They say not long now...

[Totainsgrl]

Hi all!

It's been a few days since I've been on, but Mom came home so I've been helping the family.

We went to the onc for the first time since surgery and he said that Mom seems more debilitated than he had expected. Therefore, he said that she would not be a candidate for chemo since her hemoglobin is 7 and her platelets 20000. And the radiation onc most likely won't try anything until those levels rise.

That being said, he wanted to do a bone marrow biopsy to see why her body isn't producing platelets. He gave her a drug much like Procrit for the hemoglobin. So, I pushed for a PET scan as well. He didn't want to, then on second thought, ordered it. I want to see the big picture of what we have left to fight. My mom is insisting that she fight until her death because she won't give up and let Cancer get her. She's strong. Wow, is she ever strong.

We asked her what she wanted to do and she said "everything we can until I say otherwise". So, we're going with it.

He talks of doing Herceptin a while if we find more mets in the body. The brain piece is still being discussed but they are pushing for WBR. Since it is one tumor that has been 99% resected, I want them to do more localized focal radiation and not WBR. They said that if the cancer didn't kill her, the brain necrosis would. Either way, we're looking at 6 months. I don't know how they can tell since her last full body scan in August was clear. Could the mets be out of control so soon?

I don't think I believe them. I think that we have options here, and they are just giving up too early. They did this before when the situation was grave and she popped back. She's completely coherent, but the Decadron just makes her look bad and it raises her sugar to the point she gets tired. But seeing her at home is night and day compared to what the docs see.

I'm not being naive, and I know that this could be it. But, as long as she is willing to fight, I'm going to be her biggest advocate. Then, after she is gone, whenever that may be, I will begin my fight for all Breast Cancer patients and Survivors.

Hi from San Antonio BC Symposium -
You are right to keep asking questions. Maybe if your Mom is too debilitated to take WBR now you can first start out with Gamma Knife Stereotactic Radiosurgery for the piece that is left and any other that show up in the brain MRI.
It is an easier treatment and will offer her time to recover from her debilitated condition and seek further brain radiation later.
A short course WBR may be recommended by your rad onc.
It sounds like your Mom has not ben getting Herceptin. Please insist that she does get Herceptin. Weekly dosage may be best - depends on when and what is picked up on the PET scan. Herceptin has been noted to halt tumor progress in many women. Keep in touch with our message board and post whenever you like.
Hugs,
Christine

I am proud of your mother. I know---there is such a mindset out there about dying. How about living? When a "hocus pocus" lady/nurse said to me two years ago, "how do you feel about end of life "issues"? I replied, "You mean death?" "Yes, dying", she said. I said , "I am busy living right now, and I will live until I die." Yes, there is a time for everyone, but it seems like when one had "metastatic" cancer, the death brigade gets on you right away. They've got you dead or dying before you know it.

I say as long as she is willing to fight, then fight like Hell.
Work with her doctor and emphasize that she still has fight and hope in her. Is it too late for a second opinion?
God be with you and your mama.
Warm blessings
Kim (from CT)

[Lolly]

You are being a great advocate for your mom, and with you and your family behind her your mom's desire to fight the good fight should be honored by the doctors. I agree with Christine, if she's not getting Herceptin still, that should be addressed with the docs, as it could slow progression in the body while the brain is being treated.
It's a wonderful gift you're giving your mom, being her advocate. Bless you.
Love, Lolly

Hi, I had a stand in Onc in February, lovely lady, I asked for a MRI for the stubborn lump in my neck that kept showing up as nothing, she said "why do you want one", "there is nothing we can do for you', I was gobbed smacked, and said I have a 14 year old daughter that is why I want to know, she picked up the phone and dialed my onc at home who was sick, she only got out of her mouth Lyn wants, and she hung up the phone, I got my MRI, I got my Herceptin/taxol/carbo and today I am NED after 26 doses, I feel sorry for the other patients she takes the same attitude with, but what can we do for them??? Keep the faith and the rest of the forum will give you all they knowledge we can muster to help you through. I sound like a broken record lately but I swear by the Flaxseed Oil Capsules 1000mg 4 a day, shrinks tumours builds up the immune system and I had hair regrow once I started and still on treatment, can't hurt it is a natural Omega 3 and Cox2 inhibitor. Praying for your mum and family.

Love & Hugs Lyn

Love & Hugs Lyn

hetrahan@aol.com


I certainly will be praying for your mom.