Thank you FF. Take care.xx
I seem to make a mess of posting and start a new thread rather than adding to this one! I am sending good thoughts from sunny Devon and hoping everyone is coping with their treatments. I donāt do any gardening and like to read your posts about yours x
Yes nature is such a joy. We sat on the cliff and watched the seals today. It was wonderful.
Where was that? Glad you are having a good holiday. We are in Orkney, itās quite breathtaking. Always glad to get home to Devon though.
Bon xxx
Morning everyone,Ā
Itās been lovely to see this thread develop since it was first created in 2010 and I hope everyone here living with bone mets has found it a helpful and supportive place to be.Ā
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Please do continue to enable others to benefit from this thread by maintaining its existance as aĀ courteous and kind space that others can take comfort from by allowing each other to move beyond differences and disagreements wherever possible.
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This thread is very important for ladies going through a really frightening time and I for one do not like to see it being treated as a battle ground. If there are any issues that people would like to raise then it would be far more respectful to do it In private and not across the open forum. JoĀ
It was near Woolacombe. So peaceful and beautiful. Devon is so lovely x
Hi all
Not sure where to post this but looking for others thoughtsā¦
Scan results yday show some progression in liver - I had carboplatin last year which zapped 2 liver tumours completely for a year (was on letrozole only after carboplatin ). The oncologist has now given the following options:-
- Change hormone to exemestane and everolimus
- Chemotherapy - epirilicin capecitabine or carboplatin
- Aurora trial where they biopsy liver and I can then accessend palbocillib with fulvesterant
- Liver biopsy to check hormone status (also have pleural effusion which showed er+4)
Feeling a bit overwhelmed but Iām leaning towards e/e would value others thoughts thanks
Sarah x
Thank you so much nicky, ff and moijan for your thoughts and replies. Yes will ring oncologist tomorrow to try and get some clarity
Sarah x
Nicky, thank you so much for the info, a very interesting read!
Hi, to all, hope everyone is keeping well and this warm weather isnāt too much for you!
Take care, hugs Janette xx
Thank you for the cap link moijan - did u travel whilst on this and manage to get insurance? X
Hi Silver
Hope your steroid shot is effective and s/es subside.
Back to the heat for us tomorrow. A friend has been watering my pots. Fingers crossed. Butterflies seem to like this weather
Bon x
Thanks nicky thatās reassuring to know love my travels?. Hope our lovely summer contines so you can have some trips here in between treatment. X
How fantastic you have been to Oz! . Yes had insurance with mia in march to vegas cost 800.00 as I also have a chest drain but was only on letrozole then - but was worth every penny?. Would really love to go to Asia so will see . Onc rang this morning to say bloods ok apart from raised tumour markers up from 69 to 150 so he advised may be worth trying e/e combo first x
Yes feel happier guided by the experts. I have recently changed oncs as my last one left and I have more faith with my new one and did appreciate him phoning so we could discuss it further. Heās going to find out more about a trial using palbocillib and fulvesterant first then start next week ( the trial is not up and running yet so unsure of criteria didnāt want to start e/e until establish if itās prior use is permitted prior to trial. I was dis appointed last year to miss getting access to palbociclib and letrozole as by the time my onc referred me I was too unwell to take part in the trial.
How many sessions of carboplatin have u had and how are u finding it x
Yes I had insomnia think it was more the steroids though (still donāt sleep great! ). Took zolpidem which did help 10mgs I think it was. Yes the trial he mentioned is at my local hospital I did say I was prepared to travel if he knew of any other trials I could access.x
No moijan never had any hospital admissions or issues with high temperature whilst on carbo. I did have anaemia but had injections to boost red blood cells so avoided a blood transfusion.
Ff at my hospital they use iv unless you are having lots of chemo and views collapsing. If I have more iv chemo I would definitely need a Porto cath as my viens are pretty knackered now!! I wanted to try and avoid Porto cath as that corbited with chest drain would make it very difficult for me to get holiday insurance I would imagine? However far easier to have iv chemo than the struggle to find views! X
Hi Bon, thatās really worrying! There is no way I could do the injection myself, not good with needles, no massive phobia but i never look when they do my denosumab and zoladex. Like you i find it reassuring to visit my Christie unit every six weeks.
Itās a shame as it looks like more cut backs on the NHS of which I am very grateful we have!
Hugs Janette xx
Hi
Interesting to hear about Denosumab. A friend of mine who is sadly no longer with us used to have her injection at our local hospice.
This drug was licensed in late 2012, I was diagnosed Dec 2012 & was put straight on it in Jan 2013. Over the years I have had it 3 weekly, 4 weekly & 6 weekly depending on what other treatment I happen to be on. My onc is now moving me to 3 monthly injections. Apparently it stays in your system for quite some time.
Helen x
Hi Silver and Helen,
Ā
While I agree that cost cutting is most likely behind this when I had to stop Denosumab for dental work and then later had to stop it for 8 months or so, my Oncologist assured me it wasnāt a problem and would continue working for some time. I also asked why then give it monthly and why the time scale for giving it varies so much and said it was usually done either to fit in with other treatment, or with the Chemo unit, and said if I wanted it alternate months that was okay with her. Then explained the drug had only been used for about 5 years, this was last year which would fit in with what youāre saying Helen, and they were really still finding out more about it for cancer patients, as opposed to itās use for osteoporosis.
When I saw the Mac Fax Consultant, (Iāve usually seen the Registrar) last week for my check up I asked again what they considered the correct time scale for stopping Denosumab prior to dental work (not regular fillings) and while the Registrar has always said he personally thinks longer than most Dentists and Oncologists recommend, the Consultant said once it is in your system it can take years to clear and explained some patients are on it for years and have no problems dental wise, others have only a few doses and do, Iād only had 5 injections, my jaw healed but broke down later but is fine now. What always baffles me is why we all get the same dose regardless of weight?Ā
Ā
Kate x