Scan results

janderson1964
janderson1964 Member Posts: 2,215 Member

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.

Comments

  • lp1964
    lp1964 Member Posts: 1,239 Member
    As you said...

    ...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

  • Helen321
    Helen321 Member Posts: 1,459 Member
    It makes me mad that the

    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
    jen2012 Member Posts: 1,607 Member
    Sorry Jeff.  Was hoping for a

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

  • Easyflip
    Easyflip Member Posts: 588 Member
    Keep plugging

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

    Easyflip/Richard

  • Trubrit
    Trubrit Member Posts: 5,796 Member
    Chin up and march forward

    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
    janderson1964 Member Posts: 2,215 Member
    lp1964 said:

    As you said...

    ...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

    Thanks Laz. I take that as a

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

  • janderson1964
    janderson1964 Member Posts: 2,215 Member
    Trubrit said:

    Chin up and march forward

    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

    Thanks. Dont let me fool you.

    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
    TheLadySkye Member Posts: 203 Member

    Thanks. Dont let me fool you.

    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.

    *hugs you to itty bitty

    *hugs you to itty bitty pieces*

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

    Kill it!  Kill it with fire!

    :)

  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    Good and Bad

    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
    herdizziness Member Posts: 3,624 Member
    Just keep plugging away

    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
    janderson1964 Member Posts: 2,215 Member

    Just keep plugging away

    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

    Thanks Marie, You know how I

    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
    lilacbrroller Member Posts: 412 Member

    Thanks Marie, You know how I

    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.

    good luck

    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
    janderson1964 Member Posts: 2,215 Member

    good luck

    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

    Thanks Karin. how is your

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

  • annalexandria
    annalexandria Member Posts: 2,571 Member
    I'm so sorry the results weren't what you were hoping for, Jeff

    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
    tanstaafl Member Posts: 1,313 Member
    mo'

    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
    Fight for my love Member Posts: 1,522 Member
    Janderson, you come up with a

    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
    janderson1964 Member Posts: 2,215 Member

    Janderson, you come up with a

    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.

    Surgery is out. My surgeon

    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.