My Wife Rachel Was Just Diagnosed With HER-2+ Breast Cancer (Please Help ...)

[bmorr7]

Hi everyone,

Thanks for all the help! My question for tonight is whether Herceptin is enough for Rachel or whether she also needs chemotherapy (our oncologist is recommending the Taxotere (Docetaxel), Carboplatin, and Herceptin (Trastuzumab) regimen. Would Herceptin by itself be enough?

Thank you so much.

Ben

[Andrea Barnett Budin]

Hi Benjamin,

Rachel is so lucky to have you be so well informed, and searching for answers. As for support groups, you have found the best!

So sorry you and Rachel have to deal with this, but you will go one step at a time, gather information and opinions (at least 2, I had 4 -- each brilliant but w/a slightly different perspective, which served to add to our ability to make decisions vs confuse us).

Not clear why onc didn't go wide around the margins with first surgery. I thought that was standard.

Not sure why onc chose double mastectomy. My 4th stage invasive lobular carcinoma (9 cm) -- in 1995 -- recurred 3 yrs later throughout my liver.

I would say you need more input from addl oncs before moving forward, in my opinion. You can read my stats in my signature.

In '95 they didn't check for HER2, in was still in clinical trials. I didn't have the advantage of getting on Herceptin from the getgo -- which is wonderful! In '98 (Aug) my husband and I had kept up on bc news and asked for the HER2 test. I was 80% positive. ER/PR borderline. Now ER/PR-... The FDA fast-tracked Herceptin out of clinical trials on September 29, 1998 -- which was most fortunate for me (then available on for metastatic bc).

In '98 I was Taxotere for 8 wks, had scans to make sure it was doing its' job, then added Herceptin. Did Taxotere for 9 mnths. 6 weeks on, 2 wks off -- in '98. Couldn't handle anymore. Took Herceptin for -- 10 yrs. Been off for 5 yrs. I agree that TH has less toxicity. Taxotere is a freight train of a drug, which I chose (having 3 opinions at the time recommending 3 different chemos -- I chose Taxotere because it was the most powerful weapon they had in their arsenal. 4th stage lobular and HER2+ is highly aggressive, and I felt rather than take easier roads, I needed to fight fire with fire. Never had the Carboplatnum (?sp).

I had a port ('95-'97), then had it removed. With recurrence, I immediately put in a port, knowing how tough my veins are and that I could only use my right arm. It was a blessing. Easy access. I kept that port for 12 yrs. Had it removed in 2010. It was in the bra line on my right side, because mastectomy was on left. I would consider putting in a power port -- you could check with StephN I think re that. Believe that's what she had. Was sorry it wasn't around when I got my portecatheter. Advantages with the power port I seem to recall. Check that out... Neck? I feel resistant to that...

I know someone who was in the initial clinical trials. In the '90s. She couldn't handle the chemo and only had Herceptin
-- and she is still here!!! For 4th stage I was told studies were indicating Taxotere and Herceptin. Your situation is different. But the lady who I was just speaking of was also Stage 4 and has done well.

Attitude is 90%. I began a spiritual journey. I went to an integrative oncologist in Manhattan who specializes in supplements. I have been on them since "98 - every single day, twice a day. A project. A commitment. I believe it is a large part of why I am still here. It helps keep me alive. Helped me get through rigorous chemo regimen (developed shingles from compromised immune system and couldn't get chemo till I was over it). That was terrifying, cause I clearly needed chemo to live! I got rid of it in 10 days. Vs. mnths and even yrs. Supplements helped that plus I caught it right off. Seeing so many oncs -- a burden traipsing all over the place, but so well worth it in so many ways.

I meditate every day. I use mantras. I believe in the mindbody connection and the power of our thoughts to help us heal.

I have a few threads around you might want to check out here.

Don't mean to hit you with too much, but do so want to help and inspire you.

If you have more questions, and you will, please ask. We are all here to help. We are a family.

My heart goes out to you and Rachel. It's a lot, but my attitude from right off was, I want to live, I want to be here, and I will do whatever it takes to get to wellness. I was in a process and there would be a light at the end of the tunnel. Stay strong, hug your wife, tell her she is beautiful just the way she is...

My husband went to every chemo tx, every test, every doc w/me. His support and love lifted me up and helped me be brave and determined.

I have a good feeling about you two. You seem to have what it takes.

I know it's head spinning, surreal, etc. Suddenly you have a whole new vocabulary and know more than you ever wanted to about bc. But you are still functioning well and doing your job as a loving husband. Good for you. Good for Rachel! You seem to be doing everything humanly possible to get Rachel through this with informed decisions based on instincts and the willingness to trek around looking for answers -- finding some questions along the way that make you think of things you haven't yet considered. Best of luck in your journey. It will bring you and Rachel closer than ever. That's how it worked for Paul and me.

Stay close and ask away, Benjamin.

[carolanno]

benjamin,

yes, to your question about TH vs. TCH study.