Conventional & CAM --- Question

MikeDerksen
MikeDerksen Member Posts: 4
in Lung Cancer #1

Good evening,

I have a question for those who might have an answer.

I was diagnosed earlier this year with NSCLC, stage iv, with mets to the brain. It seems quite far advanced and the chemo offered was palliative, not curative. 

Right now I'm doing radiation for the brain lesions. Nothing conventional for the actual lung cancer, except an alternative (or at least not FDA-approved) Rigvir virus treatment (one shot 2mg per week).

Does anybody know anything about the Rigvir used with NSCLC and how successful/unsuccessful it is or may be? 

I think it should do some good, but obviously I'm having back and forth mind changes all the time. Was this good now? Was it not good? Back and forth.

Might chemo be a better option?

Any input?

Thanks so much.

Mike

Comments

  • MyJourneywithCancer
    MyJourneywithCancer Member Posts: 82
    #2
    Hello Mike,
    I am sorry to hear what you are going through lately.
    There are two more options, which are unfortunately rarely discussed in the clinic, but many breakthroughs are being made recently in these areas, namely, targeted therapy and immunotherapy.
    In lung cancer involving brain metastasis, like your case, they are feasible alternatives with a few additional diagnostic. For the targeted therapy, a mutation profiling needs to be done from the biopsy or circulating DNA in blood, and some mutations, called "actionable", can be targeted by specific molecular drugs. For the immunotherapy such as PD-1/CTLA-4 blockade, a prior knowledge of a mismatch repair deficiency, high mutation burden in tumor, microsatellite insatiability or high PDL1, may be helpful in decision.
    Hope this helps.
    Best wishes,
  • MikeDerksen
    MikeDerksen Member Posts: 4
    #3
    MyJourneywithCancer said:

    Hello Mike,
    I am sorry to hear what you are going through lately.
    There are two more options, which are unfortunately rarely discussed in the clinic, but many breakthroughs are being made recently in these areas, namely, targeted therapy and immunotherapy.
    In lung cancer involving brain metastasis, like your case, they are feasible alternatives with a few additional diagnostic. For the targeted therapy, a mutation profiling needs to be done from the biopsy or circulating DNA in blood, and some mutations, called "actionable", can be targeted by specific molecular drugs. For the immunotherapy such as PD-1/CTLA-4 blockade, a prior knowledge of a mismatch repair deficiency, high mutation burden in tumor, microsatellite insatiability or high PDL1, may be helpful in decision.
    Hope this helps.
    Best wishes,

    Hi, and thank you for the response. What you say sounds interesting. My only question would be: Where and how could I do this, and how much would this cost? I've had people tell me about doing certain blood tests to check for things, but the tests alone are so expensive there won't be money left for any treatment. It does seem to depend a lot on money, this whole cancer survival scenario. Sadly, but nothing new in this world.

    The targeted therapy and immunotherapy are alternative then? What's the success rate, do you know?

    Thanks for the input.

    Mike

  • MyJourneywithCancer
    MyJourneywithCancer Member Posts: 82
    edited August 2017 #4
    MikeDerksen said:

    Hi, and thank you for the response. What you say sounds interesting. My only question would be: Where and how could I do this, and how much would this cost? I've had people tell me about doing certain blood tests to check for things, but the tests alone are so expensive there won't be money left for any treatment. It does seem to depend a lot on money, this whole cancer survival scenario. Sadly, but nothing new in this world.

    The targeted therapy and immunotherapy are alternative then? What's the success rate, do you know?

    Thanks for the input.

    Mike

    Hi
    You are right. Unfortunately, like most other modernization of our life, even basic needs are getting associated with increasing cost.
    As for the cancer genomic profiling and micro-satellite status, if you are in the US, these are a few centers including this one: https://www.foundationmedicine.com/, and insurance usually bears the cost. If you already have not done so, I would also talk to the oncologist’s office about Clinical Trials that are appropriate for your disease criteria and potential efficacy.
    In my personal opinion, conventional therapies such as chemo, surgery or radiation, are like using a sledgehammer to crack a nut. Apart from my personal story, here are a few examples showing better promise in new approaches targeting the issues with more specificity:
    https://www.ncbi.nlm.nih.gov/pubmed/28739315
    https://www.ncbi.nlm.nih.gov/pubmed/28734822
    But, that's just me. Please feel free to send me an email if you like.
    Thank you.
  • MikeDerksen
    MikeDerksen Member Posts: 4
    edited August 2017 #5
    Thanks

    Hi. Thanks for the response. I'll check it out. Yes, my oncologist's office does offer clinical trials. I just haven't looked into that yet. So that would be another option on top. I'll take a look at those links. Thank you.

     

     

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