Zometa & calcium

Hi Tillyboo have you managed to speak to a doctor yet ?

Nope. I'm ringing tomoz. If I dont get anywhere by lunchtime, I'll get a taxi to the Marsden & go the wing of the hospital where the STRIKE trials being held.

We simply want to know why calciums dropping & what alternative treatments. 

I rung Macmillan today & spoke to a nurse & she couldnt even answer, why taking supplements & eating so much calcium enriched food, it shud be normal. She advised to ring & ask for the doctor & pharmacist discuss the possibility of his other meds causing this, but I couldnt through to anyone && I didnt want to ring the emergency number.

So even if his dental check up had been ok, he still couldnt have started Zometa. We werent aware of the calcium issue. Doesnt make sense why something so urgently needed isnt being chased up. I was under the impression the lung nurse specialists were our helpline advice etc but she didnt have any answers apart from emailing doctor.

Remember to tell them that he had taken the   loop diurectics and ask if they think it is advisable to re check the blood count. Good luck. 

I did all that on Monday & specialist nurse was putting that in email to nurse.

Will update later if I get any further info

I have a telephone call in morn with oncologist.

But I think I've found out whats caused the calcium problem. My husband is under an Edocrinologist ( nothing to do with cancer) yesterday I left a message for him, just to check if any meds are the cause of the calcium drop. He rung today, my husband is Vit D deficiant, which causes calcium to drop. It appears the Marsden have never checked his Vit D level.

He was on a Vit D supplement & when the Marsden gave him ADCAL D3, I presumed it was to replace the Vit D supplement, so I binned them.

This as been a total breakdown in communucations on account we didnt know about the low calcium & Vit D was never mentioned.

Hopefully this will rectify the problem. My husbands Endocrinoligist as offered to help with raising levels fast & liaise with the Marsden & will do anything to help.

Fingers crossed this sorts the problem & will update after speaking to my husbands oncologist tomoz x

That is great news!! You now have someone on your side at last! It must a feel like a relief to have someone helping you to get this sorted quickly. Good luck with the oncology tomorrow x 

Thank you x

Just to update. Spoke to oncologist. Shes requesting full set of bloods to check eveeything again inc vit D, on Tuesday. And will call next Thursday to discuss results & possible radiotherapy if calcium still low. Shes precribing folic acid now & B12 injection.

Whats shook me a bit is, I asked if it would be cyberknife radiotherapy, as they used that on the brain, but she said no palliative radiotherapy, a low dose until Zometa starts.

The word palliative as always meant end of life to me & upset me a bit, but I couldnt say much as my husband was sat next to me x

At last things are happening! I will keep my fingers crossed that the calcium levels are improved next week. Please do not worry about the word palliative, it just means that the radiotherapy will be used as a pain relief rather than trying to cure the cancer. The immunotherapy is the main treatment, the radiotherapy will be instead of the Zometa so just Palliative, pain relief. Does that make sense? X 

Yes. Thank you, just my anxiety & panic levels are in overdrive & its so hard putting on a front in front of my husband, I'm so tired now. I try to keep him calm & positive when all I do is curl up & cry when he doesnt see. Hopefully all will get sorted next week after bloods done. Thanks for reply x