janderson update

janderson1964
janderson1964 Member Posts: 2,215 Member
in Colorectal Cancer #1

I had some encouraging news but a while back but wanted to wait out of respect for the passing of Craig. I you recall 3 weeks ago I had a routine scan. The 2 ablations still looked good especially the liver but there were 2 spots tha have been questionable and now have grown so they have to be dealt with. The spot on the bottom of my lung my Interventional Radiologist said he can definately ablate with cryo. He said he could get the tricky spot between my liver and IVC with Nanao knife but reccomends that I first do SBRT on it. I had my liver surgeon and oncologist look at it and they all felt SBRT was the best approach.

Well if you call the problem I have with SBRT is the last ime I applied for it for my liver and chest wall, I was turned down for insurance coverage even when I appealed it to the state insurance bureau. I reminded my doctors of if but they felt there was a chance this time due to the tricky location, we are only going for one spot as well. Thankfully I was granted coverage this time within a week. We didn't even have to go through the internal insurance company appeal.

I really hope this will help folks in the future to keep fighting when they have insurance issues.

So I see the radiation oncologist today to do the 3-D scan and get fitted for the body mold. Then they will go over treatment wchedule which should be within the next 2 weeks. As soon as I have the dates I am going to get on the phone with my Interventional radiologist to set up cryo for the lung spot.

I am getting ahead of myself. There is a trial going on at NCI in Bethesdaa that Karen is on which sounds real promising where they surgically remove a tumour and some of your immune system T-cells, Then they harvest the T-cells to grow new cells to attack certain mutations found in the tumour and inject the cells back into you. This is cutting edge true personalized treatment. I am trying to get into it but to have a chance I have to have a removable tumor whech I do in the lung. Also I took a chemo break and was supposed to start Xeloda again but might not be a good idea IF I can get into this trial. A lot to think about.

To make matters a little more interesting, my rib pain has come back again on my right side that I have been dealing with for 1 1/2 years. All the doctors said it had to do with the chestwall tumor towards my back that was ablated. That tumor was pushing on and damaged intercostal nerves which start at your spine and run all the way to the middle of you abdomen. The thing is I cexamined myself where the pain is on the side, and it is very tender to the touch and the rib is either bulging out or swollen. The bulging swelling is somethin I have noticed on and off since last summer. I have also felt a popping sensation in that area a couple of times. This could be what they call a slipped rib. I looked at all of my scans in the past 9 months. There seems to be what appears to me a good amount of swelling around the rib, more so when the pain is worse depending on what scan I look at. That area has NEVER been mentioned in any of my scan reports, and I have had close to a dozen doctors from different hospitals and specialties look at it and no on ever mentioned what I am seeing. So I am hoping it is not a concern for metastatic disease. I am going to push the issue this week. I have converted images from 4 different scans to PDF and dimensioned the area which I will show to my radiation oncologist today and send to my Interventional radiologist and medical oncologist. I has come to the point that it has to be dealt with no matter what it is. Hopefully not cancer since that will just complicate my current plans.

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Comments

  • Phil64
    Phil64 Member Posts: 838 Member
    #2
    Joe,
     
    You are in my

    Joe,

     

    You are in my prayers. I pray that the best treatments will become very clear and the insurance will NOT be an obstacle! And thank you for sharing as you help us all learn about many different treatments in this war against cancer.

    Love and Light to you my friend!

    Sincerely,

    Phil

  • Trubrit
    Trubrit Member Posts: 5,804 Member
    #3
    Stalwart

    This is how I think of you. 

    What an example of positive outlook. With all that you have gone through, are going through, your outlook remains positive and upbeat. You are a true and worthy example of a stalwart member of our special family. Thank you! 

    I pray that all will go well with the different procedures you are about to have. I also pray that you will be accepted into this new trial, if this is right for you. Thank goodness, you persevered with the insurance. They are a bigger pain than the Cancer sometimes. 

    I know you will keep us posted, and I'll keep you in constant prayer. Oh, I would freak out having to be in a body cast thingy. 

    Sue - Trubrit

  • jen2012
    jen2012 Member Posts: 1,607 Member
    #4
    Thanks for the update Jeff.

    Thanks for the update Jeff.  You really are a great advocate for yourself.   I give you  a lot of credit for searching out all of these options and picking the best one for you.  I too have been following Karin's progress.  It's exciting!

    Good luck today.

  • annalexandria
    annalexandria Member Posts: 2,571 Member
    #5
    This is very exciting!

    The new approaches with the T-cells is just amazing.  A study using that technique with a blood cancer was completed here at Children's Hospital in Seattle recently, and out of the 22 patients (all of whom were in a very bad way), 20 have achieved complete remission.  That's pretty freaking amazing.

