When do most recurrences for HER2 happen
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Hi everybody! Here I am 5 month after my last chemo (2 since radiation) enjoying my hair growth! I am focusing in going on with my life and try not to read that much about BC (just the hair thread
. But this one caught my atention since you all seem so informed!! So here is my question: I was diagnosed last July at 37 while pregnant with my first baby. No PET scan or testing before surgery because of the pregnancy. I had lumpectomy and was surprise to find 11 positive limph nodes since the doc was sure it was Stage 2 (I told her I had the lump for 3 years and that I had been misdiagnosed). After 4xAC I delivered my beautiful baby girl. Then 4 Taxol plus herceptin and radiation, had some testing and found I had BCRA mutation (can't remember if 1 or 2). I am ER +(80% moderate intensity) and PR+70% strong intensity) and Grade 3. I'll be on Tamoxifen for 5 years.I was so shocked by it all that did not ask nor thought much about prognosis, recurance chances, etc. just wanted to keep myself as healthy as posible while my baby was growing inside and then taking care of her after she was born (prematurely). But now that things have calmed down I can't stop thinking about these issues and I am terrified. I had a PET scan and MRI after my last chemo in January and everything was fine. My oncologist wants me to have another PET this month. I want to talk to her in my next visit about prognosis and recurance so I though you could maybe help me think good questions to ask (little sleep with my newborn plus all the anxiaty sometimes makes it difficult to think clear!). Thank you!
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CarolHi Your age and BRCA+ plays a big part in this. With BRCA you have an increased chance of a new breast cancer (I assumed you did lumpectomy only) and ovarian cancer. I hope this was discussed with you. There is great information here that might help you form questions. The link even discusses options (point 11) if you are BRCA+:
http://www.cancer.gov/cancertopics/factsheet/Risk/BRCAThe recurrence issue had more to do with your current diagnosis. I might ask about the Neratinib Clinical Trial. I believe you are eligible. You can find the thread about it here: Neratinib Thread
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Thank you so much! at the time of the surgery they though it would be too traumatic to do a mastectomy, etc while pregnant and I guess since they did not know I was BRCA + nor the # of nodes involved that seemed like the better option. My doc did talked to me before I started radiation and wanted to be sure that I understood that I would not be a good candidate for mastectomy after radiation because reconstraction is much more dificult after you have all the scar tissue\. She said it was up to me to have a mastectomy instead of radiation but implied that she thought it was better to just do MRI regularly. They did recomend I had a ooh before 40. Thank you very much for the trial information. I'll be sure to ask about it!!
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I asked my onco about the Neratinib trial when I completed Herceptin. Due to being node negative, I didn't qualify for it.
My treatment place is also doing other trials with Neratinib as a First line of treatment along with Taxol. I actually have a co-worker who was diagnosed in December 2010 who is in that trial. She is ER -, PR -, HER 2+++, no TCH combo just Taxol and Neratinib. She gets Taxol every week for 3 weeks, then a week off, does this for 6 months, and does the Neratinib for one year. It is working as she went from 7 cm to 2 cm after 4 months. Interesting the advances they keep making in HER2 treatment.
Still working throught the brittle nail issues, but it seems to be getting better as the weeks go by.
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StLouisCardsFan -- buy/try Nailtique -- it does wonders for strengthening nails. Available in drug stores.
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I will do that - thanks Lilah!
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I'm a year out of chemo and six months past herceptin, and my nails still fall apart if I touch anything.
And, I have a frozen shoulder so I can't comb my now lush hair.Just want to share an experience. I bloated up significantly a few weeks ago. Gained five pounds in those three weeks, which considering I weighed 102 at my last appointment, is a lot for me. I went up two pants sizes. My onc was very concerned and the first thing he said was "You are HER2 and this is very frightening." He ordered an abdominal CT, even though I'd had one six months ago.
So, even with herceptin, HER2 means something. Herceptin works beautifully, but there are still some people it doesn't work for.
Oh, and he also said it was probably middle aged spread or hormonal - we are just checking.
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Cool Breeze - I do hope the abdominal CT was clear!
I also have frozen shoulder issues. Currently doing physical therapy, and also have gotten a cortisone injection in the joint. That really helped me.
I had ooph to, and have noticed the stomach area is a litte bigger that it used to be (read that as fatter!). I have been working out and dieting to get back in shape. Very slow going!!
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So stlcardsfan - Your colleague gets no Herceptin - only Taxol and Neratinib?? That sounds awfully scary since as far as I know, it's still an experimental drug. I was in the trial from Jan 2010 - Jan 2011 - they were still accepting node negative when I got in.
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Wow Ann -- I hope it is nothing!
