TRIPLE POSITIVE GROUP
Comments
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Cindy,
I posted all that and totally missed the Stage 0 thing. Oops. Guess you really will have to wait until after surgery to find out what your options are....because like others have stated, DCIS "usually" doesn't get chemo..unless it has gone to the nodes.
Solt,
You asked about Herceptin. I retain fluid in my thighs. Fluid that can be pushed with massage out of my legs (and lasts for 24 hours). I thought it was left over from Taxotere and chemo, but Onc said, no...leg swelling is NOT left over from chemo and the cardiologist said leg swelling is often a symptom of heart problems.
My heart beats "normal" most of the time....but sometimes when I get really still, out of the blue it feels like a jumping bean, or a staggering horse, beating against my ribs. What it means for my athletic performance is I hit a "wall" about 40 minutes into a hard workout. Meaning, even if my life depended on it, I can not make my muscles push any more..I think this is likely due to a hindered oxygen to muscle ratio...in fact, I'm sure that's it and confirmed pretty much by my cardiologist.
For me the legs and the "weird" heart beat are the biggest symptoms. I understand your concern. After my last Herceptin tx, my heart beat around 160-180 beats per minute for over 4 hours while I was sitting down!! It took off and I couldn't make it slow down....my usual heart rate is 56!
Get the ticker checked if you have weirdness...lol. That's the only way to be sure. Good luck and keep me posted!
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Nice speech lago!0
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Lago, I liked that line too!
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Great speech! I hate public speaking with a passion. I am great in small rooms where I can sit at a table or just have a conversation with a small group. Give me a big room and a prepared speech and I don't care how long I prepare, I suck at it. I look out into the group and the whole speech is lost, and then I read it, which I really hate.
I have had an irregular heartbeat off and on for decades. First time, I was around 30. We had been on a houseboat with friends. AFter we got home, I was so dizzy and my heart was skipping a beat all the time. I freaked, when to my mom's cardiologist, who walked me through everything I had been doing....drinking more? Yes, it was a vacation. Where? On a houseboat. I wore the haltor monitor and they could see it skipping, but she told me she thought my inner ear balance was messed up from being on the boat for five days, and irregular heartbeats can be triggered by drinking more than usual. She didnt feel I needed meds. I have had it off and on since then. Seems to happen around stressful times.
My echos were always ok...dropped to 50 at the lowest...BUT, an EKG freaks them out every time. AFter my first biopsy, I went to a different hospital for the second one. I had my first ekg transferred over since it had only been a few weeks. No one had said anything to me, but they wouldn't do anything until I had it cleared with a cardiologist. So....I had the big stress test. The cardiologist said he thought the only thing wrong was my diaphram laying over something weird.
Last week at the fat grafting, they did the ekg, and she didn't say much, but made an off the cuff comment. I told her I had just had an echo two weeks before that, and that seemed to satisfy her, so I am not sure what they saw.
Wears me out.
MsTori....I forgot to mention, I did not eat anything special, and did not get Neulasta, although my counts stayed ok. Onc only gives if they drop. However, I did end up with a pseudomona infection, which is bacterial and hard to cure. Probably from surgery, as it is usually a hospital thing, but you can also get it from fresh fruits and veggies, and I was making green smoothies every day as it tasted good. The nurses also said a lot of studies have shown that what you eat doesn't make a diference, and that older docs are the ones who make people follow the neutropenia diet.
I did give up salads in restaurants after the infection though. Figured why tempt fate. And at home, I carefully washed EVERYTHING.
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LAGO ---great speech (as I knew it would be)- Were u nerveous? cuz if u were I bet u didn't show it.
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Camillegal, Actually not too bad. I think it helped to have prepared good speech and read it out loud several times. It actually was longer but I had to keep trimming it. They really didn't want us to go over 2 minutes. I feel it was a both a good plug for the ACS programs as well as talking a little bit about my personal journey.
Guess I'll find out for sure when I see the video. I did get a chuckle when I said I was the healthiest looking person in the chemo room because of the Looks Good Feel Better program.
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Lago, I knew you would be awesome. Great point about family history, or lack of.
MsTori, don't worry about the port. I got my power port the day if my first chemo. I got myself all worked up over it, and it was easy. And now, a yearI after chemo started and still getting herceptin, Im so glad I have it.
Jennifer404, I just pm'd you.
Jenn, glad your surgery went well. Feel better soon.0 -
great speach lago! i so hear you on the family history thing...so many people (including myself) think they are safe if they have zero fam history. Actually it is one of the first questions ppl ask me, when i tell them no they are visibly freaked out. It was always the first thing out of my GP's mouth when we talked about risk factors
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Iago: wonderful speech. Especially the theme of lack of information/knowledge, leading to delays in dx. When I look back to Christmas time 2010, I remember feeling alot of heaviness in my breast and in the Jan 2011 I started taking vitamin supplements as I generally felt run down. These were my warning signs. Dx Feb 27th 2011. Now stuck with LE, like you and I wonder if I'd known more, perhaps I could've caught it earlier.
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Warning signs for me that I didn't realise were warning signs - sore spot and weird "sweat" from under that breast. My perspiration in that area became waxy and smelt "different" but I didn't realise why until months after my lumpectomy when I realised the weird sweat had gone.
Jenn0 -
Hello ladies...just found this forum. I am just getting started in chemo. Just had treatment #4 of 12 weekly treatments of Taxol and Herceptin followed by a cycle of 4 treatments every 3 weeks of FEC and Herceptin. That's all before surgery in Feb/Mar and then radiation. Hope you don't mind me joining in!
Is anyone on TDM1 trials? Just heard about it but don't know what it is, benefits of it are, etc.
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LAGO-- Great speech
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Forever Welcome we have such A nice group here ask anything we all will chime in.
