UPDATE on scan - Read for lab info

Kathleen808
Kathleen808 Member Posts: 2,342 Member
edited September 2013 in Colorectal Cancer #1

Dear Friends,
I apologize for posting and then deleting the post.  We had not talked to our daughter yet and I did not want any news to get out on social media.  She is away at college and we spoke to her yesterday evening. 
****'s pet scan on Friday showed growth in lung mets (largest is now 2.2cm), enlarged lymph nodes (we think that is why the leg was swollen) and growth on his adrenal gland.  We were quite shook up on Friday and of course I came right to you.  Then I realized we had not told our daughter and I pulled my post.
We are meeting with ****'s local onc tomorrow and calling Sloan Kettering back.  Some of you remember that **** was all set to go to Sloan last fall and hurricane Sandy hit.  We were going to a doc who was going to find a new chemo mix for ****.  Once we were cancelled because of Sandy, they said to call back when there was growth.  So, I am calling Sloan tomorrow morning.
We are going to have a biopsy of a lymph node done and then we want to do all the tests on the biopsy.  I believe it is DNA testing and tests to see what specific drugs kill ****'s specific tumor.  We know there is a lab in Greece and one in LA.  Who has had these specific tests done?  Can you please send me the info?  We know that the cancer changes to "get around" the chemo and that there may be drugs used for different types of cancer that will work better on ****'s current cancer.  All information is appreciated.
I'll be in touch.

Aloha,
Kathleen

Comments

  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
    #2
    Dear Kathleen

    I am so very sorry to hear this news and I can understand how concerned you both must be at this time.

    I would suggest that you ask Sloan for their lab of choice for the testing.  It will help in the long run for them to have results from their trusted lab.

    My sister's surgeon had this done on her tumor, but I was not impressed with the results...and neither was her onc. so will pass on giving you their name.

    I hope that Sloan can get him in quickly and the tumor testing reveals something new and good for treatment plan.

    While I am a bit away from NYC in Virginia, when you are there if you need anything don't hesitate to let me know.

    Hugs and prayers for you all,

    Marie who loves kitties

  • herdizziness
    herdizziness Member Posts: 3,624 Member
    #3
    Kathleen

    Wish I had info on a good testing place for you, but I haven't had it done, maybe inquiring at Sloan will get you on the path to a reputable and reliable testing facility?

    I glad you have Sloan to go to. I'm sorry that you all have to deal with again.  Thinking of you both and sending positive thoughts and wishes your way!!

    Winter Marie

  • Trubrit
    Trubrit Member Posts: 5,804 Member
    #4
    Rolling

    I'm so sorry that **** is experiencing new met growth. 

    This horrible cancer is nothing but a scary roller coaster ride. Sometimes we chunter upwards with our good days and good news, only to plumet down the other side when the news is negative.  It takes our breath away and we have to sit back and get our equilibrium back so that we can move forward again.

    I am glad that he has a wonderful companion by his side, and wonderful family and friends to help him along on this journey.

    We're all here for you to of course. 

    Blessings.

  • Bee bee
    Bee bee Member Posts: 27
    #5
    So sorry to hear this news

    Hoping for the best with testing.

    I'm early in my cancer journey but am planning to do tumor testing too so I thought I would share what I've found.

    There are two places in SoCal- Rational Therapeutics in Long Beach and Weisenthal Cancer Group in Huntington Beach. I'm in the OC so both are local to me. Their approach makes sense to me because it is testing on your actual tumor, not just genetic testing. They see cancer as a sort of metabolic process where each individual's biology, metabolism & tumor microenvironment, not just our genes, are very unique. The cost is approx $3500 and unfortunately, I don't think most insurance will cover it but it may be worth a try.  

    I've read testimonials on their websites and also have done searches on other cancer forums. They're not discussed much on this forum but I've seen good responses on other forums. The only question I have is that they have done testing on a lot of different cancers, but it doesn't seem like there are too many for colorectal cancer.

    I'm not sure I'm allowed to post links but do a google search and you'll find some accounts of successful personal experiences.

    Edit, found a posting from CSN so have copied the link in case it's helpful. http://csn.cancer.org/node/184236. Here's a post that compares the greece testing with US testing. http://www.inspire.com/groups/advanced-breast-cancer/discussion/rational-therapeutics-5/

    Good luck!   

