My oncologist and I talked about how sick I was this past weekend during my appointment today. Because I've had pain in that general area for about a year and a half and nothing has shown up on CT scans, she's referring me to a specialist. I was startled to hear that the CT scans don't show the stomach or intestines very well but when I thought about it, I remembered that I don't drink barium or anything special for the CT scans.
My oncologist thinks I should have an endoscopy test (and I can see possibly a test involving barium as well) and the specialist she's referring me to will set that up. She doesn't think that the problem is cancer-related but is more likely the sarcoidosis.
As far as my cancer goes, my CA 15-3 tumour marker was 40, which is well within normal for me. Apparently one of my liver enzymes - AST - was a tiny bit high at 37 but she's not worried about it because it's been at that level before.
We also talked about replacing my Pamidronate with a new treatment that was approved by Health Canada for treatment of bone metastates only a month ago: denosumab. It's a monoclonal antibody (something I remember writing a paper about way back in high school - they were the next great hope for cancer treatment back then) and it's more effective than Zometa (the treatment used in the US) or Pamidronate. It's administered sub-cutaneously (under the skin) once per month. If I go on it, I'll still need to have my port flushed because there's no way I'm getting rid of it.
The only problem with this new drug is that it must cost big bucks because she asked me whether I had any insurance. She doesn't like dealing with the financial aspects to treatment - and she's not trained to do it - so it's a good thing that there's a specialist over at the cancer centre who helps people figure out how to pay for treatments. This person is going to call me to find out about our insurance and talk to me about financing this treatment. I'm happy to say that Ian checked online for me and it turns out that his insurance will cover 100% of the cost of this new drug. Yay for me!
3 comments:
I just had my first denosumab tuesday. It's pretty quick, but burns quite a bit. the past two days i've felt nauseous from either that or I also started the faslodex...if it kicks my osteoblasts into gear...it's all worth it, right?
i was very worried for you, so i am glad the oncologist thinks it is nothing cancer-related. it will suck if it is a new symptom of the sarcoidosis. seems like your conditions never allow you to just "be sick", so i imagine the worry must become oppressive. well, i hope the tests come back totally clear!
love,
vicki
Jennifer, I did some research on the denosumab and it looks like nausea and flu-like symptoms are fairly common side-effects. As long as it works, taking it is definitely worth it. The Femara I've been on for forever (almost 5 years) causes joint pain and makes my sweating worse but since it's working, I'll stay on it. I hope your treatments keep the mets in check for a looong time!
Vicki, it is frustrating and worrisome that I can't be sick like "normal" people and that everything has to be investigated.
I also feel like I have to be hyper-aware of my physical state and this can be exhausting. Ian says that I'm a hypochondriac, and that's partly true, but it's hard not to a) focus on every little thing and b) worry that the cause of each little thing is big when I've got both the cancer and the sarcoidosis to contend with. I do try to let go of things and only focus on the things I can control but I'm not always successful at doing that.
Love,
Chantelle
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