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full plate over the next few weeks. UPDATE!!!!!!!!!!!

janderson1964
Posts: 2215
Joined: Oct 2011

I have a scan on 10/7.

I fly to Houston on 10/9.

See Dr. Suddiah about clinical trials at MD Anderson on 10/10.

See dr. Valez -Sanchez a gi specialist at MD Anderson on 10/13.

Get results back from genomic testing done in Mass. On 10/14.

See Dr. Conrad a radical liver surgeon at MD Anderson on 10/15.

I appealed to the state for SBRT.

I will set an appointment with Dr. Fred Moeslein in Baltimore about Nanoknife towards the end of the month.

Lots to think about after all of that. Gotta keep fighting. Best scenario is that the scan shows significant shrinkage on the liver tumor from y90.

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

you really are amazing!  If sheer grit can win the battle, I would say you've already won.

btw, I was reading something about the HAI pump recently...is that one you've looked in to?

janderson1964
Posts: 2215
Joined: Oct 2011

I have looked into it and will keep it in my back pocket for now. Thanks for asking.

YoVita's picture
YoVita
Posts: 590
Joined: Mar 2010

Good luck with your plan.

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

Yes, that is a lot, but this is the only life we got. I wish you the strength to go on and certainly the best of luck to succeed.

Laz

Yolllmbs's picture
Yolllmbs
Posts: 361
Joined: May 2014

That's probably a good thing. I will keep you in my prayers and wish for the best. 

 

Yolanda

fatbob2010's picture
fatbob2010
Posts: 467
Joined: May 2012

Jeff,

What a warrior you are to take on this grueiing schedule....

If anyone can do it and make good of it you can for sure.

Let us know how this all works out for you.

Best wishes,

Art

Cathleen Mary
Posts: 827
Joined: May 2011

Jeff,  I have nothing but admiration for you!  You have taught me a lot about perseverance. I will be praying for a good outcome and plenty of options.  We're scan buddies...mine is the 6th. 

Go Jeff!!!

CM

Annabelle41415's picture
Annabelle41415
Posts: 6247
Joined: Feb 2009

Sounds like you are going to be very busy.  You are fortunate though that you can get all this accomplished within a short amount of time.  It's too hard on someone when they are waiting weeks in between appointments.  Good luck with your scan.  Praying that it shows improvement.  Keep taking deep breaths to get you through all this.  Looks very overwhelming schedule so I'm wishing all of it goes well for you.

Kim

janderson1964
Posts: 2215
Joined: Oct 2011

I have 3 days in between appointments to vacation a little. I am thinking about renting a mountain bike one day and a Harley on another day.

Nana b's picture
Nana b
Posts: 3045
Joined: May 2009

Hang in there and I haven't forgotten you, well I did forget....but suddenly remembered. :). 

 

Take care. 

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

My chemo brain has a hard time remembering all the abbreviations! Good luck with your scan and your fight with the insurance company, it's a shame we have to do this while we're fighting for our lives and feeling sick. Oh well, the new normal.

UncleBuddy
Posts: 1019
Joined: Aug 2013

You're going to win this battle! I'm glad you were able to schedule all of this so quickly. Best wishes.

Lin

janderson1964
Posts: 2215
Joined: Oct 2011

Thanks for the kind and encouraging words Lin.

janderson1964
Posts: 2215
Joined: Oct 2011

I just found out that Dr. Choti a reknowned liver surgeon that I met at a conference from Johns Hopkins is now at UT Southwestern in Dallas. I am taking a long shot here but I have requested an appointment for him while I am in Houston. We'll see what happens.

Yolllmbs's picture
Yolllmbs
Posts: 361
Joined: May 2014

Don't stop amazing me. You're so proactive I love it! Good luck, cyber hugs. 

 

Yolanda

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

Hi. I saw Dr. Choti at JHU last year.  He looked at my scans and met with me but did not want to operate on my liver. He was really nice,though, and was highly recommended.  Hope you have success.

atb

Karin

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

good luck, jeff......

janderson1964
Posts: 2215
Joined: Oct 2011

I will be there for a week. I could send you my schedule if you are up to a visit.

janderson1964
Posts: 2215
Joined: Oct 2011

My oncologist told me he got the results from the Genomic test that Foundation One did today, about two week early. He said it is over 30 pages long and there are some interesting findings. The test analyizes a sample from a tumor and tests for ALL known genetic mutations in ALL solid tumors.

hippiechicks
Posts: 509
Joined: Sep 2012

Love your approach by pulling out the Tommy Guns! Very impressive! Using the resources wisely and getting to the best people you can! 

