Dr. Cantrell called me yesterday-update at bottom
For those of you following my discussion about Dr. Stephen Cantrell and his Neoplas Innovations clinic and treatment, I wanted to let you know that I had emailed him asking if he had any more information to share before I go to my oncologist appt today to discuss all this and me going to Nashville 1st wk of December.
Well, the phone rang last evening and I was pleasantly surprised that it was Dr. Cantrell calling me in response to the email I had sent. We spoke for at least a half hour and I asked many questions, went over my history and situation, etc. I ended the conversation feeling very positive about going and trying his treatment and confident now with going in to discuss this with my oncologist this afternoon (I'll let you know how that goes later).
A few answers to some questions I had, which some of you may also be wondering about...
I had erroneously thought the clinic was in place for almost 9 years- it has actually only been up and going a little over 2 years. The 9 years ago was how long ago Cantrell cured his own cancer (melanoma). I asked about clinical trials, other medical backing, etc.- he stated that it's pretty new for that and that honestly it just hasn't been long enough to have any kind of study/trial results yet, but that patient response has been very, very impressive so far. He said about 85% of his patients have at least maintained and had no disease progression during treatment and many, many of the patients have had tumor regression within 8 weeks of treatment, and several have had the cancer completely regress (NED, although he didn't use that term). My thoughts were that if his Lovastatin and Interferon treatments made my cancer go away, of course that would be wonderful- if the treatment did at least as much as the Folfiri I'm currently on is doing (maintaining my lung nodules as stable), but I could get that result without being on a harsh chemo that can wreak havoc on my immune system and bone marrow, then I'd definitely be ahead of the game. Not to mention that it's so much less expensive than chemo.
I did mention that some on the board had asked their oncologists about the treatment (& I believe it was califsue who asked Dr. Lenz at USC about it & she said he replied that he didn't give interferon studies much importance). I mentioned this to Dr. Cantrell and his reply was that he would never give just interferon by itself either, because it wouldn't do much. Lovastatin by itself might help somewhat, but wouldn't do a whole lot either. It's the Combination of the Lovastatin and Interferon that seems to work so well.
Also, Dr. Cantrell also mentioned that he had been contacted by someone at John Hopkins and also someone at Harvard Medical School about his treatment and that they were very interested in it (nothing official there yet, though- they were just recent discussions he had). Cantrell downplayed the importance of that, as he says whether or not someone "major" backs him or wants to do a clinical trial with him or not, that won't change what he's doing in trying to help cancer patients. He also said he heard that MD Anderson might be going to be offer a similar treatment (maybe in a clinical trial- not sure on that) to pediatric patients with some type of sarcoma (I forgot what type he said). He thought that it probably wasn't based on or connected with what he's doing, but that he believes other researchers are realizing separatly and on their own that this combination (Lovastatin/interferon) really might be on to something good with this. He sounded very open, kind, and humble about everything. He also asked about if I had looked into clinical trials and said he tells people to do what's working best- he's not claiming that he has the only or best treatment by any means- just that he knows it helped him when he was facing death and that he knows he's helping many people now when other things were no longer helping them.
I asked about specifics of treatment and also of the financial aspects of follow up visits.
I don't know if everyone does the same treatment regimen, but we had talked about what I might end up doing (this is just a possibility- more details would be worked out and discussed when I have my appt). The first of two consultation appts would be physical exam, going over history, situation, and asking/answering questions. If by the end of the first appt I decide that I definitely want to do this, I'd go back the next day for a 2nd appt in which we would go over details of the treatment plan, what to do, what to expect,other details, etc. I could actually start on the Lovastatin that same day. You start out at a low dose of Lovastatin and gradually get up to full dose of it in 2 weeks. It's at that 2 week point that you then start the 8 week treatment of both the Lovastatin combined with interferon injections. The Lovastatin is in pill form and the interferon are injections that you can give yourself at home. I mentioned how I had heard interferon will make you feel like you have the flu. Cantrell replied that it's a low dose of interferon so the side effects aren't as bad as with the higher dose that's given to treat certain other ailments (such as Hep C like Wendy, Beth's partner, spoke about in a recent post). He said though that yes, you will feel like you have a bit of the flu for 2-3 weeks. After that point, most patients' bodies adjust to it and hardly have effects from it after that point. A patient I recently spoke to on the phone who is taking Dr. Cantrell's treatment said the same thing- he hardly noticed it after a couple of weeks. You can get some fatigue from it, but it's not supposedly as bad as the fatigue that chemo can cause. This same patient, by the way, (as I wrote about on another post) is now 6 months into the treatment (I had erroneously written on my other post that it was 4 months), and his PET scan last week shows no cancer left!
