Hypercalcemia of Malignancy

FormerMember
FormerMember
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Hey guys, have any of you got experiences with hypercalcemia please? My dad is really struggling with this and if we cant get it under control soon they will be removing his cancer treatments. I will list below what has been going on.

Hypercalcemia 3.37 - 27/03/2019 (Treated with Zolendronic Acid)

Hypercalcemia 3.27 - 01/05/2019 (Treated with Denosumab)

Hypocalcemia 2.16 - 15/05/2019 (caused by denosumab, started on adcal to bring back up)

Hypercalcemia 2.95 - 29/05/2019 (/treated with Denosumab) ///GP starts vitD treatments 40,000 units colecalciferol a week 03/06 ///Break from TKI starts 06/06 ///From this point vomiting out of control not keeping fluids down

Hypercalcemia 3.28 - 11/06/2019 (Treated with Zolendronic Acid)

Hypercalcemia 2.98 - 19/06/2019 (Treated with Denosumab)

Hypercalcemia 3.18 - 27/06/2019 (Currently still untreated)

Dad was doing okay on the treatments until the GP in his wisdom decided to put dad on a huge dose of vitamin D because dads level was 26 and should have been 50. The thing is though vit D makes the body absorb calcium and his illness has gone completely out of control since. Hes been struggling to keep anything down for about 4 weeks now with it only being under control the last two days and dehydration raises calcium levels. At the same time things went out of control he was also on a week break from his TKI and there could also be disease progression too, so all three things together. The main consultant isn't 100% convinced it's disease progression yet and is due to see him in a few days but the hospice my dad is currently in is refusing to give fluids to hydrate him properly and give him the chance to settle things. Consultant is saying the zolendronic acid could be given again too but they wont do that here either, he said he doesn't think it's the main solution but it will work until we can get dad in clinic to see the main oncologist. They have decided until he is reviewed by them in clinic they will keep him on the TKI without a break to stop that possibly being a problem. Feeling pretty lost and hopeless right now, hes not had the chance for his body to filter the calcium because the sickness has been so bad, hes finally on a decent dose of Levomapromazine through the syringe driver and that should settle things now but there isn't a clear picture now of how things will go x Any suggestions or help would be appreciated x

  • Hi  ,  I’m sorry to hear that your Dad is in a hospice and is having issues with his calcium levels, it seems that there’s a lot of uncertainty and stress that your having to cope with. I’m sorry no one has been able to chip in with any relevant personal experience that might help you, and I’m the same really. 

    I just wanted to say I’m sorry you’re feeling pretty lost and hopeless right now, I have no answers for you but thought you sounded like you needed some moral support to keep carrying on. 

    Best wishes and a virtual (((hug)))

    Take care KT

  • FormerMember
    FormerMember in reply to KTatHome

    Hi  thank you for taking the time to reply to my post. Sorry it's taken me so long to update but as you can imagine things have been crazy. I had a realisation the night before my dads appointment with his main oncologist and in all honesty, without that realisation I dread to think where we would be upto Disappointed

    The hospice wanted to withdraw dads medication, they felt he was near to the end (so much so they took me into a family room and told me to prepare myself as dad only had days, weeks at most left) . Dad still wanted to fight so I asked that we may be allowed to meet with the main oncologist first as I felt he needed to hear from his main doctor that treatment was stopping. Dad had gone weeks with problems caused by the antisickness meds not working and things werent looking great. The night before the appointment I realised dads calcium had raised from 2.98 to 3.18 (a raise of 0.20) in a week when he was constantly vomiting as his antisickness wasnt sorted... and had only rose from 3.18 to 3.23 (a raise of only 0.05) in 5 days when his antisickness had been working for only two days. So whereas the hospice were sure it was disease progression, dad had gone nearly 4 weeks without eating and drinking properly and all the reading I have done on hypercalemia states hydration is key to treatent. When we got to see the main oncologist two days after, his level had lowered a little (to 3.20) because he had then been eating and drinking for 4 days, which again added to the theory that the calcium was so high because of inadequate hydration (due to inadequate antiemetics). Based on that, the consultant agreed he hadn't had a fair chance to fight the hypercalcemia and to see how the next two weeks goes, he's due back there wednesday and although they know his calcium will be high, as long as he is maintaining a quality of life and not vomiting constantly they will continue treatment. 

    Roll on nearly two weeks later and we are in a much different position. He now has only vomited twice in 17 days (Both due to the syring driver bumping up and not delivering the drug as it was supposed to) he is eating roast dinners and drinking lots of fluids and had managed 5 trips out of the house in the last week, including to a carvery for a family meal and to my childrens award ceremony at school. What a difference! I believe due to the change the oncologist will more than likely continue treatment on wednesday hopefully, he's having a much better quality now the meds are sorted x It just scares me how close they came to letting him go because they hadn't realised what was going on with the sickness meds. We know the disease is progressing and hypercalcemia isnt associated with positive outcomes and we know that day will come one day sooner rather than later, but it should be because of the natural order of things and not because of error :( x I've updated this post in case in the future, someday, another family is in the same position and searching these forums for help and can see dads journey. They said even if dads calcium is silly high they will treat again with denosumab so fingers crossed for Wednesday x

  • FormerMember
    FormerMember in reply to FormerMember

    Replying again with today's update, dad's calcium level was only 2.99!! Absolutely amazing considdering. Denosumab has been given again today and he doesnt need to be seen in clinic again for four weeks now. Still on his TKI and still fighting x

    If any of you are facing hypercalcemia, drink and eat as much as possible and ask them to check your sickness is under control x