Very curious to hear about your recent genetic test results! 

Sending you tons of positive energy and cyber strength!

Hope you get that bike ride! 

Best of luck to you on your upcoming endeavors for positive news and flawless travels! 

janderson1964
Posts: 2215
Joined: Oct 2011

Thanks. I am mountain biking today

danker
Posts: 1191
Joined: Apr 2012

Hope all the tests show how to become NED!!! Good Luck!

janderson1964
Posts: 2215
Joined: Oct 2011

That's the plan and I am still fighting for surgery as well.

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

First thanks for thinking of me, second, DANG that is a full plate.

Glad you are keeping us updated, and hoping with all those appts., you find something that is extremely successful!!!

Enjoy that biking, I miss my kayaking and hope to get back to it soon.

hugs, 

Winter Marie

 

janderson1964
Posts: 2215
Joined: Oct 2011

Thanks marie. It is good to hear from you. Use your kayaking as motivation. Mountain biking used to be for fitness and fun but now that and motorcycle riding I use as motivation to recover faster from each treatment. It's been several months since I kayaked. I miss it but just can't find the time.

Momof2plusteentwins's picture
Momof2plusteentwins
Posts: 507
Joined: May 2012

Have a good flight tomorrow.  Hope you have success with all your appointments.  We will be thinking about you !

Sandy

 

janderson1964
Posts: 2215
Joined: Oct 2011

Update 10/10/14.

I got the genetic test back. It revealed 12 mutations 8 of which they matched to 13 trials or off label drugs. I had my scan this past Tuesday and am scheduled to review with my oncologist next week. But first off to MD Anderson. I went to the clinic today. Thay already obtained my records and I faxed them the genetic test results and past scan reports from 2014. I picked up the disc from my local hospital yesturday from my scan on tuesday and hand delivered it today to MD Anderson still not knowing the results myself.

First I must say that I was blown away by the cancer center and the whole Texas medical center as a whole. It was a whole city within itself. Everyone from the receptionist to the nurses, lab techs, and doctors were so friendly and smiling and the hospital wa so well organized and clean. I have been to several cancer centers and hospital all over the country and they all pale in comparison.

Anyway back to the story. I met with Dr. Subbiahs fellow first for a physical and to go through my history one more time in person. He said Dr. subbiah already had a trial for tageted therapy in mind for me based on the genetic test but first they wanted to know about my most recent san to see if a trial should be done at this point. I told him that I brought the disc and the nurse uploaded it into thier system but he felt it was better to have a consult with my oncologist. So he called my oncologist and to y surprise wa able to get him on the phone right away. They discussed the results which I almost didn't want to know because if it wa bad it would be really hard to tell my wife who is still back in Virginia and by herself until I get home. Anywas it turns out that my liver tumor shrunk 1.5cm in the past  months for a total of 2.5cm since I had y90 done and the chestwall spots had ery little change so they all agreed that I am still STALE and should stay the course of treatment for now while I am still responding. So no trials for now. But I am going to badger my liver surgeon again and I have a couple other cowboy type surggeons that I have been in contact with before this most recent news.

I also got a response from the state health department regarding my appeal  for insurance coverage for SBRT. They are looking for a more detailed response from me. So I laid it on them thick. I told them that I have seen 2 oncologist, 4 radiation oncologist, and 3 interventional radiologist from 6 different hospitals from Virginia to Seattle who ALL recommended SBRT for the chestwall spots. I listed all of the hospitals for them. So it is wait and see again on that.

Trubrit's picture
Trubrit
Posts: 4894
Joined: Jan 2013

it is good to hear from you, and really good to know that you were impressed with the facilities down in Texas. 

Great news about the liver met.

I hope you continue to be treated well by the specialists, and here's hoping your latest response will work with the insurance. 

