TRIPLE POSITIVE GROUP
Comments
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Omaz,
I just finished The Emp of all Maladies. I am so thankful to all those involved in the clinical trials, for everything they endured and the Dr's that wouldn't quit. I find it sad that this war is still so underfunded though.
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I'm slowly reading Emp of all Maladies. So glad it isn't the 50s. It's odd because I grew up near Boston. (My parents refer to the Mass General Hospital as their condo in the city these days). I recognize all the towns and streets they mention.
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Loved Emp of all Maladies. Read it earier this year. Agreed about the 50's. Even the 80's. Hard to believe though that with all these genius types working on cancer cures that we don't have one yet. Stupid cancer.
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I haven't read that book, but I had an aunt diagnosed with BC when she was 40, in 1950. She had a mastectomy, and a lot of radiation. My mom said they told her it was very agressive, but who knows. She lived to be 94 and never saw another day of cancer again. One of the neatest ladies ever.
Lago-funny you mention Mass General...after seeing The Help, and Allison Janney's sweater clip, my friend and I decided we needed to bring back sweater clips. So I went on Ebay, found an estate lot, and ended up with 8 of them for a great price. We have used the sparkly ones, but one of them is a clip with Mass Gen as the clip decoration. We wondered if it was used on those wool nurses capes. If you think your mom would like it, PM me with your address and I will send it.
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Fluffqueen thanks for the offer but my mom isn't a sweater clip kind of gal… but it would be funny to send her something like that from MGH.0
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The Emporer of All Maladies was really interesting, so glad that things have gotten so much better as far as treatments. The stories of the MX's are ghastly.
I find it hard to read fiction anymore. Seems I'm constantly reading about cancer....I'm thinking that it might not be real healthy, probably need to broaden my horizons. It seems I'm kind of obsessed with keeping up with the latest news, treatments, etc..
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Hi dear ladies,
I'm nearly 2 years after lumpectomy. I haven't had any LE only a little stiffness sometimes. I'm still exercising regularly. I have some numbness in armpit and on upper arm, sometimes itching too. All has much improved during months after surgery and it doesn't almost bother me.
Best wishes
Usha
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Hi everyone: Arrived back in Florida (from NV) yesterday and have Herceptin today at the new Center. Sure hope they are as good as what I had in NV....that center was/is tops.
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Hi, I'm a new triple positive. I thought I was a HER2-, until my "equivocal" status was trumped by a HER2+ FISH test. I had lump/SNB on 8/26/11. Healing well. Will see MO today for "options." Time to fight! Any suggestions?
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NancyJill - Welcome ! Bring someone with you today.
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NancyJill I'm no oncologist (onc) but I'm guessing you will get Taxotere, Carboplatin and 1 year of Herceptin. You will also get 5 years of some kind of hormone therapy.
BTW have you checked out the Illinois ladies thread? We are having a dinner get together on Sept 30th in Chicago. PM me your email address and I can sent you the info. Let me know soon because I will need to update the reservations. We have 13 women going!
We can chat offlist about where you are being treated. I'll tell you mine if you tell me yours
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Nancyjill-your diagnosis is pretty close to mine. I did bmx as breasts were dense and I didn't want to mess with radiation. I had taxol weekly for 12 weeks with herceptin and now just herceptin every three weeks, recommended by two oncs. I had few side effects.
Take a tape recorder to help you remember and review things.0 -
Ladies, you were right. TC and Herceptin, followed by radiation and hormone therapy. My husband went with me. Scheduling a port and chemo ed., wig consult. Ugh. Ugh. Ugh. I'm Chicago area, too. But I will do whatever to stop recurrence!
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NancyJill - you can do it!! I can't speak for everyone, but about 5 days after chemo, I started feeling 90 - 100% again. It's scary at the start because you don't know what is coming, but really hasn't been horrible.
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Me glove- I went to see my breast surgeon and told him, how will I know if I have a new lump on masectomy site or is it the bumps from mastectomy. S he examined me, I had ultrasound of mastectomy site and of axilla , ultrasound of abdomen ultrasound of neck nodes, also I requested a trans vaginal ultrasound to check my ovaries. I will request this every yr. I. Already had a mammogram on both sides. I'm hoping that this is enough testing. I examine myself both sides at least 3 times a week.
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I just had an ultrasound, which is also considered as sonogram as I told by my family doc. I will get the results later tomorrow afternoon. The technician does not want to tell me anything, first she said I will get the results in couple of days but after I told her my doctor told me I will get the results tomorrow. She then suggested me to call my doc tomorrow afternoon. Keep my finger crossed. I do not really feel pain under armpit, a little bit sour though. I had a herceptin infusion on that arm the day before I felt the lump. but I only have one sentinal node taken so not sure if the infusion could cause any fluid building up.
