ER-, PR-, Her2+ Roll call
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KillTheCancer, please see the attached link. Hope that helps.
http://www.breastcancer.org/symptoms/testing/types/blood_marker
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Ooops...my apologies MinusTwo. I must have been searching while you were typing. I missed your post.
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Thanks for the posts ladies, I understand now why it wasn't mentioned. The other thing that was mentioned I forgot to add (for my surgery) was that they found DCIS (high grade, comedo). She removed it and my Oncologist told me that it's not unusual to find that along with the IDC.
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SlowDeep - your post was much more informative than mine. Thanks for sending the link. I was glad to have the detailed info.
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You're always so gracious MinusTwo. Thank you!
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Hi. Guess this is the club to join, seeing as I fall into this category as well. I was diagnosed 4/14/15 and will find out my genetic test results in about 3-4 weeks. I start chemo in 2 days. I don't know what the combination of drugs is called, but in addition to Herceptin, I'm also going to have Paraplatin, Taxotere, and Perjeta, with a shot of Neulasta the next day (I'm assuming that's standard?). I promised myself I wouldn't read up too much but I did want to know about side effects Boy, is it disheartening.
But the strong women I see on these forums is wonderful and I feel like I'm in good company.
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Hi SimmahDownNow,
Sorry you had to join our club, but since you're here, welcome. As far as side effects, everyone has different ones and at different times during their treatments. My treatment was TCH which is the same as yours minus the Perjeta. I think there's a thread about that cocktail also. My side effects were pretty bad initially (1 and 2nd treatments) then it got a bit better toward the end. At first I had stomach issues - constipation from the chemo and then diarrhea from the Neulasta. I had a hard time with the Neulasta (severe bone pain), so they instead used Neupogen which was much easier for me (we did the multiple shots at home). I had leg swelling and eventually started getting neuropathy. Enlarged belly and hair fell out at 3 weeks and tired all the time. I never had vomiting due to the pre-meds they gave me prior to each treatment.
Christine
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Thanks, "Kill the Cancer" (Christine).
I appreciate your input tremendously. It should be an interesting exoerience to say the least. How are you doing now?
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hi simmah!
Sorry you are joining us but WELCOME! I had a similar course that you did- I presume the platinum chemo takes the place of my adriamycin. Sounds right. I had a tough time with the adriamycin but found the taxol better. Maybe because the AC was dose dense and my taxol was not. It sucks but is completely manageable. I traveled, took care of kids, managed to function. Try to rest as much as you can and accept help.
The neulasta gave me bone pain and aches which was kept in check with Claritin (really!) and alleve.
The perjeta gives you diarrhea at first which is easily treated with Imodium. Just be near bathrooms!
If I did it, you can, too. I was mighty scared and sad through my chemo months.
I am finishing up my year of herceptin and that was a breeze after chemo!
Hang in there and check in!
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I am looking for some hope for my mom. She starts chemo next week, and I imagine Herceptin too. She was diagnosed with Stage IV with mets to her liver and possibly bones. She is ER -, PR -, HER2 +.
Is there anyone out there who was/is Stage IV, with mets to their liver and bone (or mets elsewhere) and also ER -, PR-, HER2+ ??? How are you doing? Did you notice your tumours shrinking with chemo and Trastuzumab?
Is there hope?
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sheismyworld:
I was diagnosed Stage IV in 2014 (ER-PR- HER2+) and about 1 year later I am doing great. I had many, many mets to liver and many, many mets to bones. Am currently NED (no evidence of disease) and will be on Herceptin and Perjeta for life. There's definitely reason for hope. Best to you and your mom. Ann
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sheismyworld: So sorry to hear about your Mom. The link below is to a good thread for asking about stage 4 issues and they can point you to others.
https://community.breastcancer.org/forum/8/topic/7...
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Thank you MinusTwo! I am finding more information. Today I learned that she will start Perjeta, Herceptin and Taxotere sometime next week. I have also found a forum on this. Thanks
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sheismyworld - most of us found it helpful to go through the journey w/others in the same place in chemo. Below is the chemo thread for July2015. I learned a great deal by also reading the thread prior to the month I started chemo. Being Stage 4, the chemo may be tailored differently for your mom, but the side effects will no doubt be similar.
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shesmyworldI'm sorry about your mommys. As you see here are many of us going through this and here you will find loving caring ladies that will walk with you through this your not alone. Your mommy is lucky to have a wonderful daughter to fight together. I know you will find all the answer to all your questions. I did. Keep us post ....
