TRIPLE POSITIVE GROUP
Comments
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Mouser - My LVEF went from 55 to 35 during the course of 7 Herceptin infusions (counting during chemo also). I was extremely breathless and my ankles were not recognizable as my own - swollen hugh. I too worry about "Did I get enough to keep the cancer from coming back." I've read in some of the posts on this website that HER2 is highly reoccurring, especially within 2-3 years after treatment and I think that refers to people who actually finished all their Herceptin infusions. What that means for us.....I wonder.
Just had my mammo and ultrasound on Tuesday (can't believe it's been a year since diagnosis already). I got nervous because the tech kept going over the nipple area and taking pictures during the U/S, then she said she was bringing in the doctor to look at what she was seeing. The doctor turned out to be a radiologist who said "Everything looks good" so now I'm waiting to see my onco tomorrow and find out what they were so intent on looking at in the nipple area. Does anyone know if the techs always bring in a radiologist for a second ultrasound?
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My tech had a radiologist come in during my follow-up ultrasound after diagnosis. The radiologist wanted to make sure that she had images of every little thing. She was incredibly thorough and even found several hidden (negative) lymph nodes.
I'm hoping they were just being extra picky for you. At least you got immediate feedback right from the doc. Waiting for results is such misery.
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Blownaway, yes, it is a rather awkward position we are in since we didn't finish our Herceptin treatments. Rather scarey for us as my Onc. was stressing how Herceptin was the magical drug. She is now telling me we'll just have to be more vigilant for the next 4 years (been 16 months since all this started!). I tend to get nervous when I don't feel good and of course am constantly checking for lumps and things. I did have a double mastectomy for my own peace of mind but am so scared at times I just hide and cry. Only a person going through this can understand. I hope your results are positive when you see the Dr. next week.0 -
Also remember that before Herceptin many HER2+ women survived and are still here today. Like chemo we don't all need Herceptin…Problem is they haven't figured out who needs it and who doesn't.
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Blownaway and others: I passed 4 years and I only made it through 10 Herceptin treatments. I've had several oncologists say (as Lago indicates) that they really don't know who needs it and who doesn't. Just remain positive and try hard not to worry. I'm curious how they came up with 18 treatments but guessing this is more than needed but better safe.
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I think the current research in Herceptin is focused on whether shortening the treatment can be as effective. I know they have looked at two years versus one, and concluded that longer was not better. I think they have looked, or are looking at, 6 months versus one year also. There is a recent Finnish trial (SOLD) looking at 9-week Herceptin, to try to limit any cardio-toxic exposure but still have desired results. The data is still too early, and I believe not confirmed by any other trials, but I think that is hopeful for those of you who were unable to do the entire year.
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Special the last I heard was they did say 12 months is better than 6 but it might have been an older smaller trial.
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Arlene, just as a cheer-upper to you -- I never had any trastuzumab, my tumor was 1.9 cm, I was 51 at time of dx, and I only did 1 full year of tamoxifen followed by 3/4 year of half-dose. So far, so good at 12+ years out from tx.
Cheerio!
A.A.
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Well the good news is that my onco confirmed that the U/S tech and radiologist were just being extra vigilant because of some scar tissue which can hide cancerous lesions. They all claim I'm cancer free and should go live my life as normal.
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sure hope that they come up with a more conclusive Dx about herceptin, I really have some issues with it and have only done treatment since February 26 th. some numbness is creeping in on right foot and right thumb so far, and a horrible case of acne on my face. The cardio so far has been minimal, except for rapid heart beat with over exertion ...
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The numbness can also be from the Taxol. It is generally the culprit of neuropathy.
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Yes, the taxol causes neuropathy. I started having some problems with my feet towards the end of chemo. The only SE I have from Herceptin is the runny nose. I had my exchange and reduction/lift yesterday afternoon. I feel pretty good today. A little sore but ibuprofen seems to help. I can't wait to see what everything looks like on Monday. I can't believe it's been one year since I was diagnosed (April 25). Next Saturday will be my one year cancerversary. It's been a long year.
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On dense breast tissue...the role for additional screening .
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http://health.usnews.com/health-news/articles/2015...
