ER-, PR-, Her2+ Roll call
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Well this is me, my journey is just beginning, I will keep u posted.
Strange before I was scared to have cancer. Now I pray they can do something, my bone scan looked scary. Will not know stage till the third ugh.0 -
You can do this volleymom. Once you see the Onc and have a chemo plan in place things will be a little calmer. It's a wild ride to say the least.
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Hi everyone -
January will be 2 1/2 years out for me...one year out of Herceptin. So far so good!
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Bone scan was ok just lots of arthritis, CT had a small spot on my liver, doc says wait three months check again after chemo, so staying stage 2b yeah.
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volleymom77 - YAY! I remember they were double checking my bone scan....what a nervous time, but then they told me I had a "bad back"...hah no kidding, I could have told them that
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I thought I was in good shape after my BMX, clean margins, 0/4 lymphnodes. Then every step of the way the plot has thickened. I'm Grade 3 tumor, High proliferation rate, Basal subtype. At first they thought I was ER+, but now Mammaprint & Genoptix Aqua say I am ER Neg. Actually Mammaprint says I am Triple Negative.
Now Genoptix Aqua tells me that I'm ER-, PR-, HER2 + (weakly) None of the previous path reports or Onctype or Mammaprint saiid I was HER2+.
My onc will call the head hematologist at Genoptix about my results. Their doctor apparently wants to discuss my reults with my onc because my results are "SO UNUSUAL" (so I've been told by Genoptix).
Currently I am halfway through adjuvant chemo--Taxotere/Cytoxan (4 cycles). My Genoptix Aqua report says that I have a "76% cumulative chance of recurrence at 8 years."
I'm so glad to read good news from people in this ER/PR-, HER2+ group.
Wondering if the HER2+ score will change my Tx plan at all. I have heard that if you're a Basal sub-type, that Herceptin won't work. Is there any kind of standard Tx for Er-/PR-/HER2+ who are also Basal subtype? Or am I some kind of really rare bird out here on a limb of my own?
Thanks, Hap
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Hi Orrville! I'm Medina!!
I am ER and PR negative, also Her2/neu, stage IIIa, nuclear grade 3. Diagnosed on 11/15/2011. Mass was 5cm so I had chemo with a near complete resolve, still opted for a bilateral mastectomy with an ancillary node disection. 25 rads and still finishing my Herceptin. I just called to see if a sitter was available at one of the support group meetings and the life care specialist said she will be there - but with 2 kids that just lost their mom. Stuff like that makes me just so sad.
Wanted to say hi - hope you are great!
Christy0 -
Hi Hap! I've never heard of basal sub type, mammaprint or genotype aqua. I need to google it. Thanks for sharing. I am at the end ish of my Herceptin. I was stage IIIa, 5cm mass, nuclear grade 3. I was dxd exactly one year to the day after you. My 43rd birthday. Anyway - I would love to talk to you if you are up for it. Christy 330-705-5891
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Well have my game plan first chemo is friday, ugh. My main tumour is 4x2x5cm, but they r still staging me llb. First chemo is taxol,carbolatin and herceptin. Plus cooling mitts and footies during to save nails and help with neuropathy. She said it takes about 4hrs,ugh. Any advice.
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volleymom,
Don't be surprised if you are there longer than 4 hrs the first time. They will run the taxotere and herceptin very slow the first time around to make sure you don't have any reactions. Eat something light before you go so you have something on your stomach. I always took snacks like animal crackers and hard candy. YOu may want to suck on ice while the Tax is dripping to help prevent mouth sores. Good luck.
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HAP:
I believe the recurrence risk score that GenOptix provided as a result of the IHC4 testing, is a recurrence risk score without receiving adjuvant cheomotherapy. The intention of the test is to give patients and their doctors a better means of assessing whether that patient needs to have chemotherapy.
So please think positive and try not to put all your doubts on that one number. I really think it was a number given to you, based on if you were to not have adjuvant chemotherapy. I would ask your Oncologist to confirm whether or not that number is without chemotherapy.
