Topic: Possible new section

Hi,
I don't know how populated this will be at first, but I know that I'm getting genomic sequencing done. Just sent the request out in the mail today! I'm positive it will help in the fight against this monster. Hopefully sooner rather than later. I figure more and more of us will have this done, and I think it might be nice to have one place to look.
Anyway, I am having both pre- and post- chemo pathology examined, and I hope it shows how the mutations responded to the chemo cocktails I was on. Along with the mutation that is currently being treated by this inhibitor drug.
This is so exciting! I never would have guessed at the advancement in this fight when I started on my journey three years ago! Imagine... A blood test will now make cancer screening affordable!! A urine test will shortly be available for some cancers!! It's amazing!
And to think, three years ago this month I was given a "death sentence". And told there was a good chance I would be dead within two years. Well, I showed them! And hopefully with the genomic testing many many many more of us will be able to say that!

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: Possible new section

Kris...there is so much hope in your post.  Like you I wish for many others to beat the predictions given.  You go, dear Kris. 
Whenever you are ready to post the new thread in the "General Discussion" we will add a sticky for others to follow.  Rick will then carry this over to the new web site.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Possible new section

Kris,

You have such a positive and hopeful attitude and that will help you as you continue to deal with the ups & downs of this disease.   You've already beaten the odds and proven them wrong.   Hoping you can keep this up for many years to come.

Love & Hugs,
Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

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You said it, Kris! That's wonderful that you're at the 3 year point and doing do well. Thanks for sharing your plans and passions. All the best to you,
Willow

Willow

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There is a reason why doctors aren't statisticians! You showed them for sure Kris and you will continue to show them.

Hugs
-Randi-

Survivor of cholangiocarcinoma (2009), thyroid cancer (1999), and breast cancer (1994).

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.

Re: Possible new section

Loving your post Kris and hopefully soon a urine test will be available for CC too! And I agree with Randi, keep kicking these statistician's butts!

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Possible new section

It's posts like yours that provide much needed help to get us through the night.

Fighting with dignity, not desperation.

Live, Laugh, Love

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Kris,  If you are willing to share the info, I was wondering if insurance is picking up the cost of the molecular DNA sequencing you are doing.....or if you have to do that out of pocket.  I had read somewhere that the cost was about $1000-2000, which I was prepared to do, but my oncologist said it was more like $4000-8000 and if insurance paid for it, it might only be a one time deal.   His thoughts were that if the first round of chemo didn't work....and the cancer showed up again after the resection and chemo, then that was the time to do the DNA to see if there is a targeted drug for my particular cancer.  Plus, he said that if we started with the targeted drug first...and it didn't work....then what to do next.  He seemed to indicate it wouldn't be going back to the usual first line chemo of gem. and cisplatin.  We had already long exceeded our appointment time and there really wasn't time to get into this with him, so I will be taking it up with my local oncologist, to see if he knows more.  Meanwhile, I'm curious as to whether you've found insurance will pick it up...and if not, what kind of costs we're looking at.     Julie T.

Just for today, I can get through anything.  "Never let fear decide your fate."  (from the band, Awoination.)

Re: Possible new section

Julie,
I will let you know. They had to request old pathology from Sloane Kettering so it might be a while. I see my onc I. 1-1/2 weeks and I'm planning on asking.
She said they use a cheaper co. That will work with me since I'm on disability.

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

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I'm curious about all this too. If there is a blood test to do this, great, as they have been unable to get a tissue sample from my tumor.

Impatient patient.

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Lisa, search here on guardant. Our oncologist is looking into the info I gave her on them.  When I contacted them directly, they responded within a day.

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I saw the blurb on Quadrant also and am intrigued.  I have an appt on Monday (my birthday) with my local oncologist who will be overseeing my chemo.  From what I've heard, he's a very compassionate man and treats the whole person, along with the traditional medical regimen of chemo.  I'm hoping that we can get moving on some kind of tumor DNA sequencing.  I'll see what he says and report back here.

Just for today, I can get through anything.  "Never let fear decide your fate."  (from the band, Awoination.)

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REPORT From Local Oncologist:  I have to say I was disappointed with the local oncologist.  I found him to be distant and not all that compassionate.  He mostly answered my questions, but he seemed to be tired and maybe wished he didn't have to be there.  For all I know, he had a patient die or he wasn't feeling well himself....I don't know.  I'm trying to give him the benefit of the doubt since he has had so many people recommend him based on his compassion and openness.    My husband said he seemed very knowledgeable, but also agreed that the guy didn't display that warmth and openness that we had been told about.  I will give him another go or two at it, but if not him, then I'm really into the unknown here in town.  There are two other main groups of oncologists and I don't know anything about either.

DNA Sequencing:  Well, he first started talking about the cost of health care and how expensive it was.....$10,000.  Wait a MINUTE!!!  I had read on the web that costs were about $1-2K.....then the Mayo oncologist said about $4-8K and now $10 K.  This guy did mention that only one of his patients had requested (demanded maybe?) the DNA sequencing.....so maybe that was done before prices started to come down.  (Competition?) Then, he mentioned something about  Anyway, I left there more confused about this issue than ever. 

