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Scan results

janderson1964
Posts: 2215
Joined: Oct 2011

iT is a mixed bag. The 2 ablation sites from December still look great, especially the liver so that is great news. There was a small spot below my lung that showed up in December then was not visible in January, is not visible again but larger so most likely a metastasis. My IR said that is easily ablatable, so more good news. The tricky part is there is a spot between my liver, IVC, bowel, right kidney that has been there a while which they felt was scat tissue from my last liver resection. It grew some so my doctors agree it is most likely another met but in a tricky spot. My IR said he could ablate it with IRE (Nanaoknife) but would prefer that I try SBRT (Radiosurgery) first. If you all remember the problem with SBRT is that my insurance and and state turned me down for coverage.

So I have been busy today. I contacted my radiation oncologist and he said to set up an appointment and we will take another crack at the insurance company. If that doesnt work my IR will do nanoknife on it. Then I thought, what about surgery so I contacted my liver surgeon. He said surgery could be safer than IRE or SBRT. So I just sent him a copy of the scan priority overnight and see what he thinks once he looks at the images.

I see my oncologist tomorrow to discuss all of this. So right now I have 4 different doctors from 4 different hospitals looking into it and have options. Its just a matter of picking the safest most effective option and hope my insurance doesn't influence that decision.

I am going to discuss stopping chemo tomorrow since I will need to get my blood counts back up for what ever proceedures are in my future. I need a break anyway. 2 weeks and one week off of Xeloda is tuff. In one sence it is much easier than FOLFIRI or FOLFOX but I never feel 100% right doing the Xeloda marathon.

lp1964's picture
lp1964
Posts: 1238
Joined: Jun 2013

...its a mixed bag. You have a lot on your plate but you are handling it well. I always admired you methodical approach and as hard as it is, it has been working. 

Good luck Jeff and fill us in as the news is coming in.

Laz

janderson1964
Posts: 2215
Joined: Oct 2011

Thanks Laz. I take that as a real compliment from you.

Helen321's picture
Helen321
Posts: 1393
Joined: May 2012

It makes me mad that the insurance won't pay for a procedure.  I really wish all states would adopt the policy of treatment without payment.  It's the best thing NY ever did.  They can't say no.

jen2012
Posts: 1607
Joined: Aug 2012

Sorry Jeff.  Was hoping for a miracle...a clear scan.  please let us know what the onc says.

Easyflip's picture
Easyflip
Posts: 588
Joined: May 2013

away. Your story is pretty miraculous, sounds like you have a plan in place. Good luck and best wishes.

Easyflip/Richard

Trubrit's picture
Trubrit
Posts: 4883
Joined: Jan 2013

You always sound so calm. You're a reall trouper and a great example for all of us. 

I am happy that the ablated spots seem to have worked, but of course, wish that there were no other problems. 

I pray that you will be able to work out the best paln, and get any other worrying areas taken care of. 

You know we're with you all of the way. 

Sue - Trubrit

janderson1964
Posts: 2215
Joined: Oct 2011

Thanks. Dont let me fool you. I have my moments of extreme anxiety but i get over it quick or i wont get anything done. I have to keep my head together.

TheLadySkye's picture
TheLadySkye
Posts: 195
Joined: Oct 2013

*hugs you to itty bitty pieces*

I wonder if your insurance would pay for a flamethrower...

Kill it!  Kill it with fire!

:)

Annabelle41415's picture
Annabelle41415
Posts: 6236
Joined: Feb 2009

Sounds like the Good, Bad, but ultimately a resolution.  Hoping that all goes well with the doctor's appointment and that he can put you forth on a great path ahead.  You are a great warrior in this fight and admire your determination and strength.  Thank you for keeping us posted and wishing you the best dear friend.

Kim

herdizziness's picture
herdizziness
Posts: 3642
Joined: Apr 2010

And you're doing a fine job of it, I keep you in my thoughts most everyday, you give me encouragement when I get stuck in a rut By reading your posts.

Keep it up.  Glad you got some good news, good news is always, well... GOOD!

Winter Marie

janderson1964
Posts: 2215
Joined: Oct 2011

Thanks Marie, You know how I admire your strength as well. I see my oncologist today, should hear from my surgeon, and interventional radiologist today and see my radiation oncologist tomorrow.  I also got the name and number of an organization who helps cancer patients with insurance issues in case I need it. Not only do I want resolution to these two spots but I want it FAST.

lilacbrroller's picture
lilacbrroller
Posts: 412
Joined: Jun 2012

Hi - good luck with resolution of the new spots. Sounds like fighting with your insurance company is worse than what your T-cells are going through!  Sending happy vibes your way.

 

atb

Karin

janderson1964
Posts: 2215
Joined: Oct 2011

Thanks Karin. how is your trial going. Are you feeling ok these days.

annalexandria's picture
annalexandria
Posts: 2573
Joined: Oct 2011

but  there is a lot of good news mixed in there.  And I'm glad to hear that surgery may still be on the table.  I feel like at some point you're going to get ahead of this crap.  If anyone can do it, it will be you, my friend.

Keep us posted.

tanstaafl's picture
tanstaafl
Posts: 1292
Joined: Oct 2010

I would line up appointments with more surgeons now, to potentially save clock time.  We had to go through 5 surgeons, get more info and polish our answers, with 7+ interviews to finally get the right care.  

Fight for my love
Posts: 1530
Joined: Jun 2009

Janderson, you come up with a plan as always, you stay on top of things and being organized. Pray that everything will go smoothly. Best luck with everything.

janderson1964
Posts: 2215
Joined: Oct 2011

Surgery is out. My surgeon oncologist and interventional radiologist all agree on SBRT. it figures that is the proceedure my insurance and the state rejected. They think i have a chance for approval this time because we are going for one spot instead of three. We can get the other spot later with cryo. My wife said we will remortgage the house if we have. Right when we are within months of paying it off. I dont agree with spending all of that money for what could be only a temporary solution. This tumor is pretty serious though small. 

I mentioned it was beteen the liver bowel kidney portal vein and IVC. well it is actually starting to penetrate some of these structures. Worse part is the IVC is the main blood supply to the heart. But i still have options. I see the radiation oncologist tomorrow and am setting an appointment to go to Baltimore to see my IR ASAP so we can talk face to face.

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