1st timer - I'm 30 (was 2a) and now I'm 4 - SO SCARED!

julierene · 12-30-2005, 11:15 AM

At 28 years old and 9 months pregnant, I was dx with 2.0 cm IDC, grade 3, er-/pr-, her2 +++ in January 2004. I had a healthy baby boy, a double mastoctomy that also revealed er+/pr- DCIS in other breast, and 4 rounds of AC. I begged my onc for Taxotere, and he hesitated so much that with no nodes positive, he didn't feel it was a good idea. But 6 months later, he called and told me I could now have it. So in August 2004, I took 4 rounds of Taxotere. I even had my ovaries removed.

Everything seemed to be going ok until around end of August 2005, and my back started hurting. I had just started a new job and was sitting at the computer all day, so I figured my back was not used to the strain. I had to visit a chiropractor about 4 years ago, for the same problems... But anyway, my onc didn't seem concerned. I had a clear bone scan in December of 2004. I went to my PCP by October and she gave me muscle relaxers and did some x-rays and blood work that looked good. By November 05, I went to a chiropractor again who used the clicky thing, very easy on the bones. And it seemed to be helpful. But by December, I thought this had been too long and I told my onc I wanted a bone scan. So on in early December, I had a hot spot on my back and another one on my hip joint. MRI showed 3 areas on my back. Then PET showed 1 on my femural neck bone, and several more in my liver! I had to really push my onc for a brain MRI to rule out brain mets. That's next Friday...

But so far, I have had rads to the big spot on my spine, and my femur bone. I am on Taxol + Paraplatin + Herceptin + Zometa. My first treatment was a little scary. I hurt so bad in my liver area I could hardly talk without wincing from the pain of the movement of my breathing. I had cold sweats, and when I bent over, there was so much pain in my head, I thought I was going to be dead in less than a month if this was from the mets.

I was concerned when I asked him out much Herceptin I got. He put me on the 4mg for the 1st dose, then only 2mg after that each week. It doesn't seem like enough... Yet, the 2nd dose was so much easier. I still felt a little cramping in my liver area. And I have had a 3rd dose yesterday, and still I feel a little cramping. Thing is... the cramping goes away after a couple of days. I know my mets aren't huge, but it still seems like since I have so many, that I should be getting the higher doses like I see posted on this board. What should I do?

1 more question... Do you gals notice that Herceptin is lengthening the life span of women who are her2+++? I really hate the thought of that 16% 5-year statistic. I'm only 30 and I am married with 3 young children.

sarah · 12-30-2005, 01:10 PM

Get a second opinion. Find out who's the best onc in your area or near enough to travel to and see him as fast as you can. If 2 different oncs suggest the same therapy, you'll know you're on the right course. I know consulting an onc friend in LA and having a top one in France that both (without each other's knowledge) chose the same course of action, helped me feel confident. Keep fighting for the best treatment. Stay strong, stay positive.

Sarah

Barbara H. · 12-30-2005, 01:16 PM

Hi Julierene,
No one can predict how you will respond to treatment, nor can we predict the future. However, there are many young women that post to this site, and are doing very well, and have been on Herceptin a long time. I'm sure that they will write to you. Herceptin has been working for me by itself since July 04. I had it in my lungs, liver, brain, and through out with the exception of my bones. My markers are now normal, and Herceptin alone has seemed to work. Of course, I don't know how long it will continue to work, but I have more hope than I had a year and a half ago. You will receive a lot of hope and encouragement, and wisdom form this site. You have come to the best support group.
Best wishes to you and your family and all the best in 2006!!!!
Barbara H.

tammymarie1971 · 12-30-2005, 02:33 PM

Oh...I just ache for you..I too was pregnant with #4 child and dx'd at 6mos. I was 30. That was Dec'01...I did ac chemo mastectomy and rads and tamoxifen. Then liver lesion found Mar'04 I did 3 rounds taxol/herceptin. I had a liver resection and then another 3 rounds of taxol/herceptin. I remember that 16% WELL!!!! There are several women around that have had their liver mets dissappear like magic so don't give up HOPE. My liver is clear now since Aug'04. Although I am dealing with bone mets to spine & hip as well I just had radiation this morning for three spots...This is all very doable..Hopefully Gina will see your post she is very knowlegdable when it comes to this stuff!!! Gina Popp is her name maybe you can post to her and see what she says..She really does know her stuff. There are alot of women here who do!!! YOU CAN DO THIS!!! I know how scary it all is at first, and how much it hurts to look at your kids and think that you won't see them grow up...but chances are you WILL LIVE TO SEE THEM GROW UP!! Those statistics were written before herceptin and all the other now things out there..This is a chronic condition and it doesn't have to be fatal!!
((((BIG)))) ((((HUGS)))) to you and your family.
Tammy

julierene · 12-30-2005, 03:01 PM

Thank you for your responses!

