January 2013 chemo group
Comments
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Laura5, even with the AC chemo?
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Lee~Thanks. That's interesting. When I read my pathology report it said somewhere on there that it was her 2 neu+. Then my onc explained, that's how it looked until they did the fish test which gives them a better picture. So, I'm her 2 neu-.
I'm running out of steam.
Goodnight Girls
Paula -
Wow. I definitely cannot be gone for two days.
skimommi: OMG, look at your cute hair! I’ve wanted mine to look exactly like that for years! And Skigirl, your new pic is adorable, too. How I long for straight hair. Maybe that’s why I’m not as worried about losing it…
Nikki, I’m pretty sure I could enjoy an evening with Channing Tatum and Alexander Skarsgard as our bartenders. And great suggestion about the coconut water. I hadn’t even thought of that, but it makes perfect sense.
Nicole, Liz, and forest, ciao belle! I’m glad you found us. If you have to face this cancer nonsense, you may as well face it with some awesome virtual sisters, and you’ll definitely find them here. I know I have.
Oliverhog, ciao bella. What a terrible year you’ve had. I’m so sorry for everything you’ve been through, and I hope the year to come is full of the health and happiness you are long overdue.
Lee, I’m totally claiming a chemo deficiency from now on! LOL! I start Herceptin with the Taxol, so that’ll begin in March. The Adriamycin seems pretty common up here unless there are heart or lung conditions that make it especially unsafe. As for me, you know I was really of two minds, but came down on the side of AC in the end (as you can see!). I guess the regional bias is contagious! BTW, thanks for sharing the awesome articles on HER2 positive stem cells. That’s just wild.
Mandy, what rotten luck! I know the punctured lung happens on occasion when they’re trying to get the catheter in the vein; I’m so sorry it happened to you. But bless your DH for being with you, and your in-laws for helping with the kids. I hope your recovery is speedy. Keep us posted.
Ci vediamo, belle!
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LeeA
To really add to confusion-her2 status from primary tumor can change with mets and those tumors can become positive when primary was negative and vice versa. My primary biopsies were negative but my lung mets were positive on new biopsy. Seems like everyone should be given Herceptin from the get go. Hope the rules change for prescribing and getting insurance companies to pay.
ASCO has an article recommending repeat biopsies for mets. I started as Stage IIIb but progressed to Stage IV. That is when I started Herceptin.
http://www.asco.org/ASCOv2/Meetings/Abstracts -
Barbara, thanks for the link.
Are you still on Herceptin? Looking at your profile I'm assuming you're not.
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Whoops! I cut off some of my post... or maybe I just wanted to make it look like I really do know how to control myself. Not that any of you are fooled. Neither am I.
russell, I’ve heard that eating popsicles can really help mouth sores, but I’m not sure if it just helps prevent them or if it also helps the pain once you have them or helps clear them up. Anyone else?
SeattleMama, ciao bella. Sounds like a rough day at the office with the 10/10 after chemo. Did your tumor size get much of a response to the cytoxan/carboplatin? Also, if you don’t mind me asking, where are you being treated? I’m at Swedish on First Hill, and it looks from your name like we might be neighbors…
Sandra, HER2 status can be measured with two different tests (IHC and FISH), and both of those can identify the sample as positive, negative, or borderline. I’m guessing that your friend was in the borderline group, which is why they needed to retest. I don’t understand yours, though; I’ve never heard a HER2 result reported as a percentage.
Okay, I think that might actually have been everything... and even if it wasn't, my brain has run out. It's off to bed for me. But I'm sending positive thoughts to all of you. Buona notte, belle!
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LeeA
I am still on it. I started last Feb and will continue indefinitely. Cardiac profile remains good. I am on this and Halaven. This drug has been a miracle. Tumors are resolving and shrinking rapidly!
Have you seen the movie about the discovery of Herceptin? Harry Connick, Jr plays Dr. Slimon. Even if you don't like the movie, he is a great distraction to watch! -
Oops...should be Dennis Slamon. The movie is "Living Proof".
Time to call it a night. Typoing more than typing at ths point. -
Whoever is on Facebook and wants to friend me, I am under Colleen Hackett Lewter.
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Barbara, I haven't seen the movie but it's on my list of movies I'd like to see! I keep meaning to check Netflix to see if it's available.
I fell asleep between posts but did see your post on another thread regarding how well Halaven is working for you! Thank goodness! The words "tumors are shrinking rapidly" are great words to read!
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I just wanted to tell you all thank you so much for being here. I'm so sorry that we're all facing this but the support and caring is incredible. My heart goes out to all of you and thank you from the bottom of my heart for the kind words, advice and sharing. Good night all. Hope all of our tomorrows are better.