I would LOVE to be able to just do all the chemo treatments up at Mayo Rochester, but it is a 3 hour drive.  Hubby is willing to do that....2 out of every three weeks, but the Mayo doctor warned that with each succeeding round, I may feel worse and wouldn't want to be riding in a car that long.  Wish I had a crystal ball to know.    Oh...the chemo will probably be Gemcitibine and Cisplatin.  We could do the Oxiliaplatin (sp?) but the cost is considerably more (insurance might balk) and he thought that there was more evidence that the cisplatin might be more effective.  If I don't tolerate the Cisplatin, I'm guessing that we might be able to change to the Osiliaplatin since it has fewer or less severe side effects.

I am having a port installed this Friday.  Not really worried about that too much, except for the IV placement....but am going to the oncologist's office to have them put one in before I go to the hospital to have the port put into my chest.

Meanwhile, my surgical incisions have not healed yet, due to popped/or prematurely dissolved stitches.  I'm in the beginning days of week #8 post surgery.  There is a major good change in one and the bigger one looks better, but still not getting to the point of healthy tissue yet in the bigger one.  .  I'm concerned about doing chemo with unhealed incisions, but the oncologist's point was, ~Which is more important....hopefully killing off cancer cells when they are still very small and can maybe be affected by the chemo, or waiting possibly a long time for the incisions to heal and delaying chemo to the point it may not do any good.~  I want to call my Mayo doctor and see what he says again.  I know it isn't unheard of to do chemo with incisions that are still open (mine are only about a quarter of an inch deep), but I just want to be sure of what we are doing.  On my own, I initiated an informal visit with a wound specialist nurse who assessed it and said it was stalled healing.  She gave her recommendations to my GP who agreed with the nurse, so we are now doing a silver impregnated cloth in the incision to speed healing.  Meanwhile, I think I need to see an MD who specializes in wound healing issues, but haven't looked at the phone directory yet to see if there are any in our location to do that.  If I'm going to do chemo with even slightly open wounds, I want this to be watched very carefully during chemo to make sure we stay ahead of a possible infection. 

This is a full time job.  I feel like I don't know who or what to believe anymore. 

Julie t.

Just for today, I can get through anything.  "Never let fear decide your fate."  (from the band, Awoination.)

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Ugh! Unfortunately, yes, it can be a full time job.
First, depending on your insurance, oxaliplatin may be covered. It is not the first line of treatment, tho, by most oncs. Cisplatin is normally the first chemo regimen. My first onc said oxaliplatin would work better for me, so I never had cis.
As for your local onc, if he isn't to your liking next time, ask him if there is a problem. Tell him you have heard nothing but good about him and you aren't seeing it! Ask him if he can refer someone else. Take it from me, not liking your onc does NOT help in the fight.
Supposedly whatever company my onc is using for the testing, First something(?), will work with you. She says the normal charges are $1,000-$2,000. There is another more costly company, too.

As for your incisions... I hope they heal soon. Or the chemo is not an issue. Call Mayo and ask. The oncs work for you. It will, at least, put your worries to rest about your incisions. You have enough to worry about.

You have been busy! I hope you get time for a breath soon.

Take care,

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: Possible new section

Kris,  Thank you for your response to my rant.  When my husband came home a bit ago, we discussed the whole situation.  He asked, "Why don't we just go up to Mayo and do the chemo up there?"  He's willing to make the trips....upwards of 12 trips over the next 4.5 months or so, but he likes to snoop around and discover new places.  We could drive back home the same day as a chemo treatment...or even stay over one night if necessary.  Do you think that is feasible?  I don't remember the Mayo doctor saying that I shouldn't feel too bad right after the chemo,...that it doesn't hit until a couple days later. 

The local onc did say that the oxiliaplatin had less harsh side effects, so that would be nice, but he seemed to want to go with the usual cisplatin. 

I'm probably still going ahead with the port installation at our local hospital...just to get it over with.  If I call the Mayo doctor tomorrow, I should have an answer to some of my questions before the week is out and be able to set up chemo to start next week up there if I decide on that route. 

Thanks also for that info on the costs on the DNA sequencing through the company your doctor is using.  I think that is called, "First Foundation"....maybe....something like that.  I know there are several companies...maybe upwards of 8 or 9 that are getting into this which should drive the costs down.  The problem will be getting oncologists to get on board.  I think this local onc doesn't see the benefit for cost.....but that seems kind of short sighted.  I understand the reasoning behind scientific studies, but while I hate the idea of experimenting....that's exactly what a study is...an experiment. 

Will get back to you again on all of this after talking to the Mayo doctor. 

Julie T.

Just for today, I can get through anything.  "Never let fear decide your fate."  (from the band, Awoination.)