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Her2 positive

fighting4five
Posts: 71
Joined: Jun 2011

Hi everyone...I was wondering if anyone here is Her2 positive and how that has effected your treatment? I am actually tripple positive. I have my first oncologist consultation on the 14th to discuss the chemo etc.My surgeon said I will have 4 chemo treatments and she thinks they will be 3 weeks apart. I have read about Herceptin and wow it scares me! I like to go into appointments with as much info as I can have so I am prepared with any questions,so any info from you all would be great.

Gob Bless
Mary

mckevnic
Posts: 71
Joined: Feb 2011

Hi Mary,

I am new to this site and have found it most helpful-I hope you do too. I was diagnosed with triple positive breast ca in Mar 2010. We are a rare group as I understand it. First let me ease your mind....don't be afraid of Herceptin...it is no big deal, really!
I will share what I went through so you will have something to base your journey on, I hope it will help. I had 2 lumps in the right breast, had a lumpectomy, a reexcision (to get clear margins), had 6 rounds (3 wks apart) of Taxotere and Carboplatin. One of the treatment options my onc offered was to add Adriomycin (sp?) but I declined because I heard nasty things about that chemical. Besides, the effectiveness of that chemo cocktail only changed by 10% over what I chose (T&C). Taxotere & Carboplatin were tolerable. I did take anti-nausea meds for a few days post chemo and they really helped. I never got sick. I lost my hair 2 weeks after 1st chemo just as the onc said.
I went WEEKLY for Herceptin infusion during the chemo timeframe. Once chemo was finished, I continued to go for Herceptin-every 3 weeks until April of this year. It is usually a 1 yr timeframe on that. Herceptin, for most if not all, has no side effects. It took about 2 hrs to get the Herceptin infusion from start to finish.
If you don't have a port, I would highly recommend getting one. You will be stuck for blood draws, weekly Herceptin, chemo, then every 3 weeks Herceptin for a long time. It's so easy with the port. Also, I am a baby with needles, so even with the port, I recommend getting a script for Emla creme. This is a numbing creme you put on the port site 1 1/2 hrs before infusion. The script says 1 hr before but I found 1 1/2 works much better) Then you feel nothing!
I got genetic testing too. Had a family history and sad to say, it was confirmed I am BRCA positive. Based on this information, it was highly recommended that I have my ovaries removed. There is a link between breast and ovarian ca and oc is difficult to detect. I had the surgery for this in Nov 2010. Not too bad, laproscopic. Now I take Arimidex every day and will for the next 5 yrs. Side effects are stiffness and that sometimes, is hard to deal with.
Not saying your journey will be the same, but at least you can compare what your onc tells you on the 14th to this. I wish you all the best! Keep posting here to let us know how you're doing.
I am 43 now with 2 teenagers (boy 17, girl 14) and I am so glad I made the choices I did. Just remember, you need to feel comfortable with whatever you decide. If it feels right for you, then it is!
Chris
ps-Oh yeah, I forgot to mention, I did have 33 daily radiation treaments after chemo.

