Keith and I met with Dr. Michaelson yesterday. It was fantastic having Keith there with me...he had questions that I didn't really know the answers to, and it was nice to have him be able to speak with Dr. Michaelson directly about his concerns. And...we got to have lunch afterwards in Boston, very fun spending time with my darling son. I feel sorrow that he and Kristeen and Heather and Ralph have to be dealing with this, at the same time, I am so grateful for their encouragement and their caring ways.
We review the options for treatment...(1) do nothing, sit back and wait, and then start treatment when there is a resurgence, (2) start the standard treatment of "chemo", with the drugs Sutant and Torisel, or (3) go on the clinical trial with the drugs Sutant and Gemcitabine. We immediately knock out the option of waiting...then talk at length about the other two options. Dr. Michaelson admits his bias in wanting me to go on the clinical trial...he is running this clinical trial. He explains that clinical trials come and go, they help research as well as potentially helping the patient, that it is totally up to me. He gives us a baseball analogy that makes sense, that doing this clinical trial is like having an extra "at bat". That sounds right to us. He explains that the side effects have not been too bad for the patients currently participating in the trial, and that I will be watched carefully; that at any point, if there is a problem, I can be taken off the trial and put on the standard treatment. Keith has questions and Dr. M. spends close to an hour with us going over everything. He makes it clear that, whatever the decision is, it will not be a cure, that it will not make me feel better, in fact, will most likely make me feel not so good.
The obvious choice seems to us...to do the clinical trial. Once that decision is made, I say that I would like to start ASAP. I will have to do the testing again...CT scans, bloodwork, nuclear cardiology, bone scan. The medication will be 15 days on, then a week off, then starts again for another 15 days, a week off and so on. It will be pills, with the exception of Day 1 and Day 8 of each treatment cycle, when it will be by infusion at MGH. I ask that we start the testing immediately so that I can start the medication before I go on vacation....and maybe have that vacation week as the "no meds" week. Keith and I tell Dr. Michaelson that we just don't want the cancer to get a foothold---let's start right away....he puts his hand on my shoulder, looks me in the eye and gently says, "it already has a foothold....go on vacation and we'll start immediately after you return".
Slam! Reality! There it is again...sometimes I think I'm in denial about all this...and I know it's because I feel totally fine. I'm involved in my care, my diet, etc., and being focused on this helps keep the "dark side" at bay, so much so that I seem to be functioning pretty normally. Then I get the "slam", and reality hits. Of course, Dr. Michaelson is being truthful and real, and I so appreciate this and his kindness...it is what I want and expect. But, while I need to know the harsh realities of cancer (his job to tell me), I also need to have hope and believe that I can fight (my job) in every way I can to keep it dormant and prolong the harshness of this disease for as long as possible. And....I'm taking my job very seriously...
Subscribe to:
Post Comments (Atom)
3 comments:
I took a few notes on things from the appt. yesterday, and, in the interest of getting as much of this info down in writing as possible, I thought I’d share my take on what was said yesterday too, in case useful for future reference or in case anyone reading this wants to offer 2 cents.
The most standard treatments for this kind of renal carcinoma, according to Dr. M are :
1. Sutent (which is the trade name for the more cumbersome “Sunitinib”). This is a pill taken daily. When prescribed as a standard treatment, it is taken daily in long courses without a break from it. I didn’t write down this number, but 45 days sticks in my head. When taken for this length of time, it sounds like it’s side effects can be quit significant.
2. Toricel (sp?) This is a fairly mild and targeted form of chemo. It is an option for Bev’s kind of cancer primarily because of the papillary vs. clear cell typ1e she seems to have.
Both of these standard treatment will remain options Bev can opt for at any time. However, the clinical trial being offered is only available for a limited time (though there will likely be other trials that might be appropriate too, with some luck). This is why the metaphor of the extra at bat.
The clinical trial involves as many as 15 3-week cycles (45 weeks), if tolerated. It involves being treated with both Sutent and Gencitabine. The Sutent is still in pill form, taken daily, but only for the first 14 days of every 3-week cycle. This “break” from this medicine seems to make a big difference in how well it’s tolerated (i.e. severity of side effects). In addition, the Gencitabine is given intravenously on days 1 and 8 of every three week cycle (21 days). It is a chemo type of drug which is already in use regularly for fighting pancreatic cancer. But renal cancer is a newer, unapproved application of it.
In addition to the “extra at bat” reasoning, the meds given as part of this clinical trial, because of the incorporated breaks, seem to be better tolerated by patients. In addition, though the jury is obviously sill out, it appears they are quite promising when used together in this application.
My memory of the foothold comment is “This thing had a foothold before we ever even know about it.”
It was a privilege to be a part of the visit, and a treat to have lunch in the French Bistro across the street with you, mom! I feel really confident in the decision you made as to how to proceed. I didn’t expect to feel that confident and comfortable. I also think it’s a good choice to get as much of the testing done as possible, but not start the actual treatments till after EC.
Thanks for the great post.
Love, me
Thank you, Bev, for sharing your world. I rejoice and cry with you.
The trip sounded wonderful snd now the veganchallenge!
You are running the race to win.
There are many of us on the sidelines cheering...Go Beverly !
I pray that God will give you peace,
and calm any fear that arises.
Love and xoxo
Bev, I have been off line so much these days. Peter takes the computer to his new downtown office. So I have to check out stuff at night these days as my Mac is not working very well these days. Here I am right across the Street from you and to read all that you are going through each day when we see the red car come and go. You are just so fabulous as everyone that knows you knows....I just hate that you have to go through this. Love you.
Shell
PS, please call if you need anything!!!!!! I'll be right over if you do.
Post a Comment