• Clinical trials

    Asked by Jasonscohen82 on Monday, February 19, 2018

    Clinical trials

    Hi All,

    I had a question about clinical trials. Basically:

    1) How to get involved? I tried calling 1 or 2 and got helpful responses, but I'm not really sure if this is something I should be doing myself or if our oncologist should be involved.

    2) How to pay? Are they normally covered by the organization offering the trial or does insurance normally cover them? There are a lot of them offered by institutions outside of my Mom's HMO network, and none of them discuss anything about payment.

    3) Role if any of your regular oncologist or team of doctors.

    I'm asking this because my mom's doctor seemed reluctant to recommend any or to let us out of her care. I really had to pull teeth to get advice out of her. It's not actually that important right at the moment because standard chemo + radiation should work fine for round 1 treatment, but I want to have good options for round 2 lined up as this cancer tends to recur relatively quickly.

    22 Answers from the Community

    22 answers
    • GregP_WN's Avatar
      GregP_WN

      We have a few people that are experienced with trials, they will have some information to give you when they see this. We hope your Mom does ok with the first rounds and won't need it!

      7 months ago
    • LiveWithCancer's Avatar
      LiveWithCancer

      When i joined a clinical trial, my new oncologist at a university hospital recommended it. The trial paid for the drug. My insurance and I had to pay for everything else.

      I had to change doctors and medical facilities when i went into my trial. If i were to go into another, i would likely be able to stay at the same NCI facility and with the same doctor.

      Have you been looking at clinicaltrials.gov or another site to find potential trials?

      7 months ago
    • GregP_WN's Avatar
      GregP_WN

      Here is our page on Pinterest with a few different links on it for clinical trial information. It hasn't been updated in a while, but there is still some good information there. https://www.pinterest.com/whatnextcancer/clinical-trials/

      7 months ago
    • Jasonscohen82's Avatar
      Jasonscohen82

      I went to clinicaltials.gov and found a comprehensive list of all SCLC trials in our area...there are a lot of them. That's what I'm trying to figure out...how do I sift through these and figure out which one is right?

      When you joined a clinical trial, was it something your original oncologist was helpful in advising you about and facilitating, or did you need to do all the legwork? As I mentioned, our 2 oncologists were not very helpful.

      I also called my Mom's insurance company, and the person who I spoke to clearly had no idea what I was talking about, so I was wondering what the normal protocol is for this. She has a limited set of HMO Group options in terms of regular treatment, but I don't know if it's standard for insurance to cover this.

      7 months ago
    • geekling's Avatar
      geekling

      Check under the "people" tab for an insurance whisperer nicknamed @BuckeyeShelby.

      She has worked for some time in the insurance industry. If she has time and ability she might be able to help you with the right questions for insurance.

      You may need to do legwork and simply contact each trial to see what is up. I would keep bringing things up to the oncologist. Several people in trials for various cancers are using immunotherapy drugs, mostly Optivo. As to whether this is apropos for your Mom, I simply have no answer.

      Best wishes and very good luck in your search to get help for your Mom.

      7 months ago
    • barryboomer's Avatar
      barryboomer

      Good Luck...Why not have her come here?

      7 months ago
    • LiveWithCancer's Avatar
      LiveWithCancer

      Every clinical trial will be different. However, I think they often only pay for the expenses that are directly related to the trial, like the trial drug, maybe some extra biopsies or scans. Your insurance company probably would be required to pay for regular visits, routine scans, bloodwork, etc. Mine had no problem with that at all. They never questioned scans every 6 weeks or any of the other trial requirements that they ended up being charged for.

      My first oncologist suggested that I consider a clinical trial and referred me to a group that might have available trials. They took too long to get back to me, so I went to my primary care doctor and asked for a referral to a university hospital. When I met with the referred oncologist, he had a trial in mind for me. I was on that trial for 4+ years.

      When a tumor outsmarted the drug I was on, my oncologist had several other trials that were possibilities for me (though I did not get into any of them).

      I don't know where your mom is being treated, but if she is not at a NCI center, I would get her to one, if I could. My oncologist is a researcher at heart. He sees patients two afternoons a week and spends a lot of the rest of his time in the lab or teaching.

      There are not as many therapies for small cell lung cancer as nonsmall lung cancer. But, I was at a conference recently where they were discussing the fact that new trials will be upcoming. When you look at the clinicaltrials.gov site, you have to know if the trials are offered at your center or not, whether they are full or not, etc. Definitely, it is easier to have a professional help navigate for you. (See if it is of any help to visit Cancer Research Institute's Clinical Trial finder at https://www.cancerresearch.org/patients/clinical-trials. They have people who can help you navigate the confusing maze. However, I think they only deal with immunotherapy.)