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Hey Carla,
thanks for asking. Chemo day Thursday no problems, woke up Friday after good night sleep felt pretty good. Went to two doctor's appts. and then Walmart, OMG the fatigue hit and even driving home was a strain which is unusual for me. Some nausea no big deal meds worked fine. Saturday the pain from the Neulasta hit and I had to call the MO on call for Lortab, ibuprofen, and tylenol and heat were not doing the job. Slept off and off and just got up. Feel better less foggy in the head, still have muscle aches in places I didn't know I had muscles. LOL. So far so good drinking lots, eating light, moving around to keep lose and being grateful that I feel as well as I do.
All hang tough, Sheryl
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Lauren15,
A nurse I used to work with sent me numerous surgical scrub caps. Way more than I can ever wear. She told me to pass them on, so I will gladly share. They are 100 % cotton some tie some have elastic, really cute prints and will be cool for our warm weather here in Florida. If you are interested I will send you some. Just PM me your mailing address. Hang in there.
Sheryl
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Hello, I am new to breast cancer and to this forum. I had a double mastectomy on Jan 7,and have my first post op follow up with my surgeon on the 17th. I am calling on Monday to see if I can schedule an appt with a medical onc to discuss chemo. I don't even know if my surgeon is going to recommend it or not, and I am trying to decide what I should do. My right breast had "malignant invasive carcinoma and intraductal carcinoma", "features of adenoid cystic carcinoma". My left breast had something (not sure what it's called) in situ, and I don't have a copy of that report yet. They took sentinel nodes from both armpits, and said that they're negative but I will get the actual reports on the 17th. I have so many questions I am writing down for my doctor. I believe my cancer was stage lla, but that's from my own research and not from what anyone told me. I see some posts referring to going to your "PS". What is that, pardon my lack of knowledge. Thank you all for being willing to share your experience so we can all benefitfbenefit from each other.
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gd2shuz - welcome. Sorry you have to be here but since you have to be here - you're in the right place.
PS = plastic surgeon
BS = breast surgeon
MO = medical oncologist
RO = radiation oncologist
PFC = post final chemotherapy treatment
HER2 = a type of breast cancer cell
ER+/- = estrogen positive (or negative)
PR+ = progesterone positive (or negative)
TX = treatment
DX = diagnosis
BMX = bilateral mastectomy
SNB = sentinel node biopsy
ALND = axillary lymph node dissection
My sleeping pill hasn't kicked in so I'm wide awake and just decided to make a list of acronyms to add to your original question regarding PS.
Perhaps your left breast had DCIS (ductal carcinoma in situ)? In situ means "in place" - meaning, the cancerous cells were confined to the ducts versus invading the area outside the ducts.
The person who will probably decide if you'll need chemotherapy is your medical oncologist although my breast surgeon told me during my first appointment that I would need chemotherapy (mine was a high grade tumor).
There are so many new things to learn and so many ups and downs but again, you're in the right place and you're absolutely right - we all learn (and lean) on each other.
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Sheryl, so glad to hear you're feeling better and moving around!
I was so worried the big F (fatigue) was going to hit while I was driving to downtown Los Angeles to pick up my husband in rush hour traffic. Fortunately, he took the wheel and it hit when we got home.
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Thank you LeeA, that was very helpful. Hope I can get some good info from my doc. Thanks again for your reply!
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nicole, i had the same thing start a few days ago, about day 12. as for tmi, it was only when i wiped at first, then yesterday i could just gtab a handful.. The lower it was tge easier it came out, but this morning, day 14, it all headed south in the shower. im going to shave my head tomorrow, day 15, as it's coming loose in my hands now.
Lee yes it's really hot here, not as hot as aus but still scorching.
Hope everyone is doing ok, I've got another week till round 2, thank goodness.
Xx -
gd2shuz~I wanted to add a few things to Lee's list. You may also see these abbreviations on the forum:
DH...dear husband
DS....dear son
DD....dear daughter
DIL...daughter in law
SIL...sister in law or son in law
Mil....mother in law
DGF...dear girlfriend
IMO....in my opinion
Btw....by the way
You'll get used to all our little abbreviations.
I'm sorry you need to be here, but you're in the right place. There's a great group of sisters on here with lots of advice, support, laughter, and love to offer.
Blessings
Paula -
Colleenkelly, Yes, I remember seeing several women on the cold cap thread who used the caps with AC.