I got a 2nd opinion from a nurse who works at MD Anderson and she said this was a VERY good treatment. So I don't 2nd guess any of that. I just was worried that the 4mg dose wasn't enough. Although, with the extreme amount of liver cramps, I am a little afraid to have another dose that large - to be honest. It made me breathe shallow for 2 days, loaded on pain meds!

Anyway, Thanks again! I am sure I will be chatting here often.

athena453 · 12-30-2005, 09:05 PM

Hi Julierene-

athena453 · 12-30-2005, 09:08 PM

oops..I am one of the younger women here. I don't have mets, but I was dx with some pretty aggressive stats. Huge tumor, ER/PR-, Her2+++ 5.16 FISH, 30/34 nodes. I had AC followed by TCH as adjuvant chemo. I am currently on rad tx 17/30 or so.

I don't have any babies, but would love to one day. I do have two beautiful kitties, one recently adopted stray!

lu ann · 12-31-2005, 12:37 AM

Your story is so similar to mine. I was dx. 14 years ago with stage 1 at age 35 when my baby was 8 months old. All was well for 14 years, then I started having severe backaches. Like you I was on the computer and thought it was from the strain of sitting for long periods of time. I finally went to see a spine and pain doc. who ex-rayed my back and found a compression fracture. I was sent for a bone scan. My spine, mediastynime, and pelvis lit up. I went to Cancer Treatment Centers of America in northern Illinois for a second opinion and ended up staying for 6 weeks to get rad. tx. I returned home for chemo. I was on taxol, carboplatin, and herceptin 3 weeks on/ 1off and zometa monthly. This combo knocked the markers well within the normal range. It has been 2 years and although I have not achieved remission, and I am still on chemo, herceptin, and zometa, I am living a good quality of life. I have gone through so many emotions dealing with this, but I have to say that these people on this board have given me so much to look forward to. We are all going to die someday, it is inevitable. But it doesn't have to be today and I'm not going to stop living waiting for it to happen. I know how hard it is for you having young children and fighting this disease. Just keep the faith and don't hesitate to ask questions and get all the opinions necessary to get the right treatment for you. God Bless You. Lu Ann.

RobinP · 12-31-2005, 08:10 AM

Hi,

I just wanted to add that I am praying for you as well. Also, if you have breast cancer in your brain and central nervous system, you may want to look into the Lapatinib trail that newly came out by GlascoSmithKline. Lapatinib has had some excellent results for her2+ breast cancer treatment. See post by Nicola for more information on this trail and visit GlascoSmithKline website or the NCI. Blessings.

StephN · 12-31-2005, 01:11 PM

Hello Julierene -
Taxotere did not work for me either. I am much older than you, but had very similar tumor pathology only with 8 of 18 nodes positive. Within 6 months of getting off chemo (also had the rads), I had a liver full of tumors and starting into my bones.
It seems to me that you are on a good group of treatments. I took Taxol, Navelbine and Herceptin to get to remission which happened after about 7 months of weekly treatments. After getting off the chemos I have maintained on Herceptin and Zometa for over 3.5 years. No chemos, and only a relapse to my brain where I had 2 tumors treated (so far successfully) with Gamma Knife last January.

So, to answer you question, there are many of us here who have beat the mets and manage pretty well on Herceptin. Sometimes we have something crop up that we have to fight off again, but that CAN be done. You need to understand that the drugs work in concert with each other attacking the cancer cells in different ways - mostly in process of dividing. One drug can't overshadow the other in theis process. Learn how each drug attacks your cancer and then you can try to visualize and instruct your body in this work. I found this to be a simple, yet powerful way to fight my cancer.

You may not have the pep and energy you would like to have, but you will be alive to take care of your baby. That thought should sustain you through this tough time.

Roz · 12-31-2005, 07:22 PM

Hi, Just wanted to say that sometimes the pain that you feel at the beginning of treatment can be the Herceptin actually working. I had a spot in the soft tissue in my axilla and boy! could I feel the drug doing it's stuff!! I've been on it 12 months now, and still get the occasional twinge there. Hang in there, girl!