After the eight weeks of combo therapy, you get a scan and he sees how you're doing. You can have the scan done at home where you normally get it done & just have the disk and report sent to him. He said you would definitely know by then if it's helping you or not & he would be very surprised if it turned out to not help. You go back to see him again approx 11 wks from the date of your first appt for a follow up to discuss your scan, see how you're doing, etc. If you continue on the treatment from there, follow up appts. run between every 8-12 weeks, and then farther apart after awhile. Follow up appts run between $200-300. He said he has some patients who are from out of state who fly in for the appt and then fly home the same day (thus saving hotel cost).
For my upcoming consultation two day appt, I have just reserved a hotel room at the Mainstay Suites, which is apparently about a block away from Cantrell's office. (I do have a nephew there, but decided to not ask to stay at his house). Anyhow, I asked the receptionist at Mainstay Suites if they have a "hospital rate" for cancer patients and I was quoted a price of $59.99 per night (plus the usual taxes will be added on to the price). This place's rooms are all suites with kitchens and sofas and they do have continental breakfast. I thought it's a pretty good deal. I had stayed at the nearby Baymont Inn there while on vacation in Nashville this last summer and it was really nice. I called them first, but they don't have a hospital rate & quoted me $85 per night (we actually stayed there in the summer for $60 something a night, so their prices are higher this time of year, apparently). I went with Mainstay Suites for $59.99 a night for this time.
Well, a long and rambling post here, but I wanted to share the info I heard, since I know some of you are following this and are curious about the details.
I have my oncologist's appt this afternoon, so I'll see what his response to all this.
Take care everyone-
Lisa
Comments
-
Wow
Sounds like you got some very positive news. It is amazing that a doctor that busy would personally call a patient. I am praying that all goes well for you. Keep us all informed as to your progress. Great rate on the room too.
Kim0 -
Good Luck
I wish you nothing but the best in this new venture and anxiously await your further posts. I do have a question though, is this treatment going to be covered by your insurance and if not, do you have an estimate of the cost? While we are early in our cancer journey, I am keeping track of different treatments, options, etc.
I wish you the very best and have fingers crossed for a good result.0 -
Wow LisaAnnabelle41415 said:Wow
Sounds like you got some very positive news. It is amazing that a doctor that busy would personally call a patient. I am praying that all goes well for you. Keep us all informed as to your progress. Great rate on the room too.
Kim
This is VERY good news....goood job. Keep on keepin on...... you go girl. Keep us informed...PLEASE
Jennie0 -
Hi dear Lisa,it sounds
Hi dear Lisa,it sounds really good.I like doctors who are good listeners and can really answer your questions.It sounds like Dr. Stephen Cantrell is a good doctor whom you can trust in.You are very resouceful to find the good rate hotel.Thank you very much for the updates.Best luck to you with the appointment.Take care.0 -
Lisa I hopeFight for my love said:Hi dear Lisa,it sounds
Hi dear Lisa,it sounds really good.I like doctors who are good listeners and can really answer your questions.It sounds like Dr. Stephen Cantrell is a good doctor whom you can trust in.You are very resouceful to find the good rate hotel.Thank you very much for the updates.Best luck to you with the appointment.Take care.
this works for you And wishing you the best. That would be so awesome if all the cancer would go away with this treatment.
Sending a hug
michelle0 -
Tremendous Lisa, thank you
Tremendous Lisa, thank you soooo much for sharing you experience with us. I am very happy and encouraged by your letter. Please keep sharing your story with us. I ask my oncologist about Neoplas and she said she can't condone untested cancer treatments. But I should do what I felt was best for me.
Oh well I'm to start a phase 1 trial 1st part of Dec. if that dosen't work I doing what you are doing. I have also heard that there is some medical interest in Lovasatin in other applications than what it is being used for now.
The very BEST to YOU,
Cyndi23240 -
Interferon
Hi Lisa, I tried to respond the other night but it wouldn't let me post. I was wondering what type of interferon it is? The reason is that there are many types. I have been on Beta interferon for MS. I did injection subq every other day for five years and muscle injections for two years. I did get flu systoms and they lasted about two weeks. I can't see the help for cancer??? I do know that the interferon I was on suppressed my immune system which stopped my MS progression for a bit.
