Newly diagnosed with questions

mommyjamieof2 · 07-28-2012, 08:37 PM

I am new to the HER2/neu group I am 30 years old. Progesterone and estrogen positive and KI-67 positive. Pathology shows an adenocarcinoma which is diffusely invasive into the lymphovascular spaces. The tumor is very large and they are wanting me to do 5 months of chemo before doing a mastectomy and then radiation, followed by 1 year herceptin and 5 years hormone therapy.
So far I have had a bone scan which was clear, a ct scan which showed 2 small spots on my lungs but they say they are not concerned about them, and a cyst on my ovary which they are also not concerned about. Waiting on results from the MRI but the oncologist looked at the cd I had and said nothing popped out at her.

I understand they want to shrink the tumor before they do surgery but my question is if the cancer has not spread anywhere else is there no way around chemo therapy? Is there any alternatives?

Treatment plan includes Acetyl-L-Carnitine the first four treatments and Taxol and Herceptin for the rest of the five months. Nevlasta along with chemo - Is this the best I could get if I must do chemo?

Thank you in advance ladies.

Pray · 07-28-2012, 11:18 PM

Mommyjamie, Welcome to the site. I'm sorry you had to join. Hang in there plenty of support is coming your way. There just isn't as much traffic here on the weekend. PM Sunday and then Monday for sure. Gods blessings to you I will be praying for you and your family. your friend, Nancy

mommyjamieof2 · 07-29-2012, 08:12 AM

Thank you.
Can you tell me what the positives sign stand for in your sig? Is it the progesterone and estrogen? thx

Mel3 · 07-29-2012, 08:29 AM

Be as aggressive as possible, definitely do the chemo. It is not as bad as you think. I was scared to death when I was diagnosed. I even asked for something to relax me during my first chemo, well, it knocked me out! I felt worse from that than the chemo drugs! You are young and have a long life ahead of you, so kick this out of your body and face it head on. I've had a small spot on my liver they are not concerned about and same as my ovary. I have to trust the docs. What is Acety-L carnitine treatment?

mommyjamieof2 · 07-29-2012, 08:45 AM

I am not exactly sure what it is and I might be wrong he just wrote down ALC.

roz123 · 07-29-2012, 11:51 AM

dear mommy
yes the traffic is slow on wkds so you will get more replys during the week

the reason they want you to do chemo is that even tho your scans are clear they cannot pick up micrometasis (very very small cancer cells in your body) even if you have clean lymph nodes cancer cells can travel via your bloodstream
so yes, it is very very important to do chemo. You are young and probably otherwise in good health so you will be able to handle it. Its no walk in the park but it is doable. Her2 is very aggressive and chemo/herceptin are our best weapons. Your anti-hormonal is also critical as you are hormone positive

i also had chemo first, there was zero cancer at surgery -

chekmark · 07-29-2012, 02:51 PM

I agree, chemo is important to kill any lurking cells. (They are sneaky little fellas). I am sorry that you are going thru this and so young. Cancer is such a scary thing and the horror stories we have all heard about chemo scare us even more. It has improved so much. I never got sick. It wasn't a cake walk but doable. I worked thru it all . Once you are on herceptin only you will just keep getting stronger and feeling better everyday. You hair grows in and you start to feel like your old self again.

I told myself that if my cancer comes back I did not want to ask myself, what if, so I just did it.

Think it thru, ask alot of questions and try to be comfortable with your decision. A few months of chemo is a small price for your life.(Well thats how I look at it) I am now 8 months out of all treatment and feel pretty good, my hair is back and life goes on.

I am assuming your children are small from your screen name and your age. Do you have someone that can help you?
I wish you well, please keep us posted.
Darlene

mommyjamieof2 · 07-29-2012, 11:50 PM

I do have young kids 6 and 9 but I do have alot of help and support. Thank you for taking the time to answer my questions I appreciate it.

Mtngrl · 08-13-2012, 03:13 PM

Dear Jamie,

You do need chemo. You might also need radiation. Your oncologist can show you the data that show how much better the outcomes are with aggressive treatment.

As others have said, chemo is not that bad. Just take it one day at a time. You'll get through it before you know it.

Love yourself. Take care of yourself. Remember to breathe.

Love,
Amy

Jackie07 · 08-15-2012, 10:12 AM

Hi Jamie,

I wondered if your doctor had written something like the following:

A/C x 4, then T/H x 4, H only,Q3 weeks for a year

This is a pretty standard treatment plan for Her2+++ gals/guys. I think the schedule has been the choice of treatment for the past year or so. (There are some good illustration/explanation about Her2+++ in the 'HOME' page.) The shortened schedule of A/C (Adriamycin/Cytoxan) reduces the risk of heart damage and allows Herceptin (a monoclonal antibody specifically made for Her2 breat cancer) to be used sooner. T is a Taxane (Taxol or Taxotere) All of them stops cancer cells from dividing via a different mechanism - so there's a better chance they will never come back.

If you browse the treatment history of other newly diagnosed members, you will find similar schedule like yours.

Walking 30 minutes daily does wonders. I'm sending you good vibes.

mommyjamieof2 · 09-24-2012, 08:23 AM

I guess I should probably update my thread.

I was accepted to a clinical trial I am on herceptin, pertuzumub, and navelbine. I go two weeks on one off with the first being all three and the second just the navelbine. I am classified as a stage 4 they found cancer in one of four samples they took during a lung biopsy and they are assuming two letic lesions they found in my cheak bone and tibia are also cancer. The chemo does not affect me as bad as would have been expected from the other drugs I was going to be on. My stomach bothers me the first day and occasionally through the week and I am really tired. They don't expect me to loose all my hair but it is thinning a little.

I don't really know what to expect at this point if they do surgery to remove the lump they have to take me off the clinical trial so the oncologist is hoping that the drugs will elminate the tumor and I can stay on the drugs. We will see it is all a waiting game right now. I have scans in October.

kklouisiana · 09-24-2012, 09:30 AM

Sweetie, you are in my prayers. Women on this site will encourage you. I was also hesitant about treatments until I had these wonderful warriors give me the advice I needed. I thank everyone who cared enough to help me through this.

yanyan · 09-24-2012, 03:42 PM

Hi Jamie ! I hope everything goes well with the trial and you will be in remission for a long long long time. There are many positive stories here and they are REAL ! Don't lose hope !!

Pray · 09-25-2012, 05:16 AM

Hang in there Jamie! We appreciate the update, and look forward to hearing the outcome from your Oct. tests. All postitive I am hoping and praying. Gods blessings to you Little Sis and your wonderful little family! Have a great Day!

BonnieR · 09-25-2012, 08:39 PM

Jamie, it is good to get your update and learn that you are receiving aggressive treatment. As you say, it is a waiting game sometimes and we need patience. Keep your eye on the prize.
It might help if you were able to post your bio in your signature so we can see all that is going on with you
We always say that we hope for positive news when we get scans and such, but I guess we really hope is for NEGATIVE news!! Really, we just mean GOOD news!
We are all here for you. Keep the faith.

lkc Gumby · 09-27-2012, 11:48 AM

Hi jaime,
Good to hear you're on a Clinical trial with Good drugs! Hope all goes well with your scans in October.
( It gets easier honey!)

pwiswell · 09-27-2012, 04:55 PM

Jamie, good luck with your treatment. I was diagnosed with Her2+++ in 2003 at age 35 when my children were 2 and 4. In 2006, I was diagnosed with bone mets. It has been an uphill battle but I'm winning. You will too. When the days get long and you start feeling bad, think about your little ones. They will give you the lift you need. Hang in there. You are in my thoughts and prayers.