Nipple sparing mastectomy is as good as full breast removal in many cases......
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Jerseygirl. Taxol causes the numbness or " neuropathy". You can ask your MO about taking B6 to help with this. Also, let your mo know if it gets too bad because it can become permanent.
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I felt like sharing a snippet of something I wrote recently:
The greatest tip I can offer to anyone is to remain positive and keep those that lift your spirits around you as much as possible. To be treated like a normal person is the greatest gift a family member or friend can give to their loved one enduring this diagnosis. It is essential to take care of oneself and to not exhaust oneself or spread oneself out too thin. Cancer demands your time and your energy during treatment but it is not permanent. It's just a little detour on the journey of life. Ensure that you are staying hydrated and nourished during treatment and if you're anything like me .. setup a way to receive fluids days after treatment to prevent dehydration and hospitalization. If your hair falling out is inevitable and you want to avoid the process of seeing your hair fall out until there is none left, just shave it off and make a party out of it. Take pride in who you are and what you are. Know that you are not defined by your hair or your physical features but by your spirit and your courage. Know that you will remain the most perfect reflection of God's grace even when you feel shattered and broken. Cancer does not determine the person you are or the life you live. You defeat cancer by ensuring it knows it will not defeat you and dictate your spirit.
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well said runningcello!!!
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Runningcell
Lovely......
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ditto running cello, that lifted my spirit, as I sometimes really just feel down, don't know why, but it happens to me.
I have a Question, has anyone experienced ear popping during their chemo or hormonal therapies? It does not hurt, just pops continually and I never noticed ever before! Seems to have started about 2 weeks ago, comes and goes?
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My ears didn't pop, but the right ear would feel as though it had water in it. It was worse after a tx.
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my ears have been pooping for about a month. I thought I had a cold until other women in the March group mentioned the same thing. It's subsided a bit now so hopefully it lessens for you too.
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I had a lot of popping, or clicking, in my ears during chemo and for several months after. I even went to an ENT specialist about it, but he could find nothing wrong. It eventually went away.
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Since I started hormonal therapy, my left ear has felt a little funny. It's not popping, but it feels like it's buzzing. It doesn't interfere with my hearing; it's just a bit odd.
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Elaine that sounds like tinnitis.
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Lago,
I thought about that! I don't actually hear a sound like ringing or humming, though. It's more a ticklish sensation that feels like someone is holding a vibrating object (like electronic hair clippers) right near my ear.
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My ears ring constantly. I have to keep music on to distract me.
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Elaine - intermittent buzzing is a symptom of tinnitus. Tinnitus is associated with the chemo drugs, particularly platinum based ones.
http://www.ncbi.nlm.nih.gov/m/pubmed/20701838/
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Hi Minivan. I have generalized joint pain in my hands, wrists, shoulders, low back/hips, and legs. I can pick things up, but it's hard to open bottles or anything that requires a grip. I'm almost 12 weeks PFC, and it didn't really start until after chemo was over. My MO blames it on the taxotere. Hopefully it will get better as time goes by. I sometimes feel like an 80 year old!
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thank you Runningcello for the uplifting post I have been down the last few days my hair has been falling out a lot and I finally had it shaved today..I was told that wouldn't happen until after my 2nd treatment by my nurse navigator well she was wrong! I did have an appt with my oncologist today she said that my tumor is drastically reduced and the results are remarkable after only 1 treatment that has really lifted my spirits she said she just had a similar patient who had a tumor like mine and had surgery to remove it and they had no cancer cells left! Gives me hope I'm going through all this and will be cured..my next chemo is tomorrow not happy to go through this all over again hopefully I can stay out of the hospital this time!
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Hi Minivan & Amylsp, I am 9 months PFC and still struggle with joint pain, occasional ringing in the ears, hot flashes, weight gain - just to name a few residual SEs My last Herceptin treatment is Friday so hoping I'll see some difference afterward. Having a terrible time with my right thumb. Trigger thumb. Very painful. Using a brace to stabilize it, but doesn't appear to be getting better. My MO said it sometimes takes 2 years to get back to "normal" after treatment. At first I thought that was horrible news, now I just hope she's right and there is a bright light ahead (and it's not a train).
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