TRIPLE POSITIVE GROUP
Comments
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Hi- I havent been on for ages, Ive been so busy and really forgot I had BC. I am pretty much Asymptomatic, and really happy- its been a long haul
Oh I and I put my pic up finally, my hair has grown and the wig is no more!!!!!0 -
Yes, I had the exact same feelings. I dreaded going to have treatments every 3 weeks for a year, but then when they ended I was very nervous. I, too, asked about being on Herceptin forever;-) I am going every 3 months and I'm always anxious to go so I can be checked out thoroughly...once a month would be ok with me! I remember writing a blog post on this just before I finished treatment. You can read it at:
http://ericaexercisesneats.blogspot.com/2009/09/home-away-from-home.html
Best of luck to you as you finish treatment. You will soon join me post treatment and WE WILL DO GREAT! ((hugs))
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Hi, redinrah. Thanks for checking in with us and reminding us that life goes on after all this stuff fades away. Congrats on having hair again!
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I have good news for us HER2+ gals! I had an appt yesterday with an oncologist at the Dana Farber cencer center in Boston where they do cutting edge research. She told me they are trialling a new therapy called TDM1 that sounds very promising. Here's how it works:
If you're HER2 positive, the HER2 receptors stick out from the tumor cells in your body like little waving antennas. Herceptin seeks out and attaches to those receptors, which, for some unknown reason, causes the cell to die. Since herceptin is so targeted to seek out and find those receptors, the folks at Roche/Genentech (where herceptin was created) got the idea of attaching a chemo drug called maytansine to the other end of the herceptin molecule. The idea is to use the herceptin like a targeted missile to FIND the cancer cells, then blast them with the deadly chemo payload.
There is a thread on the Stage IV board about TDM1 if you want to learn more. It's been trialled in Stage IV patients with great results, and now they're trialling it in other women. If it is as effective as they think and it gets FDA approval, it could mean we HER2+ gals will have access to a very powerful tool to combat the disease.
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We are all so lucky that research is ongoing with her2. Thanks for the update windlass. Al of this may eventually hold the key to stopping this "boogeyman in the closet". Libraylil
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Good Morning Girls!!
I hope you all slept well!
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Windlass my onc has been studying TDM1. I think last August the FDA turned down early approval for the drug. I believe it's now in trials for early HER2+ breast cancer also in 3rd stage (final) testing.
This is the article where my onc is mentioned as well as a small reference to TDM1:
Breakthroughs in Women's Health0 -
Hey nora - how are you feeling?0
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My tongue hurts today!!!!! I also made Belgian waffles this morning since my husband is home. I tasted them and they tasted like cardboard. My husband comes into the kitchen and proclaims they are the best waffles I have ever made....go figure, I had no idea if they were good or bad LOL I accidently put too much baking powder in them, I must make that "mistake" again!
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Nora I made chili, cookies and a bunch of other stuff when my taste buds were gone. I actually had to wait till my husband got home once to try the chili… I had know idea if it needed more garlic or tomatoes.
It took about 5 weeks for me to get used to my food tasting the same. I would eat salad and wait for that bad taste. Really strange.
As I mentioned before I did suck on ice during Taxotere after my 3rd tx and never had the sore tongue or tongue sores problem again. Doesn't work for everyone but did for me.
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I was actually going to do the ice thing last time but they have me so doped up on benedryl for my pre-meds I was asleep when they did the taxotere! In fact my nurse told me (when I finally woke up) she was jealous because I was snoring away and she wanted a nap
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nora - at my last herceptin there was a lady a few chairs down sound asleep and snoring.0
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Windlass - I too am at DF, and am in the new T-DM1 trial. I'm doing my AC rounds now, but will start T-DM1 when they are finished.
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Cellomom and Windlass-keep us updated on the clinical trial. It sounds so hopeful for all us Triple Positives!!!
Day 4-still feeling good, just a little sluggish. Worked from home today-and am very thankful that I am able to do that!!! Just having blah day-don' feel bad just blah!
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Hi gals, just want to jump in and say Hi. I just finished my last chemo yesterday (4 dose dense AC + 4 dose dense taxol). Feeling good. Will have Herception until Feb 2012. I am 95% ER positive too. I was due for pap smear test in last Dec. Did anybody do that test during chemo? Will have a CT scan for chest and abdomen tomorrow morning. Like Lago, they saw something in my liver from CT scan before I started chemo. Glad we have this forum to discuss our concerns! Meg.0
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Meg check with your onc but you will have to wait a bit before they can do a pap. Too soon and it will come back abnormal. I see my gyn next month but he will not be doing a pap… to early after chemo. Since I have no breasts there isn't going to be a whole lot for him to do. I want a discount.
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I was wondering about that pap too. I was due for one June of 2010 and I was just a tiny bit past the date for it when I found out I had BC. Just lately I have been thinking I really should get mine. I was curious about the CT scan too. I had one of those.. wouldn't that be better than having a pap smear or is that giving me a false sense of security?
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lago - so funny about the discount! I feel the same - I just went to my follow up appt from my hysterectomy, and I asked if I still need to visit a gyn since I have no reproductive organs and I'll be having mammos and mri's forever ordered by my other docs (who? I'm not sure - onc?) She said I need a pelvic exam yearly - was really excited to knock one doc off my list, but NO!!!! haha
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I want to sleep so badly tonight.....I am in my insomnia phase
I have on hand
Ambien 10mg
Ambien CR
Lunesta
Ok girls......the Lunesta was a miss last night. Took it at 8.30 and still wide awake at midnight. Ambien puts me right out but wakes me up after 4 hours......(meletonin gives me nightmares so not an option)
Anyone in my boat and what do you do?
