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You guys are gonna love this, help is on the way!

snommintj's picture
snommintj
Posts: 602
Joined: Mar 2009

About four months ago I had several chunks of my tumor sent off to a new lab for a detailed genetic and protein expressive oncotyping. This is new technology and the lab doing this technically isn't open yet. A buddy I went to grad school with sold them some of the diagnostic equipment they use. He got my samples and they were used to calibrate and test the equipment. This technology is not currently covered by insurance and is a pay for service lab. A complete test I'm told runs about $20,000. I got a free oncotyping out of the deal. The results came in today, my oncologist called me immediately. I have never heard any doctor so happy. Not necessarily for me but for all cancer patients. He said this test is going to change the way cancer is treated until a cure is available. He was also happy for me.
This new lab checks for and tests any over expressed proteins and all genetic abnormalities. This doesn't sound like such a novel idea, but here's the catch. They check for all abnormalites in relation to all cancers. For instance, I knew I was KRAS mutated because they checked, they had also checked for a couple of other colon cancer mutations. The only thing this did was eliminate possible treatments. This new lab recommends treatments based on all abnormalities. Not only does it recommend treatments, it also gives probabilities for positive responses to the treatment. It recommends probable combinations and treatment durations. I do not have the specifics, I will get them on monday. The report is fifty pages long and I will find a way to post it online. I have an old website that I haven't used in years. I think it is still active, if not I will reactivate it and provide a link, but this is what I know.
For the time being, my cancer is considered very unique. It may turn out to be entirely ordinary once other folks get tested but for now my cancer is unique. My cancer does possess genetic abnormalities consistent with colon cancer, but it is more consistent with breast cancer and even more consistent with renal "kidney" cancer. There was a 75% chance that I have a positive response to colon cancer treatment, but there is an 80% chance I have a positive response to breast cancer treatment, and a 97% chance I have a positive response to renal cancer treatment. I also have a better than 50% for a lymphoma treatment and another treatment that I can't remember the name of, it was long and I had never heard of it.
This test also checks for protein expressions and recommends all know inhibitors, approved or in the works. There are 14 protein inhibitors that have between a 65 and 91 % chance of having a positive response.
By the way, I am not KRAS mutant. So I should respond to erbitux, as it turns out the test I had originally had a 35% chance of being wrong.
I meet with my ultra excited oncologist monday at 10:45. He told me over the phone that I'm going to start the treatment for renal cancer along with an already approved protein inhibitor next week.
The bad news, insurance will not cover any of these tests, treatments or procedures. My Dr got the drug companies to front the first 2 months of treatment, after that I'm on my own. Treatment is about $10,000 a month.
I will post everything I know on monday or tuesday.

PhillieG's picture
PhillieG
Posts: 4906
Joined: May 2005

Great news! A little complicated (for my simple mind) but it sounds very promising!
Congrats and thanks.
-phil

PS: if you do not own Acrobat (to make PDFs) there is a site called Primo PDF that allows you to create PDFs w/o Acrobat. You could then possibly post it on your Expressions page. If not, there is also a site called GoAruna.com that lets you store and provide a link so others can download the file. It's all free too.

snommintj's picture
snommintj
Posts: 602
Joined: Mar 2009

I would also like to add that I had absolutely nothing to do with finding this lab or getting involved in any way. I was approached by my very good friend Chris Lind***, whom I hadn't seen in 10 years, to participate. He set up all the paperwork and arranged everything, all I had to do was sign a release.

Annabelle41415's picture
Annabelle41415
Posts: 6419
Joined: Feb 2009

That is awesome news. It is surprising what they can find out from tissues and technology. I'm hoping that the drug companies will reconsider and do all your testing for free. They might just do it. Good luck.

Kim

dianetavegia's picture
dianetavegia
Posts: 1953
Joined: Mar 2009

John I am THRILLED! This is GREAT news!

Disclaimer: Don't read below the line if Christianity offends you.
___________________________________________________________________

THANK YOU LORD for hearing our many prayers for our beloved friend John and all who will benefit from this!!

snommintj's picture
snommintj
Posts: 602
Joined: Mar 2009

No christianity doesn't offend me. You can pray for me when and where ever you want.

lizzydavis's picture
lizzydavis
Posts: 893
Joined: May 2009

Great news, John! Sounds terrific. We never know what tomorrow will bring. Thanks for sharing the news!

johnsfo's picture
johnsfo
Posts: 47
Joined: Oct 2009

Thank you for offering your description of this promising method. It just makes sense, and I'm going to talk with my onc about it.

Thanks again!

John

Patteee's picture
Patteee
Posts: 950
Joined: Jul 2009

How incredible John! yeahhhh for you and for all that will benefit from this incredible technology. Now the next leap, to get insurance to cover it. Congrats!

