unresectable / treatment resistent Mediastinal Germ Cell tumor (yolk sac)

eunibabe
eunibabe Member Posts: 3
in Testicular Cancer #1
Hello,

My boyfriend (we live together) was diagnosed with Mediastinal NSGCT (metastastes to liver, spleen, bone) about 11 months ago, after several rounds of different types of chemo, stem cell transplant, radiation to the spine...the mediastinal mass shrank only a bit (16cm to 12cm). Some metastastes responsed to chemo & radation, others remain. Oral Etoposide has really done a number on his white count and hemaglobin. Is there anything else?

Radioemoblization? chemoembolization? I know these procedures are primarily done to liver tumor... but the theory behind these procedures seems logical if apply to other solid tumor type that's unresectable and tricky to treat. I just can't believe I couldn't find anything or cases that we can use as reference.

Does anyone have any information? Please help. We are very desperate...

Thanks very much.

eunibabe

Comments

  • Davepet
    Davepet Member Posts: 92
    #2
    Where are you located? Has
    Where are you located? Has he been seen by a center of excellence? Dr Einhorn is probably the top TC doc in the world & he'll answer your email personally. Afraid I don't have his address handy, but shouldn't be hard to find.
    Good Luck!

    Dave
  • tink100
    tink100 Member Posts: 1
    #3
    my boyfriend has mediastinal germ cell tumor too
    My boyfriend of 6 years was diagnosed with mediastinal germ cell tumor a month after his 30th birthday. He just finished his last round of chemo (4 cycles) of etopicide,ifex,and cisplatin. at first the chest tumor was the size of a football and it had spread to his liver as well. now its down to 3cm in his chest,and just alittle in his liver but his blood count says no more cancer.they are planing to do surgery on the chest and test it to see if and they will try to get it out with surgery. ive done alot of research but its still kinda hard for a non collage 23 year old girl to grasp all of it but this is what ive been doing for him. I feed him alot of alkaline foods which kinda helps the chemo work harder. (raw dark greens,parsley,basil,cilantro,cayenne,ginger,watermelon,avacado,cucumbers,young coconuts,wheatgrass,sprouts. I also heard about a PER machine... i dont have one but i read about a story where a guy used it to increase his energy and it did wonders for him but again i dont have one i just read about it. I wish i could tell you more but we are still kinda in limbo on this and I know that your hunny's is very serious since its spread to so many places. but do know your not alone and i hope he is doing better.
    Tink
  • eunibabe
    eunibabe Member Posts: 3
    #4
    Davepet said:

    Where are you located? Has
    Where are you located? Has he been seen by a center of excellence? Dr Einhorn is probably the top TC doc in the world & he'll answer your email personally. Afraid I don't have his address handy, but shouldn't be hard to find.
    Good Luck!

    Dave

    His oncologist did consult
    His oncologist did consult Dr. Einhorn, but Dr. Einhorn basically stated my boyfriend exhausted all convention treatments and only recommended oral chemo in hope of extend life... He passed away on October 13, 2011.
    Thanks anyway...

    Eunibabe
  • eunibabe
    eunibabe Member Posts: 3
    #5
    tink100 said:

    my boyfriend has mediastinal germ cell tumor too
    My boyfriend of 6 years was diagnosed with mediastinal germ cell tumor a month after his 30th birthday. He just finished his last round of chemo (4 cycles) of etopicide,ifex,and cisplatin. at first the chest tumor was the size of a football and it had spread to his liver as well. now its down to 3cm in his chest,and just alittle in his liver but his blood count says no more cancer.they are planing to do surgery on the chest and test it to see if and they will try to get it out with surgery. ive done alot of research but its still kinda hard for a non collage 23 year old girl to grasp all of it but this is what ive been doing for him. I feed him alot of alkaline foods which kinda helps the chemo work harder. (raw dark greens,parsley,basil,cilantro,cayenne,ginger,watermelon,avacado,cucumbers,young coconuts,wheatgrass,sprouts. I also heard about a PER machine... i dont have one but i read about a story where a guy used it to increase his energy and it did wonders for him but again i dont have one i just read about it. I wish i could tell you more but we are still kinda in limbo on this and I know that your hunny's is very serious since its spread to so many places. but do know your not alone and i hope he is doing better.
    Tink

    Good luck!
    Hi Tink,

    Thanks for your comment... we shared many similarity... my boyfriend and I had also been together for 6 years. I only fed him organic foods and dark greens, etc. and basically all I could do was to give him all my supports and encouragement... But his tumor was so stubborn...He eventually passed away on October 13, 2011... It had been very difficult. Only until recently that I finally accepted his passing.

    Anyway, I wish you and your boyfriend the best of luck! One must remains hopeful and have faith.

    Eunice

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