's easier to appreciate each moment that way. I will keep you in my prayers and look forward to hearing good results from you! Michele

  • Hi Michele! Thanks for responding. When I was first diagnosed, I felt so alone. It is so very helpful to hear from others with this same diagnosis. I too have a goal to reach in 2018....my youngest will graduate from college that year! It's not quite as big as a 50th wedding anniversary, but I so want to be here (and feeling good) for her graduation! I hope your fatigue will lesson. I do walk every day with my dogs. I'm not sure if moderate exercise may help with your fatigue, but it is a great psychological booster for the day! Take care, Caroline

  • Hi Caroline

    I just started the tykerb and xeloda so far I am tolerating it but won't know if it's working for 3 months after pet scan. Dr said can't go according to Cea levels because some times they go up before they come down on this combination. There are days I do nothing but cry because we don't know what to expect and where it's going next. I was 55 when diagnosed and now 57 having been having ups and downs for three years. I still work a full time job to keep busy and spend lots of time with my grand children they can always make me laugh. I was thinking of going to yoga for relaxation but now I am to tried being on these pills. Everyday I get up I thank god I am a live and try to surround my self with positive people. I also find going to the beach is very relaxing

  • Hi ! Thanks for replying to my post and sharing your situation with me. Did you initially take Herceptin and Perjeta prior to taking Tykerb and Xeloda? I am glad that we have more than one course of medication to take to try to stop/slow down our cancer. I am sorry that the pills are making you tired, but perhaps your energy level will improve once your body adjusts to the new medication. I, too, cried A LOT for about a year after my diagnosis! It has been helpful to me to reach out to people like you who understand and share my fears, concerns, and yes, even anger at this diagnosis! I try now to focus on living and not the fear of dying (easier said than done) by reading my Bible, thanking and praising God for my many blessings, and making the most of each day by surrounding myself with people I love. I also try not to wear my feelings on my face, but to present a positive attitude to all I come in contact with. You could say I live a bit in denial, but it works for me so far. Please let me know when you find out the new medication is working! (I know it will:) Blessings to you, Caroline

  • Yes I did herceptin and perjeta first worked for about Four months

  • Hi Caroline!

    I was diagnosed last summer at age 45 with MBC with bone mets. I took Perjetta and Herceptin and Zometa for bone mets. The Perjetta/Herceptin combo never bothered me much other than maybe taking a nap the day of.

    Biomarker numbers went down in November. So no more Perjetta and I just took a job in an after school program in a bowling alley with 100 kids a day. Can't wait to start on Thursday! Keeping busy has helped out a lot. I'm used to working full time so when I was laid off due to my diagnosis it was quite hard for me to be home with nothing to think about but cancer.

    I also think physical exercise helps. I recently bought a Fitbit to track myself. I have a lot of places I like to walk in nice weather. Unfortunately it's single digits here today!

    God bless and stay healthy!

    -Heather

  • Hi Heather! Thanks for responding about your situation. What are biomarkers? And why did their being down make you stop perjeta? Did you ever take taxatere? I initially took Taxatere/Abraxane combined with my Herceptin and Perjeta. (I had an allergic reaction to Taxotere so they switched it to Abrazane.) Maybe our course is different because my mets are in my liver. I did attend a MBC conference at Dana Farber this fall and was encouraged that there are other treatments for HER2+ out there when one stops working. I do hope and pray that your new medications will be successful in stopping/slowing the cancer! I know you will be fabulous at your new job! Your excitement and enthusiasm will make all who come to bowl have a fun time! Please let me posted on how your treatment is going! Blessings to you! Caroline

  • Hi again!

    Biomarker numbers are the numbers they give u in the beginning. Mine was 3900. I had a 2 centimeter tumor that decided to spread to my lymph nodes and about 10ish bone mets. After 5 Perjetta my biomarker went to 95. Near normal. So I had 1 more. Now I'm just on Herceptin Zometa for a year and Tamoxifen. Tamoxifen pills are for the ER+. I'll probably take those for 10 years. So I'm doing well for now but as we all know, u never know what 6 months will bring...

    Enjoying life for now!

    -Heather

  • Thanks Heather for this info. I have never been told what my biomarkers were/are (at least I don't remember being told), so I will ask my oncologist about that when I see her this week! Thanks and have a wonderful day! Caroline

  • I'm glad that biomarkers have worked for you. They give your oncologist another way of monitoring your cancer. Mine have never worked. I've had spread to the lung and brain and my markers were never out of normal range. They seem to work for some patients but not for others. I'm also HER2+.

