ER-, PR-, Her2+ Roll call
Comments
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Mainrottweilers -- i had my first herceptin today. Now my face has a triangle-shaped rash from the bridge of my nose down to my mouth. I took some benedryl hoping it might help... but it has me a little worried. Hubby thinks I need a chill pill...
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Keep an eye on it, I started around my eyes, nose, mouth and cheeks. I thought I was breaking out in pimples, also got some vaginal bleeding to go with it. Bled every other day to day eight and then came the rest of the rash. I noticed it first on the inside of my arms, little pin point dots that later developed into pustules and spread. I wonder if coming off the antihistamine (for my neulasta injection) is what let it get going?
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Hi girls, I just saw this post for the first time.
I had a large er/pr neg her2+++ tumor.
Four months ago I completed TCH therapy, iced nails and hair- both survived.
Now I just started rads, and continue herceptin for the full year.
After chemo and surgery, I am currently a NED and SURE hoping my status can stay that way......
I just wanted to check in!0 -
Thankfully, the redness went away after 24 hours... now I'm just left with bone tired exhaustion
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I hear the bone tired exhaustion. I slept most of the first 36 hours after my neulasta injection. I perked up enough to go back to work on day four. Other than the rash and one day of nausea, because I skipped meds, I've felt pretty much fine. I tire easily but rest thoroughly. Best of luck for continued recovery.
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Howdy everyone! I haven't been on BC.org in forever, but since this month I celebrate my "cancerversary" of SIX years, I just wanted to pop in and say, HANG IN THERE, ladies, it will be over SOON, you WILL recover, HAIR grows back, skin gets BETTER, EYEBROWS and EYELASHES grow back, you will find a NEW NORMAL, and LIFE WILL BE GREAT again!!! Right after my diagnosis in July 2007, I remember being scared to death, thought I was going to die, not knowing what to expect, and I would come here and be surrounded by great friends and wonderful words of advice and encouragement that kept me uplifted, so FORGE ON!
Sincere Hugs and Healing to all,
Mary Jo
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Thanks for the words of encouragement bluewillow! It is good to see someone with the same diagnosis (and treatment) who has survived and come through to the other side. I don't know why, but my first dose of Taxol has knocked me for both an emotional and physical loop... Thank you for sticking with this board, even though you are no longer in active treatment.
Hugs,
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Hi 6cats,
You are welcome! I'm really sorry to hear the Taxol has been rough. That is some really strong stuff. Although I was lucky and never got very sick during chemo, the Taxol was the most unpleasant of all my tx and I do remember being very tired and weary through it also. One weird side effect that is still with me is the damage it did to both my toenails, of all things! Compared to the other side effects it can have, that one is minor for sure, but it's like it had to leave something to remind me! I remember well my chemo nurses telling me the first Taxol tx is the worst and that every one after will not be near as bad as the one before, and they were right, so hang on!
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Hi hormone negative ladies,
I'm wondering if anyone felt cold instead of hot during chemo? I'm about to have round 5 (of 6) of TCH. I haven't had a single hot flash and most of the time I'm cold and have to wear socks/hats/sweatshirt in my house. We keep it at 73 in here- not like it's cold! I was thinking that maybe the chemo isn't affecting my hormones as much because they aren't related to my cancer?? Was anyone else cold? I'm premenopausal (35) and haven't had a period since starting chemo but no other signs of "chemo pause."
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Hey Blue Willow,
Nice to see you back and that you are still doing well. So am I (6 1/2 years out from chemo).
The other Mary Jo
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Monkeymom,
I was always cold - I used to joke I was having cold flashes (I was perimenapausal at the time). The herceptin was worst. I would get goose bumps halfway through the infusion and still be cold with goose bumps for about 2 hours after the infusion ended.
I live in Florida so I would joke that I had myown personal air conditioning - especially handy when walking across a hot parking lot in the summer to go shopping after my herceptin.
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It is so nice to see women with similar diagnoses several years out and doing great! Being grade 3 is a bit nerve wracking. Thank you for posting
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Sassa- glad to know someone else was cold and more importantly, AWESOME to hear that you are 6.5 years out and doing great!!!
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Thank you to both Mary Jo's, I sure love hearing about your success stories. Big hugs to all.
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Hi Monkeymom - I haven't had any sort of hot flashes either. I'm 48 and I haven't had a period since about the second chemo cycle and mine had been getting irregular for the past couple of years anyways. I don't think that all women experience them during menopause so I just figure I got lucky on that.