I had a friend that was on a different interferon for Hep c and was soooo sick. Anyway ask lots of questions and do your homework and keep us informed. Best to you Paula0 -
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
0 -
Sounds like a great daylisa42 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
Lisa, I am happy for you, I am on FOLFIRI + Cetuximab. If we aren't making progress with this than I am looking at clinical trials next too. I will be closely following your progress.
Full speed ahead
Mike0 -
So interestinglisa42 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
Thanks for all the information, Lisa. We appreciate you being our pioneer & filling us in while you do it!! Praying for an AWESOME response for you.
Kelly0 -
Great!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
Lisa,
Sounds like you had a good visit with the oncologist. I pray that this treatment will be your miracle. Keep us posted!
*hugs*
Gail0 -
Thank you Lisa
Thank you so much for posting all this information. I find it very helpful. And yes, it was my oncologist that commented that he wasn't very impressed with interferon. I liked what your oncologist said about clinical trials, however, they are all unproven treatments just like Dr. Cantrells. I have the names of the two trials that Dr. Lenz has offered to me at USC. One of them has a waiting list of 15. The other requires a DNA test from your banked tissue block. I can give you the names of the trials if you want them.
I would be interested as Rob in Van has posted, if Dr. Cantrell feels that his treatment would work on spinal/scarum mets.
Thanks again for your post. I wish you all the best in the world that Dr. Cantrell's treatment works for you.
Together in hope,
Susan0 -
Susan and Rob- good questioncalifsue said:Thank you Lisa
Thank you so much for posting all this information. I find it very helpful. And yes, it was my oncologist that commented that he wasn't very impressed with interferon. I liked what your oncologist said about clinical trials, however, they are all unproven treatments just like Dr. Cantrells. I have the names of the two trials that Dr. Lenz has offered to me at USC. One of them has a waiting list of 15. The other requires a DNA test from your banked tissue block. I can give you the names of the trials if you want them.
I would be interested as Rob in Van has posted, if Dr. Cantrell feels that his treatment would work on spinal/scarum mets.
Thanks again for your post. I wish you all the best in the world that Dr. Cantrell's treatment works for you.
Together in hope,
Susan
Hi Susan and Rob,
That would be a good question to ask Dr. Cantrell- if he's had any patients w/ mets to the bones (or sacrum/spine, specifically), and if they've had success with the treatment. I never asked that since that's not my situation. I could try to remember to ask that question for you, but maybe you could send an email asking that question.
The email address is: office@neoplas.org
Susan, yes, I would like the name, number, and any info you have to give me about the two trials you mentioned. Maybe one of them will be the one my onc pointed out to me (I forgot what it was called- some number- I'll have to look at what I wrote down).
Take care,
Lisa0 -
You are awesome!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
Lisa, I am so impressed with your approach to this. It is so encourging that your Onc is on-side. It makes the whole scan thing work too. He is only on-side because you have helped to bring him there by your own preparation and efforts to inform him of Cantrell's program. It also shows that you have a good mutually trusting relationship with your Onc.
I'll work with some of the others with bone/spinal mets to see if we can explore this with Cantrell. You have done plenty to bring this information to us, Thank you!
Rob; in Vancouver0 -
Hi Susancalifsue said:Thank you Lisa
Thank you so much for posting all this information. I find it very helpful. And yes, it was my oncologist that commented that he wasn't very impressed with interferon. I liked what your oncologist said about clinical trials, however, they are all unproven treatments just like Dr. Cantrells. I have the names of the two trials that Dr. Lenz has offered to me at USC. One of them has a waiting list of 15. The other requires a DNA test from your banked tissue block. I can give you the names of the trials if you want them.
I would be interested as Rob in Van has posted, if Dr. Cantrell feels that his treatment would work on spinal/scarum mets.
Thanks again for your post. I wish you all the best in the world that Dr. Cantrell's treatment works for you.
Together in hope,
Susan
Do you want to pursue some of these questions with Dr. Cantrell? Or shall I? I'm happy for you to do it if you want.
Basically we want to know if there has been any success for folks like you and I with local or metastatic spread to the spine/sacrum or other bone structures.
I think others like johnsfo and butterfly23 (?) would be interested too.
Send me a private message if you want to.
Rob; in Vancouver0 -
Hi Lisa,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
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).
DennisR0
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