Treatment today

Hi lovely ladies. Went for my Denosumab jab and to pick up my Ibrance today. To my surprise my Denosumab wasn’t on my meds list, not to worry I thought. Then I was told I could have 3 months supply of Ibrance and not to worry about blood tests as my blood has been good. I was also told I could miss my Denosumab jabs for three months. I am so relieved I haven’t got to go to the hospital but know I will miss my jabs as they help ease my pain. My Cancer Nurse did consult with my Oncologist while I was there so I feel quite reassured about it. I am a month overdue on a CT scan now. By the time I speak to my Consultant it will be 5 months since my last one and I will probably have to wait 3 weeks after I have spoken to him. That concerns me. Hope you are all keeping safe ladies/gents and your treatment is on schedule.

[Hidden]

Hi,

It's good news that you have a 3-month supply of ibrance to keep you going. But I would also be concerned about missing the denosumab jab. Is that something you could possibly do yourself at home? I would enquire about that and see what your oncologist says.

Hopefully delaying your blood test and CT scan won't make much difference, as you mentioned that you are doing well. Let's just hope we can soon get back to some kind of normality. It's amazing how many aspects of our lives have been impacted by this coronavirus pandemic. It isn't just health matters, but many other things too that we take for granted like shopping, socialising and so much more!

Sophie

[Hidden in reply to Hidden]

I did ask about a District Nurse coming to do my jab but it’s a no go. As the Oncologist said it will be ok I will have to go with his advice. That’s life 🤷‍♀️

[Hidden in reply to Hidden]

I'm sorry to hear that. I hope you are well.

Sophie

[Kiera49]

Hi I am having denusumab and zoledex every 3 months too and have got 3 months supply of ibrance ct scan is due in June, but know if I'm feeling well maybe postponed. Like you say will be nice having 3 months off hospital. All the best

[Hidden in reply to Kiera49]

I feel happier not going.🧚🏼‍♂️

[illini9]

It's nice to get that three month supply. Before all this began I spoke to my oncologist about moving denosumab to every three months. There have been some studies know on efficacy as compared to monthly. She didn't want to do that with me but did note that the studies were there. Perhaps that helps a little with idea of missing a dose.

I went to the oncologists office last Friday for the first time since all this started and it was startling to see it so formal and secure - lots of screening, little interaction except with the nurses who had to touch me, no visitors. I felt very safe.

[Hidden]

I was off Denosumab for 7 months after having a problem after a tooth extraction. I had a minor op to remove 5 small pieces of bone from my jaw. The Denosumab stays in the system for many months so my Oncologist wasn’t to bothered about me missing jabs at that time. I have been back on it for two months and now this. I would rather be safe and not visit the hospital right now. They all act differently but for the best. Best wishes

[Hidden]

Hi Flowerfairies2,

For what it's worth, I completely agree with the others re: the demosumab (aka Xgeva, right?). I know that postponing scans can be stressful, but I sort of feel like it's a good thing, i.e. if you find you need to change treatment, the delay pushes this back for a month or two...Obviously if you have a fast growing cancer it's a bad idea, but it seems like your docs think that's not an issue. I've gone just over 5 months between scans when things were very stable and it was a nice break...

Take care,

Lynn

[Hidden in reply to Hidden]

Thank you for letting me know about the scan. My Oncologist was leaving it to me to decide whether I wanted a bone scan or CT scan hence the delay. As my bloods have been good for the last year I think he is happy to let me decide when I speak to him in May. We shall see.

[MyMiracle13]

I think that’s just the way it is for most hospitals/countries now. I was also given 3 months supply of Ibrance, Faslodex changed to Letrozole tablets so that I don’t have to have the shots and no Xgeva also since March.

[8576 in reply to MyMiracle13]

Found it interesting that you were able to switch from Faslodex to Letrozole. I am hoping I can do that also. That combination is covered in Ontario, where I live, and Faslodex isn't. Had you taken Letrozole by it's self? I have a scans and appts. first week of May. Hoping for good results.

Cheers, June S.

[MyMiracle13 in reply to 8576]

Hi June. I was changed to Letrozole because I wanted to take a tablet alternative to Faslodex since I couldn’t go to hospital for my shots. But I was surprised that I was changed to Letrozole because my oncologist knew that I had been on Letrozole for 5 years prior to my MBC diagnosis.

[8576 in reply to MyMiracle13]

Thanks for your reply. I was on Letrozole also for, I think, 3 yrs. earlier in my treatment. It must be the combination with Ibrance that might work for some of us. I am not a fan of Ibrance however, combined with Letrozole it is covered by the government only under certain conditions. I hope that with the virus situation they will make exceptions. I can't afford the Ibrance/Faslodex combination. So they have me on Tamoxifen for now.

Cheers, June S.

[Hidden]

I agree. They are caring about us all. It’s a major hospital I have to go to so I was more than happy for their thoughtfulness.

[GollyG]

Hi, I've been taken off my 3-monthly zometa and am expecting a delivery of denosumab for me to self-inject. It seems like different hospitals have different approaches to managing us in this crisis - I'm still on Palbo though Monday's bloods had me 0.9 neutrophils. I asked if that made me really vulnerable to Covid and the onc on the phone said 'not really, not like chemo'. And there was I thing they classed Palbo as chemo...

[Hidden in reply to GollyG]

I thought they classed Pablociclib as Chemo. Well that’s what the hospital have led me to believe. Don’t think they will let me self inject but I will ask. Not sure how I would do it as it’s normallly given in my arm. I will let you know. Have a good weekend. Cheryl

[GollyG]

*thinking!

[Hidden]

Although my wife has only been given one month's supply of Ibrance, she was prescribed three months' worth of Denosumab injections. We keep them in the fridge and get a district nurse to administer them.

[Hidden]

I did ask about a District Nurse but my Oncologist said it will be ok not to have them. As you know they basically help prevent Osteoporosis. Such confusing times. When my Oncologist calls in May I will ask again about a District Nurse. Think it may be the lack of staff right now. Thanks for replying.

[Hidden]

Hi there

Sounds like you are doing well over in Liverpool.

My Nurse said that Denosumab can be stopped once it has done its job.

She also said I would probably go to 6 monthly scans from now on. Sounds fine to me. So don’t you worry. Just keep safe. Covid is just hitting here in North Wales now.

Clare x

[Hidden in reply to Hidden]

Thanks Clare. Something positive. Denosumab is a bone strengthening drug so I will just take a bit more care.We are close aren’t we? We see the Welsh Mountains from our allotment. Best wishes. Keep in touch. Cheryl

[Hidden in reply to Hidden]

How are the mountains looking? I’ve not seen them for a while!!

Yes, you take care Cheryl

Clare x

[Hidden]

Beautiful as ever with a lovely haze hanging over them.

[Kiera49]

My onc told me there is no evidence that you need denusumab every month

[Hidden]

Think that’s right. I was told I could go 6 months without it last year when I had a tooth extracted. Xxx