2nd opinion,did not work out

[zflammia123]

Hi all,I am new to writing posts here,I have only been reading them In June 2016 a spot was noted on xray .After many biopsy's and scans in Sept they .stage it 3A.I did 30 days of radiation and 7 chemo's texol and another drug along with many supplements from the natural path. I go to Dana Faber for a 2nd opinion. They ask why are you doing treatment and not surgery? SO I stop treatment and get a pet scan,not what we expected,New Mets on the adrenal gland.Now stage 4,this is the 2nd time surgery was taken off the table,just not in the cards.I must add I struggle with western medicine I did a lot of meditation hypnosis ,reiki ,acupuncture to get though a treatment,that was poison and didn't work.So now the plan is cyber-knife to the adrenal gland,and then a new scan in 2-3 months. I started a new diet and have adjusted all my supplements.I pray all these mushrooms and immune builders keep this at bay.or even kill the crap out of them!! I refuse to give in I have 6 grandchildren that mean the world to me I have lots of life to live.I asked doc about trails and testing the Bio of the tumors,he said he is not ready to open those doors yet?Your thoughts are appreciated

[Denzie Moderator Volunteer]

At stage 4 now the tumor should be evaluated for mutations and precision medication. Take care with the supplements as some interfere with the chemo.

You might consider seeing an integrative oncologist as they will have a deeper understanding of supplements as medicine

[zflammia123 in reply to Denzie]

Thanks Denise, the natural path I went to specializes in onocology so yes there were certain supplements I had to stop taking while I was in treatment unfortunately that's all just wasn't my mix

[Denzie Moderator Volunteer in reply to zflammia123]

Scream and holler if that's what it takes but get that mutation testing done. Call the office every day, squeak, squeak loud.

[FtB_Peggy in reply to Denzie]

Well said, Denzie!

[Nay2018 in reply to FtB_Peggy]

Blessed to not have mutation test requested. The surgeon on my health team asked for mutation evaluation before surgery or treatments since PETscan lit up on some lymph nodes around my lung tumor. Sure enough mutation showed positive results. February was a year since my last chemo treatment. Nov 2015 was last of 36 radiation treatments. Feb 2017 CtScan showed no activity on the tumor that got shrunk from 4 cm. to 2cm. I was told on that visit I must continue to do a followup every 3 months for another year. Realistically, a miracle would be in the works if nothing occurred between that year or after that. Being a former patient for 15 yrs. of a pulmonary doctor who knew a Ctscan had been ordered while I was hospitalized in 2013 and neglected to inform me that a CtScan needed to be repeated in 6 months on radiologist recommendations, trying to comprehend why in August 2015 on a regular xray required by the surgeon who I requested administer a colonoscopy due to my stomach issues had to tell me I had to put procedure on hold due to lung mass detected and lastly leave my small town to seek professional cancer treatment in a specialized hospital many miles away from my safe home makes me unafraid of the future with all the blessed days I've had since Aug 3rd 2015. Whatever my health team recommends next is in my hands also as my choice. Blessings & prayers to each & everyone on this appreciated site. Go grab air and live the moment. Snap an everlasting memory!

[zflammia123 in reply to Denzie]

So it ends up when I called DF in Boston,left message for DR, that his plan A didn't work out what would there plan B be.There is a god they did mutation testing and then called me back a few days later ask if I would consider a trail.I an PTL-1 positive.

The trail is with Keytruda and another drug that has never been given together and is not FDA approved yet. A little scary.

How has everyone done with the Keytruda?

[FtB_Peggy]

zflammia123,

Sorry to hear about the change in the staging of your lung cancer. When are you having the CyberKnife procedure? Please let us know how that goes.

Denzie has given you some great information - I would encourage you to talk to your medical team about the evaluation for mutations, and if you are on chemo again at any point and are still using the supplements, please let your oncologist know. You can also talk with the pharmaceutical company that produces whatever chemo drug you might be on. They will know what will interfere with their meds in a negative way.

I look forward to hearing from you soon.

[zflammia123 in reply to FtB_Peggy]

Hello fellow Warriors so I go to the radiologist today who strongly disagrees with CyberKnife and it's going to have a conversation with my onocologist I'm so confused he's saying I should have chemo because it's just going to keep spreading and doesn't want to do just one tumor.

[scifiknitter Blogger in reply to zflammia123]

It sounds like your radiologist is a good doctor - unwilling to give a patient a treatment that he believes will not be effective. Good luck sorting this out, it sounds like you will have to push to get answers you understand. Please ask your doctors to explain things plainly, especially why they do not seem to think you are a candidate for mutation testing.

Anita