First scan

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  • #94291
    richnkim
    Spectator

    Yes he had a biopsy of the tumor but no genetic testing done. As for the mets to the lungs one radiologist said it was lung cancer and the other said it looked like granulomas, the Dr said he is going with it being cancer. He said the only way to find out for sure would be to do a biopsy and what would be the reason it would not change anything.

    We are just hoping the scan shows shrinkage. Just something to give us a little hope.

    #94290
    vtkb
    Spectator

    Richnkim,

    Cis/gem seems to be the first treatment option offered by most if surgery is not an option. Due to the lung mets I presume your husband was deemed inoperable. When Kathy went to sloan I initially wondered why they didnt offer radiation or other options at first (just the cis/gem was offered, with a re-evaluation for surgery later), but now I realize that’s their first step. That being said, if you are not comfortable with the answers you ve received, then I’d highly suggest a third opinion. Based on some of the other users’ posts it seems that MD Anderson is probably the top place to go for non surgical options. Also you can search the clinical trials posts on this site and at clinicaltrials.gov to search for any trial your husband might be eligible for; although most seem to want the patient to have tried chemo first.

    Did your husband have a biopsy of the tumor? If so push to have it genetically tested. Weird that even at sloan we had to specifically ask for it to be tested but if genetic mutations are found it may open up clinical trial opportunities.

    Good luck,
    Billy

    #94289
    richnkim
    Spectator

    We are in such a small rural area that does not offer clinical trials or immunotheraphy and no molecular testing either. The only thing they offered was chemo. When i asked about radiation they said his cancer was too advanced for it.

    I thought when we went to Mayo they would of done more testing but they just went off of our Dr’s scans, they did take blood but that was it. We thought they would of come up with a better treatment plan but no the same as back home just chemo.

    Everyone says it’s stage 4 just go home and enjoy what time you have left. Well we have a young son at home who still needs his dad and we are willing to fight this, just wish we had the Drs willing to fight with us.

    #94287
    positivity
    Spectator

    You are in the right place to get support! As hard as it may be don’t take the exact months a doctor gives for a patients life. No one can determine that. Keep trying and be positive to do anything that will help your husband. Nutrition, lifestyle, well being is very important no matter what doctors recommend. I have been to so many medical appointments in a short period of time, and know they are not experts in nutrition. I had to create and be the judge of what my mom eats, including supplements. I don’t want to advise on nutrition as you know him the best.
    Did they suggest a break in chemo or continue? How about radiation? Has he had molecular testing for possible clinical trials or immunotherapy? What are all the options other than gem/cis?

    #13101
    richnkim
    Spectator

    Hello,

    Don’t even know where to start our lives have been turned upside down the last few months. What started out as what we thought was a gallbladder attack a few days before Christmas has turned into our worst nightmare.

    My husband is 55 and was diagnosed in Jan with stage 4 Intrahepatic Cholangiocarinoma with mets to the lungs. We have a 11 year old son who is taking this very hard.

    We did go to Mayo Clinic in Rochester MN for a second opinion and they gave us the same thing do nothing and live 3 months do chemo and maybe 1 year.

    So we are here at home doing chemo-Cisplatin and Gemcitabine. So far he is taking this pretty good just really tried and not wanting to eat much. He is done with the first round of chemo and he is going for his first ct scan this week. We are holding our breath hoping for the best.

    We are also talking with MD Anderson in Texas on the phone about maybe going down there for treatment. Where we live is very rural not uptodate on treatments so it’s very hard to get newer treatments around our area. I look online and ask the Dr. about giving my husband certain vit. like vit D3, Vit C, Folic Acid and all he says you can if you want. Then I asked if we could talk to a nutritionist and he set up the appt. and the lady was talking to us just fine about good foods and then asked what stage he was and we told her stage 4 and then she said if he wants a snickers candy bar for lunch have one, go thru McDonalds drivethru. We left soon after that.

    Sorry to be rambling on I haven’t had anyone to talk to about this. I took care of both of my parents who died of cancer I never thought in a million years I would be doing the same with my husband.

Viewing 5 posts - 31 through 35 (of 35 total)
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