Back to the drawing board...

[jmarie]

I was hoping to update great news but I can't do that today. I feel like I have became an expert at hoping for the best and preparing for the worst.

The tumors they were monitoring all had slight progression, keeping me at just under 20% overall progression. Unfortunately I have many new tumors. A few in my lungs and many in my liver all only a few mm each. The one that really pisses me of is that they believe I have a reoccurrance in my rectum. The report said wall thickening with the resemblance of a nodule. Recommended a scope to confirm. So I am off the study, no more globetrotting to Atlanta.

Sucks, no way around it. I had my little pity party this afternoon and am feeling better about it now. Although I wish I was sleeping. I just mainly feel mad for wasting so much time, energy and money on this. But I did know going into this that there was a 50/50 chance of getting the placebo. Well we don't know for sure I got the placebo but considering the results it is the most likely result. I see my local Onc on Thursday to start figuring out our next plan of action. I am leaning towards desensitization to oxaliplatin. Before my allergic reaction to oxi it cleared my colon and stopped the liver tumors from metabolizing. Hopefully it can work again. My ATL onc said there were some new studies I might do well on but I feel that I need to get on something I know could work and get this crap under control. Hopefully the desensitization works.

Although this truly sucks I have so much to be thankful for. My quality of life for the last 3 mos has been great. I have been able to travel quite a bit this summer, spending a few weeks win my sister and her babies. That was 2 wonderful weeks bonding with my niece. There was a time I didn't think I would live to meet her. Not only did I meet her I played with her, threw her in the air, read to her and even met her baby brother. The bottom line is, for stage IV with progressing disease I am in great shape, very active with no symptoms from the cancer. In 3 months I will be at two years post dx which I view as a huge accomplishment. A little bit nervous about the next steps but ready for whatever may come.

Now that I at least have a week off of chemo tomorrow I will have overeasy eggs for breakfast, a medrare steak for dinner with a few glasses of my favorite wine. Then I believe I will make some sangria to sip on the rest of the week. And of course running after my baby girl, which always brings a smile to my face.

[Gaelen]

Jessica, I wish that your response had been better. I know it might feel like a waste of time to have tried this, but know at least you know that Xeloda only for maintenance isn't really going to cut it for you. Did the trial docs say anything about perisophone compassionate use or are they not at that point yet?

Are you KRAS mutant so that Erbitux/Vectibix aren't options? Or have they just not been tried yet? If you're KRAS wild-type, those two drugs are options that you might want to consider at this point.

My strongest thoughts.

[BrownBagger]

I'm so sorry to hear that, Marie. Yes, we share the good news and the bad, and around here, it seems to come in streaks.

Get some sleep if you can. I'm finding that lack of sleep (for me, anyway) can be debilitating, and that's the last thing you (or I) need at this point.

Hang in there, friend.

[ams5796]

Yes, Jessica, sleep does help. Keep fighting, girl. You're doing all the right things. I am truly inspired by you.

Ann

[cindyc]

Your daughter is one lucky little girl!! You have such a positive, look-on-the-bright-side attitude that I know makes you a wonderful mother. Having a mother who truly enjoys just being in her child's presence is such a gift!

Your news makes me sad, but I really hope you and your team are able to come up with a plan that works and keeps you feeling great. In the meantime, enjoy those over-easy eggs and sangria. There are so many people pulling for you and your family!

[starbuck30]

Jessica,

This does indeed suck. So often since dx I've wished for a crystal ball to see the future so I could KNOW things like "do I NEED chemo", "will it work", "will I remain NED". Alas, no ball, so we just have to try things and do the best we can. At least you KNOW the test wasn't right for you so you aren't left wondering, "gee, if I'd done that test what would've happened?" Probably very small comfort now, I'm sure.

I've often admired your positive attitude here and I'm kind of in awe of it now. That, to me, may be one of our strongest weapons in this... what? Fight? Journey? Whatever it is, I feel strongly that a good attitude helps. I hope you can savor those eggs, that steak and wine, the sangria (God that sounds good), and the week off chemo. And I dearly hope you can get some sleep. Whenever you feel, please keep us posted with what your team decides for a next step.

Much love, hope, and support to you,
Starbuck

[daddys1]

sorry you didn't get the news you were hoping for...good luck to you on your next step

[SkiFletch]

Sucks Jessica, sorry to hear that. Just wanted to chime in that the oxali desensitization thing worked for me and I hope it can keep your histamines at bay and let the oxali nuke em till they glow

[Surroundedbylove]

Hi there,

I signed on today after being off the boards for a few weeks and wow - bad news all around. I'm sorry you've had progression. I echo the comment by Gaelen about compassionate use of the trial drug - I'd at least ask about it.

I'm glad you've gotten to have the good things this summer - those are wonderful times for you and for your family.

SBL

[joeyooser]

I'm sorry to hear that - I thought things had really started to look up after your last post. I really don't agree with this placebo business for cancer patients. Particularly since there would be all kinds of existing data on xeloda effectiveness, so the placebo arm really wasn't necessary for a comparison. Maybe you can get your hands on the real thing.

[jmarie]

Thanks everyone, I can't imagine going through this before internet made these support groups possible!

The study does not have a compassionate use stipulation(not sure if that's the correct terminology) so we have to wait till it gets approved by the FDA. It has been fast tracked so hopefully that will be soon.

One thing I have learned to do since starting this journey, is to really put the negative junk out of my mind and focus on enjoying my friends and family. I still have a few breakdowns but overall do much better and haven't even needed any ativan yet;-)

[NWgirl]

I'm so sorry. This isn't great news but as usual, you are facing the future with a strong will and strength that I don't know I'd ever come close to matching. You are one tough Mom. Hugs to your precious little girl and you enjoy your week off from chemo.

[hopeful]

jmarie, I'm so sorry to hear this news. Now that you're discontinuing the study do they ever tell you for sure whether you got the drug or pleacebo? My most thoughts and prayers are with you as you and your team figure out the next plan of attack.

[Terry]

I'm so sorry Jessica. I saw your post on FB yesterday but didn't want to ask questions, I knew when you felt like talking about it, you'd post.

I really think your making a wise choice by trying the desensitization. You knew it worked and I think your (just my opinion) right in trying to get this under control now before going on to another study. Kathrine did the desensitization and got through the treatments, hopefully you'll do the same. Most likely since you felt so good your probably right and received the placebo. I really wish there was a way for them to do a trial and give everyone the drug, it's such a gamble.

Your so much in my thoughts and prayers.

[Nanette]

I am so sorry, Jessica. That news just stinks! I also saw your post on Facebook as well. I wish there was more I could do for you. Everyone's giving you good advice here. You are also a very strong, positive person and that means a lot.

You are in my thoughts and prayers, as always...
-Nanette