Ask the woman with stage 4 colon cancer! [update - Maggie has passed away]

I too am wishing you the best, Maggie.

I have diabetic neuropathy, so I don’t know if this could help you, but I take 600 mg of r-alpha lipoic acid daily. It has helped with the pain, but not the numbness. On the rare times the pain surfaces, I use 5% Lidoderm patches.

And I did get my colonoscopy done, thanks to you posting this thread.

There are devices custom-designed for this as well:
http://www.arthritissupplies.com/buttoning-and-zipping-aids.html

I don’t know what the cost is versus a hemostat, of course, but that site might well have other things you’d find useful.

eclectic wench: interesting on the cold caps. I had no idea that was such a new thing. 25+ years back, a colleague’s mother was being treated for cancer and she mentioned them using something like that on her mom. Maybe it was in research, or they just used it as a matter of course even if not proven, or whatever.

I think the theory is that it reduces the amount of blood flow to the scalp, reducing the exposure of the hair follicles to the chemo-laden blood.

Maggie - how are you doing?

I stumbled across this article today while looking up something else on the Washington Post, and thought of you - the person featured in the article had a hellish time with chemo for colon cancer, and wound up finding out that the dosage and regimen were all wrong for her.

I think I’ve posted before about the hellish chemo reactions.

My father had colon cancer and died rather quickly. Quality of life sucked in his day, probably no different these days.

I wish chemo could be replaced. Horrible!

Good luck and I really feel your pain, thanks for your courage!

Oh and colonoscopies without meds? ah, no, they did it to me that way, I had no idea that they werent, painful for me and especially at the turn, I’ve even felt that pain with anesthesia. How fucking dare they do it that way without asking me. Later that day I learned that the technician noted on my file to make sure I always get anesthesia!

The anesthesia is the best part of the whole process!

Woah! That is really bad - both her reaction to the meds and her doctor’s lack of availability. Fortunately, I see my oncologist literally every time I have chemo, before the IV goes in, and we discuss the latest symptoms, my blood test results, etc.

I’m still doing alright. The cancer is in partial remission - it’s not gone, but it’s still not growing, so I’m still not back on chemo yet.

We’re taking it in about 6 week chunks - I get a blood test every 6 weeks, and an MRI about every 12 weeks, and if either the tumor markers in my blood or the visuals on the MRI show significant* increase, I’ll start on FOLFIRI. My next blood test and MRI are scheduled for 5/2, so I’ll know more then.

While I’m in waiting mode, I’m considering going outside Kaiser to get a 2nd opinion - there’s a really good doctor at USC that specializes in colorectal cancer who I’d like to get a look at my chart - but it’s expensive and a hassle so I haven’t made the arrangements yet. I really should get on that.

*Last MRI, the tumor in my lung was less than 1mm bigger, but because the growth was so small and the tumor marker in my blood was within normal (non-cancerous) range, we decided it wasn’t a big enough deal to restart chemo over.

Or, maybe not. Poop has been getting skinny again.

I had a MRI on the 2nd, we’ll see if it’s still good. I’m not hopeful.

I hope the news is better than you fear. Have you started work on arranging the consult at USC?

Fingers thoroughly and firmly crossed for you.

Well, since you originally mentioned Avastin in your chemo regiment, I thought you might want to be aware of another side affect that I failed to be informed of.

I had a minor stroke a month ago. That was interesting in a couple ways. Besides not knowing what was going on, I couldn’t contact anyone for help. I couldn’t even remember how to call 911!

Been making great progress I think. Didn’t think to contact my oncologist, thinking that the two were unrelated. Then, last week I mentioned it to the in take nurse that takes. She got wide eyed and before I knew it, I had all kinds of people filling that room. Seems Avastin is a the likely culprit. Awaiting more confirmation and testing am currently on a vacation from Avastin.

Wasn’t noted in the side effects, but you can easily research matters on your own by adding Avastin and stroke to your search chain.

I’m not sure if I’d prefer to deal with cancer or a debilitating stroke.

I now understand your difficulties and frustrations trying to write. Different reasons, but same results.

Everything crossed for you.

I’m so sorry you have to go through this. Again.

^ This.

Talked to my oncologist, the blood test confirmed that my CEA (tumor marker) levels are up again. Not by a lot, but higher than officially normal.

So I start up chemo again soon - probably the first Friday in June - he said it’s not too much of a rush, and I have a wedding up in Sonoma on the 29th, so we’ll wait until after then. I’m still scheduled to meet with him on the 20th, and we’ll firm things up then.

WHEEE!!! :frowning: :frowning: :frowning:

Ugh.

Hugs and best wishes.

Haven’t been around the forum for a bit and just today was thinking about you and thought I’d check in. I’m so sorry you have to start chemo again; wishing you an easy time of it this go round.

Aw, crud. There isn’t much more else to say but I wanted you to know I’m thinking of you. Hugs.

I am so sorry, Maggie. {{{hugs}}} You’ll be in my thoughts and prayers.

Wishing you the best, Maggie.

Your username always makes me smile.

I am sorry to hear that you have had a setback. Wishing you all the best.

Haven’t seen anything from you for a month so hope everything’s OK.

A friend of mine has recently had a NED - no evidence of disease - result. She has/had pancreatic cancer that had spread to the bones and liver, and she had to have half her digestive system removed in a Whipple procedure, then six months of aggressive chemo. Nobody expected a NED after that - it’s statistically unlikely. The disease will come back, but now she has some time to be with her loved ones.

I know she was given hope every time she read about someone beating the odds, so I hope it does for you too.