Question for All

Just a heads up; the FDA approved this immunotherapy drug Keytruda in combination with a chemotherapy drug. Ill try to send the link to you. ( if this site will let us) The question is how do we let our Oncologist know about such treatments? Are we only to accept what ever the Oncologist only recommends? I'm trying to research as much as i can about this disease on behalf of my father, so i'll be armed with as much info, as I can. But seems like my dad has become attached to his oncologist. (he has stage 4 NSCLC) . Will be hard to take him to another Oncologist, even for just another opinion. Just want all the possible remedies covered. How do you guys approach this?

Keep smiling.

9 Replies

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  • Bill,

    It should always be acceptable to ask your father's oncologist if he has heard about news such as this new FDA approval. He probably has. He may also have interesting opinions about it, and it would be good if he could share them with your father and you.

    Tomorrow (Thursday 5/18), there will be a discussion on Twitter at 8 pm EDT by the #lcsm group of patients, advocates, and medical professionals about this study and a couple of others. This study is actually controversial. The study shows an increase in progression-free survival, but it did not show an increase in overall survival. In other words, this could be a treatment combination that could result in more difficult side effects without leading to your father living longer than if he had the treatments one at a time. There is a paragraph describing the issue at this link: lcsmchat.com

    It's great that your dad has a good relationship with his oncologist. That said, it is always appropriate to get a second opinion. There's no commitment with talking to someone else, and doctors don't get their noses out of joint. My suggestion is that any second opinion should come from a real specialist, such as an oncologist who only treats lung cancer at a NCI-designated cancer center. cancer.gov/research/nci-rol...

    The more time I spend learning about these issues, the more I appreciate that our oncologists are operating in a gray zone where treatment decisions are complicated. I wish your father well as he sorts through his options.

    Anita

  • Opdivo is now a standard and free treatment for NSCLC. It's really should be the very 1st option to try because if it works it can be used long term. I know someone with NSCLC, getting opdivo, and doing very well. Diagnosed about a year ago. Keytruda is very similar.

    My husband has SCLC, his oncologist constantly trying to push for more chemo, but have done a lot of research and really, immunotherapy should be the 1st line of treatment!!! Unfortunately keytruda nor opdivo is approved in Australia by medicare, so have to self fund it! Shocking!

    But for NSCLC it's free. So your dad should give it a go. Tell the oncologist that what you want.

  • Vivi -- I'm confused, where is Opdivo "FREE"? It is certainly not "free" for me and also is not available or FDA approved in the US as a "First Line" treatment for Non-Small Cell Lung Cancer.

    It's actually quite expensive and each of my Infusions runs upwards of $7,500 USD and that is solely for the Opdivo, there are still hundreds more in hospital charges for each infusion. My insurance does cover it, with "pre-approval" but only as second line treatment and only after I have met a large annual deductible. Even then I still have to pay a portion of each treatment (and all my other care) until we have paid several thousand dollars each year before the insurance kicks in at 100% and then we have to start all over again every January and the deductible also goes UP every year. We are still making monthly payments to the hospital for care I had in 2016 and now have to also pay our new 2017 Deductible. We will be paying forever at this rate, but I dont' want to give up on Immunotherpay, because it has worked so well.

    I would LOVE find find out how one can get Opdivo for FREE? The only way I have ever heard is through the manufacturer, but it's all income based and we are not eligible. We are not poor, but also far from rich and at this rate we're going to be making payment for a long, long time.

    If there is some change or NEW way that NSCLC can obtain Opdivo FREE, please share!! That would be a huge benefit to me and my family.

  • I know for a fact that someone I personally know getting it for free. He's got NSCLC and that's in Australia. I hear from a lots of people , from inspire forum, that they getting it for free too.

    So I definitely would check with the oncologist, maybe go for a different one, for 2nd opinion. We had problems in Australia, for SCLC there is a access program which gives some discount for patients, but the hospital gave us the wrong info and wanted to charge full cost. So my point is , they could get it wrong!!!!

    So definitely would be worth finding out exactly why your dad has to pay for it. You can also ask an organisation like cancer council.

    Wish you all the best, keep us updated

  • I clearly misunderstood your post and read it to mean it was free for all NSCLC patients.

    💜

  • Have you asked about compassionate use? What did the onco say?

  • Vivi,

    Here is the US, Opdivo is already FDA approved treatment for NSCLC and I would not be eligible to apply to use it under "Compassionate Use/Expanded Access). That type of use is granted only for drugs which are in clinical trails or those which are experimental.

    Bristol Meyers (the drug manufacturer) does offer assistance programs for low income patients and/or those who do not have any drug coverage but again that is for a very limited amount of people.

    That information and how to apply for that assistance, can be found on Bristol Myers Website -- bmsaccesssupport.bmscustome...

    I have a BMS Care Coordinator who worked with us when I was first starting Opdivo -- we are NOT eligible for any type of assistance or reduced rates. And as noted, I do have insurance and it is covered with Pre Approval - however it is still VERY expensive and I pay thousands of dollar every year toward for my cancer care. Nonetheless, as much as it costing us -it has worked very well for me and so I pay it, which is my only option, if I want to stay on this treatment. It it were FREE that would be such a blessing....

  • FtB_Mary Might have some insight.

  • As scifiknitter mentioned, even though the combination of Keytruda with chemotherapy is now FDA approved, discussions about the study and how the combination will be used in clinical practice are ongoing. It's also important to know that the approval of the combination is for patients who have non-squamous NSCLC. Pemetrexed (one of the chemo drugs) is not used for patients with squamous cell lung cancer. I'm sure we will continue to learn more and additional studies are ongoing.

    I also agree that getting a second opinion is very useful. Getting a second opinion should not offend your doctor! Making decisions about treatment is never easy and knowing all the options is very important. Please keep us posted as to how you and your dad are doing.

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