A Brighter Day

I woke up this morning feeling lighter. 

Now, this is a good feeling, so I'm not going to analyze it to death, but I was kind of surprised. I didn't think I was particularly stressed, although the past two days, which I spent writing out my entire cancer treatment history, were, in hindsight, rather tiring. 

OK, a lot tiring. 

It also helps that the sun was shining when I woke up, and it's still shining two hours later. It looks like it's going to be one of those perfect late-fall days: cool and bright. 

Suddenly, I have the energy to do chores that I've been avoiding: laundry, cleaning the kitchen, cooking a pot of vegetable soup, and changing the sheets on my bed--always a luxury, clean sheets. 

I also have a couple of jewelry orders to fill, and some yard work. Connie will help me with the yard work, and maybe I'll even manage to walk him. (If not, we'll play catch out front. That always tires him out.) Monica is coming over this afternoon to take some jewelry photos for me, so there will be new items on Charmed Bracelets in a few days. 

Neratinib Update

I saw Dr. Lee yesterday, and it was a good appointment. I took him the draft of the application to get neratinib on compassionate use grounds from the drug maker, Pfizer, and he is going to work on that. The application actually goes to the FDA, of course, once Pfizer has agreed to give me the drug. 

At my last appointment with Dr. Lee, he had asked me to call the oncologist at Wyeth/Pfizer who we'd been in contact with, to make sure things were going ahead on their end, but when I called her yesterday she clearly didn't want to talk to ME. She said, at least three times, that they [Wyeth/Pfizer] wanted to work through my oncologist. 

Now, I get that, I think, but it is also clearly a distancing move. She didn't want to have direct contact with a person she is making a life-and-death decision about. 

In any case, we (or Dr. Lee) are now dealing with a different doctor at the drug company, a Dr. Ken Wong. He and Dr. Lee had exchanged e-mails, and Dr. Wong was concerned about my C. diff. Because the most common side effect with neratinib is diarrhea, so if I already had this problem, I wouldn't be able to take it. 

Of course, I haven't had any problems since I was released from the hospital, and Dr. Lee is going to tell Dr. Wong that, but I'm still on antibiotics, so ... I'm supposed to call Dr. Lee with a status report next Tuesday. 

Dr. Lee is going to the breast cancer conference in San Antonio, and he said he'll be gathering all the info he can on neratinib there. Seems like there has been some talk about liver problems with the drug, so he'll be asking about that. 

At least we are both doing our due diligence, and it may turn out that this is not the right drug for me ... argh. 

Cykerknife Update

I had a phone message the other day giving me the date and times of the planning scans I need before my cyberknife treatment. I'm getting both a CT and an MRI on December 21, so that means no cyberknife till after Christmas, which is my preference anyway.

Especially since that nerve to my tongue has been quiet. If my tongue were still numb, I'd want to move ahead more quickly. 

A footnote: If you are taking neratinib and wouldn't mind sharing info with me on how you are doing on the drug, please e-mail me: jeanne.sather@gmail.com

@ Jeanne Sather 2009. 

Comments

[Mia]

Hi Jeanne, I'm a loyal lurker here and a friend of your friend Rebel8's, and you once helped me with advice for a Seattle friend with uterine cancer (she thanks you for that). Introduction done. I just wanted to direct you to breastcancer.org, which has a discussion-board thread on neratinib trials that might be helpful to you:

http://community.breastcancer.org/forum/80/topic/740167

Wishing you all the best, M

[Stephanie]

Hi Jeanne -
I am off to Texas tomorrow. Will be in Austin then on to San Antonio.
The HER2support.org web site also has a thread on the Neratinib trial for early stagers. You can find it in the HER2 Group forum. Or just "search" and you will also get a lot of articles. But the thread has the symptoms, why some are on or off the drug, etc.