Reaction to Denisumab?

[MarsiJay]

I take Letrozole each day and have monthly injections of Denisumab. I had the last injection on Thursday of last week after five weeks instead of four because I had not been called for a monitoring blood test. I found that after I had the injection, my joint pains and stiffness were relieved. However, this is the second time I have felt unwell for some days after - night sweats and deep chills. Though I always remain active, I have had to take to my bed for the last couple of days. Is this a coincidence or does anyone else recognise this. I have metastases to my skull and both lungs.

[Hazelgreen]

Hello MarsiJay;

Given that you are 85, and, presumably, did without Denisumab for at least 84 years, I'm wondering why you are taking these injections now??

In my case, letrozole does lead to more joint pain than I had previously to taking it, but it serves by controlling my tumours. The many tumours in my skeleton are primarily described as sclerotic which means overgrowth (not holes) so I am not worried about their likelihood of breaking. Also, I had a bone density test which indicated that my bones are much more dense than average for my age (77 years).

I simply cannot see a reason for me to worry about osteoporosis, and I disliked the possible side effects of treatment for it, so I have declined it every time my oncologist has suggested it. I think many oncologists simply react by rote with patients, rather than thinking about individual case details.

Best of wishes,

Cindy

[MarsiJay in reply to Hazelgreen]

Thank you, Cindy. I am seeing my oncologist at the end of November and I shall put this to her. Initially she said that I have holes in my skull which need to be stopped. I am having another scan early next month and hope to have a much clearer picture then. I am accustomed to muscle and joint pain - I was diagnosed with PMR a few years ago. It is these consistent attacks each month following the injection that concern me. Thanks again for your comments

[Hazelgreen in reply to MarsiJay]

I too have skull lesions. I assume that they are sclerotic but, in any case, my oncologist never mentions them. Although he has mentioned my taking Zometa to prevent osteoporosis several times, he is not insistent on it. I have told him at least twice that I grew up poor, and can't afford to lose any more teeth (a side effect is necrosis of the jaw). In any case, at my age, I do not believe in putting up with injection pains to add to the pains I already have.

It seems you may have another injection scheduled before you see her. I would find a reason to cancel that injection. Keep in mind that it is your body, and you are fully entitled to make all decisions concerning it.

If your oncologist wants to dictate to you, simply ask for another opinion. I did that early on. Although this surprised the nurses at our local cancer center (I live in Canada), I was given a second oncologist within the month.

It seems to me, at our ages, osteoporosis is very unlikely to make a difference in our lives.

Hugs,

Cindy

[MarsiJay in reply to Hazelgreen]

I am still feeling under the weather after a week so thanks you for the advice. At my age I want to retain as much wellbeing as I can. There is nothing worse than being fit for nothing if the cause is unnecessary. Many thanks

[Hazelgreen in reply to MarsiJay]

Hello again,

My husband and I loved your expression, "There is nothing worse than being fit for nothing". I think we'll be using it. I much appreciate the "down-to-earth" approach. I checked on your profile, and wasn't surprised that you are in Wales. Canadians often attribute their forbearance to their long-ago British roots...

[MarsiJay in reply to Hazelgreen]

What a lovely message - thank you so much. By the way, I love Canada. My husband was an academic and we lived for a period in Saskatoon when he was a visiting professor at the University of Saskatchewan. We also spent time in Toronto. Happy days.

[Hazelgreen in reply to MarsiJay]

Quite a coincidence! I live in Saskatoon, and am a retired forensic psychologist who was cross-appointed to the U of S for 18 years or so. I spent the first half of my life in Ontario so Toronto is very familiar.

My maternal grandfather emigrated from Northern Ireland in 1871. Ancesters of my maternal grandmother came from England to the USA in the 1600's, ultimately making their way north to the Ottawa valley. Mum always described them as "old British stock". My paternal relatives are all Quebecois French who also trace their roots back to the 1600's. If I could only claim a First Nations ancestor, I would consider myself "old Canadian stock" 😜...

[MarsiJay]

What a great coincidence. We rented a house in University Park and enjoyed being with a wonderful community. We were there in the early nineties when a historical site - I think it was called Waunaskewen was due to be opened by the Queen. A group from the university in which we were included were given a preview trek. It was incredibly interesting, and the guide was a First Nation exceptionally beautiful young lady. The only bugbear was that the mosquitoes were also in attendance en masse as spraying had been stopped during that period.

You have an incredibly diverse lineage. Mine is rather boring. For my birthday, my son gave me a gift that traced my ancestry. I am predominantly Welsh with traces of Irish, Scots and a touch of German, it figures.