Update: No Referral Yet

Hey Mike, I feel your pain but understand. There has been a lot of talk today about denials. This whole idea of “Standard of Care” can be really problematic even though it’s a necessary concept at the same time and something the insurance companies and systems like Kaiser definitely fall back on. But for example, do we really think that a family care doctor is going to treat thyroid issues in the same way that an endrocrinologist will! No, the endrocrinologist, with a exponentially greater body of knowledge in one area of disease, will use narrower ranges for diagnosis as well as different measures of therapeutic success, be aware of the clinical research in their disease area and will most likely want to use far greater monitoring of the patient and disease status. If I’m having significant thyroid issues, I’m not having my general practitioner manage a narrow therapeutic index drug and tell me my ranges look fine based on very broad values, not because they are bad, because there are better options! Does the family practitioner play a hugely valid contribution to us, of course, but once you are progressing to some pretty specific disease states, it is time to see a specialist! Same for melanoma specialist vs. general oncologist. As my dearly departed father would say, IT’S NOT ROCKET SCIENCE, and he worked in the rocket/missile industry as an engineer for several decades!
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Sorry, just tired and angry on your behalf and having to deal with the run around. IL-2 is a standard of care (Dr. Amaria did offer this to my husband 5 years ago, but with no evidence of disease it didn’t make sense to my husband to do it at that time since the side effects can be rough based on either high or low dose IL-2, that would be my first question, what dose are they proposing since for high dose they often hospitalize during treatment) and completely viable option, I was just reading Celeste’s IL-2 study information, it just irks me that they deny a referral to a specialist. KEEP ROCKIN ON MIKE!

As I told my dad Mike, when he had gotten caught up in a system and was having some significant health issues “Don’t let them win Dad, you show them by getting better and do it quickly” 🙂 He did, he doesn’t like the system winning either 😉

Hi Mike, taking advice from a Canadian that does not know the American system is what I am about to offer!!! I would work the system backwards, get dr. Omid Hamid’s people involved from their end. I am sure they deal with these type of medical people all the time. So here is my two cents as to why I would fight for a second opinion ——–options Mike!!! If you go to a small food store you don’t get much selection but if you go to one of the big chain stores you have options. Dr. Hamid’s clinic or Md Anderson or Memorial Sloan Kettering etc etc have connections to various drug companies and are able to offer the client (patient) choices!!!! It may be in the end they agree with the option being offered you of iL-2 but I would think that would be of last resort and more probably it would be combined with TiL’s and not by itself!!! Take a minute and look at the menu that the Angeles Clinic offers, like a fancy restaurant they have a menu on their home page!!! Best Wishes!!!Ed http://www.theangelesclinic.org/

I agree with Ed.

Mike, I have seen Bubbles (maybe her?) recommend that patients here email one of the melanoma big wigs who always responds quickly, even to patients who aren’t his own. But I dont remember which doc it is!! Weber? Luke? It wasn’t Hamid but somebody of that caliber. Anyway, what about finding out who that is, email him and ask if IL-2 is what he’d recommend! If the IL-2 is the best choice according to he who returns emails, then you might have some piece of mind with Jang. If the melanoma doc recommends another treatment via email you have more ammunition to plead your case to go to Hamid. Bubbles, Ed, who is it? It’s one of the top guys.

I’ve been thinking about your daily for days, Mike! But I’ve especially been thinking about what to reply to you today. I guess the biggest most current problem I have with Jang, is what he did and did not say when he replied to you about your request for an out-of-network referral, which you posted on July 23.

First what he did say: he replied that he wouldn’t refer you, but you could go do what you like on your own, via a nurse. Not from him personally, but from a nurse. Okay – that’s how some docs roll.
BUT – what he didn’t say!!!!!!!!!!!!!!!!! On July 23!!! He didn’t say, “I got you!!! Come in tomorrow and let’s go over what options I have for your treatment. We’ll get this going!!!” He just declined the referral.

THAT is what I have a serious problem with. There is no need on earth that you should have had to wait until August 15th to MEET (not treat – MEET) with your oncologist to determine a plan of action when your surgery was summarily cancelled on JULY 10. That is over a month with no treatment and no discussion. That is not only cruel, it is not consistent with appropriate medical care. That is NOT how you deal with a Stage IV melanoma patient in urgent need of a treatment plan. Hell, that is not how you deal with a fellow human in need of anything on July 10!!!

So…I have a really hard time continuing dealing with a doctor who does not deal with me. But, you have to do what you think is best for you under your circumstances. In case you need them for up-coming discussions….here are the things I’ve already posted that might be reasonable treatment options for consideration – cause unlike Jang – I got plans:

If you have a butt mass and an “anterior abd wall mass” those should be reachable by injection….making intralesional therapy (Like T-VEC) an option. I would want to stay on Opdivo and add the intralesional if you go that route. Here are a ton of reports on intralesionals: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2018/12/repor…

Another thought is additional genetic tumor testing for “weird” mutations. Here is a trial that has been ongoing: https://clinicaltrials.gov/ct2/show/NCT02465060?term=nci+match Some melanoma patients, especially those who have not responded to current therapies have found success this way. For instance Maureen’s husband (on this board) is doing well being treated with a drug typically used for HER-2 breast cancer. https://melanoma.org/legacy/find-support/patient-community/mpip-melanoma…

Then there are these options as they came out of ASCO this year: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2019/06/new-st… Other trials are out there as well.

And IL-2 is still a real option. TIL is out there as well. Radiation can be of benefit, too.

Now….back to today – Michelle’s rationale seems very wise and worthwhile to me as well. I have NEVER known Jeff Weber to fail to answer a request for information or advice from a melanoma patient. He will need a concise history of what you have been through and then straight up ask him what he would advise that you do next. Here is his contact info: https://nyulangone.org/doctors/1053348706/jeffrey-s-weber You could call the number listed and ask that his nurse call you back and go from there.

I am so very sorry that you have had to fight this horrible battle to attain care. Fighting melanoma is more than enough. We are all here for you. celeste