Doc agrees to my plan

hutchibk · 04-27-2007, 07:15 PM

Saw the doc today. Took my "research paper" (lol) about WBR vs. all other options. He is on board with putting WBR off for later, if necessary. We talked about a lot of things. The complex thing for us right now is that we need to treat the brain mets at the same time as the small advances in the torso and small new met in the left chest.

So, the plan is this: start Xeloda on Monday (left his office late today, Friday, and pharmacy was already closed, will call tomorrow to see if it is ready, otherwise it will be Monday). Add Tykerb when it shows up in the mail in about 10 days. Wait 6 weeks and MRI again to see how the Ty/Xel is working on the brain mets, and if there are new punctates. If no new punctates, then we will do targeted rads on my 3 known mets. If there are new punctates, he would like to move forward with WBR. I will still fight for the wack-a-mole method at that point in lieu of WBR. But, I don't think it will come to that because as an added measure and to appease my need for another opinion, in the meantime he will refer me to MD Anderson Neuro-oncology Dept during the next 6 weeks to see what they say. He believes that they will want to use their new proton beam machine and do targeted rads. I don't have a problem with that.

Sounds like a plan I can live with. I really love my onc. I gave him a big hug when we were done. He reminds me so much of my big brother, it's so cool! I lost my brother 6 yrs ago, and I swear my brother channels through him sometimes.

pattyz · 04-28-2007, 06:00 AM

Brenda,

I'm so pleased by your new news! Ofcourse, I'm wishing you'd be given a bit of Temodar along with the Xeloda... as well as Tykerb. But so glad to hear your great plan for tx's.

When I began my X/Temodar in Aug. '04 I had become dizzy 24/7 in the blink of an eye. The 8 brain mets had only been seen on MRi, without symptoms for over 3 months...then 'blink'. In a fairly short time... 7-10 days, the dizziness lessened then disappeared. I was afraid to tell anyone, less it was in my imagination!

That first Mri after two rounds/two months indeed showed 50% shrinkage with no new lesions... and a repeat performance with the next at another two months. Can't tell you what relief and joy I felt... And I sincerely hope the same for you,
xopatty

Mary Anne in TX · 04-28-2007, 08:02 AM

Hi Brenda!

It sure sounds like you have a great plan worked out! I know exactly what you mean about having a great doctor. It makes all the difference. Here's to successful treatment for your mets and "boring" side effects! ma

hutchibk · 04-28-2007, 10:24 AM

Patty - We shied away from Temador because of the trickiness of the body mets at the same time as the brain mets. We might consider it someday if we see brain mets only, with no new body activity. He believes that I am the perfect candidate for Ty/Xel right now. He didn't want to consider doing Temador with Tykerb as there is no data on those two in combo. He's not ready to do any experiments on me and he always keeps a cautious eye toward the potential of unintended consequences. Also, since Xeloda crosses the blood brain barrier, we will rest our hope for now on it in combo with Tykerb to beat back the seeds that might be lurking. So, that is the plan for now. I will definitely keep the Temodar option in my back pocket for future reference. He knows that I don't let go of alternate ideas very easily...

We talked at length about WBR, too. I am still not ready to get on that bus, but I feel a little better about it, if it should come to pass for me some day. If I understand correctly (and this may be a really simplistic way to explain what I think I know), each brand of brain tumor responds to different dosages of rads. Breast mets in the brain respond well to a less toxic dose than, say, primary brain tumor or lung mets in the brain. And, research is showing that lower dosing of rads over a shorter period of time is as effective as the stronger dosing used across the board in the past. And even better results with targeted STS at the tail end of WBR to the known mets. The less toxic the dose of WBRads, the less cognitive damage. Also, a lot of cognitive damage is due to and worsened by general health of the patient (i.e. history of smoking, alcohol, drug use/marijuana, heart disease, diabetes, and other things that can affect/restrict blood flow to the brain, the age of the patient, etc...), and luckily I am a perfect patient in all of the general health ways for WBR if it is needed. I have lived a pretty straight and narrow healthy life with no other natural health issues.

Thanks MA - I feel pretty good about it right now, but I am anxious to get started on Xeloda and eradicate the little buggers that are hanging around right now. Monday can't come too soon for me!