  • Maxiecat
    Maxiecat Member Posts: 544 Member
    #6
    (hugs) I am so sorry that

    (hugs) I am so sorry that I've has growth.  As far as the genetic testing...there should be someone at MSK that you can talk to.  I had the testing done when I went to the University of Md this spring.  They have a whole department for genetic counseling.  They drew the blood at one of my appointments and did some of the tests there and sent the rest out.  Just ask...they should be able to point you in the right direction.

     

    alex

  • Kathleen808
    Kathleen808 Member Posts: 2,342 Member
    #7
    Thank you

     

     

    Thank you!!!! This is exactly where we are going with this latest news. We will look into the OC labs and the two labs listed below So interesting that Dr. Castro who is head MD at Claris opened his office in Honolulu last year. We have been hearing his name from a number of people the past few months. Please pray that we will know which direction to move. Tomorrow morning I will call Dr. Lenz, Sloan Kettering, both labs and we will also see ****'s local onc. We will also make apt with Dr. Castro. I will keep you informed on all of this. We are hopeful that this new technology is what we need right now. We know ****'s tumor has changed and we need to know what we are dealing with now. I hope we get hopeful news and I hope we can have something to share with all of you.

    http://www.foundationone.com/index.php

    http://www.carislifesciences.com/oncolo ... telligence

    The above labs were listed by friends at the Colon Club.

    You are all the best.

    Aloha,

    Kathleen

     

  • johnnybegood
    johnnybegood Member Posts: 1,117 Member
    #8
    Kathleen808 said:

    Thank you

     

     

    Thank you!!!! This is exactly where we are going with this latest news. We will look into the OC labs and the two labs listed below So interesting that Dr. Castro who is head MD at Claris opened his office in Honolulu last year. We have been hearing his name from a number of people the past few months. Please pray that we will know which direction to move. Tomorrow morning I will call Dr. Lenz, Sloan Kettering, both labs and we will also see ****'s local onc. We will also make apt with Dr. Castro. I will keep you informed on all of this. We are hopeful that this new technology is what we need right now. We know ****'s tumor has changed and we need to know what we are dealing with now. I hope we get hopeful news and I hope we can have something to share with all of you.

    http://www.foundationone.com/index.php

    http://www.carislifesciences.com/oncolo ... telligence

    The above labs were listed by friends at the Colon Club.

    You are all the best.

    Aloha,

    Kathleen

     

    Aloha

    to both of you.i dont have any info but just want you to know how proud i am of **** and how he has handled all of the chemo.i too have showed little growth in my last scan and i am really strggling with knowing i will have to go back on systemic chemo.you are both in my thoughts all we can do is hang in there together...Godbless...johnnybegood

  • geotina
    geotina Member Posts: 2,111 Member
    #9
    Kathleen:

    I am truly sorry for what you, **** and the girls are experiencing.  I know full well how very frustrating this disease can be.  Unfortunately, I don't have any information for you since George never did have any of this type of testing done.  The only thing I can tell you is to hang in there and know that you are thought of daily and special prayers for all of you being said.

    Love and Hugs - Tina

  • hippiechicks
    hippiechicks Member Posts: 509 Member
    #10
    So sorry to hear of the

    So sorry to hear of the progression ... such a rollercoaster!  It sounds as though you have all your ducks in a row, so I will just send support and strength to you both. 

    I have also recently researched this topic and seems to be very promising.

    Wishing you both the best of luck. 

    I feel I will be visiting both Sloan and Dr. Lenz in the near future as well ...

  • LivinginNH
    LivinginNH Member Posts: 1,456 Member
    #11
    Dear Kathleen,

     

    Dang, that's why I always dreaded scan result day; your world is fine right up until the time the doctor enters the room.  :(  I'm glad that **** is going to Sloan, it's a great hospital with the latest treatment options. 

    All my best to you both, stay strong.

    Hugs,

    Cynthia

     

  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    #12
    Sorry

    So sorry for this news and can fully understand why you pulled the post.  I'm hoping that you get some of the answers you need soon.

    Kim

  • annalexandria
    annalexandria Member Posts: 2,571 Member
    #13
    I'm so sorry, Kathleen.

