Regorafenib week #2

[KarMel]

Good stuff:

Had my second appt in Ann Arbor. Last week, a number of folks got a wee bit excited cause my Bilirubin jumped up to 2.8. My liver enzymes have been trending down. I am not jaundiced, in spite of what two "trying to be helpful" friends said So words like bile duct blockage and liver failure were being tossed around.

So this week, my bilirubin is down to 2.1, my liver enzymes are almost back to normal. And, I have quit taking my pain pills.
This might be wishful thinking, but could the drug be shrinking my liver tumors this quick. I don't know how else to explain the pain getting better.


Bad stuff:
I have lost too much weight. The doc was not happy. I have no appetite and nothing tastes good. Any fatty food causes bad indigestion. I explained all that, but I still got one of those "looks." And then the oncology nurse said words that are guaranteed to make me barf on the spot...Boost, Ensure, Carnation instant breakfast. Triple yuck.

I have a bad cough. I got a chest xray that showed no infection, but it is very annoying. I am doing breathing treatments to see if it will resolve. Keep thinking its allergies, but my allergy pills don't help.

Hand/foot syndrome has started, though only on feet, in my case. This I can deal with.

Can;t think of anything else for now.

[las]

Karmel,
Your such a trooper. I know this is serious stuff, but I couldn't help myself laugh when I read:

"And then the oncology nurse said words that are guaranteed to make me barf on the spot...Boost, Ensure, Carnation instant breakfast. Triple yuck."

I sure hope its working like a charm, that will be the best gift of all. when will they be doing a CT scan etc to see what its doing?

Praying for you Karmel, kick some ass baby............ '


Thank you so much for keeping us posted on your progress thru this as none of know what to expect and its so interesting to hear from one of our cc members

Lisa

[lohidoc]

Good stuff:

And then the oncology nurse said words that are guaranteed to make me barf on the spot...Boost, Ensure, Carnation instant breakfast. Triple yuck.

Couldn't agree more! Kind hearted souls gave me several cases of the stuff after my surgery. I tried evrything, mixing with fruit, turn them into smoothies, cannot eat the stuff. Try steak and chocolate!

But very encouraging about the liver enzymes and the reduced pain. That might just be a very encouraging sign. Take heart. Are you still working?

[Ashlee H.]

They are so hopeful regarding this drug, I'm sure the tumors are shrinking. Fatten up girl (I know, easier said than done) - you don't want to be kicked off the drug. I'm surprised with all the side effects, because I always heard there were none or very mild ones. But doesn't sound that much worse than the chemos we are now using...and if this works - it would be worth the side effects. Thanks for taking the time to keep us informed, and thanks for taking the drug. You are a true Warrior in the battle.

[Phuong]

And then the oncology nurse said words that are guaranteed to make me barf on the spot...Boost, Ensure, Carnation instant breakfast. Triple yuck.

Ugh! Ensure just came out with a new product a few months ago and my friend said the peach flavor wasn't too bad. It's a clear juice like product instead of a shake. Maybe that will help? I also made myself some super food pudding with Isagenix shakes and protein powder. I just added less soy milk and some Swiss Miss hot chocolate powder then refrigerated. It actually tasted good! Ashlee is absolutely right - you don't want to get kicked off so fatten up! xoxo

[jenny B.I.L.]

Hi KarMel, wishing you luck and hope this stuff kills them tumors. I had cancer not CC and was on tx for over a year and i too was told put weight on, i made my own milkshakes, and ate chocolate it put the weight on. Good luck with it all.

[jorusi63]

I appreciate your updates about the regorafenib, Karmel. My hubby's oncologist has said that he'd like to put him on this when it becomes available, so the information that you are giving is priceless!

[Guinevere]

Thanks for updating us, KarMel (or I've started to think you - the CC Guinea Pig) ,
Is it all milk products that just don't sound like you can get them down?? I know I went through that last summer during neoadjuvant chemo (Xeloda). My sister started mixing the Vanilla Carnation Instant Breakfast with ice and water and I was able to choke it down. It would usually take me about 30 minutes or so. Just a thought. I guess you could do that with juice as well. I dunno.
I hate to hear that hand/foot is part of the side effect of this chemo!!! Crap! You know the drill though - udder cream with Vitamin E squeezed into it, socks, yada yada yada...
So glad the pain's gone! That part is a definitely plus and it makes the regimen sound really promising.
You're in my thoughts ~
Guinevere

[RixInPhx]

Thanks for the update, I was surprised to hear of all the side-effects.

Weight loss isn't good, and if fatty foods are too tough on the digestion, then you must load-up on carbs for enough calories.
Chocolate, fruit, anything with regular sugar; you know the drill by now.
Try grocery-store low-fat chocolate milk if you're not lactose-intolerant; much tastier than the dry mixes.

Stay strong and hang in there!
-Rick

[Fede]

Hi, Markel

You are doing it well, go ahead, I hope something soon to be chronic this old disease.

The best for you

Fede.

[fritts44]

Now it's official that I'm strange --I love Carnation Instant Breakfast.

Are you feeling nauseous or are you having digestive issues? Or do you just not have an appetite? When I was on chemo, I constantly felt hungover (the naseau), so I ate greasy cheeseburgers. I gained weight but they made me feel better. Maybe hangover-helper foods would help for you?

I do hope you continue to tolerate it & I'm in total admiration of what you're doing. That would be amazing if Rego is working that quickly! I hope it's that amazing!

Lee F

[Bev G]

Hi KarMel,

Sending you admiration and love, and hoping the nausea goes away very soon. Are you taking anything like Prilosec? I'm so happy for you that the pain is going away--I think all those dying cancer cells took it with them on the way out THANK YOU for doing this for yourself, and for all of us stage IVs!

Love,

Bev

[danomal]

Great news, KarMel, regarding your diminished pain as well as the improved liver enzymes and bilirubin number! How is the fatigue factor? This is probably overly simplistic, but oftentimes I would feel better by just going ahead and eating (thanks to my wife ), even when I absolutely didn't want to. Thanks for updating all of us, hoping and praying for continued improvement!

[RayGirl]

Glad to hear the pain is reduced. Hopefully you'll find something to but on the wait. I was particularly good customer for the cupcake truck that liked to stop outside my office. My doctors said if it sounds good and you'll eat it then eat it. We'll worry about the healthy stuff later, just get some calories now.

[smokeyjoe]

Hi there, I'm going to ask a couple of really dumb questions so bear with me....did they tell you how long you'd be on this drug?? Will it be till they see progression? What if this knocks the heck out of your cancer and you're NED on scans, will you be kept on the drug or taken off? I'm also on the csn board and there is one fellow who has been on avastin for many many years.....will they keep you on this drug indefinitely as long as it's working for you? Thank you in advance