Up date on Louann

my thoughts and ideas
Hi Louann,

I'm so sorry to hear what pain you're in and the time you're having. I'm wondering if you're taking that leftover Xeloda you have/had for the recurrence? Remember when I had my recurrence and we talked and I started myself back on the leftover Xeloda while I was waiting for appointments and the doctors, insurance, etc? Well, they gave me a CEA test right before I finally started the new treatment and my CEA had already dropped 20 points from the month before & the only thing I had done was take my self prescribed leftover Xeloda for the week and a half before then. I know we're not supposed to just put ourselves on something but, hey I was desperate then & had some leftover on hand, so I did it anyhow & it did seem to have an effect (if my CEA count meant anything- I think it did).
Just a thought, as I would hate for you to wait until mid June to even talk to anyone at MD Anderson. If you already haven't done so, call back MD And. and have them put you on the cancellation list- so if someone cancels, they will call you for an earlier appt. You can probably call them every couple of days to check on anything opening up too. I've done that before with the dr. I've consulted with in San Diego & also with my son's doctor (he used to have to take growth hormone) & it worked out a few times where I got in earlier than my original appt, even though I was told there was no way I could get in sooner. Do the same with the pain clinic- have a very calm and controlled voice when you call them- don't sound stressed or hysterical about wanting to get in sooner- I know you do, but I think it will come across to them better if you're calm, but still very persistent. Hopefully, your onc can have you on something for both the pain and for addressing the recurrence in the meantime- even if it isn't the best protocol, something would be better than nothing. On the other hand, I know for most clinical trials you have to be off treatment usually for 4 weeks prior, though, so you wouldn't want taking Xeloda or something else now to end up making you have to wait on starting a clinical trial- talk it over w/ your onc again, and tell him it really worries you to do nothing in the meantime (if that's the situation). Since your MD And. appt is almost a month away anyhow, there's your 4 weeks right there. But if you've already been off of all treatment for awhile, maybe you could even benefit from a couple of weeks of Xeloda or something now just to hopefully stop the cancer in its tracks- then go on your "wait time" for a clinical trial. If you could end up doing something like the gemzar with Xeloda like I'm doing, you wouldn't even need to do a clinical trial and have the waiting period with no treatment. Remember, if my insurance (Health Net) approved it, it doesn't neccesarily mean another ins. co will, but I would think that it has set precedent within the insurance industry. If you need help drafting a letter down the road to insurance or anything like that, let me know. I'd be glad to send you a copy of the letter I wrote to my insurance company & then you could just tweak it and add in details for your own situation. Definitely mention the gemzar (gemcitabine) with Xeloda (capecitabine) regimen to your current onc and when you go to MD Anderson. There were 2 clinical trials on it- the phase I trial had so-so results, but the phase II trial in 2006 at USC with Dr. Lenz had much better results. For whatever reason, the clinicaltrials.gov website shows "no results published" for the phase II trial, but Dr. Lenz told me the results when I consulted w/ him in Feb. I have a paper with those results (very poorly written and hard to read, unfortunately, but the results are there). If your onc hasn't heard of that regimen being tried on colorectal patients or is skeptical of it, tell him about me and how Dr. Lenz from USC/Norris Cancer Center highly recommended this for me since I couldn't get into a clinical trial at the time.
So far as the pain clinic, I still can't believe they said that- maybe you caught the receptionist at a very stressful moment for him/her, but they still should have known better. Again- can't your own onc still prescribe something stronger in the meantime while you are waiting?

Hugs to you Louann- take deep, calming breaths throughout the day. Dear- I can feel the stress oozing out of your posts- that's not helping your pain or situation any. I know it's easy for me to say- I'm not the one dealing with the pain and anxiety of the situation at the moment, but I know that stress like that is doing you more harm than good. you've got to find a way to calm yourself down, while still staying strong to be aggressive and get done what you need to get done. As we all know, no one really will fight for you- it's got to be done yourself, as I know all too well. Could maybe your onc prescribe something to you for the anxiety? Maybe ativan or something. Maybe find a yoga class to take- seriously. I know you're in pain, but then you just do what you can. Maybe even some acupuncture. The place where I go offers it for free for cancer patients. That's probably rare, but worth looking into. Some places will give that service for free to local cancer patients, even if they don't go to that cancer center. My office gives priority to their own patients but, if there's an opening, they will still give it to any cancer patient living within San Diego county. Look into that in your area.

Take care & know that I'm praying for you-
Hugs,
Lisa