Please try to rest easy and remember that TNBC tumor cells are very sensitive to chemotherapy.
You can also look up at your unique values/path characteristics and see what course of treatments for chemotherapy are 1st line treatments in the National Comprehensive Cancer Network Manual for Physicians. It's 161 pages, and you can follow through the diagrams, based on your specifics (type of bc/tumor size/nodes/etc) and see what treatment would be recommended if your stats on the ER/PR/HER2 changed. The manual I have was updated March 2012.
http://www.nccn.org/patients/default.asp
Keep us posted with everything - will be thinking of you!
- Link to NCCN Guidelines, Breast Cancer Guidelines
- Have a question? Get answers from experts at: Ask An Expert: John Hokpins Breast Center: http://www.hopkinsbreastcenter.org/services/ask_expert/
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Christy and everyone:
When we post our phone numbers, we should do it in a PM, because I noticed the other day, that our posts go directly out to the internet. Not that you will start getting calls with heavy breathing or anything Christy.
It's the solicitors and robo calls that are the concern. Wishing everyone a great day!
- exchanging numbers
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VolleyMom:
Are you going to be getting the Neulasta shot the next day to help with stabilizing your blood counts? If so, can you get your treatment on a Thursday, so you can have your shot on Friday? Or are they doing it the same day?
Take a blanket to your chemo treatment, so you can be nice and cozy. Take a couple of magazines, and a treat bag of snacks. Cup of ice with any drink so you can suck on flavored ice chips. Go looking good, so you will feel good during the treatment. Have your home nice and ready for you to come to and rest. Have you favorite spot on the couch picked or something and stock up on some of your favorite things to eat. I had a special cute bag that I packed the night before with the magazines, a bag of M&Ms, a banana, a Diet Coke, the blanket ($9.99 for a Twin one at Target) and cell phone, with cell phone charger (just in case battery runs low), you might be texting or looking up shopping items, which can drain the battery. I was looking up the names of the bags that they were hanging on my IV. lol
Have plastic utensils at home in case the food picks up metalic taste from silverware. Have Pediolyte flavor ice pops on hand in case you have a hard time drinking plain water, or Ginger Ale, Gatorade, etc.
And remember to relax during your chemotherapy chapter. You want the medicine to do its job, so don't over-expend yourself at home. Also, my Oncologist was very firm on no blueberries, no juicing, etc during treatment. He didn't want any outside influences masking the cancer cells, as that could lessen the effectiveness of the treatment. So if you are on supplements or a high amount of anti-oxidants, ask your Oncologist about that.
Sending you the best vibes for a good 1st run. I also had the slow drip, and because it was so tolerable, I asked if they could do that each time, and they did. I was there a while, but believe it or not, it does go fast. There are other people in the room, and you might find the time soothing, with everyone taking care of you, and you might get to talk to other people, or hear something funny, or chat with the nurses, etc. It does go by fast, I was tired when I got home from all the anticipation and having the treatment, but it goes by fast.
I'll see if I can think of more things that seemed to help me.
Best wishes for a great week!
- chemo tips, chemo hints, chemo preparation
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Christy, Thanks, but honestly, I feel like I'm thinking/talking about this too much already. Decided to start painting again just to get my mind onto to something that gives me joy, instead of something makes me obsessive.
Debra, Thanks for the link to the manual for physicians. Also I looked at that "prediction" again. it makes no sense because the data is for women who are ER positive which I am not. Anyway, like I said, I'm going to focus my attention elsewhere for now. Just do my chemo, exercise, eat right, and try to get back to doing things I enjoy like painting & sketching. Too much research can be as bad as too little. Moderation in all things.
Thanks! Wishing everyone good news. Hap
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Hi All,
I was dx'ed 9/14/12, BMX 10/10/12 ER/PR-, HER2neu+++. Starting chemo on Thursday. My tumor was tiny and clear nodes, but I came to realize that this was nothing to mess with. I am starting with 3 months of AC every 3 weeks, then 3 months of TH every week, followed by weekly Herceptin for 9 months. I had the port placed today. I'm sore but not in too much pain. I am also doing acupuncture, strength training, and guided meditation to help with nausea and fatigue of chemo. There is also research from MD Anderson that shows regular acupuncture through chemo reduces the occurrence of neuropathy. I am giving it a chance.
