Thursday, May 3, 2012

The Report from My Oncologist (The Plan)

I'll try to keep from rambling from place to place in this post, but I'm on information overload, so there are no guarantees.

I'm taking part in a clinical trial.  No, this doesn't mean I'm getting un-tested drugs or anything.  I will get the same mix of chemo drugs that the doctor would prescribe anyway, but because of this trial, there is a 50% chance I'll be chosen to get an extra drug that has not typically been used in cases like mine, but might be beneficial. There are slightly over 3200 women, with cancer similar to mine, who will be a part of this trial.   It was purely voluntary on my part.

Some people with breast cancer are HER2-positive.  In that case, they are given Herceptin.  It is to fight this protein. When it comes to your HER2 number, you are a +1, +2, or +3.  +3 means you are HER2 positive.  Otherwise, you are considered HER2 negative.  I am a +2.  Technically, that makes me HER2 negative, but they are doing this trial to see if "HER2-Low" patients (me) might benefit from Herceptin.  Whether or not I get this extra drug is the only variable based on the trial.  Other than that, all other drugs/treatments will be the same.

My chemo will start in late May.  Probably another 3 weeks or so.  My cocktail will be Doxorubicin and Cyclophosphamide.  This will be given every 2 weeks for 4 cycles.  After that I will take Paclitaxel once each week for 12 cycles.  If I am in the part of the trial getting Herceptin, I will receive it during this same 12 week period, plus every 3 weeks for a year.  There is no additional cost to me for this drug, since it is part of a trial.

After all chemo is over, they will talk to me about doing radiation.  That isn't a decision that has been made, but it seems that they are leaning that way.  We'll get through the chemo nonsense first.  Woo Hoo!  A summer vacation for the ages, no?

I can't find that I've explained tissue expanders much on here, so if I have, ignore this part.  When they did the mastectomy, they inserted a tissue expander.  This is basically a special type of breast implant that is deflated.  Because of my original size, they filled it partially while doing the surgery to insert it.  After the final drain is out (more on that later*) I will start visiting the plastic surgeon's office every two weeks for a "fill."  They will add a bit more saline each time.

This is basically stretching out that pectoral muscle in preparation for the permanent implant.  Here is the cool part:  We just keep going with this plan until I am happy with the size.  (Yes, Kevin gets a vote.)  When we decide it is what I want to have forever, then they do reconstruction on the right side to match.  (Take THAT, gravity!)  Because of chemo, we'll schedule the fills around that.  My blood counts will be at their best the day before chemo, so that is the day I'll get a fill.

Wow, I hope this all makes sense.  Please feel free to ask ANY questions you have at all.  I'm still figuring it out, and certainly feel better after a nap.  If I had tried to type this right after getting home, it would have been gibberish.

*Oh, and as far as that second drain?  I've decided to embrace the drain and adopt it as a member of the family.  His name is Jaxson.  He is QUITE productive.  He will be a part of my life until he gets lazy enough to produce under 30cc in a 24 hour period.  This morning, that ambitious little guy gave up 85cc before noon!  Ahhh.  Isn't he precious?  I think I'll draw a face on him and accept him as a permanent part of the family.


Donna said...

Well, it doesn't answer all my questions, but I think I'm happy with your choices.

Rachel said...

What questions aren't answered? Maybe it's something I know the answer to.

Adirondackcountrygal said...

Your treatment is a bit different then mine. This is what I was.
Diagnosis: 1/5/2011, ILC, 6cm+, Stage IIIc, 10/19 nodes, ER+/PR+, HER2-
Diagnosed: January 5, 2011
Type: Invasive or Infiltrating Lobular Carcinoma
Recurrent? No recurrence
Metastatic? No
Stage: Stage IIIc
Lymph Nodes Removed: 19
Positive Lymph Nodes: 10
Tumor Size: 6cm or larger
Tumor Grade:
Hormone Receptor Status: Tumor has both estrogen and progesterone receptors
HER2/neu Status: Tumor does not have an excess of HER2/neu receptors or genes
I got a cocktail of "ACT" stands for A-Adriamycin, C-Cytoxan, T-Taxol. The Taxol was the worst. If any side effects for you are nausea ask for a drug called Emend if your insurance will cover it. It works great!

Rachel said...

Does it Cheat if I copy from LOL

Diagnosed: March 9, 2012
Diagnosis: Diagnosis: 3/9/2012, IDC, 2cm, Stage IIb, Grade 2, 3/10 nodes, ER+/PR+, HER2-

Can we say Lazy?

Forty Pound Sack said...

Is it a concern that Jaxson is so ambitious? How long is that draining supposed to go on?

Rachel said...

Usually, when a drain drops off production, it does it all at once. The record for my plastic surgeon's office is 7 weeks. ACK! I plan on talking nice to him and letting him know that he's done his job. Seriously, if they pull a drain too early, it causes bigger issues, so Jaxson and I will just come to an agreement.

Donna said...

I'm trying to figure out the frequency of your chemo treatments. Best I can tell, you won't be doing the every-day, five-days-a-week thing like Phil is doing, right?

Rachel said...

Radiation is the one that you have to do every day for weeks. Chemo (in my case) will be every other week.

Shell said...

So have you decided yet? Wigs or scarves? Think how much fun we could have with wigs! You could have all different lengths, textures, colors... Own it! Make it a fashion statement! Just in time for summer!

Levity aside, I'm glad you are getting concise answers to your questions. The unknown is terrifying. Armed with information, you can yell, "BAH, cancer! GTFO (abbreviated for family) and STAY OUT!"

Love you!


Sounds like a plan. The chemo will take everything you've got. If the clinical trial drugs help just one person, you did your good upon the earth. Which helps to make sense of this cancer you have. Take care.

Lori said...

I know it must be a relief to have a plan. All my best to you!