yes sorry about the progression...i was there in June. Hopefully your recovery will be a good as mine!
love and hughs,
Have not been here for a while, last chemo was as if it never happened. Not a single SE, not that previous were really bad. My 6 and last for now is in a few days and I hope I am going to have some nice time after that away from everything. Oh, forgot I am having a CT and bone scan next month, so, I am going to be experiencing that scanxiety everyone is talking about.
Felt a bit low today as I saw on FB that one of my classmates is gathering donations in order to go to Turkey to be treated. She is having a cervical cancer with bone mets. Just wanted to share it with someone, in order to get some kind of relief. Hope that she will have the right treatment there and she will gather money soon,as she has been under a wrong treatment for 10 months before being diagnozed.
Sharon dear, I know that staying away from family is hard, but at least I am happy that you are obviously receiving enought care and attention at that place. Stay strong and remember my favourite song-I will survive!
Nick, I am sure everyone understands why you might not be posting for a while- I am not so active as well. I do it only when I need to, and I guess that is the purpose of that forum, when we are not active, fortunately or unfortunately there are enough active ones for support and sharing. Hope your slight progression is going to be kicked off by your treatment.
so glad to hear you are being spoilt! You deserve a bit of that. And so pleased to hear the nurses are nice...makes a big difference.
(Got my best nights sleep last night for ages.......took a sleepng tablet! But felt better than ages today.)
keep in touch with us all, let us know how it goes, love and hugs
Nicky, Sorry you had progression in the liver. I always find it strange that some tumors grow and others don't. I picture they should all grow the same amount. I hope your new treatment kicks a$$, bug is easy on you. Welcome back! FF
Hello Nicky, sorry to read you have progression and are having to change treatments. A very unsettling time. We all understand why you needed some time from the forum to concentrate on yourself - you deserve it - you have always been a forum stalwart!
I do hope you are feeling better now. Good luck with the new treatment - whatever you and your Onc decide on.
Hugs and best wishes. Barton.x
Hello Sharon - such good treatment! Hospice nurses are brilliant, aren't they? They were marvellous when my Mum was ill. I know they do marvellous respite treatments, too. Enjoy the pampering while you can, but get well soon!
Hugs and best wishes. Barton.x
Aww Nicky, sorry you've been having a rough time. It's good to see you posting but completely understand the need to concentrate on your own situation. Hope they can get biopsy sorted quickly and it's not too unpleasant, then you can get onto whichever is the best treatment for you - good luck. Let us know how it all goes and remember we are here thinking about you and supporting you x
A long absence from me due to getting my head around slight progression in my liver (all bone mets stable by the way) and working out the treatment plan. It's all a bit up in the air despite expecting to change treatments this week as my onc and I have decided I should have another liver biopsy done. Not the most comfortable of experiences I know from the last one but better to have up to date info rather than move onto something that wouldn't work anyway. So, that's my little update - and excuse!
I have, of course, been readinf this thread along with many other ones but not in the position to offer support and advice as I needed to concentrate on myself for a bit. However, I'm hoping to be more involved again now.
Great news Janette, always good to hear about Stable Mabels 😊 As to denosumab I have been having my injections every 6 weeks for the past 18 months or so as it fits in with my visit is to hospital for Herceptin and Pertuzamab. I have felt no changes in aches etc and from the recent CT bones are still stable so it's still doing its job. I don't know of anyone having it less than that but maybe because they haven't posted on here? Enjoy your break and birthday.
Sharon, so glad you are now being looked after so well at the hospice. I hope they get your meds sorted and whatever else is needed to be done to get your strength up and back on your feet again to continue treatment. Sounds like a very welcoming place to be which is not surprising considering what everyone on this forum has said over the years about their own hospices. Put your feet up and get ready for Strictly tonight 😊💃🏻
Hi to everyone else, sorry if I've missed off any of your news or results and hoping that all treatments are going well.
DELETED......sorry just realised I responded to a very old post, must have pressed one of the old page Nos. by mistake ☺️
Your hospice sounds great thank goodness you are getting some good care which will help to bring you back to your old self
Love and (((hugs))) xxx
Hi Sharon Glad that you are getting such good care. You know now it's there for you when you need it. Relax and build up your strength. Hugs B xx
Sharon, so pleased you've got some good quality care, it must make you feel better if you are feeling happier and cared for. It's been a tough, tough few months for you.. I'm sure this will give you a chance to recuperate and gain strength, thinking of you often my old Erib buddy.
lots of love
Sharon, I'm pleased to hear you are getting such great individual treatment. How wonderful is that a Jacuzzi soak and a massage. Sounds like spa treatment. Tell them you want a mani/pedi too.When your family as k s if you need anything make them get you a nice plush robe and slippers too! Then go for some chocolates, fresh flowers, etc. Hugs, FF
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