ER-, PR-, Her2+ Roll call

New here, new to cancer.  I never thought it could happen to I never bothered to educate myself. 

I am certainly getting a crash course now.  I was Dx's on 5/1 and had a mastectomy on Tuesday 5/14  ---I feel GREAT. I have a little bit of numbness but have ZERO pain and full range of motion.  Monday, I have follow up with my surgeon and learn who my oncologist is.  I'm hoping my pathology report will be back by then too as I am anxious to hear what treatment will be and how long it will take.  Waiting is very difficult for me, I'm impatient on a good day.  Also, I am uninsured so there is a bit of anxiety related to how I am going to pay for treatment, keep working and keep my household functioning. I'm looking forward to hearing from women who have smoothed this bumpy road ahead of me.  God Bless you and guide us all down a path to restored health.

49 y/o diagnosed diagnosed today with IDC ER-,PR-,HER2+  I don't know exactly what all of this means because the Dr. called me on the phone and told me that I have BC. I didn't hear anything after that (due to shock).  However, I ran and got a report and this is how I know what I am.  I'm just reading this hoping to find out more information.

I'm going to receive Taxol+Herceptin weekly for 12 weeks... then Herceptin only once every three weeks to complete the full year of Herceptin.

So, the 7 hour infusion is the Taxol+Herceptin combo? I'm confused.

Also confused about nail issues. My MO said the nail issues were with Taxotere not Taxol.  Is there a link or a thread here where I can read about it? Does everyone lose nails? or is it discoloration? or both?

Just came to check in.  Saturday 5/18, was my last chemo treatment (hopefully for my lifetime) 4 years ago.  More important 4 years ago on 5/18 was when my 3 year old turned 4, this year he turned 8.  I look forward to many more years celebrating his birthday.

6Cats, sorry for the confusion. I have a slightly different schedule than you for the TH. If I understand correctly (and I'm not sure I have all the details exactly right), I have the TH every two weeks for 4 treatments (8 weeks). In between the TH treatments, I will have only the Herceptin. The TH together is what takes the long infusion. The premeds alone are over 2 hours. The Herceptin alone is shorter. So the first week it is TH, then the next week only the H, then week three back to the TH, then week for only H. 

After the first 2 months, I will be having the Herceptin only every 3 weeks. I think they are reducing the amount of Herceptin to a 1/3 dose to even it out for the first 2 months. After that, I expect the 3-week dose will be higher. 

MichelleRN, I would be interested in knowing what websites your MO recommended. 

Jaimieh, congratulations on the anniversary. It's good to hear you are doing well.

SueMed, it's good to hear that nail death is not inevitable. I hope 6Cats is right about the Taxane being what causes nail changes, not the Taxol. I haven't seen any clear statement of this, so 6Cats, if you have, let me know.

I think a lot of it is individual reactions. I just which I knew if it would be worth chilling my nails for over 3 hours to avoid the possible pain of nails coming out over several months. At this point, I don't see how it would be practical anyway. I expect I'll do what I've been doing with the AC: holding my water bottle filled with ice water as much as possible, just in case. 

My breast surgeon recommended I visit the Komen and Mayo clinic website.  I also found this one on my own and found a lot of valuable information.

PamelaKay-Yes my first treatment was 1.5 hours for a loading dose of Herceptin about 700 mg. Now that I am only on the Herceptin, it is only 30 minutes of Herceptin, around 400 mg. I am on the 3 week regimen. I am not sure of the taxol dose, but it took 1.5 hours. I also had a regimen of steroids, don't remember the dose, but it took about an hour to infuse. My BP was checked every 15 minutes during the Herceptin infusion. Also my TH infusion was weekly. I lost my two big toenails and have had discoloration and weakening in all of my nails. My regimen started with AC every three weeks for three months. The nail issues started during the AC regimen but continued thru the TH. Only after suspending the taxol because of extreme neuropathy have my nails begun to recover.



I hope this helps you.

Chiming in with only ONE treatment of Herceptin to go! This has been one hell of a ride! I had no nail side effects other than some nail soreness on Taxol. I didn't lose any nails or have any trouble wearing my peep toe heels. I'm praying this treatment has all saved my life as I'm ready to set out on a new adventure beyond all my hours at the Cancer Center!!

I got my treatment plan yesterday!  The wait to get meet my MO and form a game plan was more excruciating than waiting for my path reports.

Today, MUGA, MRI. Monday Chemo class. Wed consult with BS for a port. Friday, MO to go over diagnostics. Mon or Tuesday Port in under general anesthesia. Friday, CHEMO! Taxere, Carboplatin and Herceptin infusion (6 hours) q21d x6 txs. Start radiation 33 tx daily M-F for six weeks concurrent with additional Herceptin infusion (2h) q21d for 5 additional txs. Quarterly MUGA, PET, MRI scans. Because it cannot be determined if the DCIS I have is a separate cancer event (it is focally positive <1% for ER) or if it's what my IDC looked like before it went nuts and eradicated ER (highly unlikely but not implausible), I will take oral Tamoxifen for five years to protect my other breast.

MaineRottweilers -- what a blessing to finally have a treatment plan! Somehow it seemed to make thing a little less of a roller-coaster just to know what was next. And thank you for your post. I too, had focally positive DCIS, but they did no additional testing on it. I now know to ask my MO some additional questions next time I see her.

You've got a busy next few days... keep us posted on how you're doing.

Hi ladies I was diagnosed 3 years ago this month yea for moving on! I have a question for the ladies 2 or more years out and her2 + only. I am 47 and wondering if any one else got their monthly back after chemo? I got mine back a year after finishing chemo granted its not every month but sometime when I get it it last a month or more. Wondering if this is normal and how long I will keep getting it. I swear my Onc. told me I wouldn't get it after chemo, go figure the one plus for having chemo and it doesn't work for me

IowaSue,

I was 56 when I finished chemo and I hoped that I would finally be thrown into post-menopausal status.

No such luck.  Three months after AC but still on herceptin, the period came back.

My oncologist said I had cast iron ovaries.  It took me another two years to finally be done with the period.

Thanks ladies it must be fairly common. I thought about going to the gynecologist but I know he would tell me again I could have it all removed and solve the problem he has told me this before. So I guess Ill just keep putting up with random long monthlies.

Has anyone had a drug reactin to Herceptin?  I broke with a horrible rash 11 days after my first infusion.  MO is certain that it is from the Herceptin.  We plan on doing skin testing and desensitizing so I can continue to use it as I am HER2/neu +++ .  I'm just looking for anyone with relevant experience. Thanks in advance.

We're going to do some experimenting along those lines but this was a pretty dramatic rash.  It covers 80% of my body with raised pustules.  It's not terribly uncomfortable  or itchy, the swelling and welting (rash over rash in patches rather than just single blisters) was the worst part and in now well controlled by prednisone.  Whalloping 80mg the first two days.  It's beginning to fade some now as I taper the dose.  Hoping that we get something figured out.  I'm due my next infusion on Friday, next week.