Bone, secondary cancer

Secondary bone cancer is cancer that has spread to the bones from a primary cancer somewhere else in the body. This group is for people affected by secondary bone cancer to share experiences and get support.

Anxious

Ellieellie
Posted by

Hello

Had my 3 monthly scan on Thursday and now anxiously waiting on the results to see if any spread.  I had to come off Palbociclib as my insurance company would no longer pay for it and the NHS turned down a funding request. So this is my first scan since stopping it. I am currently taking Exemestane with a Denosumab injection now scheduled for every 3 months. I also take a calcium tablet every day.  I haven't been able to eat or sleep and feel exhausted. The Consultant will ring me probably tomorrow.  Another night of sleeplessness. I haven't had any spread up to now but I know it cant last.  My cancer is in my bones in my back.  I have noticed more of an ache this past couple of weeks, not pain though and it seems to move around.  I turned 60 on the 20th August. This is not how I saw myself at this age but there again does anyone.  I had to attend a funeral on Saturday of a friends husband who died of cancer. I found it very hard to be there and kept thinking me next.  I decided today to start clearing out my wardrobe and got rid of three large black sacks of clothes.  My husband thinks I am being good but I am doing it while I can so he doesn't have as much stuff to go through when the inevitable happens. Guess I am feeling very morbid tonight. 

DiAne550
Posted by

Hello Ellieellie,

I can completely empathise.  I cleared out my wardrobe the first week I was diagnosed, closed down or transferred my bank accounts, added husband to my pension as a beneficiary, got a will, arranged a trust fund for my daughter and then some.

 It took something to go to a funeral.  Something I don’t think I have.  

I haven’t heard of Palbociclib and I hate and despair when They put money first.  I could go on but it isn’t the place.

I have just had my first Denosumab this pm.  Due to start Faslodex and Abemaciclib on Thursday.  

Today, I met with one of the oncologists.  I asked for a PET scan which was refused.  I asked for a repeated CT scan.  Which she agreed to because I now have swollen lymph nodes.  I am looking for a second opinion on my diagnosis.

I try to keep positive.  Mind over matter type of thing.  I started to do meditation some guided (from an app) some just me doing it.  I have been visualising travelling around my body (like in the movie Fantastic Voyage,I think it was, had Raquel Welsh in it) except I don’t use a ship.  I see the cancer and zap it or if I see it as a colour I change it to what I feel is a healthy colour or anything that feels right.  Maybe sounds whacky but it helps.

The Badger ointment that a member uses arrived so I will try it tonight and let you know.  I am also using CBD oil at 5% which has help with the bone pain so I have not needed to use anything other than paracetamol recently.  

I will be here for a while longer if you need to off load.

DiAne x

razzy
Posted by

Hi Ellieellie

I started on palbociclib and Denosumab yesturday. I did not realise that funding for the drugs can be withdrawn. Only thought they took us off the drugs if they were not working. I have heard that treatment depends on your postcode, which is diabolical. 

I have started listening to guided meditation apps to help me sleep which seems to be working a little. My cancer is breast with wide spread in the bones, back, sternum, clavicle and ribs. Expect from ribs which has pathological fractures the pain in back which has been there for nearly 12 months has stopped. I have been miss diagnosed for 3 years and have only known my diagnosis for 4 weeks in bones and 2 weeks in breast.  3 mamagrams normal, no lumps etc. only found behind nipple after biopsy.

I have been told I'm not going anywhere soon by oncologist so I'm holding him to that. I'm 54 and never saw my life like this also. It sucks.

Have a cry it does wonders for you, hit something feels even better.  I lost both my husband and father to cancer but have not been to a funeral since diagnosis so can only imagine the thoughts going through your mind. 

We can be strong for each other on this site when one of us has a bad day. 

Thinking of you

xxx

Joanne