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  #101  
Old 02-28-2016, 07:05 AM
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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.
  #102  
Old 03-01-2016, 12:39 PM
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Originally Posted by usedtobe View Post
Just a quick note:

For buttons: if you can operate a hemostat, get a small one.
Insert tip through button hole and grip button.
Pull button through buttonhole
Release button.

This works for arthritis.

Best wishes
There are devices custom-designed for this as well:
http://www.arthritissupplies.com/but...ping-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.
  #103  
Old 04-26-2016, 12:40 AM
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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.
  #104  
Old 04-27-2016, 05:11 AM
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I want to second (third?) this. I don't react well to sedation, and did it cold sober, and it wasn't bad at all. There was moderate pain when they inserted the scope -- less than some dental stuff, but crampy instead of sharp. The actual exam is done as they pull the scope out, and that wasn't even uncomfortable, I barely felt it. You lie comfortably on your side, mostly draped in a medical gown. It's not a weird or humiliating position. The doctors are interested in the inside of your gut, and they are interested in a professional way. The nurse is concerned with keeping you safe and comfortable. If there's an anesthesiologist, that person is concerned with your breathing and heart rate, and, like the nurse, concerned with your safety and comfort. And the whole thing is quick.

All the GI doctors I know (and I know several, as that was my dad's field and I have had some GI issues) are prompt about getting their own colonoscopies. That tells you something.
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!
  #105  
Old 04-27-2016, 11:50 AM
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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.
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.
  #106  
Old 05-09-2016, 04:00 PM
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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.
  #107  
Old 05-09-2016, 04:13 PM
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I hope the news is better than you fear. Have you started work on arranging the consult at USC?
  #108  
Old 05-09-2016, 04:27 PM
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Fingers thoroughly and firmly crossed for you.
  #109  
Old 05-09-2016, 05:14 PM
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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.
  #110  
Old 05-09-2016, 05:25 PM
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Everything crossed for you.
  #111  
Old 05-09-2016, 08:29 PM
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I'm so sorry you have to go through this. Again.
  #112  
Old 05-10-2016, 01:31 AM
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Fingers thoroughly and firmly crossed for you.
^ This.
  #113  
Old 05-10-2016, 05:00 PM
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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!!!!!!
  #114  
Old 05-10-2016, 06:36 PM
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Ugh.

Hugs and best wishes.
  #115  
Old 05-10-2016, 08:16 PM
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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.
  #116  
Old 05-10-2016, 08:31 PM
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Aw, crud. There isn't much more else to say but I wanted you to know I'm thinking of you. Hugs.
  #117  
Old 05-11-2016, 09:09 AM
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I am so sorry, Maggie. {{{hugs}}} You'll be in my thoughts and prayers.
  #118  
Old 05-11-2016, 09:56 AM
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Wishing you the best, Maggie.

Your username always makes me smile.
  #119  
Old 05-11-2016, 03:54 PM
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I am sorry to hear that you have had a setback. Wishing you all the best.
  #120  
Old 06-25-2016, 04:57 PM
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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.
  #121  
Old 06-26-2016, 04:02 PM
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Hang in there, Maggie. I join the others sending good thoughts.
  #122  
Old 06-27-2016, 09:16 AM
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I hope you're okay as well.
  #123  
Old 06-28-2016, 05:14 PM
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Hey y'all,

Thanks for the thoughts - I just had my 1 year anniversary since diagnosis, and I'm still chugging along.

I started chemo again on 6/10, but because my numbers are still so low they're giving me a much milder dose - before I had been given 3 drugs (Xeloda, Avastin, and Oxaliplatin), but this time they're not giving me the Oxaliplatin, though they've bumped up the dose on the Xeloda. Oxali is the one that was causing all the nerve damage before - it's a seriously heavy hitter, does wonders for tumor-killing, but it's also got the worst side effects.

Only one session so far, but the side effects have been really low, so hopefully it's working because I can totally deal with them.

I did have one scare where I went to the ER because I was exhibiting some of the "get to the hospital now" symptoms, but it turned out okay. I 1) hadn't pooped in a week 2) was throwing up when I ate or tried to poop and 3) was having seriously painful gut cramps. Worst-case scenario would have been that the main tumor had grown enough that it had obstructed my colon, which is, as I noted early in this thread, Very Bad. However, when they did an Xray and an MRI, it turned out that I was just hella constipated from the Avastin. They gave me some stuff to clean me out, and it eventually resolved. That was scary, though.

Anyway, things are good. I leave on the night of the 4th for NYC, and I should be able to enjoy the trip pretty well, as long as I remember to take my stool softeners so I don't get that backed up again.