Hatshepsut's picture
Hatshepsut
Posts: 340
Joined: Nov 2006

John:

What a relief it must be for you and for your family to receive the call you did from your oncologist conveying positive news about your treatment and hopeful news on a much broader scale for all the victims of this miserable disease. The image you paint of your enthusiastic oncologist is a great one. It is a call all of us would like to receive.

I look forward to reading whatever you can post about this procedure and about the company offering the testing. I also hope that others will post reports on how their own oncologists parse this information.

Hatshepsut

lesvanb's picture
lesvanb
Posts: 911
Joined: May 2008

I'm jumping up and down happy for all of us and for all the oncs and for all our loved ones!
Thanks so much John for your persistence and resilience, and for sharing your news all the time with us.

Leslie

PGLGreg's picture
PGLGreg
Posts: 741
Joined: Jul 2006

... if they can get the costs down.

--Greg

Buzzard's picture
Buzzard
Posts: 3073
Joined: Aug 2008

Remember someone saying before that its not about the dog in the fight its all about the fight in the dog. I knew that somehow someway that there would be a turning point for you and even though you may not think you had anything to do with it you had everything to do with it. The right place at the right time...I always hoped things would be better for everyone on here, seems as if somethings are starting to come together. I am happy that it may be the turning point in your life.....Its never the last option...Good for you John, good for you....Clift

dianetavegia's picture
dianetavegia
Posts: 1953
Joined: Mar 2009

I meant that for those who don't care for such remarks. I pray for you, Phil, Eric, Craig, Lisa, Donna, Jennie, and a whole slew of our friends at least 2 times a day. (If you were not named, you're probably still on the list.)

So....... now I'm thinking we should all print off the report when you share it and send it 'post haste' to our oncologists! Some of these guys are a day behind people who are in the fight. :o)

I'm so excited about this news and have a really, really, really good feeling about you and your new treatment options!!!! Prayer focus will NOW include the drug companies approving you for a FREE trial as long as it takes.

Diane

:o)

AnneCan
Posts: 3692
Joined: Oct 2009

Thanks so much for sharing this fantastic news! Also, thanks for letting them test you in this way; you are helping all of us. I really appreciate that you are willing to share this report; this sounds like breakthrough technology. You obviously also have the right circle of friends; it is great your friend got you into this. Best wishes!

knowwhen
Posts: 6
Joined: May 2008

Hi John,
That is such great news... finally some of the research and new technology is filtering into the clinical arena. Hopefully once you show a great response to the first 2 months of treatment fronted by the drug company, that will give your doctor enough proof of efficacy to file an appeal with the insurance company to get them to pay for further treatments.

I had a couple of questions for you... did you know about this ahead of time before you had your tumor resection and the tumor specimens were sent immediately as soon as the tumor was removed or did your hospital have a tumor bank that you just requested the specimens from after the fact? Also was curious whether this testing is for the primary (original) tumor only or whether they look at recurrent tumors...

Thanks!
Melanie

robinvan's picture
robinvan
Posts: 1014
Joined: May 2007

What an awesome new oppprtunity. Firstly, I am immensely happy for you as I know how you have suffered many set-backs recently. This will certainly open up new options for you! And secondly for all the rest of us who are suffering with the challenging mets and recurrences of the dread disease!

Thank you for bringing this good news!! You have made my day!!

Rob; in Vancouver

Fight for my love
Posts: 1530
Joined: Jun 2009

Hi dear John,it is thrilling.This way doctors can find the right treatment for patients,and patients can avoid the unnecessary treatment or over treated.This technique can really walk every cancer patient through the darkness,more and more people will get cured by this technique for sure.Thank you so very much for sharing this sophisticated knowledge and news with us.Best luck to you with the treatment and I hope you find a way to solve the financial issue.Take care.

Kathleen808's picture
Kathleen808
Posts: 2361
Joined: Jan 2009

John,
You are a steadfast man and you and so many others are going to benefit from this information. I think all of us should pass this info to our docs (or spouses doc). This is huge!!

You are awesome!

Aloha,
Kathleen

polarprincess
Posts: 210
Joined: Aug 2008

Thanks for posting this is indeed exciting. I had to go post the link to this post at colonclub. hope you don't mind. can't wait to see the report.