pjvalenti02
Posts: 4
Joined: Apr 2012

I am new here too. I was diagnosed in May 2010. It was the hardest thing I have ever had to deal with. I was so proud of the fact that I worked out every day, had yearly mamograms and was very healthy. I had just had a mamo the november before so to find out i had ibc was a nightmare. but on to the 2 years that followed. i right away had a ton of tests done. most of them i never heard of. the test that affected me the most was when my oncologist walked into her office reading my file. she told me we could breath now, the cancer has not spread. i think i cried like a baby so grateful for some good news out of all of this. from there everything went so fast. i had my 6 rounds of chemo, carboplatin, taxatere and hercepton. after chemo was done that october i had a double mastectomy followed by 34 rounds of radiation. the hercepton was continued every three weeks until a year was up. honestly the radiation was soooo easy, the hercepton was also soooo easy. the only part that was a little hard was the chemo. for the first 2-3 days after each chemo i felt like i had the flu. at one point after my 5th treatment i actually ended up having to be rehydrated after almost 6 days in the bathroom. i lost around 14 lbs in those 6 days. it was such a relief to have the chemo end. i am not complaining in the least. i was just grateful that i had options to help me get rid of this horrible monster.
last summer i started having problems swollowing solid foods. of course i went into a panic thinking my cancer had come back. again more testing and everyone insisting i was fine, there was nothing wrong with my throat. i finally was sent to a thyroid specialist who gave me the option to have my thyroid out. i had some large nodules that may or may not have caused my swollowing problems. we decided to have my thyroid removed. believe it or not when the pathology report came back 10 days later they found a very small amount of cancer in one of those nodules. not related to the ibc which was a good thing i'm told.
well this past year i have started the reconstructin process. i have expanders in and have had saline fills once a week for the last month or so. i have boobs again. at the end of may they take the expanders out and put inplants in. i cannot wait for that day to come. i have to say that i'm trying to be positive. i know ibc can come back and i do worry everytime something comes up in my body that i think isn't normal, but i think that is just going to be part of the rest of my life. i know the future is very scary with this diagnosis but we have to make the best of it. i am a single parent with a 13 year old son who is my life. everyday i always think of him and how he needs me to be there for him. i am determined that i WILL be here for him to watch him grow up. if i can help someone out with any advise or answer questions please just ask. we all need support in the battle and i am here if you just need to talk or vent. god bless..... patty

pjvalenti02
Posts: 4
Joined: Apr 2012

I am new here too. I was diagnosed in May 2010. It was the hardest thing I have ever had to deal with. I was so proud of the fact that I worked out every day, had yearly mamograms and was very healthy. I had just had a mamo the november before so to find out i had ibc was a nightmare. but on to the 2 years that followed. i right away had a ton of tests done. most of them i never heard of. the test that affected me the most was when my oncologist walked into her office reading my file. she told me we could breath now, the cancer has not spread. i think i cried like a baby so grateful for some good news out of all of this. from there everything went so fast. i had my 6 rounds of chemo, carboplatin, taxatere and hercepton. after chemo was done that october i had a double mastectomy followed by 34 rounds of radiation. the hercepton was continued every three weeks until a year was up. honestly the radiation was soooo easy, the hercepton was also soooo easy. the only part that was a little hard was the chemo. for the first 2-3 days after each chemo i felt like i had the flu. at one point after my 5th treatment i actually ended up having to be rehydrated after almost 6 days in the bathroom. i lost around 14 lbs in those 6 days. it was such a relief to have the chemo end. i am not complaining in the least. i was just grateful that i had options to help me get rid of this horrible monster.
last summer i started having problems swollowing solid foods. of course i went into a panic thinking my cancer had come back. again more testing and everyone insisting i was fine, there was nothing wrong with my throat. i finally was sent to a thyroid specialist who gave me the option to have my thyroid out. i had some large nodules that may or may not have caused my swollowing problems. we decided to have my thyroid removed. believe it or not when the pathology report came back 10 days later they found a very small amount of cancer in one of those nodules. not related to the ibc which was a good thing i'm told.
well this past year i have started the reconstruction process. i have expanders in and have had saline fills once a week for the last month or so. i have boobs again. at the end of may they take the expanders out and put inplants in. i cannot wait for that day to come. i have to say that i'm trying to be positive. i know ibc can come back and i do worry everytime something comes up in my body that i think isn't normal, but i think that is just going to be part of the rest of my life. i know the future is very scary with this diagnosis but we have to make the best of it. i am a single parent with a 13 year old son who is my life. everyday i always think of him and how he needs me to be there for him. i am determined that i WILL be here for him to watch him grow up. if i can help someone out with any advise or answer questions please just ask. we all need support in the battle and i am here if you just need to talk or vent. god bless..... patty

