Adrenal gland cancer

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  • Chris_Br
    Chris_Br Member Posts: 2
    #42
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    Adrenocortical carcinoma

    Our 21 month old son was diagnosed with Adrenocortical carcinoma (acc) January 4th this year. Well at first we were told it was Nueroblastoma, then after the first bit of biopsy test results were in we were told it was ACC. Talk about a roller coaster of emotions, especially as we expected our sons abdomen being distended was due to his spleen per his primary care physician. My son's tumor was not encapsulated. We've been diagnosed at stage 4. When docs went in to remove the tumor it had split open and was bleeding, a good portion of it was dead (apparently it had grown fast enough the blood supply could not sustain itself) we had 2 blood transfusions the week prior to surgery and lost a whole lot of blood during the operation to resect it to the point they had to stop surgery, vacuum bandage the abdomen closed and return the following day. There are some spots present on. CT scan showing it has spread to the lungs. My hope is that Cbd / Thc oil regimen will have some great results in Apotosis and alleviating potential side effects from other things. I'd recommend looking into the cbd oil and visiting cannakids.org ( not just for kids fyi ) or contacting them as I have. 

  • jjaj133
    jjaj133 Member Posts: 867 Member
    #43
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    mets to adrenal gland

    Hello, I am usually on the colorectal discusion board. But thought i would check in here for some information. In Sept. of 2017 i had surgery to remove a growth on the left adrenal gland. Evidently the surgeon couldnt get it all. Its back 5 monther later.  I've had surgery in Aug. of 2016 to remove a growth from the diaphram. prior to that it was colon resection & two liver surgeries This has been over a 12 year period, but lately its coming back faster and faster.  They cannot open me up again, so this time I'm going to have radiation. The one thing Ive managed to avoid so far.  Has anyone had radiation to the adrenal gland.? I would like to have some idea what to expect. Thanks for any information you can give me. 

  • TomMoore
    TomMoore Member Posts: 3
    #44
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    Adrenocortical carcinoma

    saw your post from Jan 18th 2018. How is your son ?

  • TomMoore
    TomMoore Member Posts: 3
    edited April 2019 #45
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    jjaj133 said:

    mets to adrenal gland

    Hello, I am usually on the colorectal discusion board. But thought i would check in here for some information. In Sept. of 2017 i had surgery to remove a growth on the left adrenal gland. Evidently the surgeon couldnt get it all. Its back 5 monther later.  I've had surgery in Aug. of 2016 to remove a growth from the diaphram. prior to that it was colon resection & two liver surgeries This has been over a 12 year period, but lately its coming back faster and faster.  They cannot open me up again, so this time I'm going to have radiation. The one thing Ive managed to avoid so far.  Has anyone had radiation to the adrenal gland.? I would like to have some idea what to expect. Thanks for any information you can give me. 

    Have you had genetic testing

    Have you had genetic testing done?

     

  • TomMoore
    TomMoore Member Posts: 3
    edited May 2019 #46
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    Is anyone still logging on to this site?

    Unfurnutaley many who have logged onto this site may not be with us today. My son passed away on April 23rd 2019 after battling his cancer for 18 months. He was just letting the current drugs get out of his system before starting a new drug VITRAKVI wheb=n he passed. When he finally had genetic testing done he was found to have a mutated gene NTRK. The VITRAKVI was found in trials to reduce or stop the growth of tumors with this gene mutation. He should have been strong enough to have lasted longer but the high levels that the tumors produce of cortizol; took there toll on his body. Shortages of the 4 drugs that lower cortizol was the reason and particularly metopirone which he was without for over 4 months at teh end. Gentic testing is very important to have done early in the treatment. We need to cry out to whomever will listen to correct the shortages in not just these drugs but so many others that are in shortages.

  • dmahoney
    dmahoney Member Posts: 1
    #47
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    adrenal cancer

    My daughter was diagnosed in December 2016 and died of adrenal cancer in October, 2017. There are limited treatment options for this rare cancer, which have limited efficacy. My son and daughter in law started a web site in honour of his sister. We are trying to raise awareness of adrenal cancer (ACC), assist families with ACC, and raise monies for research. You can visit the site at wwwaccwarriors.org. Prayers and blessings for anyone afflicted with this cancer.  another good site is adrenal cancer warriors..stronger together, where people with ACC can talk with other ACC warriors. Hope this is helpful information.

     

     

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