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Well I have officially joined this group. After over a month of biopsies have found out that I am ER-/PR-, HER2+. Have had first AC treatment on July 1 and will end up having at least for months of chemo before surgery, then double masectomy followed by radiation and a year of herceptin. (at least what they said yesterday) I figure it could change by my next chemo on the 17th. I am glad to see others in the same boat as me. Down here in my little town of Arizona I am kind of a oddity..lol
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Hi Hanna,
You are definitely not alone. I would say "welcome" but of course this is a club we dont want to belong to. But welcome to the topic. I find the advice of all the girls here so very helpful.
It looks like you are also a member of the "big tumor gals" club, like me. Mine was nine CMs, hiding in dense breast tissue. yucky thing!
It sounds like your plan of attack is very solid and you are throwing everything possible at the tumor. During the neoadjuvant therapy prior to surgery I could feel my tumor "melt". What we had thought was "dense material" and "microcalcification" on the mammograms for the past four years melted away to be soft breast tissue. yay herceptin!!
I hope that can happen for you as well.
By the time we did my mastectomy there was no tumor left in the breast or the nodes. These nasty big tumors can be killed off, I am living proof.
Now I am in radiation and hoping to stay a NED.
You will be at this stage before you know it- it is all a blur when you look back at it.
GOOD LUCK!!!!!!!!!0 -
Hi, I'm just dropping in to see if there's anything new. I'm getting close to the 5 year mark so I don't read the forum regularly anymore but check it occasionally.
6cats I used to get a red face for a couple of days after TCH treatments. It didn't itch, swell or get bumpy - just a red flush mainly on my cheeks. I was told that it wasn't unusual.
Monkeymom some women don't get hot flashes during regular menopause/perimenopause so it seems likely that some don't get them during chemopause. I was in menopause before I started chemo, but during my perimenopause I had 1 hot flash during the time when I was getting the first other perimenopause symptoms which was quite a few years before my period stopped. That is the only hot flash I've ever had and my sense of temperature wasn't changed by the transition.
They often seem to keep medical facilities on the cool side. I felt like I was going to freeze when they put my port in. The chemo room was always cool enough that I needed a blanket. I don't think whether your tumor has hormone receptors makes a difference to this - it is the same chemo (since they usually don't start the hormone treatment for hormone positive until after chemo) and it is how your body feels about the temperature - not your tumor.
IowaSue if you are getting unusual periods, it might be best to check with your gynecologist. I had one period a year after I'd gone into menopause and my gynecologist did a biopsy for uterine cancer because unusual bleeding can be a symptom. I had done a mammogram while I was at the medical facility for the biopsy and got the call that I needed a breast ultrasound because something on it looked suspicious while I was waiting for uterine biopsy results so for a couple of days I had a couple of female cancers hanging over my head. Fortuantely the uterine one was negative. Yours might be nothing too but if bleeding is lasting for a month at a time, perhaps it should be checked.
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Bluedasher, Five years is fabulous!! Thank you for checking in!
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Hi There sweet ladies. I am " out" 8 plus years from a stage IIIC , er/pr neg, her2 pos BC and belly laugh every day!
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Hey Linda...just dropped in today too...8 years next week , when i found my lump. Life is grand..living each day..and night...sometimes even the middle.
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Hey Maryanne. It's always SO good to see you. Congrats on the 8 years. Time flies and yes Life is truly Grand.
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just wanted to check in and say "hi" - my wife will be 3 years NED in October, so far so good. Good luck to everyone.
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Thanks imatthew...congrats!. On your wife 3 yrs NED, wish her for many many more.
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Hi everyone! It's been a while since I've been on here but just wanted to give an update. Next Wednesday is my LAST herceptin treatment....and my two year cancerversary! I had a real bump in the road when my EF dropped to 18 last summer but I am seeing a great cardiologist and it is now back up to 45!
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It is so good to see all the survivors posting here. I am getting rads now and will be a one year survivor in October. I can't wait to celebrate! I told my husband that I want to plant another fruit tree in our small, up and coming orchard. To me that is a sign of hope, hope that I will be around long enough to harvest the fruit! Hang in there ladies! This is a tough road but it has been made so much easier because of this website and all the beautiful people who post here.
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Thanks to all of you who are coming back w/good news. It's great to hear the results for HER2 positive folks. I have one more chemo to go & then herceptin & perjeta for a year - with more surgery & rads as we go. MO seems to think we really need to throw everything at this recurrence.
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Its great to see all ladies doing so good, can't wait to be one of you!!! Two rounds of Ac behind me, 12 taxol herceptin, then surgery and rads ahead still!! Sure hope taxol will be easier for me!! Trying to live life every other week to the fullest
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Taxol #5 -- DONE!
Almost half way there!
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Good luck Minustwo, Annika and 6cats.
Congrats KdKing, Imathew's wife, and Maryanne!
lovelikerazy what a great idea to plant that tree on your one year anniversary. Can we all come help you eat the fruit in ten years to celebrate??
hugs to all0