    This is so hard and I really wish you had gotten better news.  What chemos has **** done so far?  I do think the tumor testing sounds like a good idea.  I didn't do it (in part because my tumor type is so odd that there is no information available about treatment), but I've read of others who have done it and been happy with the results.  Not wasting time with a chemo that won't work is critical.  Please keep us posted.  We'll be thinking of both of you, and hoping for a great tx plan.

    Hugs and strength coming your way~AA

  • janderson1964
    janderson1964 Member Posts: 2,215 Member
    #14
    I am sorry to hear the news

    I am sorry to hear the news but it sounds like sloan will come up with a good plan.

  • jen2012
    jen2012 Member Posts: 1,607 Member
    #15
    Kathleen - sorry to hear

    Kathleen - sorry to hear about ****'s latest scans.   You guys have been at this for so long - I'm hoping that someone has a good plan and it's just a bump in the road.  Good luck with all of the appts and please let us know how things are going.   Keeping you guys in my thoughts and prayers.

  • tanstaafl
    tanstaafl Member Posts: 1,313 Member
    #16
    function testing and rechallenging mets

    I think the live cell function testing would tell you better which chemo and biologicals/antibody combinations might work if you get enough tumor sample, ~1 gram.   The histological, molecular and genomic testing approaches we (would) use more for adjuncts (like natural target therapies interchanged for expensive antibody therapy) rather than the chemo itself. 

    We have always been willing to take possibly incomplete surgery then stabilize with immuno therapies and multiple modulated light chemo if enough immune function is available or can be stimulated.   When the largest, worst mutated, most metabolically active tumor mets are cut out or destroyed, chemo sensitivity may return.  This was our experience.  The old blood data may also indicate which backbone chemo treatments might be worth trying to re-invigorate.

    Part of our strategy has been to keep anti-cancer somethings on the tumors and lymph nodes everyday. 

  • Kathleen808
    Kathleen808 Member Posts: 2,342 Member
    #17
    tanstaafl said:

    function testing and rechallenging mets

    I think the live cell function testing would tell you better which chemo and biologicals/antibody combinations might work if you get enough tumor sample, ~1 gram.   The histological, molecular and genomic testing approaches we (would) use more for adjuncts (like natural target therapies interchanged for expensive antibody therapy) rather than the chemo itself. 

    We have always been willing to take possibly incomplete surgery then stabilize with immuno therapies and multiple modulated light chemo if enough immune function is available or can be stimulated.   When the largest, worst mutated, most metabolically active tumor mets are cut out or destroyed, chemo sensitivity may return.  This was our experience.  The old blood data may also indicate which backbone chemo treatments might be worth trying to re-invigorate.

    Part of our strategy has been to keep anti-cancer somethings on the tumors and lymph nodes everyday. 

    tanstaafl

    I have always read your posts with fascination and some level of intimidation.  :)  Sometimes your info is way above my head. That said, I really like your approach.  Where does your wife get treatment and how do you have so much say in her treatment?  Thank you and keep posting.

    Aloha,

    Kathleen

  • tanstaafl
    tanstaafl Member Posts: 1,313 Member
    #18
    Kathleen808 said:

    tanstaafl

    I have always read your posts with fascination and some level of intimidation.  :)  Sometimes your info is way above my head. That said, I really like your approach.  Where does your wife get treatment and how do you have so much say in her treatment?  Thank you and keep posting.

    Aloha,

    Kathleen

    1% inspiration...

    Where does your wife get treatment ...

    at home (wherever, like the car or the IV on the beach) for almost everything but surgery and scans.  Everything is oral and mild except that the intravenous vitamin C is an IV.

    ...and how do you have so much say in her treatment? 

    We and our extended families have had some bad experiences with the medical industry before, observed others' disasters, learned to be more self reliant, and to find better options.  I have a technical background.  She wouldn't talk to medical oncologists any more after her first visit (my 4-5th onc, my first visit was pretty negative ) and tells any dr that I have her full support/vote.  Mostly I consult doctors alone. We hire labs a la carte on any specific issues, and she goes for insurance related calls, sees the surgeon every year or so, and sees our Internal / Alternative Medicine MD occasionally.  We kid around about being a billion dollar research project, just short $999.9m and only one rat, the rest made up mostly on perspiration.

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