Brain mets question - Page 2

Susan2 · 05-19-2006, 03:49 PM

Annemarie, that is awesome news. I am so happy for you.

Al, I couldn't be brave enough to fly across the country without an appointment. However, I could be extremely persistent - or is that just a nag? And hopefully, it will pay off.

I met again today with the radiation onc. We discussed the arecept. We will probably add that in to the mix as well.

I really appreciate all of you sharing your knowledge and insights.

I'll keep you posted.
Susan

Susan2 · 05-24-2006, 03:12 PM

I had my 2nd opinion yesterday. He agreed that wbr was the way to go. On the one hand, I'm glad that the drs. are in agreement. But on the other hand, I really would like some options. One of the good things that he said was that as a long term survivor, I currently had a good QoL and that should continue after wbr. I had never had a dr. categorize me as a long-term survivor. That was pretty cool.

I start wbr tomorrow. I'm going to do 4 1/2 weeks. That's longer than the standard, but I'm getting a smaller daily dose. The premise is that will give me time to heal on a daily basis and hopefully reduce or eliminate the long-term damage. I'm also going to do a low-dose Temador.
My radiation oncologist talked to the lead researcher on the arecept trials. He felt that the lower doses would provide more protection than the arecept for me. Then, the arecept could always be added later if necessary.

Thanks for all of your advice and support.
Susan

pattyz · 05-25-2006, 06:51 AM

Susan,

This sounds to me like he is looking at you as a WHOLE person, which to me counts for a lot!

Yes, that is what I understand about the longer lower dose of WBR; it allows more 'recovery' thus lessening damage. And I'm so glad to hear you'll be getting the Temodar. Am hoping BIG TIME you will respond to it as I (and others) have.

One thing: I do believe 'they' all tend to downplay the sides from WBR. I think that is so wrong. So, I will say to you, "Expect the best but prepare for the worst". I hope you take that the way I intend, as this is difficult to express in words...

If there are ways that you know of giving yourself comfort, stock up. As in special foods, books, low energy 'projects'... like that.

Very best wishes,
with hugs,
pattyz

Susan2 · 05-25-2006, 06:59 AM

Did you find the fatigue from wbr to be worse than fatigue from radiation to other sites? I'm hoping that the lower daily dose will reduce fatigue and hair loss, but of course, I have no way of knowing. I am signed me up for a half marathon in a few months, so I guess I need to check with the dr. about getting his ok for my training.Thanks for your support and don't worry about how you say things to me. I try to interpret everything positively. At this point in my life, I tend to be a tad Pollyannish. It can get on other people's nerves, but it helps me.

pattyz · 05-26-2006, 07:37 AM

Susan,

Please forgive me. I have not had WBR... but my comments come from reading the experiences of many who have. They are surprised by the total fatigue and length of recovery. Yet, this is not the experience of ALL.

And, I am hoping and reasoning as you. That with your schedule, the effects will not be as severe. I just HATE to be surprised, unless it is a good surprise! So, I am projecting that onto you I guess...

We each have to find our own personal way/s of coping with all our crap. Wear your Pollyanna hat if it helps YOU!!! But, from your posts, it sounds to me as tho' you take it off when the 'need to know' file appears. A pretty good combination, imho.

I think having fun stuff to look forward too is energizing. Hope you can participate in your marathon at whatever level you're able.

hugs, (she who doesn't know what Pollyanna's hat looks like anymore...)
pattyz
xoxo

Annemarie · 05-26-2006, 08:30 PM

Thanks Al. First I have to say I am in awe of you. What a wonderful man you are to post not only in your wife's behalf and memory but also to help others. Helping others is such a wonderful thing. I mean this with full sincerity.

Regarding the use of Temodar for brain mets it is actually not the best but all we really have other than WBR. Temodar works pretty well for primary brain tumors such as glioblastoma. Off the top of my head I think the reduction rate was 34% and for brain mets 11%. Everything helps. My oncologist today said he want me to d/c the Herceptin since I have been on it for 1.5 yrs and NED. I am not going to go off of it until Tykerb becomes available. Any thoughts?

al from Canada · 05-29-2006, 09:19 PM

Annemarie,

Thanks for the kind words. I have a number reasons I post: I feel I have family here, it helps me heal, I think I can still contribute and of course the big one: I have 2 daughters who have a one in eight chance of getting this disease in their life time. If the unthinkable ever happened, believe me; I will be prepared.

In terms of other options, there are other "small molecule" drugs that do cross the blood brain barrier. Two are Iressa and Tarceva. These drugs are HER1 inhibitors which represent 1/2 of lapatinib's action and since you are HER2 + there is a strong chance you are also HER1+. There is another drug under development, pertuzumab, which is a HER1,2 & 3 inhibitor but I am unsure of the molecular size.

Al