  • Carolyn, You're having a great response to HER2+ treatment. I also have HER2+ metastatic breast cancer, and nobody in my family has ever had breast cancer. When I was first diagnosed, many people assumed the cancer ran in my family. Hereditary breast cancer (BRCA gene mutations 1 and/or 2) account for only about 6%-10% of all breast cancer diagnoses. So, it's not really common. My cancer has been stable, after spreading to my lung and brain. HER2+ has about a 30% greater chance of spreading to the brain than other subtypes of metastatic breast cancer. ER+ has a greater probability of going to the bones, but we can all get the cancer in either of these two spots. Joan

  • Hi Joan, Thanks for responding! I'm glad to be a part of such a supportive group! I have heard that HER2+ has a greater chance of spreading to the brain than other subtypes which, of course, has me concerned. Did you have a difficult time getting your insurance to pay for an MRI of your brain? I had one upon initial diagnosis, but now only receive CT scans every 3-4 months, which I am told does not show the brain. How did you discover that your cancer had spread to your brain? I worry about every headache and head pain that I have. So glad to hear that you're now having good reports! That is so encouraging! Caroline

  • Hi Caroline, have you ever had a PET scan? Usually that is how My dr test to see if cancer spread or is shrinking and is done from head to thigh any active cancer will light up on test.

  • Hi Caroline, After the cancer spread to my lung, I asked my oncologist whether I could have an annual brain MRI because of the HER2+ diagnosis shown by a lung biopsy (to confirm breast cancer, rather than lung cancer). She agreed. Insurance was never a problem, and I'm not sure why, except that it most likely has to do with insurance billing codes. I'm not sure which codes were used. According to guidelines, I believe that symptoms have to be present to justify a brain MRI (but don't quote me on that), but I didn't have any and, again, I guess the codes used allowed the insurance company to pay for the MRIs. The first MRI was normal, but the second one 16 months later showed a 2.6 cm tumor, but I didn't have any symptoms yet. Based on my knowledge of other women with brain mets, I thought it would be treated with a single dose of stereotactic radiosurgery (SRS radiation) and was very upset when they recommended a craniotomy (surgery) to remove the tumor because it was deep, plus 5 doses of stereotactic radiotherapy (SRT) (I guess SRS is like the tumor is being "removed" in one shot). They felt I would get more "control" of the tumor (as they put it). SRS and SRT are targeted radiation, not whole brain radiation (WBR), which is often used if the brain has a lot of little tumors scattered about.

  • HI Caroline! My name is Cindy. I was diagnosed in December 2011 with stage IV breast cancer, HER2+ with mets in my hip bone and back. I had a Great grandmother who had breast cancer. I was 55 when I was diagnosed. I am now 60. I am doing very well and get Herceptin every three weeks and have for 5 years. I also have started to get Xgeva injection every 6 weeks. I had 2 years of Zometa which was very rough. I have taken Arimidex, Tamoxofen and am currently on Aromasin daily. They found my cancer on my left hip bone. I had a partial hip replacement. I just had back surgery in July and had 2 rods, 4 plates and 8 screws put in. It is not easy living with this nasty stuff. I feel like I am always on an emotional roller coaster! I could not have made it without my faith in God!

  • Hi Cindy, Thanks for responding. It is such an encouragement to hear from others who are fighting their diagnosis and succeeding! It sounds like you have had some difficult times, but I'm so glad you have persevered. I know that it is your faith that keeps you strong despite your circumstances and keeps you positive! Have a wonderful day! Caroline

  • Cabt, I couldn't have made it this far without my faith in God!

  • Ive also had herceptin and perjeta for 2 yrs now. Im done with these two, and i only have kadcyla. That's every 3 wks. Ive also had taxol for a year. And also zometa for the bones every 6 wks. The first time i had chemo in 2014, was the only time is was restless. I didnt even had nausea or vomitting. Up to this day, the only problem im having is my neuropathy but aside from that nothing more, except of course losing hair. And its not painful, just numbness, so i dont even take pain relievers. I had no surgery. My left arm is swollen for a year now. (Lymphedema) so far, im doing great.

  • Thanks for the telling me about your journey! It is so helpful to hear from others with this diagnosis. I am so glad to hear that you are doing well! I'm curious why you stopped taking Herceptin and Perjeta and switched to Kadcyla? Is that standard after two years? Caroline

  • I was diagnosed with stage IV bc in 08-2014. I am HER2+ with mets to my liver, lungs, and spine. I started with xeloda and herceptin. After 2 years I was taken off of xeloda and placed on perjeta. I took perjeta for 6 months. My last scan showed no measurable cancer. I am now just on herceptin. I have a lot of fatigue.

    I am 54 years old a mother of 2 and grandmother of 6. I am a retired elementary teacher. And have been married for 34 years. We have our crying days, but we try to make memories with our family.

    I thank God daily for carrying me through this.

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