Parathyroid Carcinoma

wifflefrog
wifflefrog Member Posts: 31
edited March 2014 in Rare and Other Cancers #1
Hi,

My husband was diagnosed with parathyroid cancer in 2008. We were glad that finally we had answers as to some of his health concerns and the doctors responded so quickly. Its extremely rare and the doctor in 40 years had only seen it twice before.
We had the bad parathyroid removed and monitored it religionouly for 2 years. Well in 2010 he went to have blood work and sadly his calicum was back up to 15 and hormones was very high. We went to the hospital and got him flushed out to remove the calicum. Yet we learned there was a new tumor. The local surgeon declined to perform the removal and we were referred to Moffitt Cancer.
We again had an excellent Head and Neck surgeon who went in removed the tumor. So hopeful that was it and potentially even get some follow up to not have this occur again. Yet upon further review his numbers were really high and they noticed a spot on the liver.
Well after complications from the surgerey and lots of fumbling around, we tried one round of oral chemotherapy - Temodar (not covered by insurance) and a move to Mayo Clinic we are still waiting for answers.
This cancer is extremely rare, like .05 % of the population. Its been very difficult to manage everything. My husband is no longer working and got disability on the first try. As well my son was born 12/30/09. Right now I just want to know if anyone is dealing with this or even knows of anyone else with this diagnosis.
Mayo seems to be stepping up a bit and looking for clinical trials, but meanwhile my husband is in a lot of pain, vomits almost daily, blood sugars are out of whack, he takes Sensipar causing that discomfort 90 mg 3x a day and every 30 days he goes in to the hospital. Its mainly the high calicum, but we can't stop that until we stop the tumors.
Thanks...

Comments

  • 3Mana
    3Mana Member Posts: 811
    #2
    A better Hospital
    Hi,
    Just want to let you know that alot of people who go to Mayo Clinic have been sent to Froedert Hospital in Wauwatosa, Wi. They have a brand new Cancer center that is wonderful. I know you probably don't want to change again, but check it out. They have teams of doctors who consult & decide what's the best treatment for the patient. Good Luck!
  • wifflefrog
    wifflefrog Member Posts: 31
    #3
    3Mana said:

    A better Hospital
    Hi,
    Just want to let you know that alot of people who go to Mayo Clinic have been sent to Froedert Hospital in Wauwatosa, Wi. They have a brand new Cancer center that is wonderful. I know you probably don't want to change again, but check it out. They have teams of doctors who consult & decide what's the best treatment for the patient. Good Luck!

    New Hospital
    I will check it out. Mayo has at least provided a treatment option which we will begin next week. Honestly the doctors are doing the best they can. There is very little research done on this cancer since its so rare. I am sure if they don't know it will just be trial and error. If anything maybe we will help the next person.

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