Buzzard's picture
Buzzard
Posts: 3073
Joined: Aug 2008

is there any way of knowing how many months the treatment regimen might take ? Im sure that there are people,hospitals,funds out there that will assure you a complete treatment for the good of human life. There are many smart people in here, Im sure the funds could be somehow appropriated....its only money, material stuff, we should see what the Drs hold for the treatment and see what we are made of in our look out for funding of this research or bombard our government for backing and expedition of these treatments. It is life sustaining and life replenishing in its efforts.....John, when you see your old buddy again, give him a great big bear hug from the Semi colons, and tell him we all said "Thank you from the bottom of our hearts"...and I certainly hope this will be your shining star...Good Luck Bud

tootsie1's picture
tootsie1
Posts: 5056
Joined: Feb 2008

I can't say that I totally understand all that, but it does sound like good news. Thanks for the info!

*hugs*
Gail

KathiM's picture
KathiM
Posts: 8077
Joined: Aug 2005

Yes, please, keep us posted! This is sooooo exciting...

I wonder if the reason I have done so well on the colon is because I went thru the breast cancer treatment 6 months later...and maybe, vice/versa!

Hugs, Kathi

coolvdub's picture
coolvdub
Posts: 410
Joined: Aug 2009

Great news on a breakthrough technology that sounds very promising. I wish you all the luck needed to get extended treatments and meds from this.

Don

califsue
Posts: 80
Joined: Oct 2007

John,

Thank you for posting this information. This is cutting edge. It definitely gives me hope and tells me that even though I have failed all "standard" treatments for colorectal cancer, there may be a drug cocktail out there for me that will kill my tumors.

Best wishes to you on this "pioneer" phase of your healing. Please keep us informed.
Susan

jscho
Posts: 62
Joined: Jun 2009

John, I have often wondered why there weren't more options to have genetic analysis of ones particular tumor. It's nice to hear that detailed testing is in the pipeline. The information should be used for designing personalized treatments, such as the one outlined for you. I truly hope it is effective.

I'm a little skeptical about how they can attach probabilities to the effectiveness of particular therapies, since this kind of testing is not typically carried out. Obviously if there are mutations in things like K-ras or B-raf which render growth pathways constitutively active (short-circuited to be "on") then EGFR drugs will not be effective, but how they know the probability of response to systemic types of chemo is not clear to me. I know there have been some studies of genetic factors for drugs like 5-FU, but there must be pretty big error bars on the statistics. As this kind of analysis matures, things will be much more certain and therapies can be truly individualized.

I look forward to seeing your report. Thanks for sharing!

Jeremy

dixchi's picture
dixchi
Posts: 438
Joined: Jun 2008

Am so happy for you that there is a new plan and one that
may benefit other cancer patients.....surely there are
grants, funding agencies, National Cancer Institute or
someone who can help with the bills...even Dr. Lenz???
Thanks so much for sharing this and hoping for an
excellent outcome.

Hugs,
Barbara

Buzzard's picture
Buzzard
Posts: 3073
Joined: Aug 2008

Joe (soccerfreaks) posted this is hopes that it might help me find financial aid in case I needed it to continue this treatment. I must have misguided him someway because of him thinking it was me. So, to reference this post to whom it should go to I changed the name where Buzzard use to be and placed John in it. I hope its ok...Here is his post...

Congratulations, John, on what appears to be some fantastic news. Incidentally, some of the elements you reference, including the relationship between the KRAS gene and colorectal cancer, genetic and epigenetic solutions, and targeted therapies are covered rather extensively in recent issues of ACS's CURE magazine (I believe it is at curetoday.com online as well). Just for further reference.

As for financial support, John, if you get to a point where that is a problem, consider the following among other that I am sure are out there:

http://www.cancer.gov/cancertopics/factsheet/Support/financial-resources

This site is put up by the National Institute of Health or some such, and is government-supported. TereB has responded in other discussion areas with some excellent suggestions, and they may apply for you as well. I am taking the liberty of copying and pasting them as well:

Cancer Care, a non-profit org., offers free support and counseling for cancer patients by oncology social workers. They have face-to-face counseling and counceling on the phone. Support groups on the phone are available too and are moderated by an oncology social worker. Call 800-813-HOPE. They can also give you info about financial resources. Check their website: www.cancercare.org

Gilda's Club - www.gildasclub.org - they offer free social and emotional support. Not sure if they may have financial information but check it out just in case.

Live Strong - www.livestrong.org - offers one-on-one support.

American Cancer Society (here) can also give you financial, support, etc. information available in different cities.

Mike49's picture
Mike49
Posts: 269
Joined: Nov 2008

John, What was the web site for the new lab that analyzed your tumor cells. I am very interested in having this done since my cancer has not responded to any of the chemotherapy regimens I have had.

Thanks,
Mike Bell

Kathleen808's picture
Kathleen808
Posts: 2361
Joined: Jan 2009

Mike,
We're thinking about you.

Take care.
Aloha,
Kathleen

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