pjvalenti02
Posts: 4
Joined: Apr 2012

I am new here too. I was diagnosed in May 2010. It was the hardest thing I have ever had to deal with. I was so proud of the fact that I worked out every day, had yearly mamograms and was very healthy. I had just had a mamo the november before so to find out i had ibc was a nightmare. but on to the 2 years that followed. i right away had a ton of tests done. most of them i never heard of. the test that affected me the most was when my oncologist walked into her office reading my file. she told me we could breath now, the cancer has not spread. i think i cried like a baby so grateful for some good news out of all of this. from there everything went so fast. i had my 6 rounds of chemo, carboplatin, taxatere and hercepton. after chemo was done that october i had a double mastectomy followed by 34 rounds of radiation. the hercepton was continued every three weeks until a year was up. honestly the radiation was soooo easy, the hercepton was also soooo easy. the only part that was a little hard was the chemo. for the first 2-3 days after each chemo i felt like i had the flu. at one point after my 5th treatment i actually ended up having to be rehydrated after almost 6 days in the bathroom. i lost around 14 lbs in those 6 days. it was such a relief to have the chemo end. i am not complaining in the least. i was just grateful that i had options to help me get rid of this horrible monster.
last summer i started having problems swollowing solid foods. of course i went into a panic thinking my cancer had come back. again more testing and everyone insisting i was fine, there was nothing wrong with my throat. i finally was sent to a thyroid specialist who gave me the option to have my thyroid out. i had some large nodules that may or may not have caused my swollowing problems. we decided to have my thyroid removed. believe it or not when the pathology report came back 10 days later they found a very small amount of cancer in one of those nodules. not related to the ibc which was a good thing i'm told.
well this past year i have started the reconstruction process. i have expanders in and have had saline fills once a week for the last month or so. i have boobs again. at the end of may they take the expanders out and put inplants in. i cannot wait for that day to come. i have to say that i'm trying to be positive. i know ibc can come back and i do worry everytime something comes up in my body that i think isn't normal, but i think that is just going to be part of the rest of my life. i know the future is very scary with this diagnosis but we have to make the best of it. i am a single parent with a 13 year old son who is my life. everyday i always think of him and how he needs me to be there for him. i am determined that i WILL be here for him to watch him grow up. if i can help someone out with any advise or answer questions please just ask. we all need support in the battle and i am here if you just need to talk or vent. god bless..... patty

tgf's picture
tgf
Posts: 955
Joined: Mar 2009

I ... like many others here ... am triple positive. I had a lumpectomy, then taxol and herceptin for 12 weeks ... then radiation ... as herceptin continued for a year. I had NO problems with herceptin. NO side effects. The only possible problem I've heard of is with the heart but they monitor that very closely.

Herceptin is considered a miracle drug for those of us who are HER2+ ... so don't be afraid of it!

hugs,
teena

debi.18's picture
debi.18
Posts: 849
Joined: Jun 2011

Hi Mary,
I also am HER2 positive, I've had a lumpectomy, node dissection and my chemo port in. I haven't started chemo yet (have to have surgery again to remove more nodes) but you'll find this site is wonderful. The support here is awesome - any questions you have will be answered.

My sister-in-law was Stage 5 when she was diagnosed 5 years ago. She was on herceptin and considers it a miracle. She is now happy and healthy with no signs of cancer. YEAH!! I'm planning on following her lead~

Best of luck to you and keep us posted.

Hugs~
Debi

VickiSam's picture
VickiSam
Posts: 8271
Joined: Aug 2009

I also am Her2 ... and opted for 1 year of Herceptin. Chemo is chemo... Herceptin is a miracle drug for 'we' Her2 breast cancer WARRIORS. My side efforts from Herceptin lessen a bit, from the Taxotere, Carbo -- however, the best new possible is that your HAIR does begin to grow back while on Herceptin. Nausea subsided towards the end of my treatments --. My chronic fatigue .. continued. Many many many WARRIORS .. have little to no side efforts from herceptin.

We are all different, and I was one of a few that suffered endless side efforts from chemo. Just me -- and my body chemistry.

Strength, Courage and Hope.

Vicki Sam

kjrpcb
Posts: 41
Joined: Jun 2010

I am also Her2+. I did loads of research and in my opinion Herceptin is a miracle drug. I completed 6 months of weekly Taxol and Herceptin on May and now I'm on the every three week herceptin booster. I will be on Herceptin forever unless I have any problems. But chemo was easy for me. No fatigue or nausea. I was able to work the entire time. But we are all so different. Imaging status post ending treatment was all normal there is no evidence of disease. I have MUGAs every three months just to make sure my heart is good. Talk to your onc and discuss your treatment plan. Best regards.