That's great news about your friend, SciFiSam! I've heard about the Whipple procedure - it's drastic as hell, but sometimes, as in this case, it works really well. I wish her many more years of NED!
  #124  
Old 06-28-2016, 06:30 PM
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Yay Maggie!
  #125  
Old 06-28-2016, 06:52 PM
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Thanks for the update

I hope you have a fantastic 4th of July weekend!
  #126  
Old 06-28-2016, 07:32 PM
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Originally Posted by Maggie the Ocelot View Post
....
I did have one scare where I went to the ER because I was exhibiting some of the "get to the hospital now" symptoms, but it turned out okay. I 1) hadn't pooped in a week 2) was throwing up when I ate or tried to poop and 3) was having seriously painful gut cramps. Worst-case scenario would have been that the main tumor had grown enough that it had obstructed my colon, which is, as I noted early in this thread, Very Bad. However, when they did an Xray and an MRI, it turned out that I was just hella constipated from the Avastin. They gave me some stuff to clean me out, and it eventually resolved. That was scary, though.
...
And when the cleanout started working, that was probably pretty damn scary itself .

Good to hear from you, and I'm glad the side effects have been easier this time around. Any resolution on the neuropathy from before?
  #127  
Old 06-29-2016, 09:32 AM
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Good to hear from you, and I'm glad the side effects have been easier this time around. Any resolution on the neuropathy from before?
It's gotten a lot better - still there, I don't know if it'll ever go completely away, but a lot better and continuing to improve. It's a combination of time away from the Oxali and the medication that I'm on to combat it.

However...if the current chemo schedule doesn't work, it looks like I'll be going back on the Oxali, which means it'll start creeping back up again. Joy.
  #128  
Old 06-30-2016, 01:11 AM
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Sending good thoughts your way Maggie.
  #129  
Old 06-30-2016, 01:26 AM
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Good to hear from you, Maggie!
  #130  
Old 06-30-2016, 03:43 AM
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There's a book in this.
  #131  
Old 12-11-2017, 05:43 PM
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Update Time!

Apparently the current chemo cocktail has curbed its curative course, and consequently cancer has once more come calling. My tumor markers are still in the normal range, but since June they've been creeping up to the very edge of normal. My oncologist has suggested that I switch treatments - instead of Xeloda and Avastin, he's restarting me on Oxaliplatin (one of the first drugs I was given, it worked very well but the side effects were pretty bad) and moving me from Xeloda to the IV form of basically the same drug, which is called 5-FU in that format. I'll be continuing the Avastin, too.

So that's gonna be fun. My current regimen has very few side effects - just neuropathy, high blood pressure, and hand/foot syndrome - and has allowed me to have a pretty much normal life. Once the Oxali restarts, I'll be feeling like crap a good percentage of the time. Also, 5-FU has slightly different side effects from Xeloda, despite being very similar, so that is an unknown. Good times.

This was expected to happen eventually - cancer mutates quickly to work around the drugs we use to fight it, that's kind of cancer's "thing". Still, after two years of being able to live mostly like a not-sick person, I had gotten used to it, and part of me figured I could just keep going on like that semi-indefinitely. No such luck, dammit.

I plan to keep going on and going on as long as I can manage it. I'm still working full-time, and my work is aware of my situation and very willing to accommodate me, plus I have a fuckton of vacation/sick time, so that's good.

Also, there are studies saying that exercise does a lot toward keeping cancer patients alive, and if we get the dog then he'll need to be walked, which is exercise! And I hate exercise and won't do it for myself, but I would for the pup. So that might help!
  #132  
Old 12-11-2017, 05:46 PM
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Good luck Maggie and here's hoping you tolerate the cocktail a little better the second time through .


p.s. - Ocelots are my favorite small felid

Last edited by Tamerlane; 12-11-2017 at 05:47 PM.
  #133  
Old 12-11-2017, 06:14 PM
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By all means, get a dog, if it'll make you exercise when you don't want to. I friggin' hate exercise too, so do whatever works.

Thanks for the update.
  #134  
Old 12-11-2017, 07:42 PM
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Oh yes, please get a dog. In fact, maybe you should get two dogs who need to be exercised on different schedules.

Or just one Siberian Husky fresh off her win in the Iditarod. And when it snows, you can buy her a sled, put her in it, and pull her around. Who says exercise can't be fun?

Hoping for the best.
  #135  
Old 12-11-2017, 07:42 PM
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Well, shit! I'm sorry to hear this. I hope things go more easily than you expect.

Even if you don't end up with the little guy from your other thread, I hope you'll consider finding another dog, for both the exercise and the cuddles.
  #136  
Old 12-11-2017, 07:48 PM
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Sending healing thoughts your way Maggie. I hope you can tolerate the new plan without too much difficulty.
  #137  
Old 12-11-2017, 07:54 PM
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Thank you for the update. When I saw your other thread, I did wonder how things were going. I think your little guy is just the right dog for you. Big enough for walks and fun, and small enough for cuddles and quiet time. Best wishes for the new regimen. It sounds tough. Let us know if we can help (cards, puns, cat pictures).
  #138  
Old 12-11-2017, 08:13 PM
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Will you be on the same dosage of oxali? Maybe you'll be on a smaller dose in combination with the other drugs, and won't have as bad side effects.

Here's wishing you the best of luck. You're doing great!

