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Patients Cancer

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2

Carenity Member
Posted on

Hi folks,

I hope everyone is feeling well, or as well as expected. I have just had a bad two weeks. I was feeling sick, dizzy, tired, etc. A blood test showed that my calcium level was 2.9. I had to go to the hospital to have treatment via IV. I wasn't told what to expect and was sent home. In the early hours of the following day, I was being sick and running a temperature of 38.9. All this happened on a weekend, of course, I did not know who to call for help. I didn't fancy sitting in A & E for hours so I struggled. On Monday I called the oncologist nurse specialist, only to be told I was out in the community. I have heard nothing from my oncologist so I don't know if she even knows this has happened.

I am worried as hypercalcaemia appears to be bad. Could I be over acting to another twist on this journey called cancer? Has anyone esle had this?

God bless you all.

Shirley.

Beginning of the discussion - 10/1/18

High calcium in blood
1

Carenity Member • Community manager
Posted on

@Hidden username Thank you for sharing your story and I am sorry to hear that you are feeling so unwell.

Hopefully some other members will also have experienced this and be able to give you some words of support/advice.

High calcium in blood
1

Carenity Member
Posted on
Good advisor

Hi Shirley,

If you are receiving 'treatment in the community' then in theory your GP is first port of call. As with all forms of cancer treatment it affects your immune system so you are unable to fight simple bugs and infections. While in treatment I was always told high temperatures are a serious concern and you should seek help. While you may be 'out in the community' you must have been given a nurse that part of your medical team who you can take your concerns to besides your GP. If you have no one to answer your concerns then there is something not right about your medical team, I had a number I could phone 24 hours a day. I phoned them only once and like you got little help beyond monitor my temperature. Hypercalcaemia is quite normal with certain cancers and your medical team will be aware of your blood results and take the necessary action if needed.

Cancer is a lonely fight at times but your medical team should be to answer all your concerns. MacMillan operate centres in most hospitals and can help you contact the right person. Sometimes with busy medical staff forget they are dealing with human beings, so don't be put off asking questions. Being frightened by events is quite the norm this is one of the biggest challenges in our lives, you are not alone.

High calcium in blood
Carenity Member • Community manager
Posted on

@Hidden username Very well said and thank you for your kind words to @Hidden username‍. It can feel lonely but you certainly aren't alone.

High calcium in blood
2

Carenity Member
Posted on

@Hidden username Hi Rob, thank you for your kind words. I do not have a nurse or a number that I can call over 24 hours. I have even had to fight to get my last CT scan results. I did ask the oncologist about who could I call and she said her or the unit where I get treatment at, but they are not there 24 /7, I am on my own night time and weekends. The oncologist is not easy to get hold of due to her days off and her secretary, and the nurses at the unit are too busy and would only say they would talk to the oncologist if she is in. I was not having regular blood tests before this calcium thing happened, so no one is keeping an eye on anything. What's more is that the oncologist has put me on Letrazol, which was stopped in 2013 because the cancer was growing. It was only in my bones at that time now it is in my lungs and liver as well.

I think what doesn't help is I nolonger trust my oncologist.

God bless you and keep as well as you possibly can.

Kindest regards,

Shirley.

High calcium in blood
1

Carenity Member
Posted on
Good advisor

@Hidden username I hear that the NHS was using out reach units, Addenbrookes in Cambridge have one in Ely. But I can't believe there is so little support. I must admit our support outside hours felt a little shoddy the one time I used it. But that seems to be the norm for the NHS these days. I fought 'tooth and nail' to get my Dad operated on to remove his colon cancer which allowed him another two years of life. He died early this year another tumour close to his liver and they again refused operate this time. My brother had a treatable cancer that many live with and have a reasonable life. His GP threw painkillers at him for two years before it realising it was cancer and to late for a successful treatment. For me I had  throat cancer but caught it early myself, got the right tests and treatment. 

But for you the GP seems the only port of call out of hours or A&E if you feel you can't control your temperature. NHS 111 is a total joke, if it does not follow their simple computer program, it don't compute and they are lost. My wife suffers from serious auto-immune diseases, heart failure, COPD etc. the list seems endless. We have been told not to bother with NHS 111 just call an ambulance and get her to A&E fast. Although I am not a fan MacMillan but their leaflets have improved. I did see them over concerns over problems of lack help for my Dad and they got touch with the right people  moving things on well. His medical team nurse was very attentive and informative after that so do try. They should be able to put you in touch other local patients that you can share your common experience. I got on well with a young American airman going through the exact same cancer, we were on email contact regularly. So good to talk, there are quite lively discussions on here on breast cancer so do join in and tell your story and experiences. 

Letrazol can cause bone thinning which maybe why they put you back on it to reduce the calcium issue. They should inform you the why and wherefore the drugs they give you, if not ask.

Good luck, the battle is hard and we are always here for a chat, there is no reason to be alone.

High calcium in blood
2

Carenity Member
Posted on

@Hidden username  Rob, thank you so much. It has been nine years since my very first diagnosis, and nearly five years since it came back. I have seen the care go down hill especially in the last two to three years. I have seen really good caring nurses leave because of the way things are going, unfortunately that leaves the not so good nurses who don't really care. Hearing your stories helped me so much because I am not alone. That doesn't make it right but at least I know others have felt like me.

Thank you so much.

Kindest regards,

Shirley.

High calcium in blood
1

Carenity Member • Community manager
Posted on

@Hidden username don't ever feel alone Shirley, Carenity is always here.

High calcium in blood
1

Carenity Member
Posted on

Hi shirley I had breast cancer in 2010 lumpectomy and full node clearance been on tablets since the last one letrozole which I have been on for 6 years and another year to go I have now been told I have primary hyperthyroidism and will need surgery for possible parathyroid tumor I have felt really poorly the last 14 months dizzy tired can' t sleep at night joint bones and music pain. Went to endocrinologist December 5th sent for a blood test which was not brilliant and told my gp to keep a close eye on it. I had another blood test 10 days ago got the result last Wednesday abnormal got to see my gp this wed at 2.30 so worried at the momental I have piled weight on round much stomach. I can't hold vitamin d and calcium is in my blood. 

High calcium in blood
1

Carenity Member
Posted on

Hi shirley I had breast cancer in 2010 lumpectomy and full node clearance been on tablets since the last one letrozole which I have been on for 6 years and another year to go I have now been told I have primary hyperthyroidism and will need surgery for possible parathyroid tumor I have felt really poorly the last 14 months dizzy tired can' t sleep at night joint bones and music pain. Went to endocrinologist December 5th sent for a blood test which was not brilliant and told my gp to keep a close eye on it. I had another blood test 10 days ago got the result last Wednesday abnormal got to see my gp this wed at 2.30 so worried at the momental I have piled weight on round much stomach. I can't hold vitamin d and calcium is in my blood.