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Nora I can sleep once I fall asleep but as you can see by the time of this post I have troubles falling asleep. In my case it's my LE arm bothering me a bit or heartburn. Tonight it's the LE arm. I'll try again in about 20 minutes. So far I haven't taken anything since it doesn't happen every night.0
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Good morning and happy Saturday!
I learned yesterday that I am starting chemo on Friday (AC). I have my orientation on Tuesday and my port surgery on Thursday. If all goes as planned, I'm going to do Penguin cold caps to save my long hair.
Any advice on any of the above?
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Windlass, check out the "chemotherapy, before and after" section. There are helpful hints on everything. Remember that not all people have miserable side effects and nobody has all of them. I did FEC - the "E" is very similar to your "A", for 6 cycles. I found that keeping hydrated was essential - gatorade, flavored water and chicken soup I drank by the gallon the day before, day of and day after treatment. Pick things that you won't miss as one's memory is a powerful thing. Two years out and I can't look at Gatorade, now way, no how.
Hope that you sail through this and then on to Herceptin :>)
(((((hugs)))))
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Hi everyone I like the comment about the discount, I would like some royalties on the naked pics they took at the PS office. Had my pre-surgery appt with surgeon, I guess they are going to take all the lymph nodes....was hoping to avoid this, but they want to make sure no chance of leaving anything behind. I can understand but just wanted to avoid the whole LE thing, she said only 1 out of 5 people get LE.. I will prop be that 1.
Good luck to all of you getting chemo.
Benadryl always works for me to get to sleep, but I too wake up in the middle with either hot flashes or anxiety. Good thing with benadryl, you can always take something else and hour or so after taking it as it is an antihist. and compatible with other drugs.
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carberry - Are they doing a sentinel node biopsy? I don't remember your situation exactly.0
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they already did that when the port was put in. 2nodes 1pos and 1 not. They also said that depending on the # of pos nodes they will determine if I need rads.
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carberry So your BS is telling you only 20% get LE. I was told with only 10 nodes 3% and because I'm so thin more like 1%. I started to notice issues after my 1st chemo 5 weeks after surgery… I have mild LE. The only thing I regret is not having my arms measured before surgery. I would demand that your BS sends you to a LE PT to do this.
I know they didn't do a sentinel on my left side either because the tumor was so big standard care was to removed at least level I nodes. My BS would have removed more during surgery if he found a need but the level I seemed to be clear so he didn't take anymore. Ended up even the level one didn't have any micro-invasion.
windlass good luck. I didn't do the caps but my hair is growing back now. I did 6 tx of TCH. I would check about icing your fingers and toes.
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Nora: I hope you were able to get some rest last night. I have a fully stocked medicine chest of sleep aids b/c I don't like to rely on any one thing (prescription or over the counter) for too many days in a row. But recently I'm finding that the anti-anxiety med ativan (lorazapam--sounds like something from Dr. Seuss) works best at helping me fall asleep and stay asleep. I hope you and your doctor can figure out something that works for you!
Lago: Discount! That's so funny!
Carberry: Royalties! Hmmm, that would help with the co-pays. There's no guarantee about LE, but maybe exercises would help. I asked if I should do exercises after lumpectomy but was told not to worry. 2 nodes were identified w/SNB but one of those turned out to be a triplet (freaky right?) so my BS said the "official" count is 4 nodes. Still landed in that 0-6% to get LE w/SNB. Maybe it would have helped if I did the exercises, maybe not, but I don't think it would have hurt to try.
It's amazing how much easier it has become to bare my chest since so many people (doctors, technicians, nurses, physical therapists) have seen and handled the goods in the past few months. With gyn exams I always pulled the sheet over my head during the exam--like I could pretend it wasn't happening if I didn't actually see the people examining me. Silly! Now there is no chance for modesty. Soon I'll be expecting dollar bills in my panties.
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Teal3Pink1 I know what you mean about the constant flashing of boobs/foobs and doctors "feeling you up" (Checking scars that is). When I met the Rad onc I first saw her 2 fellows, 1 male, 1 female. I told them I lost count of how many times I flashed but yet still have not received any Marti Gras beads. She chuckled. He seemed confused about how to react.0
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Mornin everyone!!
wildlass...I had longish hair too, I stare at my facebook photo on occasion and long for my hair to look that beautiful, I had no clue at the time what a gorgeous head of hair I had until it was gone. I wish I had read about penguin caps to give that a try before starting chemo, I probably wouldve given it a try.
Report of last night.....Took 10mg of Ambien at 10pm, was asleep by 10.30. Woke up at 1.30am and took another (Yes, I know I'm not supposed to but I was desperate) Was in and out of sleep till 4am, finally went back to bed and slept till 6.30am
Carberry...I didn't know that about benedryl and I should try that to see if it works better for me.
Lago....sorry to hear you are in my boat
I hope you got your well needed sleep!0 -
carberry - I am sure you have seen these results of SNB vs. axillary dissection for node positive patient.
windlass - I would encourage you to do the caps. I did the elastogel caps. During the first treatment we were not able to keep my head cold so over the course of treatment I lost quite a bit. We kept up with the caps through all the treatments, my husband was the cap master. When I finished chemo I still had some hair and the bare patches came back in pretty quick to the point where I returned to work at the office without head covering at 6 weeks. It wasn't thick yet but there was coverage. Now at 16, almost 17 weeks, I have hair that is about 2 inches long and have had it trimmed twice.
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