Poke Me With A Fork...

[Guinevere]

It looks like I'm done with chemo. I'm copying and pasting from my post on the Stage IV thread but I know not everyone checks that thread.

We found out today that the mets in my liver have multiplied and there are now 6 known tumors in my liver. My last scan showed 2 tumors and those tumors have almost doubled in size. I knew when I started this last chemo of Irinotecan and 5fu that is was the last option I had. My liver is inoperable but my blood test show that my liver’s still functioning well. I will see my oncologist once a month to make sure everything copasetic until such time as I have to go to hospice care. This is a great comfort to me as my onc and I have developed a good relationship and we’re on the same page about Quality of Life issues.

Frankly, right now, I’m a little numb. I’ve been talking to family most of the day to let them know before it was on the internet. I know God will be with me every step of the way, lending me strength to do what needs to be done but this is an unknown road because everybody’s different. There’s not real “road map” and that does scare me a little.

I’m still planning on seeing Christmas through the Princess’ eyes and even have hopes I’ll see her turn a year old next January. I got to see her after our onc visit. She’s growing like a weed and is now grabbing my fingers and pulling up! She knows both her grandpa and me. Amazing!

I knew this day would come. I just didn’t know when it would get here. I was so nauseated yesterday and today before I got the results. Oddly enough, I haven’t been nauseated since. My mouth has been doing well since Sunday and, since I’m not going to be on chemo anymore, I figure it will heal pretty quickly so I got some Cheetos today. I ate a couple of them this afternoon and they were delicious! So now, I’m going to look forward to my mouth healing, my skin clearing up from having chemo skin, my feet and hands getting better and maybe some of the fatigue will abate. That would be fantastic!

I'm still finding blessings in the day and that's a comfort too. I think as long as I can do that, my time will be more productive and sweeter than if I just concentrate on how long I might or might not have. That's in God's hands - not mine.

God bless ~
Guinevere
(Mighty Queen sticking her tongue out at the Beast! )

[Voxx66]

Is y90 not an option for you? It isn't magic but at the least it might buy you some more quality time to spend with your family. Whatever is your path I wish you peace and comfort.

[Cherie]

I hate hearing this news I do hope you feel a bit better with no more chemo. Is the HAI pump not an option if you only have tumours in the liver???

[ams5796]

You seemed to have come to terms with this news, now we have to get on board. I wish you peace and comfort and many more days with the Princess.



Ann

[Nester]

Hi gwen,

So sorry to hear this. But if it makes you feel better everything has an end, and everything will have new start.
Personally i'm not too scared that there will be an end, but rather how it will come.I guess i'm more scared about suffering than dying.
I wish you can buy more time with your princess anyway, there are some trials , perhaps you could qualify?

A big hug, and my best wishes for a confortable future.
M.

[O Stoma Mia]

... I'm still finding blessings in the day and that's a comfort too. I think as long as I can do that, my time will be more productive and sweeter than if I just concentrate on how long I might or might not have. That's in God's hands - not mine...God bless ~ Guinevere

[michelle c]

Gwen,

I'm sorry that the news wasn't better. I wish that they could operate on your liver. I pray for peace for you as you go forward and for many, many happy times with your precious grand baby and family. Love and hugs to you.

xoxox

[Cat]

Thanks for posting this, Gwen, so we all would see. I'm so very sorry to hear your news, but also so very glad you are still seeing the blessings in your life. You certainly brought a tear to my eye with your post. I look forward to reading your post about Christmas with your family. You are such a special person.
Cat
dx: 2010 stage 111cc
surgery
concurrent chemo and radiation
surgery
recurrence 2012
folfox
surgery (took kidney and gallbladder)
currently ned

[Maia]

Oh, Gwen, no... so sad to hear this. I'll send my love for you seeing Xmas with the princess and good quality of life. (((Gwen)))

[Badass]

Hi Gwen,
I can't quite wrap my mind around this news. I feel sad as you have been a steady and gentle presence on the board and in my life. I am inspired by your attitude. Sending you love and many, many hugs. Share one or two with the Princess!