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CoolBreeze,
I had frozen shoulder prior to ever being diagnosed with BC and it was the most excruciating painful months of my life! In fact, i had it in both shoulders, left first, then right. I probably shouldn't have even been driving. Then, one day, the pain vanished and I had nearly full range of motion again. It was weird.
I hope the CT scan is clear, which is most likely since you had a clear one six months ago. I'm not an expert, but i've been reading these boards religiously and I don't ever recall reading about abdominal bloating as being a symptom of any kind of mets. I sincerely hope it stays that way!0 -
I just came across this thread tonight and it's so timely! I just started the Neuratinib trial today and before I took those 6 little pills, I wanted one more explanation from my doctor why it was important in my case. What he said--unless I completely misheard him--was somewhat new.
He said when Her2 ++ cancers come back (recur) they are usually lethal. So while a bc recurrence in some women is "just" a recurrence, in Her2++ women a recurrence changes the game. Since I'm still considered "young" at 42, I should do the trial because they still want to throw everything they can at it.
Has anyone else heard this about the recurrence in Her2+ women being more "lethal"? Shortly after diagnosis, I stopped my consulting practice and now that treatments and recon are done, I am looking for work. These recurrence numbers are heartening (3-5 years on average) but boy would it stink to start a new job and then get a recurrence!
BTW: I am ER/PR +, Her 2+, had Grade 3 tumor, 6 x TCH, monthly zolodex and daily Tamoxifen, now Neuratinib.
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Geminihalf I have read that any recurrence that causes mets within the 2 year mark tends to be more serious than a recurrence that happens after 5 years. HER2+ in general is more aggressive so that makes sense.
At least your eligible for the trial. I was/am highly HEr2+ but because I have no nodes I can't be in the trial. Not sure if I'm happy because no nodes or disappointed because no trial. Never a win/win with this disease it there? I too had 6x TCH, still doing the full year of Herceptin and also Anastrozole.
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Good Morning All, My onc worked me in Tuesday and I'll start chemo on the 20th. Giving my lumpectomy incision more time and doing an MRI in the meantime. He says I will take the EC + T regimen. I have had some people ask if that is the "Red Devil" and have no clue. Anyone do this? I'll take the EC for 4 rounds every 3 weeks. He said if I show really good tolerance he may move to every 2 for the last couple. Then the same for the Taxol or Taxere (hasn't quite decided which one yet). Then Herceptin for a year. He did say my greatest chance of recurrence with my diagnosis was in the first couple years, but since I'll be under a close watch he made me feel very comfortable with this.
Also, I am scheduled to fly to a 3 day meeting on June 6th - this will be 2 weeks after my first treatment....any thoughts??? Short flight - Birmingham to Orlando. Thanks!
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mik - red devil is adriamycin I think. The E is similar to adriamycin but I don't know if it is red.0
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Mika- I have flown a couple times since starting treatment. Make sure u get a sleeve to wear to help prevent le. Other than that, I washed my hands alot!!!
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Geminihalf:
I can understand what your oncologist meant by the HER2+ recurrences being lethal. Because I have had mastectomies, if I recur, I will probably have metastases and be stage 4. No one gets out of stage 4 alive.
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Thanks for your thoughts. Boy, you are right. Never a clear "win/win" with BC. Take good care, Jenny
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Thank you. Yeah, I've had a mastectomy on the left side so there's always that risk on the right but I know what you mean. Chances are if it comes back it won't be in the breast. Fingers crossed!
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Suemed8749 - yep, no Herceptin. The Neratinib is in place of the Herceptin. There are several trials going on right now with Neratinib at the place that I received treatment. It is a very well know teaching hospital in the St. Louis area and has a really good oncology department.
I too was surprised that there was no Herceptin for her. But the Neratinib is doing its thing and melting away her mass.
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STL Cards fan: I think we're getting treatment at the same place!
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Geminihalf - are you getting treated in St. Louis?0
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Yes treated in StL where I grew up
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Geminihalf - just sent you a pm.
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stlcardsfan: That is exciting! The early results from Neratinib must be be pretty amazing if they're willing to replace Herceptin with it. Boy, now I REALLY wish I'd gotten the nasty gastrointestinal side effects when I was in the trial - I figure no diarrhea = placebo. Only time in my life that I kept wishing for the runs!
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Hi- who is renowned expert on Her2? Mine was pos on core biopsy, neg on fish, equivocal on surgical path. My oncotype just came back at 35, and I'm trying to find out how much of that is the equivocal her2. Can you be a little her2?
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asmd did they do the FISH test? If not they should send it oiut again for the FISH test. It's more accurate. Here' some more information reagrding equivocal for you: http://www.faslodex.net/77740?itemId=36798580
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Iago she wrote that it was neg for the fish test.
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Negative on FISH for biopsy so I guess eqivocal on path from surgery. sounds like she might have the test repeated.
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