my head is spinning

Anonymous

my head is spinning

DaniCalifornia

I found my lump through self exam on 1/5/17. Got in to see the Dr. on 1/10. Mammogram, ultrasound, and core needle biopsy on 1/11. Got the call that it was cancer on 1/12. Met with surgeon on 1/17. Lumpectomy and sentinel node dissection scheduled for 1/24. They said it's IDC, 1.4 cm, ER+/PR+, HER2+. I'm fill pretty good that we have caught it early but it's the HER2+ part that is freaking me out. (well it's all freaking me out, but that one more so). Does HER2+ pretty much mean I will need to do chemo?

Lafish

Hi there, so sorry that you are going through this, I'm not her + but I'm sure others will chime in, chemo is not that bad for most, although I wouldn't want to do it again but well worth it in the long run. Just take one step at a time, so much to think about. My thoughts are with you.

LAF

ElaineTherese

Hi!

Doctors typically recommend chemo to their HER2+ patients because they initially give Herceptin (targeted treatment for HER2+ cancer) with a taxane chemo (Taxol or Taxotere). As you can see from my signature, I had Adriamycin + Cytoxan and then Taxol + Herceptin + Perjeta. Then, I had Herceptin alone, every three weeks, for a year. Before Herceptin, breast cancer patients with HER2+ BC had some of the worst outcomes. Today, thanks to targeted therapies like Herceptin and Perjeta, HER2+ patients do just as well as their HER2- counterparts.

Best wishes!

MinusTwo

Dani - neoadjuvant chemo with herceptin & maybe perjeta is now usually recommended for HER2+. Do let us know what your MO recommends. Good luck.

Reikion

Hi DaniCalifornia,

I am also HER2+, Stage1a. Prior to surgery, diagnosis was DCIS, hence no chemo was discussed. I am participating in the ATEMPT trial for HER2+ patients (TDM1 is the drug ---- herceptin + 1 molecule of Emtanzine). You should ask your doctor if that is an option for you.

Wishing you the best!

MinusTwo

Reikon - I see Dani is also ER/PR + so she has more treatment options than we did as hormone negative. Interesting about the trial.

ksolo11

I felt the same as you when I was diagnosed in October and would have done anything not to have chemo. However, I am on my 8th week of taxol/herceptin, with 4 more to go, and will continue the herceptin for the rest of the year every 3 weeks. Just know that if you are prescribed chemo - you are stronger than you think. This combination is not horrible -- I feel pretty good and haven't changed much in my life (I still exercise, work, go out with friends, etc) I am just more careful about not getting sick so I don't have to delay any treatments. Hang in there -- you will be fine. Consider yourself lucky there is such a targeted treatment for your type of cancer. Although there is no cure, her2+ has a definite antidote.

DaniCalifornia

Thank you all so much for your responses! I very much appreciate your support and information.

Ksolo11, wow that is great to hear! that gives me some hope.

Did any ofyou get sick at all during chemo in the beginning? Or lose your hair? (I know everyone responds differently)

lannama

Hi Dani,


I am going through the same thing as a HER2 positive gal. Just finished 12 weeks of Chemo/Herceptin (my drug was Navelbeen as I had a reaction to Taxol). I was quite nauseous beginning after my fifth week of the Chemo, 25 pound weight loss!! Since finishing the Chemo in early December and only having my Herceptin infusions every 3 weeks, I feel great.
On my 15th day of Radiation out of 30..no problems there. Just a bit fatigued.
Although the doc said I would not lose my hair, it thinned considerably...least of my worries.

Good luck!
Linda

ksolo11

DaniCalifornia - I've never been nauseous during my treatments, even at the beginning. I have a little numbness sensation in my fingertips that just started - maybe neuropathy, maybe the cold weather. I am eating a lot of spinach and taking a B6 vitamin. Regarding hair loss, my head started to get tingly after my 4th treatment and has been on and off since - I have shed some of my hair but have not cut it off yet. I am still able to wear it normally and am grateful for everyday I still have it. I have 4 treatments left. Good luck and feel free to ask me any questions.

Tinyfrog

I am really amazed at how how fast things have moved along for you. It's obviously a ton to process. It was 4 years from my lump detection to cancer diagnosis; so for me, I have very little faith in the testing, whether they caught it all, or whether they will catch anything in the future. So, aside from having to have chemo for HER2+, I was leaning towards doing it anyway as a precaution.

ksolo11 and lannama - Do either of you know if you got steroids in your IV just prior to taxol to help with the nausea? I'm trying to figure out for myself the cost/benefit of steroids before instigating c conversation with my MO.

ksolo11

Tinyfrog - I receive the steroid (decadron) to prevent nausea. I assume it is working since I have not felt nauseous. I also get benedryl and an antacid. I don't like the combination because the decadron and benedryl fight each other for a few hours. But I think both are important to tolerate the taxol.

Tinyfrog

Hi Ksolo11 - I very much appreciate the direct and concise response. Yes, your answer makes a lot of sense - how an "upper" and a "downer" at the same time can have consequences. It makes me think of people drinking red bull and vodka, and I've never heard that was a good thing.

I would hope that the infusion nurses have some latitude in operating with their best judgement based on some common sense, and what's happening in front of them. But I don't know if that's the case, where I'll be seen, where they have to literally follow exactly what the doctor has instructed. The infusion center is operated in a separate building than the MO. I've been in a bind this weekend, contemplating switching my MO. I had a very positive impression of her, but on Fri night I learned something that has me questioning that.

lannama

Tinyfrog, steroids were introduced at my first treatment of Taxol and Herceptin, but due to my bad reaction, my chemo drug was changed to Navelbein. Did not need steroids or Benedryl with Navelbein.

danix5

I too am a Dani - short for Daniella! I too have just been diagnosed with IDC and ILC from tissue left over from my bilateral mastectomies and hyster/oopher in 2008. Diagnosed the first time Oct 2007 with DCIS high grade in two areas. They told me I was fine followed me 5 yrs. now this Dec 2016 I found a lump at my sternum and bam back in cancer world. Surgery was the 25th waitingvon final path and lymph node status.

I have this path from biopsy HER2+ grade 3 yikes, ER+ PR - ( they are re testing the PR - which would be done anyway, but tissue was too small from biopsy to be sure)

I am angry and sad and scared!

Thank you girls for helping like always! I thought I was good to go.....

Daniell

Suburbs

Dani, sending support. Hope you have started chemo and are tolerating it well. All the best.

dani, I am grade 3 as well. It's frightening. I hear you.