Johns Hopkins opinion

robinvan said:

Hi Sheri
It is good to know you are getting the right treatment. Thanks for the update.

Rob; in Vancouver

lisa42 said:

hi
Hi Sheri,

I'm so glad that you got this second opinion and that they validated that you've already been getting the right treatment, and that they wouldn't have done anything differently. I think it was worth it for you just to go and hear that from them!

I can't wait to see "what happens with Lisa" too!
Hearing about so many doctors who haven't heard of Cantrell or with mixing the Lovastatin and interferon does make me a bit nervous, but I'm still convinced it's worth trying. Cantrell conceded that interferon was not successful in the past, but that the combination of the Lovastatin/interferon is what makes all the difference. I don't know who he spoke to at John Hopkins, but it obviously wasn't the doctor you spoke with! Cantrell said it wasn't anything official, just one man from there who contacted him- he didn't say who he was- probably someone in the research dept, I'd imagine though. Interesting that he had never heard of lovastatin. My own oncologist, who is supportive of me going to Cantrell, said it sounds like we'll be hearing more about this in the future & that there is some research going on about it, although no clinical trials yet with it.

Again, I'm glad for your good appointment and confirming news.
You take care, Sheri, and have a great day and week!

Lisa

lisa42 said:

heard back from Dr. Ben from John Hopkins
Hi Everyone,

I thought I'd report back to you all who are interested, that I did hear back on my email from Dr. Ben from John Hopkins. He had commented above that he was concerned about me going to see Dr. Cantrell. *BTW, DAN R pm'd me and said he had his appt w/ Dr. Cantrell over the past 2 days & really liked him and has started treatment. I'm hoping Dan will report to us as he gets into the treatment more on his side effects and, of course, on his progress on the treatment.

Anyhow, Ben from Hopkins wrote to me saying he was concerned over the fact that Dr. Cantrell was not trained as an oncologist, but was a facial surgeon. This is true, actually, but I believe he has done lots of research and seemed very, very knowledgeable about cancer and the many types of treatments currently in use. He also was concerned about the amount of money I'd be having to pay. I pointed out that I really don't think it will be that much at all- probably far less than a lot of people are paying for the "standard" treatments ($950 for the initial 2 day appt, $200-300 for follow up appts every 2-3 months, and that the medication is not that expensive and some insurances will pay for it). He pointed out that clinical trials are monitored carefully and that finding a cure for cancer in the future depends upon having carefully monitored clinical trials with the outcomes of patients followed up very carefully (i.e. how many are disease free after a year, what exactly does Cantrell consider as a successful treatment, etc.). I replied that I appreciated his concerns, but that I still am planning on going forward with this. I also pointed out how my oncologist is supportive of me doing this and feels the medications (Lovastatin and interferon) are relatively safe when monitored (which he will be doing for me, as well as Dr. Cantrell will be doing). Clinical trials may be monitored more carefully, but if I'm going to do a clinical trial with unknown agents that I've never used before, the outcome of the clinical trial will be just as unknown as this treatment w/ Cantrell will be. In fact, I feel that since I've heard of and spoken to a patient and Dr. Cantrell about people already treated, that I know more about the outcome of this treatment than I would with joining a clinical trial. I plan on putting 10 weeks into it, then evaluate whether or not it's helping. If, at that point, it does not seem to be helping me, then I'd find a clinical trial to join. But I am doing this first.
I am still appreciate of his concerns, but I was glad to read them and still feel good about proceeding forward with this. That's all-

Here is Ben's response back to me after I replied to his most recent email:

"Hi Lisa,

Thanks for your email. I think you are making an informed choice and that's really all I wanted to make sure of. In this business there are many patients who are taken advantage of and I wanted to be sure that this was not the case with you and it clearly is not. I do wish you all the best and if there is anything I can do for you or your family in the future, please just let me know.

Warmest regards,
Ben"

Have a great weekend everyone-
Lisa