ER-, PR-, Her2+ Roll call
Comments
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Hi Nevo84,
So glad you started this website...I have been looking for women with my same type of breast cancer.HERS2+ only. Your just 2 years older then my daughter, what a wonderful thought to do this for yourself and your Mom!! How about naming us - Hers2+only sisters unit!! How is your Mom doing? I hope great...Hope to hear from you soon.
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gg111... I receive my Herceptin weekly with my Taxol. ...for twelve weeks in a row. After this I will get the Herceptin every three weeks. I will have six weeks of radiation too. I am stage three because of the lymph node involvement. When's your surgery? I had mine on sept 28th. I had a BMX with immediate DIEP flap reconstruction. 17 hours! I am very pleased with the results but worried about having rads. They said it might damage my "flaps" I will have a second surgery this fall to fix the damage..of any and to do the nipple reconstruction.
Don't apologize for the questions...thats why we are here! Ask away!0 -
Hi kdking,
Okay so you had your surgery first then starting chemo..I'm getting it now. It sounds like the same regiment I will have before and after my surgery but without any radiation. My last round of chemo should end around June20th or so then my blood count needs to be back up before surgery so probably not till sometime in July...My surgery is going to take about 5 hours...I am going to have reconstruction with a double masectomy at the same time. No flap just expanders..
Why are you having radiation also (Rads)? Didn't you have a double masectomy?
My doctors told me I would need to have radiation only if I chose a lumpectomy...
Did you have many side effects from the Taxol and Herceptin?
Thanks for letting me ask away!!
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Hi gg111
I'm so glad that this thread can help you and other sisters. My mom finished her last Herceptin about two months ago and I can say she is doing really great. I sometimes forget what we were being through last year. She is doing her normal life and spending her time with my little niece. I'm so thankful first to God and then her doctors for giving her back to our family. I love my mom and I can't imagine a day without her. Time passes and we (The diagnosed ones and their family) get used to it. I think being diagnosed with this desease is not really the end of life. Everyday new ways of treatrment is being found and you should keep your faith and believe that if you really want to live then you will. I wish a day will come and no one and no family will lose her precious mother, wife or daughter because of this desease.All of the people in the whole world should increase their knowledge in this fiels inorder to prevent them being diagnosed in later stages. Hugs to you.
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Good Morning! It is a beautiful sunny day here in Northeast Ohio!
gg111...yes, I did have a bi-lateral mastectomy. My doctors encouraged me to do so because of the Her2 and also because I am only 37 years old. That is also why they are encouraging radiation. ( rads for short). I was told that if I had four or more positive nodes that it was a must. Again..they want to treat it as aggressively as possible because of my age. I have had everything done at the Cleveland Clinic and I totally trust my docs!
As for the Taxol and Herceptin...I have done great on it! No aches and pains at all and my counts have slowly been climbing since taking the AC. I even thought I could worka few days here and there. But...after about my 8th treatment, I started gettin some pretty severe neuropathy in my hands, feet, and even my gums and lips. So..no more work. I have been on neurontin for a few weeks now and it does seem to be helping. I have also been taking L Glutamine powder thee times a day. My mom read somewhere that this also helps w neuropathy. I also started having the racing heart problem about the same time.
Nevo84...how lucky your mom is to have the support you have given her. I would do the same for mine! I hate it that I have to put her through this, but I couldn't have done it without her.( I think I put her through enough as a teenager..lol) I have two girls who are very busy and without the help from my family..they wouldn't be able to do a lot of their activities. My husband drives truck and is gone all week. You are awesome!
Well..I've blabbed enough..hope everyone has a beautiful Sunday!0 -
Kdking- I started getting neuropathy in my hands and feet about the same time you did with TH. I was told the putting my hands and feet on ice during the taxol infusion would help. I wasn't really sure about that. I did try it and found that it helped the neuropathy a lot. It took some getting used to but after the second time, I had adjusted to having my hands and feet in ice. Might be worth trying.
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Thanks yorelh...I have heard about that and my mom was all prepared to have me do it...but for some reason I didn't. I wish now I would have tried it out!
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I'm still on weekly Herceptin until June 18, but finished my AC, then weekly Taxol + Herceptin in Sept 2011. Right from the beginning of Taxol, I developed mild neuropathy in my fingers and big toes and top of left foot. My MO put me on Vit B6, neurontin, and Alpha-lipoic acid, which I still take daily, with no improvement (nor worsening) of the neuropathy.
However, I am wondering if a new symptom is related to Taxol or Herceptin, or else other drugs such as anesthesia from 3 recent surgeries: my fingers have an "intention tremor" -- I looked it up to figure out what it might be. When I hold my fingers straight out at rest, they are fine, staying still, but when I open and close them sideways, they have a definite tremor. I just noticed this since Feb, while I was in rads, but doubt that it is related to rads. Have any of you had this? I was thinking it might be more neurological damage from Taxol, but I will mention it to my MO at my appointment next week.
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Hi all, yes I too wished I had found this forum at my beginning stages of treatment, there have been many,many times I have read information or on the discussions forum thinking," I wish I had of known that when "... but also keeping in mind, all our personal experiences and treatment are so diverse in so many ways, though it is the basis of our knowledge and understanding of treatment options, questioning that maybe our Onc are missing something or not up-to-date with what ever it maybe around the Globe, I guess always refer back to the Information section on this site along with other research. Herceptin is amazing along with Herceptin TDM-1 for the ones that do not respond to original Herceptin, still in trial. I am coming up 2 years out from the beginning of Herceptin over one year and Heart function has returned to normal almost. Good-Luck ladies... Whoops I just saw I missed an entire page
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Dear kdking
Thank you for your kind reply.It is so important that you are not alone during this journey. I'm sure that your kids would do the same if they are older. I only can say think about the end of this jouney because surely there is a light at the end of this tunnel.