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Thank you very much! I am now following the chemo July 2015 page, trying to scope out those who are also stage 4 to get an idea on what to expect for my mom. It looks like she will be officially starting at the end of the month. Wish it were sooner but as it stands, that is all that is available. Hopefully a couple more weeks is okay
. She is not in any pain now, and does not even feel like she has cancer. That must mean something... although knowing how aggressive it is scares us a lot. Hydranne, thank you for sharing where you are on your journey with me. It is very reassuring and I am very happy to know that you are beginning to feel better, and that you are keeping positive.
patriciahurtado, your support is comforting, thank you soo much. I am happy seeing so many positive, optimistic, strong fighters. It gives me hope.
You are all so brave and strong... brings tears to my eyes.
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Hi,
My mom is ER/PR -, HER2 (some positive and some negative), hers situation is complicated. She is using Herceptin. Yesterday is her first day to accept treatment. Hope she could do her best. She is in China. I am in USA. I want to be with her so much!
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Hi lixlu0227 and thank you for sharing your story. We are sorry you cannot be with your mom, and hope she is doing well! Keep us posted on how she is doing.
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Thank you sooo much for sharing Teakie88. I don't know how I missed your post initially but I am glad I saw it today because I really needed it. So happy to hear that you are doing well 1 year out.
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lixlu - hope your Mother is doing OK. I know you worry so far away.
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I guess I am a new member to ER-,PR-,Her2+ . Path report came back July27.In addition the Ki-67 was 3-5%. My Oncologist says this is unusual with the ER-,PR- but means that Chemo won't work as well and Herceptin doesn't work as well with out it. All kinds of test are being done on the biopsy specimens but they are not back yet. Anybody out there with the same problem??
Another concern is the delay in surgery. Still isn't scheduled.
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Hello,
My wife is 58 and in May 2013 was diagnosed with ER-, PR-, HER2+ Stage IIIa breast cancer to her left breast and 8 positive lymph nodes. Following the lumpectomy and lymphectomy, she had the usual protocol of AC and Taxol/Herceptin, then 35 proton treatments. 7 months after the last Herceptin treatment, they found a 4 cm tumor in her left frontal lobe. The tumor was removed with clear margins and she was given 3 stereotactic radio surgery treatments. She started on Tykerb/Xeloda and it almost killed her. She now has 6 tumors in her brain and 2 on her spine. She has received WBRT and is now enrolled in the Northwestern Memorial Intrathecal Herceptin clinical trial. We are praying that this stops it. They will also be giving systemic Herceptin again.
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MedStar - Sorry to hear about your wife. We'll keep her in our thoughts. You may want to check some of the Stage IV threads.
MamaBexar - the tumor boards at my hospital determined since I'm ER/PR - and HER2 +, my treatment should start with neo-adjuvant chemo - then surgery. I know it's hard to wait, but try to be patient for all the testing to be completed.
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Hi MedStar,
We so sorry to hear all your wife has been through. Here's a link to the stage IV Support Forum: Family and Caregivers with Stage IV
Keep us updated, we're keeping her in our thoughts
Hugs,
From the Moderators
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Thanks for the encouragement Minus Two. I know I am impatient. That pathology report was scary. The Nottingham score was7/9.Histologic grade 2/3. I am hoping that the breast surgeon's office will call today. I spent all day Friday trying to make an appointment. Very difficult for a impatient patient.( what a great online name. wish I had thought of it sooner)
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Yes MamaB. great name. Are you in Bexar County, TX? There's a pretty active group of BCO women out in the Hill Country.
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San Antonio, Bexar County, Tx. I will see surgeon Sept.1 for the 2nd time. to plan surgery. Oncology has ordered mammoprint but did not say how long that would take. I am having MRI on Wed.
I have seen radiology/ oncology, cancer center oncology, plastic surgeon and nurse navigator as well as having my case presented at a cancer conference last Friday. And I still don't have a date set for surgery. The first abnormal mammogram was done on June 3. Has any one else had a wait this long before surgery ?
Thanks for listening.
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Hello everyone I am in the club as well. Waiting to have the PET today to see if is metastasized or not but the idea, if everything OK today, is to start neo-adj chemo next week. Hope, hugs and best wishes for everyone.
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Hi MamaB, originally I was planned for lumpectomy on 9/10. After meeting with radio/onco yesterday they want me to go on Perjeta and one way of getting it is as neo-adjuvant. Also I will have the genetic testing done next week and it will take a few weeks for the results to come back. They all said is ok to post-pone surgery for a while because once you have all the players in place then you can make the best decision going forward.
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Hi Flower, Looks like we are in this together. Maybe we can hold each other's hand on the way. I met with the surgeon a couple of days ago. She was very insistent that a lumpectomy would be the best considering I have several underlying medical problems. She will also check a sentinel node. A few days later she will implant a device that that will deliver intense radiation for 5 days. Herceptin starts 3 weeks after that.
Keep me posted as your treatment plan unfolds.
PS I still don't have a surgery date. " Someone will call in a few Days to schedule you" . I am beginning to believe I may die of old age before we get around to treatment.
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