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Actually had fun with a pal trying on wigs!
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Question: my first 5 to 6 hour infusion is Tuesday. Should I get someone to drive me home?
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NancyJill Yes! You most likely will get Benadryl and might be a little out of it. It's along intense day too. I'm not even sure if they will even release you without someone being with you.
Once you know how you will feel/react then you might be OK. My last chemo I took the bus/subway to treatment then a cab home. It was the only time my DH couldn't make it but I knew I'd have no issues. I didn't drive though because both the Benadryl and Emmend made me space till Friday afternoon. (I also had chemo on Tuesdays). My first chemo I was totally out of it because of the Zyrtec. I got used to the Zyrtec after a week.
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Hi Everyone!!! I haven't been on in a long time, but have been trying to catch up on all the posts. It looks like everyone is doing well
Thank Goodness. I had my third Herceptin (by itself) last week and was wondering if anyone has leg or back aches? Boy I do!! especially in the am after getting out of bed. I am like the tin man. I don't know if it is still a "gift" from chemo or from the Herceptin and/or Arimidex. My Mo wasn't concerned, but was just wondering.......Hi Arlene hope you like Florida!!!0 -
lago - how fun to have a get together of all of you in Chicago, kinda wish I lived there, it would be fun to meet you all in person.
bucky317 - I have leg pains from the AI, it's not the Herceptin for me, I finished that in May and was hoping that some of the pain was from that, but no such luck, I still have the pain. I know a couple of ladies that changed AI's and the pain went away. Also, I've seen some herceptin only ladies on this site that have the pain from the H.
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I have stiffness but I really think it's from the estrogen sucking drug (Anastrozole). I had my final Herceptin 16 days ago so we'll see but I really doubt it's Herceptin).
Linda if you're ever in town let me know. I've met two ladies so far from BC.org that came to town. Both are planning on coming again too.
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I have stiffness in my legs and back, and I haven't started Tamoxifin yet. Not for a couple of months until after I finish rads. Not sure if it's from the Herceptin, still left over from chemo, or maybe surgery or what. Had my sixth Herceptin (third Herceptin only) two weeks ago. And surgery was 5 weeks ago.
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Hi all: I've been having bone pain and am only on Herceptin but just did a 4 day drive from NV to Florida. Starting the Arimidex tomorrow so assuming it will intensify things. Yuck, but I'm ready! My friend says the aches from the Arimidex are in the morning and go away within an hour or so!!!
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bucky - I really did not have much aching on chemo but as soon as I started Herceptin alone I had hip and leg aches. I had not started Femara yet, but that has compounded it. I find that if I stay still for too long, even sleeping, it becomes painful. As soon as I start walking around I am fine. I will be curious if it lessens when H only is done at the beginning of the year.
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Arlene I didn't have any issues with Anastrozole till 3 months after starting. Yes the small joint stiffness goes away within an hour of waking up. For me the stiffness in the legs is only an issue when changing position from sitting to standing or the other way around if I've been in one position too long. Takes a couple of minutes to unstiffen. Not a huge deal.0
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Hi ladies: So sounds like stiffness is the biggest SE from anastosozole (arimidex)...doctor says some have hot flashes too. Started mine today.
Wow, it is so hot and humid here - way different than the nice HOT, dry NV weather.
Another question: At my center in NV when they did the Herceptin, they ordered it from the pharmacy which was right on the floor with the infusion center and when I arrived, they immediately hooked me up to fluids and then when the Herceptin arrived, they stopped the fluids and started the Herceptin which was clearly marked Herceptin and when it was finished , they completed the fluids.
At the new place, when the onco nurse arrived with the bag, I inquired if it was fluids and she said Herceptin mixed with fluids. She says they combine them; however, the infusion took the normal 30 minutes which is what it took me for H only in NV. Am I needlessly worrying?
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Arlene my herceptin was one bag and it was only a 1/2 hour infusion. I wasn't infused with anything else so I assume if there were other fluids they were in that bag.0
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Arlene,
I only get one bag with the Herceptin in it.
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My family doc called me this morning and told me the ultrasound result showed it is fat under skin, just like some other sisters said. Thanks very much for the input and encouragement.
I also got my BRAC results back, it is normal. But I have an appointment to see an oncologiest at a cancer center to see if I need to get another (P10?) gene tests that relates to thyroid (my sister had and did surgery to remove last year) and fabroid I have.
I counted my herceptin to be done by the end of Dec if indeed I would get total 18 herceptin infusion, but the nurse told me I will be done in Feb. I get every three weeks.
Wish everyone the best!
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