Hi Ladies, I was wondering if anyone is on denosumab? I think it can be taken along side bisphosphonates for bone mets?
thanks
Rachel
Hi Rachel
Denosumab has just been approved by NICE and will be available on prescription within the next 90 days. . It is a monthly injection and has favourable reports for reduced skeletal morbidity. It is taken instead of the other oral or IV biphosphonates. Worth asking your Oncologist next time you see him/her.
I have secondary bone mets and have been told that they will prescribe it for me.
Esha
Hi everyone. I’m due to have another go at capecitabine due to bone spread. I last took it nearly 3 years ago when diagnosed with liver and bone mets and suspect chest nodes. All my organs are now NED, so hope that the pills might help my poor bones. I’ve had a hell of a year, but I digress. Should I be asking my GP for a flu jab or am I too late? I’m hoping I cope as well as I did last time. Feeling a bit down but trying to look on the bright side. X
Hi Tawny
I had my flu jab on day 7 of cycle 5 of capecitabine. Felt ropey for 24 hours but otherwise ok.
Ingrid
Have had 2 flu jabs when on Xeloda, this year and last year. I have it during a “tablet-off” week.
I don’t often look at this thread these days, because I get grumpy about the Latest Posts / Latest Replies user-unfriendliness! But thanks for replying re “disabled”/VAT, I hadn’t seen that reply either! I’ll go and find the link…
broomsticklady:
Thread title is “Bisphosphonates and Omeprazole”,
breastcancercare.org.uk/comment/2060521#comment-2060521
I found it by going to the Secondary bc section, “treatments and medical issues”, THEN spent ages checking Latest Replies (now 299 of them) but it is growing at a rate of 10 pages a day now, and and we can only navigate through the pages sequentially. Bernie Nolan thread is on page 32. Anyone else agree that this is ridiculous?
Mrs Blue - I second third fourth and fifth your grumpiness re latest posts!! I think what may not be appreciated is that a lot of those using this forum are feeling a bit low / tired and maybe crabby, looking for help or inspiration, and simply do not have the energy to search thru 10 / 15 pages of duplicate latest posts to find the ones they’re interested in. I usually look at this thread but its been too far down the page count for me to get at recently - which is crazy!!
Nina
Thanks for info re. flu jab. Not due to start xeloda for a few weeks so will flag it up. Yes, this site’s a mess. I’m not really a regular poster but I do read it a lot. Seems very hard work at the moment, most of the time I give up.
x
Thank you for the flu jab info. I’m not starting xeloda for a few weeks, so will flag that up. Yes, this site’s a mess. I’m not a regular poster (though I did get quite heated on the Bernie Nolan thread) but I do read relevant stuff every day. It’s very difficult to find things unless, like this post, it’s a regularly posted thread. i’ve already posted a version of this but it disappeared into the ether, so apologies if two versions appear!
x
Tawny - if you’ve not started Xeloda yet, best to get the flu jab out the way now. I was told to have it at the start of a new cycle before blood counts have dropped much, but actually ended up having it on Monday during an extra week off after cycle 6 (to let hands and feet recover a bit) as it was already booked before chemo break and figure it works out better for me anyway. Arm was a bit sore for a couple of days but otherwise OK.
mrsblue - I started looking at the Bernie Nolan thread when it was first posted but have given up on it as couldn’t be bothered with all the arguments on it.
Nina - I agree with what you say about the latest posts.
Thanks Gail. Am waiting for my Macmillan nurse to call me back. I just wondered whether it was too late in the season to have one.
Hi Tawny, I don’t think it will be too late in the season, our surgery was having flu clinics up until today!
Good luck with the Xeloda.
And agreed plus plus re comments on latest posts.
Tawny - you should still be able to take flu jab now. I found last year although I was having chemo I didn’t even get a cold, so definitely worth it.
Having an extension to the chemo break as neuts were only 0.87. Thought the extra week off chemo this week would have brought them up enough so don’t really understand why they’re so low as this is the first time I’ve had chemo delayed for neuts (though did have to repeat them on chemo day last time). Was happy to have a week off but was hoping not to have any further delay. Also had onc appt today. She seems reasonably happy with progress but wants to see me in 4 weeks instead of usual 6. Maybe due to Xmas holidays coming up but have a small area of broken skin under breast so she might be wanting to check that too.
Hi Gail,
Sorry to hear about your low neuts I hope you can build yourself up for next week so you can continue with Cap. Hope you can get something done about your skin mets. Fingers crossed for that.
I’ve just been catching up with all the supplementdiscussion, I take omeprazole 20 mg each morning and take that a few hours after my Cap so hopefully I should be ok. I’ve never hear anything about there could be a problem with absorbtion I’ll ask the pharmacist to check my meds with taking other medications as well. I’m on 21 tablets a day when taking Cap and probably should have asked about this before. But as Lemongrove pointed out because we get the Capectibine from the chemo units the pharamacist is unaware we even take the meds. I also take Vit D and B - will be interesting to find out.
I read with interested about dry eye but does anyone wake up every morning with sleep around the eyes I’m bathing mine every morning could this be dry eyes and should I see the GP or optician? sorry if I sounds a bit dense.
Hope you’re all coping with this treatment my hands/feet are awful plus I have a nasty rash on my hands they look like they’ve been scalded. I have this from the Taxere and the doctor say I’d been burnt from the inside out. Taking anti histamine in the hope it works its magic.
Thanks for listening
Love and hugs
Chris xxxxx
Hi Chris
I forgot to mention I checked with my onc about the PPIs and she reckoned it wasn’t a problem taking them with Cap.
I get a bit of sleep in my eyes sometimes but this is due to a pre-existing condition called blepharitis. I treat them with cotton pads soaked in hot water and then clean the lids around my eyes with water soaked in a solution of water with a touch of baby shampoo. Could be worth checking with your GP.
I had a rash from Tax but it did eventually fade by itself. My feet are much better with the chemo break.
Re: taking Cap with PPI’s. BCC checked this and PPI’s are not contra-indicated. However, indigestion remedies (antacids and magnesium remedies), definitely are and should not be taken while on Cap.
With regard to dry eyes, one of the SE’s of Cap is conjunctivitis (which causes a gritty feeling and redness), and this should be treated with prescribed drops. The reason I know this is that my two SE’s are heartburn while eating, and conjunctivitis.
Thanks Gail and Lemongrove. I think a trip to the GP’s in order especially if it’s conjunctivis. I woke up this morning and my husbamd thought I’d been crying and my eyes just wouldn’t stop weeping nothing nasty just clear tears. It’s my week off and after 13 cycles I know I shouldn’t look forward to it as it seems its when I get the worse side effects.
Thanks again
Chris xxx
Hi all sorry will be leaving the cap thread onc decided cap no longer working so back onto iv only been given 2 options bit worried coming to end of treatment thanks for advice hugs Laura
Laura, just seen your post and want to say I’m so sorry that Cap didn’t work. I wouldn’t despair about diminishing options just yet, cause my Oncologist say’s there are lots of options after Cap (so you could always ask for a second opinion with him). Have they talked about Vinorelbine as an option? Apparently if/when Cap fails that is the next one in line for me.
So keep your chin up chicken.
Lemongrove - I’ll avoid antacids in future then and stick with PPIs then.
Chris - hope you’ve got some relief for your eyes.
Laura - sorry Cap isn’t working for you. Hope your next chemo gets better results for you.
Looks like I’m going back in on Friday for next chemo appt, so hope neuts are better this time.