Hi Sharon, lovely to hear you have settled in nicely and being looked after so well. Just relax and build your strength up it sounds like a lovely place!
Hugs Janette xxxx
Sharon so good to hear from you and I'm pleased to hear that the hospice is looking after you well, so much better to have one to one care and to be able to feel confident there's someone there for you at all hours.Hope they get you sorted quickly, keep in touch xx
If your Onc is going by guidelines and not just their own preference I guess it's ok, though like you I think I'd feel a little unsure, but I suppose we don't like change when things are working. At least they are willing to go back to 4 weekly if this new regime doesn't suit you. Hope you are feeling a little happier now you've had claeification. Now go and enjoy your break and birthday! xx
Well onc has emailed my bcn back and she has said that current guidance says start at every 4 wks then to 8 weekly then every 3 months. So I'm going to go with that and see how it go, bcn said if i have problems with pain to just contact her and they will change it back to 4 weekly, suppose they can't say fairer than that.
Hugs Janette xxxx
Morning ladies, well I have just spoken to my bcn about the denosumab, told her I am not comfortable going to every 8 week but I said I will compromise and try 6 weeks so she is going to email my onc and ask if this would be ok with her. Just thinking about the winter months and how our bones tend to ache more in the cold weather!
Hugs Janette xxxx
i was given one dose when I began on Eribulin, but felt less well and decided to stay on zometa so as to know what was happening, eg where the s/e were coming from!
Like you Moijan I chose to stick with zometa, it's kept me stable for 6 years so why messs with it?!
It doews seem Denosumab doses differ but you need to feel happy yourself Janette that what you are getting is rigt for you
Janette, Denusomab comes in two forms, one can be gven every six months. At my hospital, some ladies have said they get it 6 monthly. i was offered it 6 weekly, but I think you can choose, I guess 6 weekly might be the cancer treatment dose, not too sure as im not on it. Here is a link that I found on the web
i chose to stay on Zometa as it is the 'devil you know' for me and im ferling ok on it!
Hope it is helpful
I have not had "bone juice" but my Onc and I discussed it. She said it would be given every month for two years, then every 8 weeks. We decided against it for now.
oh Janette, if it is making you that worried I think you should tell your BCN. I know that different hospitals have different regimes, some 4 some 6 some longer, I think I heard somewhere that some women only have it 4 times a year but can't remember where I heard that. Anyway, for your own peace of mind you need to let them know how unsettling and scary you find the prospect of 8 weeks - good luck xx
Okay ladies I'm getting myself in the bit of a tiswas about my denosumab being moved to every 8 week! The most of I've read about is 6 weeks?? Thinking of ringing bcn and seeing if we could go fo the 6 instead of 8.
Janette, great news! Lovely hearing about stable Mabels. Choc cake sounds like a good celebration to me! x
Bernie, I empathise, I have a port which in theory could be used for contrast but apparently the radiogrphers aren't trained to use them! so I still have to endure hunt the vein and it's horrible. If the other hospital is better I'd ask to be seen there if I were you. I always try to rearrange my appts if they make appts for 'the wrong one'. Great news that it's not in organs! Now to keep those bone mets stable and join the stable Mabel club x
Brilliant news Janette
Just what you want to hear go and celebrate with something nice.As far as Denosumab when I was on Cape they changed it to 6 weeks but as soon as I was on Taxol they wanted me back on 4 weeks as they prefered it to be 4 weeks so maybe ask them to put you back to 4 you can tell a fib and say your bones ached.
Anyway well done Mable Love and ((((hugs)))) xxx
Well Carolyn you'll be pleased to know that I have celebrated my news with a big fat piece of chocolate cake! It was scummy 😆I've enjoyed a lazy afternoon on the couch watching Dark Angel which is recorded Monday, would definitely recommend it a really good watch and a true story!
Hugs to all Janette xxxxxxx
Bernie, I do think that it is good to have no organ involvement, but I think it's aggressiveness is important too.
Carolyn, You are correct no contrast here. When I was in the hospital they insisted. A pulmonologist told me for what my oncs are watching that I do not need it and not to risk it. They are watching my lungs and one met in spine. Every time you put an allergen in your body you risk a worse reaction. FF
just checking in on you. Hope you are finding the hospice a blessing after the hospital. I too have had friends who use the hospice as a booster then go back home...dont let the name 'Hospice' bring you down, they are changed places these days. I went to deliver a couple of cheques to the Crawley one and had a lovely tour. They say they rarely keep people in long term..its more a revolving door and of course some people have 'hospice at home'. Team calling at home. Do have a good rest and come home again refreshedxx
Love and hugs
i am on the same page as you with cannulas and 'scanulas'
i usually buy a heat pad from Boots and wrap it rou d my arm prior to getting there...it works a treat, but best to put it ove a jumper arm or something as it can burn the skin if its next to it.
love and hugs, Moijanxx
Janette, I can see your glowing face all the way across the big pond!! Now you can plan lots of holiday fun!! FF
Hi, Stable Mable checking in! 😆😆😆 finally got home from appt, scan fine "stable", markers 25. I asked if my mets were sclerotic or lytic and she said they are sclerotic, she asked why I was asking and I said that there had been a discussion on the forum about it, she did say though that it doesn't really make any difference which they are??
Now then, I have one slight worry, she said she wants to change my denosumab to every 8 weeks instead of 4 weekly as I am ok with pain at the moment, does anyone else have them this far apart?? I'm just a bit scared of my pain increasing again however she did say that if that happens she would swap back to 4 weekly again.
Hugs Janette xxxx
Janette, Hope your wait isn't too long! I find waiting rooms difficult.......can't concentrate. Is there someone with you? Take care & let us know,
Hi Sharon I'm sorry that things are not going so well right now. The hospice will give you the best care whenever you need it and you won't have the stress of constantly having to chase after it. Hope you get sorted and back home soon. Keep in touch, lots of gentle hugs B xxx
Sharon, Sending my love too, along with the others, and to say I agree with them that hospices today have such a wide ranging role. They can get people sorted out, and have much more experience and knowledge than docs and hospitals. Hence your referral. When you get a chance let us know what you're up to! We all drop in here regularly and will be wondering how you are.
Sharon, I'm not sure how hospice works there, but I know here you can go to a facility or have it at home. I did hear years ago from one lady over there that hospice had a lot of nice programs like art classes. I hope hospice can get you sorted and maybe you can enjoy some of their complimentary services. Tons of hugs! FF
Sharon, I just wanted to add my love to the others. Sorry you are struggling and you are probably a little worried about the hospice but I know lots of women who have gone in for a few days and the hospice has got them back on track, meds sorted and back home. Sending you positive energy and strength xx