I'd love some input on game plan options for after radiation

DeenaH · 10-15-2010, 06:00 PM

First, thank you to Courtney for telling me about this group! It's hard to find other young women with breast cancer.

Since I haven't figured out how to post my info in my signature, I'll give my basics. I am in the process of getting multiple opinions on what to do after radiation, but would love to get some input here too.

I was diagnosed with Stage IIIC locally advanced HER2+++ BC in March this year. Here is the breakdown of what happened:

March 22, 2010: Stage IIIC IDC, HER2+++, ER/PR-
March 26, 2010: Met with Surgeon at UCSF (recommendation was for neo=adjuvent chemo followed by bilateral mastectomy and radiation)
March 29, 2010: Met with local surgeon (Recommendation was for surgery first followed by chemo and radiation. I decided to do surgery first and it was scheduled for April 5)
March 30: PET/CT: Showed cancer in at least 7-8 axillary nodes filled with cancer, 2 mammory nodes and one superclavicular node. Switched to neo-adjuvent treatment due to mammory and superclavicular node involvement.
April 5: Port placement instead of bilateral mastectomy
April 9: Started chemo. 4 dose dense treatment of A/C followed by 4 dose dense treatments of Taxotere. Started weekly Herceptin with Taxotere treatments.
August 19: Finished Chemo!!!
August 24: New PET/CT showed all cancer gone from all nodes, and some uptake to the original tumor area.
September 9: Bilateral mastectomy with immediate reconstruction (implants w/ Alloderm).
September 16: Pathology report came back. 3.2cm tumor from right breast, 18/51 positive axillary nodes (levels 1 and 2 removed), granule sized cancer found in fatty tissue between levels 1 and 2. This was not news I was expecting after my PET/CT results. It was also my 40th birthday, so Happy Birthday to me!
November 1: Start radiation

Now I have to decide what to do after radiation. My surgeon thinks we would be stupid not to assume there is more cancer. He assumes there is still cancer in my inoperable nodes, and micro cells under my arm (and who knows where else). My oncologist doesn't think Herceptin alone will be enough, so we are coming up with a plan. Here is what is on the table so far:

Plan A: Add Laptinib to Herceptin after radiation if my insurance will approve it. My onc really thinks this should be our first choice, and has already started the battle with my insurance company so we'll have an approval in place long before we need to make a decision. If I do this combo, she is thinking about keeping me on it for 2 years instead of 1.

Plan B: If insurance will not approve Lapatinib, do the vaccine trial in Washington and then possibly the Naratinib trial in SF. She really doesn't want me to end up on just Herceptin for 6 months while I wait to be eligible for the Naratinib trial. I have already talked to the Dr. at UCSF and she said I qualify for it as soon as I finish Herceptin (or stop it early).

Plan C: If insurance will not approve Lapatinib AND I can't get into the vaccine trial (I already have the ball rolling on that too), finish the year of Herceptin and then start the Naritinib trial.

In the meantime, my husband and I are flying to Chicago on Sunday and will be spending the week at Cancer Treatment Centers of America to explore the idea of merging traditional medicine with holistic and nutrition. Next month I have a consultation with Dr. Slamon at UCLA. I really can't wait to see what he thinks I should do next! I will finish radiation in December, so I want to have a concrete plan in place as soon as possible.

Anyway, I'd love to know if there are any other ideas I may have missed. I'm sort of a research nut, but it's hard to even know what to look for or what questions to ask.

Thanks for reading my long story if you got this far.

Jackie07 · 10-15-2010, 06:12 PM

Deena,

Looks like you've got the situation under control. Dr. Slamon is probably the best person to consult with. I would follow his advice if I were you.

Jackie07 · 10-15-2010, 06:40 PM

Oh, forgot about the signature.

Look on the top of the Board - click on 'User CP' - then scroll down to 'Signaure' (under 'settings and options') - copy and paste your information there. If it tells you the signature is too long - just edit it with lots of abbreviations.

candlegranny · 10-15-2010, 07:03 PM

wow Deena, looks like we have a lot in common... with 3C and the superclavicular nodes. I had 2 with cancer showing from PET, but after chemo the cancer was gone,. I just finished radiation, and now will continue herceptin every 3 weeks for a year. I talked to my oncologist about what I need to do next and he said nothing. they used the standard treatment on me and it worked. I am still so scared that this dreaded disease will come back on me if i sit around and do nothing. I am real interested in what the doctors tell you. Please keep us posted. thanks so much Bonita

Sandra in GA · 10-16-2010, 12:54 PM

Deena,
It sounds to me that this cancer is going to have a fight on it's hands with you. I don't think there is another stone you have left unturned.

I am also one of those research nuts and wanted to base my decisions on data. I learned that one of the big problems is that since Herceptin has only been availiable ten years and Tykerb still hasn't been approved for early stage, there are not many studies that pertain to us.

I wish you all the best. It truly sounds like you are seeking out the best information. Sometimes, one just has to take a leap of faith when deciding.

Hugs and Prayers,
Sandra

joletta · 10-16-2010, 07:33 PM

Hi Deena,
So sorry to see your scan picked up nodes. Look @ my signature we have been dx very close to each other. Life has not been the same since, but with 2 small children i try to make it as normal as possible. It sounds like you have a wonderful oncologist and definattly seem to be on the right path...The decsions of paths seem to be the most stressful.
Best of luck. I can see all those nodes dissappering soon

Joletta

DeenaH · 10-17-2010, 08:20 PM

Thanks everyone. Being a research nut, I always fear I am going to miss something. It's good to know that I seem to be covering all bases.

Wow, a few of us do have alot in common with our dx's! I hate that we all have to go through this. I have 2 little ones too (6 and 3), and that is the hardest part. Trying to find the balance between taking care of myself to get better, and feeling up to taking care of them. I hope it will be getting easier soon since I am done with chemo and mostly healed from my surgery. Radiation starts next month, so we'll see how that affects me.

Good luck to you girls.

candlegranny · 10-17-2010, 08:39 PM

Is tykerb still in clinical trials? I have a lot like you Sandra with the node involvement and stage 3. I am actually stage 3 C but my doctor never mentioned me doing tykerb. I know alot of things are being looked at to use at early stages but i dont think my BC is considered early stage. What do i need to discuss with my oncologist about tykerb? He says i dont need a clinical trial, they used standard treatment and it worked?? I am so nervous about all this. thanks!! Bonita

Sandra in GA · 10-18-2010, 06:04 AM

Bonita,
What I was told down at Mayo in Jacksonville was that I was still early stage because it had not spread to other organs. I guess I was IIIC also even though I was never told specificially. I never asked too many questions about that. I just wanted to know what we could do to get rid of it.

The trial I was in with the Tykerb is closed. Now you would have to enter the ALLTO trial and possibly get it in combination with Herceptin or alone. However, I am reading on this site where other women are getting it "off label." This could be something you could ask your do about. It has already been approved be the FDA for late stage. From you information, I think we both are considered "early stage." However, I think we are very late early stage.

One thing you could investigate would be the Walter Reed vaccine trial that I added as a way of adding more protection. After I showed my onc the paper work, he encouraged me to do it. This may be what you have to do. If you want more info, please pm me and I will share contact infomation. I know not all of the sites are closed for this.

Good luck~
Sandra