Off to find the dog thread...

StG
  #139  
Old 12-11-2017, 09:59 PM
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Originally Posted by Sunny Daze View Post
Thank you for the update. When I saw your other thread, I did wonder how things were going. I think your little guy is just the right dog for you. Big enough for walks and fun, and small enough for cuddles and quiet time. Best wishes for the new regimen. It sounds tough. Let us know if we can help (cards, puns, cat pictures).
Great idea! I'm in!
  #140  
Old 12-12-2017, 12:07 AM
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Sending positive energy, good thoughts, and prayers, Maggie.
  #141  
Old 12-12-2017, 04:03 AM
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Sorry that you have to endure this.

I was wondering if you made a "bucket list". If you did, what
was on that that list? Were you able do cross off as done any
of the items on the list? I hope this question is not too intrusive.
If it is, please don't feel that you have to answer it.

Wishing you the best of luck.

- X. L. Lent
  #142  
Old 12-12-2017, 08:37 AM
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I missed this when it was fresh and new.

Hey, Maggie.

Anything we can do?

ETA: How would you like people to remember you, or for that matter how do you like folks to think of you while you're still here and stuff?

Last edited by AHunter3; 12-12-2017 at 08:38 AM.
  #143  
Old 12-12-2017, 08:47 AM
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Sorry that you have to endure this.

I was wondering if you made a "bucket list". If you did, what
was on that that list? Were you able do cross off as done any
of the items on the list? I hope this question is not too intrusive.
If it is, please don't feel that you have to answer it.

Wishing you the best of luck.

- X. L. Lent
Maggie stated upthread (first page, I think) that she thought it was wasteful to spend money on a "bucket list", when they needed it. Here's her quote:
Quote:
For the same reason, I'm not planning on doing a lot of extravagant "bucket list" stuff. It seems foolish and irresponsible to waste that money on experiences for someone who's gonna die soon, instead of saving it for the needs of those who will have to continue on for decades afterwards, y'know?
StG
  #144  
Old 12-12-2017, 09:52 AM
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Sending good thoughts your way. Best of luck. Staying as well-fed and as exercised as your digestion and energy levels will support is worth a lot. It has survival value, but beyond that it has massive morale value. Maximize your quality of life. Which probably includes puppies.
  #145  
Old 12-30-2017, 03:32 PM
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Just a bump to let Maggie know that we have all been thinking of her. She has not posted for a bit but hopefully will be back soon, with or without a curly haired dog in tow.
  #146  
Old 01-11-2018, 09:14 PM
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Just another bump to say I think of Maggie frequently and hope she is doing well. I am sorry that you have had to deal with this turn of events.
  #147  
Old 01-16-2018, 09:46 AM
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Thank you for the good wishes!

The chemo is...just as fun as I remember it being, ie no fun at all. Yay. On top of that, we're moving (to a place that will let us have the dog) so I'm dealing with packing on top of everything else. Fortunately we're hiring a moving company, but we still gotta pack ourselves. *sigh*

Also, they did an MRI and found two new spots in my lungs, which are probably responsible for the uptick in tumor markers. Stupid spotty lungs.
  #148  
Old 01-16-2018, 01:19 PM
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Originally Posted by Maggie the Ocelot View Post
Thank you for the good wishes!

The chemo is...just as fun as I remember it being, ie no fun at all. Yay. On top of that, we're moving (to a place that will let us have the dog) so I'm dealing with packing on top of everything else. Fortunately we're hiring a moving company, but we still gotta pack ourselves. *sigh*

Also, they did an MRI and found two new spots in my lungs, which are probably responsible for the uptick in tumor markers. Stupid spotty lungs.
Good to hear from you, but BOOO on the spotty lungs .

If you can manage the cash, seriously consider having the movers do at least some of the packing for you. I honestly think you'll find it to be money well spent. We did it with our last move - no cancer or chemo, but 2 young kids, 2 stressed working parents, and zero energy to spare. It added a few hundred to the cost but it was well worth it. Yes, you'll still want to pack the really critical stuff (china / crystal / computer) but the sheer amount of work in packing *everything* yourselves is so daunting and disheartening... The move itself is overwhelming enough - save yourself stress any way you can manage.

Last edited by Mama Zappa; 01-16-2018 at 01:21 PM.
  #149  
Old 01-16-2018, 03:51 PM
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I'll echo Mama Zappa's recommendation. I did this when I moved my parents up here. I just made sure that they were well plied with tea and got fed at lunchtime.
  #150  
Old 01-16-2018, 09:41 PM
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My sister is 10 years since her treatment for breast cancer, about 7 since her 2nd go-round with thyroid cancer. She saw her oncologist this week for her annual check. Her blood cancer markers have gone from 0 to 3.7, which is above high normal. She's going to redo the blood test in a month to see if possibly it's an anomaly, then start scanning.

Thrilled y ou got the dog. What did you name him? Let's see some pics!

StG

Last edited by StGermain; 01-16-2018 at 09:42 PM.
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