after 5 months, drs still not 100% sure it is cca

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  • July 2, 2012 at 4:29 am #62574
    marions
    Moderator

    sweetgreen…this is the way I understand it: adenocarcinomas are throughout the body (breast, ovaries, bile ducts, liers, etc.) Doctors make the diagnoses of disease via exclusion.
    I hope this helped.
    Hugs,
    Marion

    July 2, 2012 at 2:44 am #62573
    sweetgreen
    Member

    Hi everyone, thank you so much for the inspiration! I never thought about the training at higher elevation thing equating to low red counts. But it is similar, huh? Congrats on the article, Maria. That is really cool!
    As for the tissue of origin test, isn’t that what the pathologist is supposed to do? We went to Lahey and saw Dr. Jenkins and he concurred that we may never get a true diagnosis. Now we are thinking of starting over and having a whole new system review the pathology…maybe Sloan or Mayo.

    July 2, 2012 at 2:36 am #62572
    marions
    Moderator

    Maria…I just love the title: Maria is running away from cancer. You are a true inspiration to all.
    Hugs,
    Marion

    July 1, 2012 at 6:46 pm #62571
    maria
    Spectator

    Love the runningpart!!
    2 miles is GOOOD! Remember the GOAL of 10k. He´ll get there.
    The body does get used to training with low counts and on chemo, PROMISE, but it takes a while.

    When I was on Gemzar and Oxaliplatin and running in wintertime (below -0’C, even in -18 C up in the north of Sweden visiting a friend) when you get the numbness of cold and my red were down below the floor I couldn´t run more then 500 meters sometimes. But I did it and took a break. Then I ran 500 m more. And so on. For 10 km. This was winter 2010. Those runs were harder then the marathon.
    I NEVER would have thought back then that I could do it a year and al half later. Or the halfmarathon 6 months later (in 2.04). NEVER. But I was so so determined that I would and kept on running. Wasn´t sure if this slow running with all these stops would even count as training. But it did!

    Running with low counts is like training on altitude. Hard but pays off well!
    He´s training like the pros, tell him that!
    He can do it and he will.

    Sorry for rambling about running ;) but I just love it! AND it´s saving my life. Says my doctor.

    Best of luck!!
    Maria

    PS they did a 5 page article about me in Swedish Runner´s world :) this April. This was my favorite daydream since spring 2010 :) It even was on the frontpage as in my fantasy “Maria is running away from cancer”

    June 30, 2012 at 11:12 pm #62570
    wallsm1
    Spectator

    Isn’t there a tissue of orgin test they can do?

    Susie

    June 30, 2012 at 12:57 pm #62569
    lainy
    Spectator

    SweetGreen, ALWAYS HOPEFUL!

    I asked for strength.
    God gave me difficulties to make me strong.
    I asked for wisdom.
    God gave me problems to solve.
    I asked for prosperity.
    God gave me brawn and brain to work.
    I asked for courage.
    God gave me dangers to overcome.
    I asked for patience.
    God placed me in situations where I was forced to wait.
    I asked for love.
    God gave me troubled people to help.
    I asked for favors.
    God gave me opportunities.
    I received nothing I wanted.
    I received everything I needed.
    Today is the first day of the rest of your life! By Aaron Hoopes

    June 30, 2012 at 12:32 pm #62568
    sweetgreen
    Member

    Thank you for that, Marion! He would like to run a 10 k race to start–with me! But when he does run, it is hard. 2 miles is the most he gets in. His counts have been hit hard by the gemzar carbo trtmts. But Maria does still inspire him! My mom worked a booth at a marathon and met a man with pancreatic cancer who ran, and was getting a response from chemo after 5 years! Hopeful, huh?

    June 30, 2012 at 3:18 am #62567
    marions
    Moderator

    Bridget….yes, we have had several people with a diagnoses of adenocarcinoma. I agree with the Doctor in that as long has your husband is responding to the chemo then it really does not matter wich of the two cancers it is. I wish for continued success. BTW, has he been inspired by our Maria and is continuing his running?
    Hugs,
    Marion

    June 30, 2012 at 2:46 am #7047
    sweetgreen
    Member

    Has this happened to anyone else? Every dr we see says my husbands cancer could be either cca or pancreatic. The biopsies can only tell that it is adenocarcinoma. There is tumor that has been seen in his distal bile duct, but no tumor visible anywhere else. The vein to his liver has some compression, which apparently is more of a pan can thing. Drs
    say chemo is working, so just keep it up. And we may never know exactly what he is fighting. Weird, huh?

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