You guys are gonna love this, help is on the way!
snommintj
Member Posts: 601
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.
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.
0
Comments
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Wow John
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.0 -
Shout Out!PhillieG said:Wow John
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.
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.0 -
Wow
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.
Kim0 -
This is such wonderful news
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!!0 -
That's funnydianetavegia said:This is such wonderful news
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!!
No christianity doesn't offend me. You can pray for me when and where ever you want.0 -
Great news, John!snommintj said:That's funny
No christianity doesn't offend me. You can pray for me when and where ever you want.
Great news, John! Sounds terrific. We never know what tomorrow will bring. Thanks for sharing the news!0 -
Thank you for offering yoursnommintj said:That's funny
No christianity doesn't offend me. You can pray for me when and where ever you want.
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!
John0 -
Hope...
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.
Hatshepsut0 -
Not for YOU, John,,,,
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.
)
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) 0 -
Thank you!
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!0 -
Oh John!
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 Vancouver0 -
Wonderful!AnneCan said:Thank you!
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!
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!
Melanie0 -
Hi dear John,it is
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.0 -
John..........PGLGreg said:Sounds great
... if they can get the costs down.
--Greg
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....Clift0 -
Steadfast
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,
Kathleen0 -
thanksKathleen808 said:Steadfast
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
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.0 -
John....polarprincess said:thanks
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.
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 Bud0
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