Anyone on Herceptin and Abraxane?

[duckface]

Hi, I'm new here! I had my first round on 5/22/08. My hair is falling out in gobs (it is shoulder length) so my husband is supposed to give me a short buzz. I have experienced a lot of bone and joint pain with the Abraxane. I go next Thursday for my next round.

My cancer is a recurrence. I was first diagnosed in 3/06 and had Adriamycin/Cytoxan to shrink the tumor so I could have a lumpectomy. I had a re-excision lumpectomy as the margins weren't clear, then six weeks of radiation.

My digital mammogram on 2/29/08 showed suspicious calcifications. I "knew" then it was back but the biopsy on 4/2/08 confirmed invasive ductal carcinoma and I had a mastectomy on 5/2/08.

This time the path showed Her2 positive. Last time it was negative. They both were ER+, PR-. First one was 3.8 cm. This one was 1.8 cm.

Thanks for reading. My husband is very angry and disappointed that I had a recurrence basically in less than two years. It sometimes is hard to keep the faith.

Therese

[Jackie07]

It's very easy to have recurrence when you (we) are Her2 positive. Because the cancer tends to grow much faster than the other Her2 negative types, it is hard for the surgeon to get a clean margin - even when they thought they had gotten one - as was in my case. I am almost ready to send e-mails to the breast cancer surgeon organization asking them to change the standard of procedure when dealing with Her2 + breast cancer.

It is torturing when cancer came back. But we had fought it once, we can fight it again - this time with new weapon, new stratege, new resolve, and new spirit!

[Jackie07]

Teresa,

You might also want to repost it to the Newcomer's thread, so more people can see it, welcome you, and answer your question.

[duckface]

Hi Jackie,

My first cancer was Her2 negative. I don't know how many women who are Her2 negative have recurrences that are Her2 positive. The chemo nurse said it was rather unusual.

I realize a lot of you here have been through much more than I. It's just all kind of frustrating and pain the butt!

Thanks for responding.

Therese

[doh2pa]

Hi Therese,

I'm so sorry to hear about your recurrence. It seems to me that a lot of recurrences happen within the first 2 years - mine was at about 18 months.

I am also on Herceptin and Abraxane (along with Carboplatin - yuk!). I get the full shabang once a month and then 2 weeks with just Herceptin and Abraxane (then 1 glorious week off - hooray!) I do get a small amount of bone pain for the first 24 hours after. I can control it with Tylenol and sometimes a Percoset, if it happens around bedtime. Are you taking anything to control the pain?

[duckface]

Hi Donna,

During the day I take generic Aleve. I called the oncology center to speak to the nurse and she told me Abraxane isn't known to cause joint pain but to go ahead and try the Aleve. At night I take Percocet if the pain is really bad but that stuff binds me a lot.

The literature they gave me on Abraxane clearly states joint/muscle pain is a side affect. I haven't had any neuropathy in my hands or feet yet, but I have only had one round. I get the Abraxane and Herceptin every three weeks but I don't know how my treatments of Abraxane I will receive.

Thanks Donna for responding. The Her2 positive situation is an entirely different ballgame.

What does Her2++ mean???? Mine was 2.8.

Therese

[chrisy]

Hi Therese,

Yep, I know you must be feeling angry, frustrated, cheated by this recurrence. It does make it hard to "keep the faith" as you say.

Interesting that it is now Her2++ when the original tumor was negative. Her2 positivity CAN change, so it could be a recurrence or possibly a new primary. Not that that would make it any better...

The good news is that with Her2+ cancer, the prognosis is actually now better than for Her2- in some settings. And there was just data released from a trial of Abraxane and Herceptin that is very encouraging.

As you know, chemo is no picnic, but Herceptin is such a great drug that has really changed the picture for that type of cancer. You can, and should, find out as much as you can about the type of cancer you are dealing with - but be very aware that the situation has changed - like 180 degrees - with Herceptin, and much of what is "out there" is old news.

I guess I'm trying to say, don't be discouraged by doom and gloom stats about Her2+ disease because it's different now.

Her2+++ means that the cancer you have has too many copies of a protein called Her2neu. This is called "overexpression". Her2neu is a growth factor which is present at base levels in healthy cells, and signals when the cell is to reproduce. But in cancer cells where Her2 is overexpressed, it basically is signalling the cells to go reproduce like crazy. Herceptin interferes with this signaling by locking onto the Her2 receptor and in effect, turning it off.

Hang in there, you will do well on the Abraxane and Herceptin, and assuming you continue on Herceptin alone you will find THAT very tolerable (and you're hair will grow back!)

[duckface]

Hi Chrisy,

I've read quite a bit about my cancer(s). I have all of the operative reports and path reports from all of my surgeries. I work for a hospital too. When I was first diagnosed in 2006 by core needle biopsy the path read invasive lobular carcinoma. When I had my lumpectomy the path read invasive ductal carcinoma. I was always confused by that... The path report from my mastectomy last month was much more detailed, with my Nottingham score, etc. My sentinel node biopsies from both surgeries were negative.

I lost my hair two years ago with the adriamycin/cytoxan regime. I know it will grow back. It grew back curly, was totally ash gray in color, and SOO thick.

Everything I've read about Herceptin has been pretty impressive. Unfortunately, when I saw my oncologist last he actually had to come in early to see me as he was booked solid and his main objective was to set me up for chemo and not answer questions. I will have my list ready for when I see him next week, before my next chemo treatment.

Thanks Chrisy and all of you for being here. I did have genetic testing last fall after my brother was diagnosed with breast cancer and had positive nodes, but it came back negative. My dad's mother died of breast cancer when she was 46 and so did her sister.

I don't mean to be so down and out. I just don't have a lot of people to talk to. You guys really help. Thanks for sharing!!

Therese

[chrisy]

Hi Therese,

Yeah, I remember when my hair started to grow back - I couldn't keep my hands off it! It felt so soft and curly! I know you know it will grow back...just didn't know you were aware it will grow back while you are on Herceptin alone.

Don't feel bad about feeling bad about any of this. It totally sucks. We all know that, and are here for you, for each other, whenever...

[Mary Anne in TX]

Hi Theresa! wish that you didn't need us right now, but so glad that you discovered the site. You have every right to be frustrated with the recurrance. It's the pits. But you're on track for good things to happen. You can see by my signature what I have taken, and that I am now on herceptin alone and continue to work to stay on herceptin til something new appears that trumps the BIG H! I call what I get by taking herceptin "a creakidy body". I am stiff and achy much of the time. I find that it helps to walk a lot and do things that "stretch me out"! Ummm, sounds a lot like work! But it does help a lot. I find that it helps me to remember that I'm madder at cancer's sneeky ways than at my achy joints. Hope your hair comes back fun and wavy and just like you like it! Best wishes, ma

[duckface]

I guess I should get my butt out and start walking. I feel pretty good today and it's sunny. Gotta put on my sunblock for sure!! Hubby won't walk with me anymore because I am so slow. My dog gets mad when I leave him but he thinks walk=poop so I have to pick up at least five piles a mile!

I'm glad I joined this group. You've all been very helpful and kind.

Well, back to work now.

Thanks, Therese