Megan M's picture
Megan M
Posts: 3001
Joined: Dec 2009

I am Her2-, but, wanted to wish you good luck.

Hugs, Megan

Bella Luna's picture
Bella Luna
Posts: 1572
Joined: Aug 2009

I was also triple positive and had two lumpectomies. I was on Herceptin for a year and did six rounds of Carboplatin and Taxotere. Ports are lifesavers and would also highly recommend getting one installed. Once I finished up with chemo treatment, I did six weeks of radiation.

It all sounds so overwhelming when you think of what lies ahead, but you will get through it. You will get over one hurdle after another until you cross the finish line! You can do it!

BMS's picture
BMS
Posts: 127
Joined: Feb 2011

Like others, I did the TCH cocktail...Taxotere, Carboplatin, Herceptin. I was supposed to do 6 rounds, one every 3 weeks, but had to stop after 4 rounds due to elevated liver enzymes. I had a lumpectomy and 11 nodes removed. Restarted chemo but changed it to 6 weekly Taxol treatments with Herceptin every 3 weeks. Stopped for good after 5 because of the same liver issues, but continued with the Herceptin every 3 weeks. I am still doing the Herceptin until my one year anniversary at the end of September. About a month after chemo ended I started 33 radiation treatments (a total breeze).

Don't be afraid of Herceptin at all. My treatments take 30 minutes with no side effects at all.

This is a great sight to be on with lots of good information and great people to help you through.

Bonnie

pinkpalette's picture
pinkpalette
Posts: 112
Joined: Jul 2011

Like many here, I too am her2+. My chemo journey starts next week. I will have the TCH combo platter - 6 rounds. The herceptin will also be administered weekly for 18 weeks, then going to every 3 weeks for one year. Add rads to that combo-special for 2 months.

I hope it will go along uneventful, just like I hope for you.

Wishing you courage and strength during your journey!

renee616's picture
renee616
Posts: 181
Joined: Apr 2011

My Dr says I'm estrogen & progesterone positive, and Her-2/neu negative 1+ ......So what does that mean?
thanks!
Renee

fighting4five
Posts: 71
Joined: Jun 2011

Hi Renee
Being estrogen & Progesterone positive means that your cancer feeds off of those hormones.Thats where the Hormone therapy comes in. I do not know a lot about it yet. I meet with my Onc. on the 14th for my consult.
Her2 negative is a good thing! Her2 positive tends to be a more aggresive cancer and requires more treatment like Herceptin infusions.
Im sorry that you are going through this,but know that you are in my prayers.

Mary

ellenquilt
Posts: 2
Joined: Jul 2011

Diagnosed in May. Lumpectomy in June and Chemo (Herceptin +Taxol) starting July 22nd. Aside from knowing that my hair will be gone (purchased a wig today and have been looking at hat patterns to knit and buy) I don't know yet how this will play out with side effects. I have 12 weeks of the H+T once a week, and then every 3 weeks. Radiation is up in the air until the BRCA tests come back. Hopefully negative. I have Afib so my cardiologist is an active member of my get well team. Good luck and hang in there.

fighting4five
Posts: 71
Joined: Jun 2011

Thank you all for the information,advice and for sharing your journeys with me. My thoughts and prayers are with you all.

Mary

mruczko
Posts: 110
Joined: Jun 2011

I was diagnosed in Oct. 2009 with HER Pos. Stage IIB Invasive carncinoma (it had spread to the lymph nodes). In 2004 I was hospitalized twice with severe cardiac arrythmia and have been on beta blockers and high blood pressure since. Was very worried about the effects of Herceptin on my heart. The oncologist scheduled regular echocardiograms to check for possible problems. I had 6 months of chemo, followed by lumpectomy, radiation, and another 6 months of Hereceptin, total 1 year. The last Herceptin was Nov. 17, 2010 As my radiologist once said - sofar-i, so good-i!
Lots and lots of hugs,
Marlene

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