Thanks for starting this group. After reading the posts, I feel then support from each of you and want to be part of your group, contributing my experience, strength, and hope as I can. I look forward to getting to know you better.
Wishing you health and peace.0 -
Reflexology helps a lot as well. I'm finishing up my herceptin next week. Good luck on your journey. Dee Dee
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Thought i would check in was hospitalized for two nights dehydrated and short of breath very light headed. Home now tired, blood counts low, told to rest and stay away from people ugh. Go back Monday to have a new blood draw. Very tried and lonely.
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volleymom, Are you getting nuelasta after chemo? Sorry you had to be hospitalized. Are your kids helping you at all?
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No to the nuelasta, have a feeling will be, kids have been great, i am just very tired. The doc said even though i didnt throw up my stomach was spazing, she referenced it to being like a seizures strange all I know is it hurt and my diaphragm is sore. Hope all is well with you
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Just checking in for my roll call. As of 12/24/12 I am now 4 years out. Knocking wood hard......
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Congrats jaimeih! Looking to say the same as year one approaches this spring.
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Thanks to chemo brain, and the fact that I am not on here that much lol, I cannot remember if I have ever signed on to this board. I checked a few pages and couldn't find myself. I guess I could have searched, but I am to lazy right now. I just finished my last Herceptin on Dec. 13, 2012. It hardly seems like it has been over a year since I was diagnosed. I need to schedule my after treatment scan, but I am putting it off. New year, new insurance deductible. That and I just need a break from all of the treatments and surgery's.
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just checking in did get the neulasta shot this time and extra fluids felt better for a day or too now feel crummy, nausea 24/7 and cramping see doc Monday see what she thinks. Everything tastes gross... this is day 8 of 2nd chemo ugh...... Hope she can help some how....... I feel so bloated too....
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volleymom, why do you take neulasta?
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Volleymom, When my feet started to swell my onc put me on a low dose of a diuretic. The Taxotere will cause swelling. I loved getting the nuelasta. Didn't get a cold or the flu the year I was getting chemo.
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SeattleMama -Low blood counts red and white, the nuelasta is for white. Still feel awful going back to bed ugh
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Volley- ask onc if counts are low enough that you need nuelasta, my onc said I didn't need it so I it was one less drug I needed to have, I think some may use as precaution. If white count is high enough may not need it 😄
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I used Neulasta during my AC chemo, but then throughout the 12 weeks of Taxol I did not receive anything for my WBC. I agree if you don't need it (if your numbers are good) don't worry about it.
Have a great day.0 -
Hi all,
Count me in. I was diagnosed July 2012, had a lumpectomy and undergoing chemo (TCH) right now, still have one more session before I start radiation. So far so good, I found TCH kind of mild, overall I haven't had bad SE, except in session # perhaps due to the accumulative effect. My last session scheduled this Tuesday and am so excited to get it over
however, I am little concerned about a recent ribs pain, I started to feel it almost a week ago, it is right below the tumor site, feels tender and hurts when I touch it. I will ask my onc to check it. i haven't had any scans before, my margin and lymph nodes were clear so my onc didn't see a need to do PET scan. I hope nothing serious ..
Love to all,
Abby0 -
Hello Ladies!
Joining the group...Diagnosis in June, BMX in July, some delayed healing issues, started chemo in TCH Sept and finsihed up about 2.5 weeks ago, starting rads in a week, Herceptin for a year and exhcange surgery and port removed sometime in the future....
After first biospy I was ER-/PR- Her2 +++, after surgery path was thought I was ER +, my MO sent my path off to Genoptix and it came back ER - ....so back to the original dx.
I don't see too many people with our dx, so it's nice to have this thread. Love hearing about the survivors who through with treatment and going well! Also sending postive thoughts to those of you in the midst of treatment! We can do this!
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