      Geekling mentioned Opdivo. That is an approved drug for small cell lung cancer now. If your mother has the right mutations (PDL1), the drug is fairly effective against small cell lung cancer. (I THINK the PDL1 mutation is found in SCLC as well as NSCLC anyway.) You might ask your mom's doctors about whether Opdivo might be right for her. It wouldn't be given as a trial since it is FDA approved, unless it was given in combination with other therapies.

      As an aside, I have a friend who was diagnosed with stage IV small cell lung cancer. She underwent standard chemotherapy and eight years later, she is still No Evidence of Disease.

      7 months ago
    • LiveWithCancer's Avatar
      LiveWithCancer

      Jason, you're in NY. Are you close enough to take your mom to Memorial Sloan Kettering? That's definitely where I would be if at all possible. At least go there for some opinions and help in determining what next. They have incredible doctors and researchers there and would be on top of what's going on in the research world.

      7 months ago
    • BuckeyeShelby's Avatar
      BuckeyeShelby

      Hey Jason. Geeking bandied me around, so I thought I'd drop my : ) I don't know anything first hand on clinical trials, as the regular standbys have gotten me through (knock on wood). But I do know something about insurance, as I work in the industry. Because my company is a TPA instead of a big major insurer, like an Aetna or Cigna, almost all of our plans are PPO instead of HMO. But most of our plans do NOT cover clinical trials, as there are exclusions for experimental treatment. They tend to cover the maintenance treatment, but not treatment directly associated w/the trial -- as I understand it, most clinical trials absorb those costs into the trial. And most HMO policies tend to be more strict that PPO as far as where you can be seen, by whom, etc. My suggestion is to discuss it with the oncologist/billing team associated w/the trial. Good luck. I hope mom does well.

      7 months ago
    • geekling's Avatar
      geekling

      Lol. This was no bandy @BuckeyeShelby. I truly believe in your powers of directing persuasion.

      Hugz.

      7 months ago
    • Jasonscohen82's Avatar
      Jasonscohen82

      Thank you all for your help.

      I'm on here because my Mom is basically computer illiterate, and I also am taking on the administrative parts of her care so she can be be as relaxed as possible...she just lost my father, who normally took care of this kind of stuff. In addition, while she knows that her cancer is not curable, she does not know how bad the prognosis is in general, so I want to keep her far away from that information. Right now she is happy and positive, and I'd like to keep it that way. She had a small brain tumor fully resected, and it was so clean that her doctors only recommended gamma knife (instead of WBRT), and her primary tumor is very small and peripheral. So, going into chemo tomorrow, I want her to remain upbeat. Those are good signs, but given how deadly this disease is, it's not helpful for her to do too much digging.

      We are getting treatment at Columbia Presbyterian and Lawrence Presbyterian - one of the top 20 cancer hospitals in the US. However, it seems that more interesting trials are going on at Mr. Sinai and definitely Sloan Kettering (as LiveWithCancer pointed out), so that's where I'm looking at these trials. The ones that seem promising are with Rova-T (which I believe they are aiming to get full FDA approval in late 2018/early 2019), Nivolumab (Opdivo) and EZH2 inhibitors.

      From what it sounds like, I will start questioning the doctor more aggressively about these trials as we go through the initial rounds of chemo about a backup plan for the second line and also contact the trial administrators by myself.

      Mt. Sinai and Columbia are in my Mom's HMO network, but Sloan Kettering is not. I'll see if we can get at least some of it all covered.

      7 months ago
    • Jasonscohen82's Avatar
      Jasonscohen82

      @LiveWithCancer ... 8 years, wow that's incredible. I can only pray my Mom does that well. Like I said, her prognostic factors are good: small primary tumor (2x1cm) with only a couple nearby lymph nodes spread. Only 1 small (2cm) metastasis in the brain which was fully resected. Excellent overall health and attitude (doctors said she was an 11 out of 10 on the "eyeball test."). However, this disease is such a terrible thing, I don't want to get too hopeful.

      With respect to your friend, what was her original condition like? Did she have limited spread? Was she otherwise healthy?

      Thanks.

      7 months ago
    • geekling's Avatar
      geekling

      @Jasonscohen82 dont say your Mom is incurable. Miracles hapoen every day. There are people on this board who have been NED (no evidence of disease) for ages. Hope for the best. Prepare for the worst. Have gratitude for everything in between.

      7 months ago
    • SandiA's Avatar
      SandiA

      Hi Jason, you probably already have great advice. I just wanted to add my experience. I was in a clinical trial for stage 4 melanoma. I was given opdivo. My medical oncologist suggested it. After I qualified and started the trial my medical oncologist worked with the trial people and he was still my doctor. Someone from the trial would stop by at all my visits just to see if I had any questions and to let me know about any new side effects. I also had to turn in a chart at each visit listing all my daily side effects. They requested extra blood work and a lung biopsy for study purposes. They said I could say no but I wanted to help them any way I could. There was no charge for the drugs and labs. They also helped with some of my gas money since we had to drive an hour and a half. I sort of remember paying what my insurance didn’t for some of the scans but I could be wrong. All in all it was a good experience and the result were great. I am still beating the odd. Let us know how things go. Wishing you and your mom all the best.