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Hi ladies. I'm Lisa and will be joing you in this journey. I start 12 weeks of taxol/herceptin on the 23rd and just want to say thanks for the tips-hope they will help. I'm trying to read through all the posts and catch up on who's who and where everyone's at in their treatments. Took my daughter (14) with me yesterday to look at wigs and get some headgear.I wear my hair short but that was an odd experience to say the least! Although the woman did great-3rd wig and she nailed it. The 2nd wig I looked up and there was my mother staring back at me-both my dd and myself were totally freaked out
Is anyone taking just the Taxol/Herceptin without any other chemo drugs? I'm preparing for the worst side-effect wise and then if it's not that bad it will be like a nice treat but just wondered how they are making out.
Glad to meet everyone!
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Gr8flmama21, I'm taking TC-H, which is Taxotere (like Taxol) and Herceptin, and also Carboplatin. You're right, they prepare you (mentally and with extra meds) for EVERYTHING, but I just had my first round on Friday, and thank G-d - so far so good! I have had virtually no problems at all.
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Hello January sisters...Today is the day. My sister in law is coming over to shave my head. I'm scared to death of this next step even though I know it's necessary because of my hair loss . I'm so sad...
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karenneedshope {{Hugs}} for you. I was not thrilled when I had my hair buzzed but I got used to it very quickly. Wishing the same for you. So nice that your sister in law can do it with you. It is nice to be able to grieve when we need to grieve and to feel safe in doing so. I will be thinking about you today.
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Nancy620, It was me who suggested the FB thing. Debbie Inzana...
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Karen I hope it wasn't too traumatic? I'm doing mine today too, looking forward to getting it over and done with tbh. Then I'm going back to work after 3 weeks of lovely relaxing summer holidays. I think I'm dreading that more! oh well.
Xx -
Karenneedshope- so sorry. I am just having my hair cut short today and am very sad. I can't imagine the next step. We have to remember that it is temporary and it will grow back. I have had beautiful long dark hair for most of my adult life, not even a gray hair yet and I am 43. We will make it through all of this and come out stronger because of it! Go ahead and cry there is nothing wrong with it. I know I will when I see my long hair falling to the floor. I think this is the day my husband will cry too. He loves my hair. Hugs to you!
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{{{{karenneedshope}}}}
My heart goes out to you, and everyone else. I have had long hair my whole life and am in somewhat denial when I wash it in the shower and think "I won't be doing this in a couple weeks". I keep telling myself it'll grow back. It will and I'm not letting this side effect or any others take my joy.
I try and spend my Sundays being grateful for all my blessings God has given me-this room and all you gals are one of them.
xo Nikki -
Hello Friends!
I am just catching up after a day or so resting from treatment #1. So far, so good! I went to see the wonderful Chinese doctor I found for more accupuncture yesterday - our goal being to continue the detox of the drugs and as she put it, take any potential SE from a potential '10' down to a '2'. I felt so relaxed and 'good-tired' vs fatigued that I just kind of chilled out watching TV and mini napping all day. My appetite is low, but I keep up with 5-6 small bland meals and a protein shake, and LOTS of water - aiming for around a gallon a day. No problems with nausea and haven't taken any of those meds. Sleep is pretty normal for me, still haven't had my steriod high and today is the last day on that med, so maybe next time I'll get to cleaning my closet!
I've been doing the mouth rinse and also added a small cup of water with 1/2 t raw apple cider vinegar to drink a couple of times a day...saw it on another post and thought I'd give it a shot. I have also added 1/2 cup pure cranberry juice to one of my tumblers of water each day to ward off bladder issues as I've had infections in the past. I had the Neulasta shot on Friday and no SE from that - I started taking the Claritin 2 days prior and have kept up with that - I'm planning to just continue on Claritin throughout I think as I know some other SE include runny nose and watery eyes so figuring it may help with that.
I also followed the nail care protocol -- dark polish on tx day and then remove and go to one coat Sally Hansen Hard as Nails for 7 days, we'll see how it goes. Not sure what to expect.
Today was my first hair washing since using the cold caps - it will take a while for me to find the best system, but other than being very cold from pouring the cool water over my head in the shower, I survived! Good thing you only wash once a week.
I hope you are all having a good day and wish you strength for anything that comes your way...
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Wow Lee - thanks dor the links to those articles!! I think all of us that had been categorized as HER negative need to show these articles to our MO's !!! This is newly published information from just this December !!! I will look up my FISH test results and post them - but my Oncotype DX did categorize my HER status as " equivocal ". Not positive not negative - but on the bar graph they supply for the report it was almost to the negative - left side if the equivocal part of the graph . I am suspicious of the medical / insurance co's not wanting to spend the 70 k for herceptin - for a boardeline case like mine could be - so I will do more investigating on this issue as I would like to avoid a recurrence - as would we All !!
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