Up date on Louann

lcarper2

My apointment at MD Andeson will be june 14,15,16 not confirmed as of yet but they said it won't be any sooner. I am still raising the money to go. God has been very good to us and I won't give up no matter how bad I am feeling and I can't get into a pain mgt doctor until the 26th of this month. it is very sad that we have to suffer like we do. the pain center told me today that they don't care how bad I am hurting they do apointments and if that is not good enough than go some where else...I just cried when they said that and thought how well will they treat me if they don't care, but what am I to do. I am not here much because of the pain can't sit very long...but I am praying for each of you.

Nana b

My heart aches!
I will send you pain meds!!!!

geotina

Louann
Are you currently doing any treatment for your recurrence?

I would call the onc's office about the pain problem, perhaps they can speed things along for you. I know when George's doctor makes a call, things move much faster.

Take care - Tina

lcarper2

geotina said:

Louann
Are you currently doing any treatment for your recurrence?

I would call the onc's office about the pain problem, perhaps they can speed things along for you. I know when George's doctor makes a call, things move much faster.

Take care - Tina

pain
well his office is the one that got me the apointment for the 26th and I called them and was told they don't care how much pain I am in take the apointment or go some where esle (paim center told me )

lcarper2

Nana b said:

My heart aches!
I will send you pain meds!!!!

LOL
I am on morphine out the butt but need a pump thank u sweetie but black and white stripes would make both our butts look big

AnneCan

You are in my thoughts,
You are in my thoughts, Louann. I am sorry you are going through this.

Paula G.

Oh Louann this is awful. Is
Oh Louann this is awful. Is there a hospital you could go that has Onc's that might see you and help you with the pain until you can get in?
Lisa had a good idea maybe that could help. I hate to see you suffer.I have been thinking about you alot. I am hoping things get better for you real soon.
Some places are just ****. Our first Onc's office was awful too. Good luck

lisa42

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

HollyID

Louann,
I've been praying for you every chance I get. I know that this is hard, but I think Lisa had a great suggestion. Call MD and see if there is a cancellation list, and also one for the pain clinic. Plus, calling your current onc to see if he can prescribe something a bit more for the pain. Nobody should be living in pain. It does horrible things to our bodies. Our blood pressure rises, our immune system shuts down, etc.... I'm thinking he would think the same thing. I also think you would benefit from anti-anxiety meds as well. Give him/her a call and let them know what kind of pain you're in. There's much better stuff out there than morphine.

geotina

Louann
I completely agree with Lisa only she put into words so much better than I did. You found out about your recurrence several weeks ago and if memory serves, your onc wanted to start chemo and you indicated you wanted it "cut out". Waiting yet another month for Anderson may not be in your best interest. I agree with Lisa, talk to your oncologist about starting some type of treatment now to stop it in its tracks while waiting on Anderson. Remember, once you get to Anderson you may still have to wait a bit for a treatment plan. Of course there is the possibility that Anderson cannot "cut it out" and may suggest chemo first to get things more stable.

I, also, can sense your anxiety in your post and past several posts. This, coupled with your diabetes and (if memory serves) your pancreas and bile duct are now involved, increases the anxiety which increases the pain. None of this is good for you, you need something to help you relax, get some quality rest, and this will help also with the pain.

Wishing you nothing but the best whatever course you chose.

Take care - Tina