      7 months ago
    • andreacha's Avatar
      andreacha

      Jasonscohen82 - Unfortunately, as yet I have not been involved with any clinical trials so I cannot offer you any advice. However, I did want to say that I would be proud to have you as a son. You are such a good example of the difference a child can make when dealing with Cancer. I have one child and she couldn't tell you what my last scans showed because she doesn't want to get involved with the Cancer. She finally calls each day to check on me but she sure isn't like "Jason". Praying for your Mom. Don't ever change the way you are.

      7 months ago
    • LiveWithCancer's Avatar
      LiveWithCancer

      Jason, my friend with SCLC was metastatic. She wasn't expected to make a year. She drank wheat grass often and just had traditional treatments. She did not quit smoking during treatments nor has she quit since.

      I agree with @andreacha, your mom is a lucky woman to have you so involved and protective.

      I have NSCLC. I was supposed to live 4 months. That prognosis was given in 2012. Nivolumab (Opdivo) changed all of that. Saw the doctor today for results of latest scan and all remains stable.

      Best of luck to your mom and you! (I am sorry for the recent loss of your dad. Take care of you!)

      7 months ago
    • Jasonscohen82's Avatar
      Jasonscohen82

      Thank you so much for sharing your experience @SandiA and for your encouragement @geekling.

      @andreacha, what you wrote brought tears to my eyes. My mom is of course the one facing the long odds, but this has been so difficult for me. I had been living abroad for most of the last 13 years and left my life and career to come home and help my Mom care for my father, as I'd been away so long. He passed away right after Thanksgiving, and in early January as I was preparing for a vacation and then move back to where I normally live, my Mom collapsed and all of this happened. Little did I know I'd be taking care of both of my parents when I came back a year ago. I have reached out to our nearby chapter of Gilda's Club (as in Gilda Radner) for some group support and counseling - boy, do I need it.

      I'm not sure if this helps with your daughter, but maybe I can understand her a little. I have 3 siblings, 2 of whom live nearby. As they're all married and have jobs and kids, they can't take on the role I have. But beyond that, they wouldn't want to unless they're forced. It's very hard on them, so they like to come by and call - it makes them and my Mom feel good - but then go home and leave it all behind when they return to their normal lives. It's a coping mechanism. When the chemo starts tomorrow, I know there will be some very rough days. For them, they can drop by and of course my Mom will "show up" and put on a very good show like sick people can do. However, they won't have to see the aftermath, and they can compartmentalize to block it out of their minds. It's a natural defense mechanism, and though maybe they could be better, I can empathize with their behavior. Hopefully that makes some sense.

      7 months ago
    • RubyFaye's Avatar
      RubyFaye

      Jason, you have heard some great info and I cannot add to that because I haven't needed a clinical trial at this point, but what I do want to say is "what a wonderful son you are" and I will be praying for your Mother and You!!

      7 months ago
    • BarbarainBham's Avatar
      BarbarainBham

      Jason, I agree with all the above good advice, but wanted to add that maybe her current doctors weren't helpful because they thought your mother was not going to complete the treatments they prescribed.

      You'll need to ask your questions about cost to the people with each study, because that can vary. I think most studies don't charge the patient. Best wishes.

      7 months ago
    • Jasonscohen82's Avatar
      Jasonscohen82

      Thanks @LiveWithCancer and congratulations on your survival story. Opdivo is currently being tested in SCLC and has shown some positive results, so that's one of the things I'm keeping in mind for next steps.

      First round of chemo was today. I know it tends to have a cumulative effect, but no side effects whatsoever yet. Gotta take the small victories where they come I guess!

      7 months ago
    • maryjimhath's Avatar
      maryjimhath

      Hi Jason! I just wanted to tell you to try and stay positive. I was told 8 years ago I had 6 mos to 1 year and I’m still fighting. Your mom is really blessed to have you to help her so much. I have moved in with my son and his family and can appreciate having a son that I can lean on and depend on. I’ve been on Opdivo and it shrunk my tumors significantly If your mom has trouble with the chemo it is definetly something to ask about. Stay strong and God bless you and your mom. Know we are all here for you.

      7 months ago
    • Jasonscohen82's Avatar
      Jasonscohen82

      Just an update. We've now completed one round of chemo, and the doctors are hoping to do a minimum of four. I know some of the effects are cumulative, but it's pretty remarkable - no side-effects whatsoever. She is functioning at her usual (high) level. She's a bit bloated from the steroids, but that started even before the chemo.

      I know it won't get any better, but this was a big relief for me and a small victory overall. We can enjoy the next 2 weeks before the next round at least.

      7 months ago

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