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janderson update

janderson1964
Posts: 2215
Joined: Oct 2011

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.

Phil64's picture
Phil64
Posts: 835
Joined: Apr 2012

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

janderson1964
Posts: 2215
Joined: Oct 2011

Thanks Phil. Love and light to you as well.

BTW janderson stands for Jeff Anderson.

Phil64's picture
Phil64
Posts: 835
Joined: Apr 2012

I knew that. I'm so silly.  Sorry Joe. just kidding. Jeff. Please forgive me.

Trubrit's picture
Trubrit
Posts: 5192
Joined: Jan 2013

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

janderson1964
Posts: 2215
Joined: Oct 2011

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

jen2012
Posts: 1607
Joined: Aug 2012

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.

janderson1964
Posts: 2215
Joined: Oct 2011

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.

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annalexandria
Posts: 2573
Joined: Oct 2011

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!

janderson1964
Posts: 2215
Joined: Oct 2011

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.

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Easyflip
Posts: 588
Joined: May 2013

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
Posts: 2215
Joined: Oct 2011

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.

janderson1964
Posts: 2215
Joined: Oct 2011

Thanks Richard

Fight for my love
Posts: 1530
Joined: Jun 2009

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
Posts: 827
Joined: May 2011

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
Posts: 2215
Joined: Oct 2011

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

janderson1964
Posts: 2215
Joined: Oct 2011

Thanks for keeping us in your prayers

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maglets
Posts: 2596
Joined: Jun 2006

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

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Yolllmbs
Posts: 361
Joined: May 2014

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

janderson1964
Posts: 2215
Joined: Oct 2011

Thank you for your prayers and kind words Yolanda.

janderson1964
Posts: 2215
Joined: Oct 2011

Thank you so much for your kind words (As always). You know your thoughts/words mean so much to me Mags.

NJC
Posts: 72
Joined: Nov 2010

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.

janderson1964
Posts: 2215
Joined: Oct 2011

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.

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ron50
Posts: 1729
Joined: Nov 2001

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
Posts: 2215
Joined: Oct 2011

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

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

Hey, Jeff! congrats on beating the system/insurance company.  Always a good thing!

And, welcome to the trial!

atb

Karin

Brenda Bricco
Posts: 579
Joined: Aug 2011

Jeff, I am so excited that you are headed for the SBRT, it worked so well for my Husband on a very tricky tumor. The best part is that he said that the hardest part was stayingin the machine for the 45 minutes, but other wise no side affects at all. His first scan after treatment was clear, his next is this Thursday and will let you know when I know how it looks. His last CEA was at 9, wish it were lower but so grateful for where we are. You will be in my prayers. Also, did I see you mention some lab going up which was good (MCV) what is that?

The t cell treatment makes me think of a report I watched a couple of weeks ago about injecting the polio virus into tumors to get the immune system to attack tumors and was having great success. Have you heard anything about that, or anyone else?

Thanks for being such a pioneer for us all. :)

 

janderson1964
Posts: 2215
Joined: Oct 2011

MCV (Mean Corpusal Volume) is part of CBC test. I am only doing Xeloda right now and there were a couple of studies that rising MCV was a good indicator that the Xeloda is working kind of like the rash with Erbitux or Vectibix. Karin is the person who is getting ready to do the T-cell trial. I have read about and followed the vaccines for over a year now. The problem with them along with a lot of these immunotherapies that are having great success is that the success rate is good for Melanomas and blood cancer but no so good for colon and other solid cancers. They are having to come up sith drug cocktails to go with the vaccines and immuntherapies to hopefully get a better response from colon cancer which is being studied and worked on. I believe the T-cell trial that I mentioned and that Karin is getting ready to start didn't look good for colon cancer initially but they have been tweaking it by harvesting the patients own tumor and T-cells. Modifying the T-cells to attack certain mutations found in the patients tumor and then injecting the T-cells back into the patient. This is true personalized treatment. It is kind of like letting a hound dog smell the scent from an article of clothing that a missing person was wearing so the dog can track the person.

It looks like we are on the brink of some exciting break throughs even for colon cancer. My oncologist said I just need to hang on for another few years. 

Brenda Bricco
Posts: 579
Joined: Aug 2011

The study I saw the documentery is at Duke... started out using it on brain tumors. I remember them saying that it was being used successfully on other tyoes of cancer and colon cancer was mentioned. I googled it quick and found this link...   http://www.cancer.duke.edu/btc/modules/Research3/index.php?id=41

hippiechicks
Posts: 509
Joined: Sep 2012

Thanks so much for the update!! I have been thinking of you and your journey a lot .. the insurance issue is just aweful!  Why they do this to people with so many other things on their plate is disturbing.

The trial sounds awesome!  I have been so interested in this movement with immunology since I first heard of it a few years back.  My onc. laughed with his nurse over it when I brought it up for his thoughts.  I lost all respect for him that day.  Laughing at such a serious, life changing, radical movement to possible cure of this horrific disease? Really doc? I found a new oncologist. I am so very pleased to see things are getting better for you in the fight. 

I will be keeping you in my thoughts and prayers!

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Annabelle41415
Posts: 6525
Joined: Feb 2009

Thank you for the update and it sure sounds like like you have a lot going on.  I'm praying that all of your future treatments go great.  You sure are a positive person and love that you keep fighting for your rights.  Don't ever back down.

Kim

janderson1964
Posts: 2215
Joined: Oct 2011

Thanks Kim. I feel that I am not just fighting for my rights but all of our rights living with cancer.

UncleBuddy
Posts: 1019
Joined: Aug 2013

I'm so glad that things are heading in the right direction. You just keep on plugging away. I really hope they're able to get it all out so that you can be NED FOREVER! Stay as positive as you have been! Good luck!

 

Lin

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traci43
Posts: 775
Joined: Jul 2007

Hope these treatments work, and that you can get into the trial, if that's what you want.  I think if I had tumors, I would be heading that way.  Sounds promising.  Good luck and I hope they figure out the rib issue.  Traci

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herdizziness
Posts: 3642
Joined: Apr 2010

SRBT is something I'll be asking my oncologist about tomorrow.  As always I appreciate your I for and keeping us updated on how you are doing.

Winter Marie

janderson1964
Posts: 2215
Joined: Oct 2011

I am approved for SBRT as stated above but the machine is down at the hospital I was approved at so I am playing the waiting game. In the meantine NIH contacted me and they are testing me for 5 different immunotherapies including the one TIL that Karin is doing. I am not saying it is time for me get on a trial yet but it is always good to test the waters and get as many irons in the fire as possible.

sflgirl
Posts: 220
Joined: Jan 2015

hopefully for a very short time.

Best of luck to you with SBRT, very promising.

Andrea

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YoVita
Posts: 590
Joined: Mar 2010

Congratulations on your fight with the insurance company.  I hope you get a good response from the strategies you're trying now.  You are a trailblazer for the rest of us.  

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