I’m really getting annoyed at the fact that I can not have my Denosumab jab at the moment as the hospital doesn’t want patients attending. I understand that but I just do not know where to go or who to ask about a Community Nurse coming home to give it to me. I have so much pain when I don’t have it. I asked my GP. All she said was ask your Oncologist as you need a specialist nurse. My Oncologist said I could miss it after only having 2 jabs after a 7month break ( long story). I’m in Liverpool UK. Any advice please. I would be really grateful. I know the NHS are under pressure but I’m over 70, have Stage 4 Secondary Breast Cancer in my bones and lungs. How sick do you have to be to get this help? Off my soap box now and looking forward to your help.
Hi, I also live in the uk had my last one in March but onc said I would be ok until I have zoledex in June. When did you last have one and have you been able to speak to your onc. I am lucky at my hospital if I go the back way dont have to walk through hospital can go straight to macmillian unit. I am due treatment end of next month will see what happens hope you get sorted, all the best
Hi, I had my last jab in March. My Oncologist is due to call 13th but he said I could miss them but I don’t want to. He told my Cancer Nurse this and not me. I didn’t have a choice as far as visiting the hospital goes. They just said we are giving you three months of Ibrance. I can also go in the back way and miss the main hospital. I will see what he says when I actually get to speak to him. Thanks for replying.
Hi, I live in UK and got sent denosumab home for self-injection, so not a complex clinical task. They gave me a link to a video to watch and then a printed step-by-step guide. Perhaps this might give power to your elbow and they will do the same thing for you.
I'm in Newcastle upon Tyne. My breast cancer is also mettastic, spread to my bones in the vertebra, back right hip & now in my sternum. I have regular monthly injections of demasomab, Zoladex & monthly bloods taken where my oncologist regulates the amount of Ibrance I take for 21 days each month. I have even had radiotherapy. There shouln't be any reason why stage 4 cancer patients would not be seen regularly. Speak to your Macmillan nurse or call your oncologist. I atttend the Freeman hospital every month. All we can get at this stage is palliative care via the treatments. Even with covid19 creating havoc, we are still on prioritised care. You should insist on havi g your treatments. Government announced more than a week ago, that anyone neeeding treatment should go to hospital & continue having it.
Hi , my Denosumab was also postponed, but the pain and discomfort in my back came back so I rang my oncologist who has now reinstated it , but she has also scheduled an MRI as well to check my spine as a precaution!
I live in Nottingham and I’m treated exactly the same as before Covid-19
However the clinic is in an annexe of a private hospital so I don’t have to trek through the main hospital
I had to miss a denosumab injection once (long story) and my oncologist said it didn’t matter...but there’s no reason for you not getting yours....ask for it to be posted to you and do it yourself...or could you not be referred to a hospital that’s doing them?...
It is annoying Barb. I’m going to pursue it now after all the,informative replies. Hope you are feeling good today. We have been to the allotment. Was lovely. Best wishes
I ride my horse out yesterday and it was gorgeous in the woods nice and cool
I then drove up to the top of the village near my daughters and watched the Supermoon rise...it was a pinkish colour and enormous ...but it clouded over (typical) so I only got a glimpse
My in-laws have an allotment and grow all kinds of fruit and veg...I’m no gardener but it must be very rewarding
Let us know if you’re successful getting your denosumab...it probably won’t matter to miss a dose but it’s peace of mind which is very important...we need no extra stress
Great you managed to ride yesterday and take a ride in the car to see the Supermoon. The sky was so clear here in Liverpool and I have never seen the moon look so bright. Quite eerie. The allotment is great and such a therapeutic interest. We are going tomorrow hopefully. Think it’s going to be a hot day again so have to water. I expect your in-laws enjoy their allotment. Many do.
I will let you know next week what is said but I am going to push for my jabs.
Take great care and easy on the riding. Enjoy the weekend.
I get all my cancer treatments at home, including IV chemo, Denosumab injections and Denosumab injections and delivery of Xeloda. Could your district nurse not give you Denosumab? Good luck.
Morning Cheryl ! I would ring your hospital and ask again , since the Health Secretary has announced that NHS services which have stopped so coronavirus could be prioritised , will begin to be restored ,starting with patients such as those needing cancer care , as the number of Covid 19 patients in hospital has started to fall . I hope you soon get sorted ! Take care ! x
Hi Cheryl, I am in Shropshire, and the clinic I attend in Shrewsbury, has changed my denosumab injection to pills....ibandronic acid. This does the same thing as deno and I take 1 pill each day. It might be worth you mentioning that. I only have to go to the clinic for a ct scan and goodness knows when that will be, should be May. Good luck, Fay
Pills, that’s interesting. I haven’t been given this option but will bear this in mind when I get my Oncologist call next week. Thank you. Cheryl
Thank you everyone. I will await my Oncologists phone call on 13th and suggest all the things you lovely ladies mention. It eases my pain so much how can he refuse me having it at home. Inside sources from the hospital have told me the hospital I attend are opening up the section of our new hospital specifically for Cancer Patients and scans are also just a couple of weeks behind schedule. Watch this space. Thanks again. 💐👍
Hi Cheryl,
I agree with what the other ladies have said about doing what you can to still get your denosumab injection. I don't see why it should be suspended. It is part of your treatment plan, and as you say it helps with the pain. So why stop it? I was listening to the daily update on BBC1 recently and the Health Secretary mentioned that essential cancer services would continue.
