Double Whammy

Discussion Board Forums Introductions! Double Whammy

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  • #98718
    Findacure
    Participant

    Hi Hannah,

    Thank you for your kind words and positive vibes!

    Yes, they are hoping they have “zapped” his liver tumor.  6 months out from the SBRT, they said things can still be settling down from the radiation, I think we’ll get an even better determination on how the treatment worked at the next imaging in August.

    I hope your mother is recovering well from her major surgery.  Sending healing thoughts and prayers.

    Christine

     

    #98712
    Hannaha
    Participant

    Hello Findacure (I love your moniker)- Thank you for sharing you and your husband’s story. And what a story it is! I am impressed both by the skill of your husband’s medical team (and their willingness to think outside the box for an unusual case), and by you and your husband’s resilience. I’m so glad to hear that the post-surgical follow-up held good news, and I hope that you will both continue to get good news in the months and years to come.

    It sounds like the docs are hoping that the SBRT ‘zapped’ the liver tumor?

    I have found a lot of help in these message boards since my mom received an ICC diagnosis 10 months ago. I lurked for a long time and finally shared my family’s story after her major surgery in February. I hope you find it similarly helpful.

    -Hannah

    #98705
    Findacure
    Participant

    Hello,

    This is my first post, I just joined the discussion board.  I’ll try to make this as short as I can, but it’s been a long year and a half!  I need to go way back, to 1990/91.  My husband was 26 yrs old at the time, he had a 10cm adrenal gland tumor removed on his right side, metastatic, given chemo and very high doses of radiation.  The doctors didn’t think he’d survive the cancer, so rare and deadly, but he did.  Now we forward 27 years later, Michael is 54 years old…

    He went to his PCP’s for an annual physical, he had had a slight cough in December 17′, now it’s January 18′.  X-ray showed a shadow in the base of his right lung and his liver enzymes were very high (they thought he had fatty liver disease at first).  More images, blood work, aspirations, biopsies…  Eventually he had a thoracoscopy and took biopsies and it turns out he has Metastatic Pleural Mesothelioma.  He has never been  exposed to asbestos, but high dose radiation therapy is another risk factor.

    All while working towards his Meso diagnosis, we were still investigating the liver.  His Alk Phos was in the 300’s.  Ultrasounds, ERCP, MRI, they could not figure things out.  His ducts were thickened, “but no cancer anywhere”, his ERCP doc tells us….  So we continued to try to figure that out at the time.

    At the end of the summer, Michael was just about to begin a clinical trial for the Meso when they wanted to do one more PET scan to make sure no other cancers were present, that would rule him out of the clinical trial.  His liver lit up and there was concern.  He had a new tumor pop up since his last imaging earlier that summer, 2x3x1cm, Intrahepatic cholangiocarcinoma.  So, that stopped everything for the Meso mighty quick.  The tumor was in his 5th liver segment, where the ducts and portal vein is, in-operable. Again, this coming from the radiation treatment years ago.  So he completed 5 treatments of Stereotactic Body Radiation Therapy (SBRT).  He did very well thru the radiation therapy.  Once recovered, he went into surgery to remove the mesothelioma tumors, remaining pleura (lining of the lung), portion of his diaphram, and they performed a hot chemo bath in his chest cavity.  The surgery took 10 hours, he had 4 chest tubes & intubated (breathing tube) overnight in ICU.

    He was discharged after 2 weeks in the hospital, Brigham and Women’s; International Mesothelioma Clinic in Boston.  I happen to be a nurse and have worked in the operating room for 30 years, I was able to take time off to take care of him and help him to recover.  Once recovered enough, he had 4 rounds of chemo, Cisplatin and Pemetrexed.  He’s now a month out from his last chemo treatment.

    His follow up with the docs down in Boston went well.  No new tumor growth in his chest, only surgical changes.  Radiation changes in his liver, no new tumor growth there as well.  Yay!  So, now he goes for a PET scan in 3 months.

    It took a bit for my head to transition into “regular life” after the 1 1/2 years of chasing these deadly cancers.  We are in good spirits as far as the latest news, Michael continues to gain his strength back from the chemo but is doing well.  He’s back to work part-time.  We are looking forward to a nice summer here in New Hampshire spent with family and friends.  I look forward to reading posts and keeping myself informed on CC.

    • This topic was modified 1 week, 3 days ago by  Findacure.
    • This topic was modified 1 week, 3 days ago by  Findacure.
    • This topic was modified 1 week, 3 days ago by  Findacure.
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