    Craig would be so happy for you, Jeff!

  • Easyflip
    Easyflip Member Posts: 588 Member
    #6
    Wow

    Immunotherapy and personalized care really seems more and more the future. Good luck and thank you for being a pioneer if you get into the trial. I hope your rib is nothing, I would think after a year and a half of pain a met would have shown up by now. Good luck, seems like you're on the right path!

    Easyflip/Richard

  • janderson1964
    janderson1964 Member Posts: 2,215 Member
    #7
    Easyflip said:

    Wow

    Immunotherapy and personalized care really seems more and more the future. Good luck and thank you for being a pioneer if you get into the trial. I hope your rib is nothing, I would think after a year and a half of pain a met would have shown up by now. Good luck, seems like you're on the right path!

    Easyflip/Richard

    I emailed my oncologist

    I emailed my oncologist looked at the images I sent him this morning. He feels is is slipped rib syndrome which is what I thought. He said the images aren't showing a mass so he is not concerned about it.

    I had to delay the initial setup for SBRT by a week. They called and said the machine was down. It's a little bit of a let down but there is nothing I can do about it so I am no concerned. It will happen soon enough.

    I just had bloodwork this morning and surprisenly my platelets dropped 10 points instead of going back up as I expected after a 2 1/2 week chemo break. Maybe my spleen is acting up again.

    The good news is that my MCV keeps rising which is a good indicator that the Xeloda is working. Not sure what to do now. I am about to email my oncologist.

    I emailed NCI again about the trial but still no response.

  • Fight for my love
    Fight for my love Member Posts: 1,522 Member
    #8
    Hi Jeff, thank you for this

    Hi Jeff, thank you for this update, sounds like everything is moving. You always impress me with the way you advocate yourself and how quickly you take action. Best luck with everything. I will keep praying for you and everyone else in the forum.

  • Cathleen Mary
    Cathleen Mary Member Posts: 827 Member
    #9
    Fight for my love said:

    Hi Jeff, thank you for this

    Hi Jeff, thank you for this update, sounds like everything is moving. You always impress me with the way you advocate yourself and how quickly you take action. Best luck with everything. I will keep praying for you and everyone else in the forum.

    Jeff,
    Thank you!! Everytime

    Jeff,

    Thank you!! Everytime that you advocate for yourself, you advocate for all of us. It pushes doctors to think again and pushes us to think again. You truly serve us all well.

    I am thrilled that the insurance company wasn't another hurdle this time and I will certainly pray you get a response that will benefit you from the trial. Karen is paving the way.

    Craig is rooting for you.

    CM

  • janderson1964
    janderson1964 Member Posts: 2,215 Member
    #10
    Phil64 said:

    Joe,
     
    You are in my

    Joe,

     

    You are in my prayers. I pray that the best treatments will become very clear and the insurance will NOT be an obstacle! And thank you for sharing as you help us all learn about many different treatments in this war against cancer.

    Love and Light to you my friend!

    Sincerely,

    Phil

    Thanks Phil. Love and light

    Thanks Phil. Love and light to you as well.

    BTW janderson stands for Jeff Anderson.

  • janderson1964
    janderson1964 Member Posts: 2,215 Member
    #11
    Trubrit said:

    Stalwart

    This is how I think of you. 

    What an example of positive outlook. With all that you have gone through, are going through, your outlook remains positive and upbeat. You are a true and worthy example of a stalwart member of our special family. Thank you! 

    I pray that all will go well with the different procedures you are about to have. I also pray that you will be accepted into this new trial, if this is right for you. Thank goodness, you persevered with the insurance. They are a bigger pain than the Cancer sometimes. 

    I know you will keep us posted, and I'll keep you in constant prayer. Oh, I would freak out having to be in a body cast thingy. 

    Sue - Trubrit

    Thanks Sue. I am honered to

    Thanks Sue. I am honered to receive such a big compliment from you.

  • maglets
    maglets Member Posts: 2,576 Member
    #12
    Jeff

    Jeff you are truly amazing to me.....it is a wonder and a priviledge to read your path and your advocacy.....I so admire you.  Just as others have said you really blaze a path for others here.  I am not sure I would have the wit or energy to lift a finger compared to what you are researching and causing to come about.....

    sending love ......mags

  • Yolllmbs
    Yolllmbs Member Posts: 360 Member
    #13
    maglets said:

    Jeff

    Jeff you are truly amazing to me.....it is a wonder and a priviledge to read your path and your advocacy.....I so admire you.  Just as others have said you really blaze a path for others here.  I am not sure I would have the wit or energy to lift a finger compared to what you are researching and causing to come about.....

    sending love ......mags

    Jeff

    You're a perfect example of fighting for our treatments,  Advocating is so easy when it's for someone we love.  I admire you're strength in fighting for your own insurance and doctors.  My prayers and good wishes.