Vanessa · 04-28-2007, 11:43 AM

Glad you have such a wonderful doctor. Best wishes with your treatment. Also, forgive my lack of knowledge but what is WBR?

hutchibk · 04-28-2007, 11:52 AM

Hi Vanessa - WBR stands for Whole Brain Radiation. It is an ominous thought for many. I may be a candidate for it some day, but I am learning and looking for alternatives for now. Many BC patients are now trying what I like to call the 'wack-mole-method', which is targeting the specific brain mets as they appear. It is the method that I want to lean towards for now, as the thought of potential cognitive deficiencies from WBR are a bit intimidating. But, like I said above, those issues are more mitigated by lesser doses, better overall health and younger age of the patient.

Vanessa · 04-28-2007, 01:09 PM

Thanks for the info and again best wishes to you. You are in my thoughts and prayers.

Esther · 04-28-2007, 10:23 PM

Brenda, glad you decided on a course of treatment that you feel comfortable with. Keep us posted, I'm hoping that you see success with your treatment soon!

Jean · 04-29-2007, 02:40 AM

Brenda,

Wishing you all the best in your treatment!
Will be saying a special prayer for you.

Regards,
Jean

chrisy · 04-29-2007, 09:24 AM

Brenda - Good for you, and good for your onc! I'm so impressed with the way you took charge, did the research, and planted yourself in your doctor's office with a plan backed up by so much research! I'm also impressed with your onc - some of them are just not as interested in listening to their patients but yours seems to be very willing to put any doctor ego aside and really discuss options with you. Sounds like you have a well thought out plan that you both agree with and support - which is really important. Best of luck to you with your strategy kicking cancer butt quickly!

Love
Chris

StephN · 04-29-2007, 01:59 PM

Hi Brenda -
Glad your med onc is one who will work WITH you instead of AT you.

In case you have not seen it - here is a link to the article in CURE magazine about the Proton Beam therapy. They have this option at M D Anderson, and I am sure you will be up to speed on what they offer for your brain mets.

http://www.curetoday.com/currentissu...sis/index.html

Esther also mentioned this treatment avenue for her latest met as they have this machine at Loma Linda. I had to look it up as it seems to be similar but a bit different from the Gamma Knife we have here.

hutchibk · 04-29-2007, 02:36 PM

Honestly, I was a little worried about hurting his feelings by questioning their plan (his and the rads onc). They are both really smart and wonderful guys, and are both "Texas Super Doctors" as voted by other doctors throughout the state. I ended up asking my onc's nurse ahead of time if he gets his ego ruffled when patients ask to be referred to MD Anderson. She is also wonderful and I am very close to her. She said no, he does it all the time if necessary. She has had metastatic thyroid cancer herself and self-referred to MD Anderson (before she worked for him), so she was able to give me pointers about what type of big med center it was and what to expect. When I went into the office to talk to him, I was afraid he would be mad at me. Like I said, in many ways he is a clone of my beloved deceased big brother - who I worshipped and was also a little afraid of, because he was so smart. My brother would chuckle if I questioned his opinion or solution to something, and would sometimes get a little exasperated with me (but he did always take my questions seriously and did give me my due). I feared that my onc might do the same thing. I definitely fell easily into my intimidated little sister stance. But I steeled myself, presented my research and my questions (some which admittedly did not apply) and he was very responsive, intrigued and informative. I felt very protected and cared for while talking to him. About half way through I asked if he was mad at me for butting up against his conventional wisdom, and he said of course not, that cancer is mostly "gray area" and therea are many different and viable approaches for every patient. We are pretty close. There is a bond there beyond Doc and Patient. We figured out 6 months ago that we lived 2 blocks away from each other when we were kids in the early 60's (in Arkansas), and he went to elementary school with my brother. They probably even rode bikes together or played little league together. He is invested in my longevity (as I know he is with all of his patients) and I trust that he wouldn't let me push for something that was a BAD idea. I felt like my brother was channeling through both of us on Friday... helping me find the confidence to stick to my approach and ask smart questions, and working through the doc to make sure that he communicated to me in a way that would resonate with me and make me feel heard and protected. He did finish our talk by telling me that I am "a very thought provoking patient" - I took that as a good thing!