Dr. Cantrell called me yesterday-update at bottom

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  • lisa42
    lisa42 Member Posts: 3,625 Member
    DennisR said:

    Hi Lisa,
    It's very

    Hi Lisa,
    It's very encouraging that your Onco is willing to participate with Dr Cantrell. When I got a 2nd opinion from an Onco in the VA system in Denver who used a trial Rogue Chemo regimin that was very successful with my type of cancer, my original Onco still wouldn't budge off the Standard Garden Variety Chemo that he used the first time around. The Onco in Denver told me that once there's a recurrance, the cells have developed an immunity to to the original R-CHOP and other drugs and it wouldn't be effective at all or with a virtual certainty of another recurrance soon.
    I went with the Denver Onco and the treatments he used caused the tumor to disappear in 8 weeks,but we kept doing the treatments for 3 more months and then I had a BMT in Seattle. Today I'm NED, when just over a year ago I was given less than 3 months to a year to live by my original Onco (who I still see every month and is amazed by my progress and general health).
    DennisR

    to Dennis
    Hi Dennis,

    That's wonderful that you're NED and are doing so well! Your case is another example that shows people really need to be their own advocates and definitely need to always seek a 2nd opinion & sometimes even a 3rd or 4th. If you had just listened to your original onc and gone with his treatment, you might not be here today.
    Thanks for sharing!

    Lisa
  • Fight for my love
    Fight for my love Member Posts: 1,522 Member
    lisa42 said:

    update since the appt w/ my onc
    Hi again Everyone,

    I've just been home from the visit to my oncologist about an hour now. It went very well! I have been praying about this whether or not it's something I should really pursue, and I feel that fact that everything is falling into place with it is my answer to prayer.
    Before going to my appt. today, I typed out a page and a half letter to my oncologist basically outlining what I've been researching and finding out about Dr. Cantrell, and shared info that Dr. Cantrell talked about from our phone conversation yesterday (I'm still so impressed that Dr. Cantrell took the time to call me). So at my appt today, I gave the nurse my letter along with some print outs from the website. My onc read everything before coming in to talk with me, and I was pleasantly surprised when he said, "I find this very, very interesting." He said he had heard of some studies about the Lovastatin and interferon, but never anything of them being used together. My onc said since I'm basically on the last standard approved treatment (Folfiri/Avastin) and my CEA is rising and it hasn't made my lung nodules go away, that I'm really getting to the point of looking for a clinical trial anyway. Since the clinical trials that we'd consider at this point would only be with new agents (no rehashing of stuff I've already taken), that any clinical trial I'd enter at this point would really have unknown results too. So the fact that Dr. Cantrell's treatment isn't yet "proven" did not dissuade him from now considering it for me. My onc also printed out some of the clinical trials currently being offered at USC and there is one in particular that he said would be good for to also look into, just to find out about it and have it as a possible back up if Cantrell's treatment doesn't work for me. We talked a lot of specifics and my onc told me he'd definitely like to cooperate and work together with Dr. Cantrell. Since I have an HMO, my onc said he would gladly order any tests or scans that Dr. Cantrell wants to do (since my insurance, being an HMO, most likely wouldn't pay for it just being ordered by Dr Cantrell). I I left today's appointment saying "Thank you Lord!"
    There's no promises of success, of course, but I have a very good feeling about this.


    To answer a couple of questions some of you asked me- Re. insurance and some of the costs of the treatment... Cantrell said his office does not have the capability to work with insurance companies. They will gladly supply the forms to submit to try to get reimbursement from insurance as well as any other tests results, documentation, etc. that the insurance co. might want. I have a feeling with my ins. company being an HMO, that they won't cover it, but it won't hurt to try.
    The costs are really not huge. I don't know about interferon costs, but the Lovastatin (according to a man who's on it who I spoke with) runs only $20-30 a month, depending upon the pharmacy you get it at- he gets it in a generic version from WalMart. His VA insurance pays for the interferon, so I don't know what that cost would be if your insurance didn't cover it. Follow up Dr. appts w/ Dr. Cantrell run between $200-300 & he would want to see every 8-12 weeks during the first few months of treatment, less often later on. It's really not huge. If your insurance already pays for bloodwork and scans, they should continue to pay for them (it probably would help if your regular oncologist put the order in for those). There really isn't any other costs other than airline tickets and hotel stay costs.

    Someone asked me about the type of interferon, as there are different types. I don't know the answer to that question- sorry. All I was told is that it's a fairly "low dose" and so the side effects are far less than what some people have experienced who take it for other illnesses. You said that you didn't know how interferon would help with cancer- I don't really understand all the technical stuff that was explained to me, but I know I was told that it really wouldn't do anything if the interferon was given just by itself- it's the combo of it together with the Lovastatin that seems to do the trick.

    Cyndi- I'm sorry that your onc wasn't supportive of this, but I definitely wish you well with the clinical trial that you're soon starting. Keep us posted on that.

    Okay- I won't keep going on and on about this, but do let me know if anyone has any other questions. DAN R posted in a very short post that he looked into this and he has an appt. coming up very soon on Nov. 11th. We've exchanged some PM's about it in more detail. Hopefully he'll share afterwards how it went.

    Have a good evening and rest of the week everyone-
    Lisa :)

    Hi dear Lisa,I am so happy
    Hi dear Lisa,I am so happy that your oncologist is being so supportive.This definitely makes the whole thing lots of easier.Thanks God and thanks to your oncologist.Take care.I am so happy for you.:)
  • DennisR
    DennisR Member Posts: 148
    lisa42 said:

    to Dennis
    Hi Dennis,

    That's wonderful that you're NED and are doing so well! Your case is another example that shows people really need to be their own advocates and definitely need to always seek a 2nd opinion & sometimes even a 3rd or 4th. If you had just listened to your original onc and gone with his treatment, you might not be here today.
    Thanks for sharing!

    Lisa

    Thanks Lisa.
    Some

    Thanks Lisa.
    Some oncologists won't vary from the standard protocol prescribed by the AMA fearing for their reputation if the treatment should fail. Also they worry about getting sued for mal-practice or something if they try something different.
    Some other DRs don't seem to care about the protocol and are willing to take a risk in order to save lives, but some of those can be quacks using herbal cures that have no effect, etc.
    I was referred to the Oncologist in the Denver VA by the surgeon in the local VA that did my surgeries 8 years ago. He also set up the appointment for me.
    DennisR