     

    Yolanda

  • NJC
    NJC Member Posts: 73 Member
    #14
    NIH Trial

    JAnderson,

    Make sure you ask a lot of questions about that trial. We looked into it a few months ago and they've had 15 people go through it and only one had a response. That response came from a tweak in her treatment due to a glitch that was specific to her situation. Not saying to not do it, but the side effects are pretty nasty from the killing of your immunity to the infusion of the new T-Cells. It took the Research Coordinator about a week or more to get back to us after we waited the requisite week for her to call us and we reached out to her.

    Food for thought..best of luck.

  • ron50
    ron50 Member Posts: 1,723 Member
    #15
    When the going gets tough

    Jeff gets going. The first rule of survival is ensuring you survive and you do that admirably. You have and always will have my best wishes for good results from your treatments and my wishes for a long and healthy future. All te best mate. Ron.

  • janderson1964
    janderson1964 Member Posts: 2,215 Member
    #16
    ron50 said:

    When the going gets tough

    Jeff gets going. The first rule of survival is ensuring you survive and you do that admirably. You have and always will have my best wishes for good results from your treatments and my wishes for a long and healthy future. All te best mate. Ron.

    Thanks Ron. That means a lot

    Thanks Ron. That means a lot to me coming from the ultimate survivor.

  • janderson1964
    janderson1964 Member Posts: 2,215 Member
    #17
    NJC said:

    NIH Trial

    JAnderson,

    Make sure you ask a lot of questions about that trial. We looked into it a few months ago and they've had 15 people go through it and only one had a response. That response came from a tweak in her treatment due to a glitch that was specific to her situation. Not saying to not do it, but the side effects are pretty nasty from the killing of your immunity to the infusion of the new T-Cells. It took the Research Coordinator about a week or more to get back to us after we waited the requisite week for her to call us and we reached out to her.

    Food for thought..best of luck.

    ZThanks for the advice. I had

    ZThanks for the advice. I had read that about the failures but supposedly they have corrected a lot of the problems. I figured it was going to be brutal. I noticed they also list 3 chemotherapies and the fact that you have to stay in the hospital for 3 to 4 weeks tells me it's brutal.

  • janderson1964
    janderson1964 Member Posts: 2,215 Member
    #18
    jen2012 said:

    Thanks for the update Jeff.

    Thanks for the update Jeff.  You really are a great advocate for yourself.   I give you  a lot of credit for searching out all of these options and picking the best one for you.  I too have been following Karin's progress.  It's exciting!

    Good luck today.

    It is exciting what they are

    It is exciting what they are coming up with these days. I just hope they can perfect one of these immunotherapies/vaccines soon before our time runs out.

  • janderson1964
    janderson1964 Member Posts: 2,215 Member
    #19
    annalexandria said:

    This is very exciting!

    The new approaches with the T-cells is just amazing.  A study using that technique with a blood cancer was completed here at Children's Hospital in Seattle recently, and out of the 22 patients (all of whom were in a very bad way), 20 have achieved complete remission.  That's pretty freaking amazing.

    Craig would be so happy for you, Jeff!

    That is a great statistic

    That is a great statistic Anna but I have read about so many of these type of treatments that have worked great on blood cancers and melanoma but failed on colon cancer. It seems that colon cancer is a lot more evasive.

  • janderson1964
    janderson1964 Member Posts: 2,215 Member
    #20
    Easyflip said:

    Wow

    Immunotherapy and personalized care really seems more and more the future. Good luck and thank you for being a pioneer if you get into the trial. I hope your rib is nothing, I would think after a year and a half of pain a met would have shown up by now. Good luck, seems like you're on the right path!

    Easyflip/Richard

    Thanks Richard

    Thanks Richard

  • janderson1964
    janderson1964 Member Posts: 2,215 Member
    #21
    Cathleen Mary said:

    Jeff,
    Thank you!! Everytime

    Jeff,

    Thank you!! Everytime that you advocate for yourself, you advocate for all of us. It pushes doctors to think again and pushes us to think again. You truly serve us all well.

    I am thrilled that the insurance company wasn't another hurdle this time and I will certainly pray you get a response that will benefit you from the trial. Karen is paving the way.

    Craig is rooting for you.

    CM

    I know that Craig is looking

    I know that Craig is looking down and rooting for me.

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