As an encouragement I should tell you that 2 of my mom's friends diagnosed about 14 and 11 years ago one of them stage III and the other one stage II and they are doing very well and giving my mom hope.
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gg111 - I had lumpectomy, chemo, rads and herceptin. I would have had rads whether I chose a mastectomy or not because of the size and grade of my cancer. Like you, I had the Neupogen shots for 10 days after each chemo - the Neulasta did not work for me. I had to learn to give the shots to myself though, but it wasn't that bad and much more convenient. How are you handling the Neupogen?
Just noticing we have a very similar diagnosis...
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Well hello ladies! I am just newly diagnosed (2/15/12). Had to have an excision biopsy for the diagnosis and just got done with a re-lumpectomy for clear margins and lymph node dissection. I knew before the 2nd surgery that I was ER-/PR- and HER2+. Does the amount of HER2+ you are make a difference. I really like my surgeon but every time I ask about HER2+ being more aggressive or a better chance of recurrence they just say that it is a better because they have a drug specifically targeted for it?!? That really bugs me!
I have not met with my MO yet to see what my treatment plan will be. I am doing that Monday next week so will have more information then but from what I have seen it is not a good thing.
I am a little scared/nervous! I am only 44 with no family history of any cancers. I just wanted to stop in and introduce myself. I will know more (I hope) when I talk to the MO and maybe he will be upfront about what being HER2+ means!!
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Hi mt4ever, and welcome to the club nobody wants to be in.... There is lots of information on the internet about Her2+, and a lot of it is scary and.... outdated. Herceptin is specifically targeted to HER+ tumors, and is, as my MO calls it, "a game changer". Some say it is better to have Her2+ because of Herceptin, but as far as I'm concerned, there's no such thing as a "good" cancer. You will become VERY well educated as you move forward in your journey, so there's no need right now to scare yourself before you have even seen the doctor. Hugs to you!
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Hello mt4ever! You definately came to the right place to find out about Her2! There are some very smart and well educated ladies here! Her2 is scary but with Herceptin....we now have a target drug for it! I recommend watching the movie "Living Proof" with Harry Conick jr. It tells the Herceptin story. We all know how you feel when you say your scared...there is no good age to be dx with cancer. I am 37 with small children...but it's just as scarey when your 55.(just saying). Best of luck to you as you start your journey!
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Hi everyone. I just had a core needle biopsy and an MRI - scheduled to have a lumpectomy 3/22. I go for my pre-op visit today and will hopefully have the MRI results later today.
I don't have to tell you that the waiting is the worst. Praying that I am in an early stage. I'm terrified of the aggressiveness of the Her2 +++. While most of the things I'm reading on Herceptin is so positive, I'm still scared out of my mind.
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Hi vballmom...while being Her2+++ is a scary diagnoses, a lot of the stats about it are pre Herceptin.Ive been told it works pretty darn good, so I choose to believe that! I am still in treatment and have until at least November to go with the Herceptin.
Keep us posted with your results!.0 -
The way my onc phrased it...the Herceptin is saving my life. Good enough for me!!
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My MO calls Herceptin "Holy Water". I have received 14 doses and will go until December.
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Just exactly what I need to hear today! Thanks, ladies. 0 -
Vbalmom,
I had the same diagnosis as you 5 years ago (11/06). I am NED and probably in the best physical condition I have been in since my 20's (now 61).
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Sassa - I love hearing that!
Got good news today. MRI looked clean except the known area that was biopsied. Doc says it looks well defined and nodes look clear. Had the pre-op done - my blood pressure is good and I'm all set for 3/22! Oh, I got a walk in, too.
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Great news! Hope all goes well from here on out for you!
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I just posted this "old news" on another thread where a poster was doubting that Herceptin had been tested against a placebo....
BIG 1-01 HERA
BIG 1-01 HERA is a randomised three-arm multi-centre comparison of one year
and two years of Herceptin® versus no Herceptin® in women with HER2-positive
primary breast cancer who have completed adjuvant chemotherapy.The study results demonstrated that one year treatment with trastuzumab after
adjuvant chemotherapy significantly improves disease-free survival among women
with HER2-positive breast cancer (ASCO 2005/NEJM 2005), and OS (ASCO 2006).0 -
Sassa I am glad to hear that! My facts are pretty similar to yours and all the stuff I have seen about HER2+ is a little scary and on top of that my surgeon acts like it is not that big a deal. (You take Herceptin he says). But from what I have seen the chance of recurrence is higher right?
I love all the information here!! Thanks everyone!!!
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I was diagnosed in November of 2009. Finished last Herceptin treatment February 2011.
Still here!
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Congratulations, Wyattsmom - it's always encouraging to hear from ladies who've weathered the storm. I hope you remain cancer-free forever!
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Hello everybody! I had a somewhat discouraging week. I had been having some heart issues after my last few Taxol and Herceptin tx. Every evening my heart would just start racing like crazy. So when I went in for my 11th tx..I was told no more chemo. I should be happy right?? So I had an echo the same day and found out that my heart function has decreased since my last one in Jan. so now they tell me.....no more Herceptin! That really scares me. We are going to wait six weeks and do another echo then. And we will see about starting the Herceptin back up then. I've only had 10 weekly tx and have until November to go with the Herceptin. Has anyone else experienced this?
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Kdking.
There is a Herceptin Heart Attack thread by TonLee you should look at.
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Thanks..I will look it up
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I'm ER 20-30% and PR 1%. Do I fit in here even though my ER is weak and not negative?
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