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Foreverchanged The last time I checked TDM1 trials are for women with metastatic disease. I don't know if they've started trials for early stage. Typically approval for metastatic disease comes first. I know my onc is participating in the current study. There are other trials with other new drugs that have been approved for late stage and now they are trying with early stage. I don't know where you would look for trials in Canada. Do a search for "Lapatinib (Tykerb®) HER2+ Breast Cancer trials"0
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Lago...way ...to.....go! Bravo. My parents each had 9 brothers and sisters. And I have so many cousins I can't even count. I am the family history.....you nailed it.
Is this it Lago? With TDM1. What you think? Is this the future for her 2 pos bc ? No chemo?0 -
From what I understand TDM1 has chemo in it but only targets the tumor/cancer cells. I sure hope this is the chemo. Would be nice if women didn't lose their hair, have nail issues, neuropathy and all those more risky SE with traditional chemo.0
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Lago- great speech! I wish I had known more before my cancer. I actually just filled out ACS paper and faxing it in today. VA didn't give it to me- got it from local hospital! Lol! I need to be an advocate at VA for all this! I am going to my first support group tonight, and scheduling for 'Lool good, feel better' Nov 6th next class. Also, we have a pink up the pace event this Friday with all the local community booths set up.
Fluff- I think that's what I will do. I love fresh fruit and veges too much. I will just wash them good and eat them at home.
Shore- I am deep breathing over the port insertion. Lol! I am now scheduled to def get it put in Oct 11th at 7 am. The day before chemo. I guess they didn't have an opening the day of. Also, I still can't lay completely flat because of my tram. So I have to see how that will work out.
Forever- welcome! These ladies are great and so knowledgable! I've found this to be my second home. Hope you feel the same.0 -
Thanks, Lago. I asked my oncologist last visit about Tykerb. He said they weren't offering it at my hospital or any that he knew of in Canada. He thought that if I was interested in it I would have to go to the States to really look into it.
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Oh, and there was a segment on Canadian tv last night about TDM1 which is how I found out about it and a trial being done somewhere in Canada with it. They did mention it was on "advanced" BC so I figured it was stage 4 metastasized cancer.
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Foreverchanged if you are interested in trials now is the time to check. I found once I was done with chemo there were very few trails I qualified for. Many that I did involved exercise after chemo but I don't have a weight problem so I didn't qualify for those either
Here is one place you can look:
https://www.breastcancertrials.org/bct_nation/home.seam
http://www.cancer.gov/clinicaltrials/results/type/breast0 -
Welcome Forever!0
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Welcome forever, and sorry you have to be here.
MsTori, you be that advocate, knock some sense into the VA! (LOL, I typed in VA and it auto corrected it to BS!!!! LOL) also, my port was placed by my BS, on a Tuesday, and my first chemo was Thursday, so they left it accessed. I slept in my magic chair for that. ( Electric lift Recliner)
Lago, thank you for posting your talk. I love that line, its a winner. " I am my family history" says it all. I think that is a perfect sound bite. Thanks again.
To all, much love.0 -
Saw my infectious disease Dr today, three more weeks of abx! But at least NOT IV abx. Just oral. Better stay in adult dispisables yet! LOL. But, my is doc says I scare her. Gee, thanks. LOL
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forever welcome fellow canuck!!! i don't meet a lot of canadians on this thread . Where are you being treated? I'm curious as you are having weekly taxol and they don't do that at Sunnybrooke where i was treated. My surgeon actually moved back to Montreal. If you have any canadian protocol specific questions please feel free to PM me
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Hi. I am kind of new to all of this and I have a couple of questions. Hoping somebody knows about this!
(1) if our cancers are HER2 and hormone-fed, why don't they address the hormond aspect of it until AFTER chemo? I am HER2+ and ER+. (I was also slightly PR+ but at such a low number that they consider me PR-?). They are addressing the HER2 with Herceptin and Tykerb. I am also receiving taxol. But the plan is to wait until after all my chemo and surgery to start the estrogen suppressing drugs. If they know my tumor is fueled by estrogen, why wouldn't they try to suppress that right now too?
(2) the day after my chemo is my best day, presumably because I am still full of my pre-med steroids. My husband asked me why thy just didn't have me in a low dose of steroids every day if that would make me feel better. I thought it was a good question. Any thoughts?
(3) I am having triuble finding a good balance between having D and getting C. When my D starts, if i take 2 immodiums (what the box says to take), it works but I feel crampy and kind of plugged up the next day. So the next time I tried taking only 1 immodium. That did not stop the D. I went back to 2 immodiums and had the C trouble the next day again. Trying not to get too graphic, but ut's not really that i get C, it's just that i get an upset tummy, feel crampy, and have to sit there forever. Lol. Just trying to find a middle ground, if anybody has any suggestions.
Sorry for the long post!! Hoping all of your experience can answer my questions!0 -
Welcome nicky the bean....
1. good question. I guess they figure the big guns of chemo and herceptin are effective enough without hormone therapy. Then you've got the surgery factor. Rads for most and when all of those are finished they give us 5 years of the anti estrogen stuff. Waiting for anti etrogens extends the treatment period and it seems from all the stats...the survival rates
2. Steroids have mucho, mucho side effects.....
3 Sorry but I didn't have enough trouble with the big C to be of much use. No D thankfully.0 -
nickythebeen you really don't want all those drugs and SE all at the same time anyway. They need to know what SE are from chemo and what are from the anti horomone therapy.
Ask your onc if there is something more gentle on your digestive system you can take for the D. Or maybe they can give you something for that too.
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Nicky, I had the big D. But maybe you could try a stool softner after you take the immodium? It shouldn't affect the D too much. As for steroids, they sent my blood sugar sky high. And sleep was not an option with the steroids. Much love
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