Best wishes from England. Sue - Trubrit

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

Great to hear from you! Wow MD Anderson sounds like the Emereld City of cancer centers! Sounds like you're in good hands, let's hope the powerful Oz there has the answers you seek! Great news on the stale cancer. That's a funny description, here's to continued staleness! The whole SRBT thing is ridiculous. Their master plan is to give you so many hoops to jump through you trip on one and die from head trauma! Just kidding, you hit some arbitrary dollar amount and there is some accountant over there getting paid to stall you forever- don't let them! Good luck and keep us posted!

Easyflip/Richard

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

Your story is so uplifting. I love hearing about someone fighting so hard and making things happen and being so proactive. And that you're active. Some days it's all I can do to go out and brush my horse let alone ride him and many days I don't see him at all. Next year my plan is to take up a new discipline with him so I have a goal for next year. I also want to take motorcycle riding lessons even though I doubt I'll ever have one. My daughter has one and I'd like to know that I could ride it if I wanted to.

janderson1964
Posts: 2215
Joined: Oct 2011

I think a fighting attitude truly helps. The end of this month i will have officially survived stage IV for 9 years. I took a motorcyle riding class last September and got my lisence. Bought a motorcyle the following week have now put 3500 miles on the bike in a year. I love it. Its never too late to learn to ride. I actually got my lisence on my 49th birthday.

You have a lot of living ahead of you.

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

Wow! You rock!! By the way, I love your dog in the avatar, what kind of dog is that?

janderson1964
Posts: 2215
Joined: Oct 2011

The dog is an Italian Greyhound. The toy version of a greyhound. They only weigh about 15 pounds. We also have Weimaraners a parrot two dwarf goats and some ducks an chickens.

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

What a cutie! I love Weimarainers, too.

I owned a dog daycare and grooming shop until the cancer made me have to give it up so I'm a dog nut. We have four dogs, a pitbull, two pitbull crosses and a cocker/lab cross. They're all a bunch of lazy bums that lie around snuggled up together. Or play tugger in a group. My dream is to have an acreage again- we used to- and a pond and have the crested ducks with the pom poms on their heads. And have our horses there, of course.

UncleBuddy
Posts: 1019
Joined: Aug 2013

You are such an inspiration! Keep on fighting.  That's awesome! I have to tell my brother. He has been a little down lately. I think he's a little worried that they may stop his chemo. He keeps telling me he feels he can live to be 100 if he keeps on chemo. I let him have his dreams. I tell him it wouldn't surprise me because he already beat NHL.

Stay healthy.

Lin

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

Man. We need a like button on this network. 

Jeff, I LIKE the fight that reverberated throughout your plan. And thank you for sharing because it motivates me to think big in terms of fighting this disease.

Sending up some prayers for you.

 

 

janderson1964
Posts: 2215
Joined: Oct 2011

You inspire me as well surviving 2 cancers and recurrences.

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

I know this is a lot of action for anybody and I just wanted to express my appreciation on the hard work you do. Also wanted to cheer you on to keep going

until optimal resolution is achieved.

All the best man,

Laz

janderson1964
Posts: 2215
Joined: Oct 2011

Thanks Laz.

Cathleen Mary
Posts: 827
Joined: May 2011

Still praying for you.  What an inspiration! Going to Texas appears to be a good decision for you. Nine years is truly amazing....you are the symbol of what it means to be proactive.

Enjoy biking....be careful!

CM

janderson1964
Posts: 2215
Joined: Oct 2011

I just read the scan report myself. One chestwall lesion shrunk 3mm. The other "is not visible". My oncologist sais it wasremarkable.

Trubrit's picture
Trubrit
Posts: 4894
Joined: Jan 2013

what great news. 

May everything continue to improve to the point of miraculou.

sue - Trubrit

Yolllmbs's picture
Yolllmbs
Posts: 361
Joined: May 2014

Keep up the good work!

 

Yolanda

 

marbleotis's picture
marbleotis
Posts: 700
Joined: Mar 2012

Wow - you are laser focussed and super organized.  Your plate and a few buckets are full.

You are a truely empowered patient!

janderson1964
Posts: 2215
Joined: Oct 2011

My surgeon is going to look at my scan tomorrow. This will be my third attemp at getting him to operate. At least he is always willing to consider it. I am also going to talk to my interventional radiologist about another dose of y90 followed by RFA on the liver tumor.

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