Jane (Rusuja)

P.S. Could Kemeny and the pump be an option? Just wishing!

[Maia]

Gwen, I'm back. Since others are brainstorming, I'll add to it.
I won't propose you any new chemo combination because quality of life, neither going for an immunotherapies trial at MD Anderson (since you're in Texas) because it would mean trips each two weeks, or going to New York. But I hate that you're not offered other options with liver only disease, and with good liver panel numbers. I want to mention this. There is a new approach to liver lesions, similar (but different) than y90 or SIR spheres. It's HAI (hepatic arterial infusion) but doesn't imply a pump -it's a procedure, a 'sort' of chemoembolization. It's called DEBIRI or intra-arterial infusion of irinotecan-loaded drug-eluting beads (ha! LOL).
In the procedure, they infuse tiny beads (*really* tiny...70-150 microns) loaded with irinotecan (in the mCRC case) to deliver chemotherapy agents directly, into liver tumor(s) via the hepatic artery. This allows for continuous release of irinotecan into the liver tumor tissue(s) causing necrosis of the targeted tumor(s). It's not systemic irinotecan, it has not its side effects, it doesn't matter if you 'failed' irinotecan (I prefer the idea that irinotecan failed you, BTW).
One of the best places to ask if this is viable for you (maybe it's not, of course) is the Baylor University Medical Center at Dallas, where J.D. Meler, MD, interventional radiologyst works. He's on the consultants of the developers of the tiny beads, has tons of procedures done. I'll try to put together a post about DEBIRI but just wanted to mention this to you asap. I'll PM you the contact info for dr Meler... give him just a call, who knows. Apparently, he works in Baylor, Dallas, and also has an office in Waxahachie, TX.

(In the meantime, for the curious: DEBIRI: http://www.ncbi.nlm.nih.gov/pubmed/22493375 http://www.ncbi.nlm.nih.gov/pubmed/20740319 Trial at the Johns Hopkins: http://clinicaltrials.gov/ct2/show/NCT02015754
the device http://www.btg-im.com/products/usa-323/ ... c-bead_m1_ Dr Meler in the vid http://www.btg-im.com/products/usa-323/ ... d_m1-video )

[NWgirl]

The news none of us ever wants to hear. I'm so sorry Gwen - this just sucks. My next scan is in mid June. I'm going to the 2015 Colondar Photo Shoot (to help with the writing portion of the project) and I told my oncologist I don't want a scan before that because I don't want to have to deal with that mentally and emotionally while I'm there - because I fully expect growth and spread. After that, I'll deal with whatever comes - not that we have much choice. I agree that you'll feel much better without the chemo wreaking such havoc on your system. Funny isn't it - feeling better, yet knowing what's ultimately coming. Enjoy every moment you can with your precious princess and enjoy those Cheetos. One of my favorite guilty pleasures. Especially with a Diet Coke.

[Hall0731]

Gwen,

I am so sorry to hear this news. I wish that your liver was operable. I am sure you have already seeked out second and third and probably 4th opinions. I am sending love and peace in this time of need for you. I hope the road is soothe sailing for you in whatever decision you finally take.


Hugs,

Teresa

[Guinevere]

Thank you all so very much.

I know that my onc served her residency under the head oncologist at Baylor Medical in Dallas and she consults with them not only about my case but about other cases as well. I will check into this avenue though.

With the heart disease, I've found that a lot of treatment options aren't an option for me. Add to that that I'm uninsured and can't afford insurance and pay on my medical bills (Catch-22 anyone??) and I don't qualify for any assistance so we have to work within those parameters. It doesn't bother me as much as it initially did because people through the ages have had to make life and death decisions based on their financial reality as well as their other physical limitations.

Belle, I think that your approach to your next scan is right on! No sense in having the doom cloud hanging over you while you're having a good time and trying to be encouraging to others!

I slept alright last night but didn't sleep long. I guess my mind doesn't want to waste a minute! Oh well, seize the day even if I don't feel like seizing anything other than some Zs.

God bless ~
Gwen

[drebay]

Gwen,

I hope that you can feel the hugs that all of us are sending to you. You are one of the first that I "met" here.