If you cannot get the injection at the hospital, I would ask about having a District Nurse stop by your house to administer it, or see if it can be prescribed so you can do it yourself if you feel confident doing it. I have zoladex injections every 28 days, which I get done at my doctor's surgery by my GP. But I noticed that on my prescription request form there is the option of having it prescribed. So I could self-administer if I wanted to. I'm not sure I would want to, but it is good to know that it is an option. I think it's also an option to have it prescribed and have another doctor administer it if I am travelling, but I have not done that.
Sophie
• in reply to
Thank you Sophie. I just think I was robbed off by a junior nurse when I went to the hospital. I really don’t mind doing it myself. It isn’t a problem. My GP said I needed a specialist nurse to inject it and said I have to ask my Oncologist for a Community Nurse. I just think the left hand doesn’t know what the right hand is doing at the moment. I’m going to insist on having it whatever it takes. Best wishes
Cheryl
• in reply to
You’re welcome, Cheryl. I find the response you received totally unacceptable. I hope that you get your injection. I would insist upon it! I find that if you are persistent and follow up you can normally get what you need. Please let us know how you get on.
Sophie 💐
• in reply to
Hi Sophie. Good news is I can have my Denosumab in June. The Consultant said he didn’t want his patients going to the hospital. Fair enough. I can also have my CT scan same day as my appointment so that I don’t have to go to the hospital twice. Don’t want to go once but needs must.
I have put it on the forum with another Lake District photo. I’m missing it now.
Take care
Cheryl
• in reply to
Hi Cheryl,
That is great news! I'm so pleased you will be able to get your denosumab injection and CT scan the same day. It must have been such a worry for you when you were not sure what was going on.
Take care,
Sophie
I will Sophie. 🙏🏼 thank you.
Hi Cheryl
Sorry for late reply. I agree with everyone else, and you should get your injections, especially if you are feeling pain without them.
I did read somewhere literature on making services available by doing injections in the car park, but I’m so sorry I have been searching and can’t find where I read it. I work in the nhs and it was work related documents, so there are policies out there to support this decision.
Good luck
Clare x
Thanks for replying Clare. It would be great if I could have it administered that way. I hope you can find the article. It’s all helpful for when I speak to my Oncologist next week.
Best wishes
Cheryl
Hi Sandra. I understand completely. Maybe it’s coincidence that I seem to get more pain when I don’t have the Denosumab. I had osteonecrosis after a tooth extraction. Rare I know but it happened. I was told the Denosumab would stay in my body for 6 months so missing a few wouldn’t matter. I had to lay off the jabs for 7months until healing took place. It never did really but I have been back on my jabs for two months now and the pain seemed to ease. I also had 3 pathological fractures in my ribs from the Cancer and it was explained that the Denosumab helps Osteoporosis and helps the calcium to adhere to the bones and also it was a strengthening drug. Thank you so much for your reply. It all helps. My hospital is having a new building and they are opening up a new part of it for Cancer Patients. Also, for CT scans you have to go prepared so that you can walk straight into the hospital and through to the CT scanning department. No waiting. That’s good news also as I am due a scan. Maybe there will be more news about the treatment mid week coming. Let’s hope so. Best wishes and I will update as soon as I hear anything.
Hi FLowerfairies, I'm in UK, my last Denosumab was in February; I was told it was being postponed for 3 months. Next onc appointment is 28th May - I was told by telephone but then letter came saying at hospital. I'll wait until nearer the time and check. I have been more achy but it's more in my joints that the actual bones which I suspect is with being at home for so long and not being able to get out and about. Also I work from home too which doesn't help. I'm not too concerned at the moment because the Denosumab is more preventative than curative so as long as they keep me on the Palbo, I'm ok with that. If they try to stop my Palbo though, they'll have a massive fight on their hands because it's ok saying "for now" whilst covid is still rife but until when? would be my question. Hopefully it won't come to that though. If you are concerned though, you should definitely contact your Onc and let them know and hopefully, because you suffer without it, they'll put you back on it. Let us know how you get on. Take care. Josie
Hi Josie, my joints also ache but the pain is mostly in my pelvis and ribs where I know there is a considerable amount of Metastasis. My Oncologist is due to call tomorrow. Seems like as far as meds go we are on the same track. I agree sitting around doesn’t help. We have an allotment so,Imdo visit there a couple of times a week. Beautiful outside space. Take care and watch this space. Cheryl
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