Glad you didn’t have anything scary today Carolyn. I had bone juice today - it took an hour to arrive from the pharmacy so
didn’t go out for lunch. Malfunctioning IT wastes such a lot of nurses time rebooting their terminals when they could be doing nursing
Hi lovely ladies
Carolyn - pleased your appointment went well today.
Janette- good luck for your results tomorrow.
FF- Hope you’re enjoying the new job & your treatment is going well.
I had my onc appointment today and I am a stable Mabel!! No visible reduction in the liver mets but no progression either so I am staying on eribulin for another 2 cycles at least (9&10) . Bone Mets behaving as well. Very relieved.
I know what you mean about the BCN sitting in on appointment- I always think it’s going to be bad news if she turns up.
Big ((((cyber) ))))hugs to you all
Helen x
Hello Helen
That’s good news about stable …as long as the treatment keeps the little blighters under control it’s worth the side effects !
Jeanette …all the best tomorrow my letrozole buddy. .hope all goes well and I will be thinking of you …
Hugs everyone xxxx
Thank you Helen and Carolyn, sat here with a banging headache wishing it was this time tomorrow! I always say to hubby that I wish he could just go in my place and let me know what she she says!!!
Glad to hear you both had good results today…long may it last!
Hugs Janette xxx
Jeanette
You will be fine …you tm was low but what with oncologists appointments and mammogram results …that dreaded white envelope dropping through letterbox. …no wander we eat so much chocolate and have so much stress …
Oh to have our normal lives back
Xxx:relaxed:
Hello pippin
It’s a scary time but stable is ok …not sure I understand more mets but bone juice doing its job bit though? Hospital lingo is very confusing xxxx
Hello girls,
Sorry for my absence, I’ve been pretty poorly. The new meds have hit my system hard and I have had nausea, constipation, diarrhoea, headaches, insomnia, fatigue, gosh it’s been a rollercoaster. I’m slowly getting used to them I think and have the nausea at least under control with metacloporamide.
I see my onc again on Friday next week, I just don’t know if I can cope with the insomnia until then as it’s pretty awful, am managing 3 hours sleep per night maximum. I must try not to nap in the day as that must make it worse. I know it’s all for the greater good, but it’s so very hard!
Love to all,
Jelly xx
Jellytot
Phew you certainly have the full set of side effects …how miserable for you and of course it’s a new drug so we can’t really help with any advice.
Maybe it will settle down after the first dose and you will feel back to a new kind of normal again.
Hugs xxx
Hello Maria
How nice to hear from you and it’s a really stressful time waiting for results .
I haven’t got a bcn at all …hence why I use these forums for info. Back at my primary dx …I almost fell over them everytime I went hospital but now at secondary …they don’t want to know .
I’m sure if tamoxifen stops working they might consider another hormone like letrozole which I take but if you are pre menopausal you might need to have zoladex ( I think) to switch woman’s things off !!
You don’t need to say it aloud …shout and rant as we all understand how you feel.
Anyway. .thinking of that white envelope with scan results popping through your door any day. .we are holding your hand and sending you hugs
Xxxxx
Well I’ve been sat here for over an hour only to be informed that my CT results have not yet been reported! So now have got to wait at least another half an hour for them to come across!..not a happy bunny!
Janette xxx
Jeanette
We are all holding your hand …for good news …keep calm if you can …rise above the stress! !
Renee
Glad u told the bcn what you thought …don’t think they are interested in secondary ladies …we upset their stats for survival !!
Hugs xxx
Stable Mabel reporting in!
I can relax again now for another 3 months.
Hugs Janette xxx
Jeanette
Well done my letrozole buddy. .it’s still doing its job …did you ask about the itchy scalp today?
I just hope it’s still working for me too as I don’t get scanned til October. …
I had my bone juice yesterday and feel slobby today so hopefully be back on form again tomorrow. .
Hugs xxx:relaxed:
Yes Carolyn we did discuss my itchy scalp and she suggested maybe trying a different brand of letrozole, I currently take the branded Femara, she doesn’t think it’s down to the letrozole itself but could be one of the bulking agents in it??? So any ideas ladies on preferred brands would be appreciated. I’ve also started to get really dry and itchy at the very top of my legs (groin area) I look a dirt bag with what looks like I’m itching my lady bits!! ? hey ho I’m not complaining though as letrozole is remaining loyal to me!
Hugs Janette xxx
Hello Jeanette
Ha ha …I’ve got the itchy bits too …sometimes my bum cheeks and back of my legs !! Im ok until i start itching and then it goes on ! If u try a different brand …avoid cipra .I can’t get on with that one …I like accord brand but Sandoz is another ok one and Dr reddy is fine too.
I find tea tree oil stuff good. .creams shower gels and shampoos all help.
But …it’s doing its job so we mustn’t complain.
Hugs xxx
Jeanette
I think u maybe blaming letrozole but looking at side effects of DENOSUMAB …it’s says itchy and dry skin as a possible problem …you have been having it for a long time now …could it be that? Our hospital stops it after 3 years …
Hugs xxxx
Hi Nicky, lovely to hear from you. Really hope you are doing well. Sorry you had rubbish weather on…thats typical British weather for you isn’t it, you can’t plan anything in this country!
I was actually thinking the same thing about Femara, I am lucky enough to have a great set of GPs at my surgery and they had no reservations about prescribing me the branded, if I’m being honest I really do feel that all this itching is down to the fact I have been thrown into menopause and it’s symptoms from that because I googled menopause symptoms and I appear to have most ? haha lucky me!! The itching and dry skin, low mood, tiredness and irritable. My bcn has referred me to the clinical physiologist at The Christie who are meant to be amazing at teaching coping mechanisms etc.
Take care hugs Janette xxx
Hello Maria
There are a few hormone options so you hopefully have them as an option at a later time. We moan about side effects but really it’s minimal compared to some treatment …and if we didn’t moan …then we would have nothing to.post here …
My oncologist says firmly that my arm with the lymph node removal must not be used even after 13 years …only once did a locum nurse use it.
Reading on other threads though …a lot of oncologists relax that you can use that arm for taking out blood but not putting in anything …it’s very much different from hospital to hospital but it’s to do with infection and lymphadema …
I’m so sorry you got the double whammy of primary and secondary. .must have been tough news to take in at the time …
Hugs xxxx
I’m pleased to report my nausea is much less now, my stomach issues aren’t as bad and the headaches have gone. However insomnia is still plaguing me. I’ve called my trial team but I have to wait to hear back as to whether I can take anything because everything has to be approved by Novartis. I’ve tried relaxing as much as possible before I go to sleep. I can’t do hot drinks or baths as they make me feel hot and flushy. Any tips for reducing night sweats at all as these aren’t helping with the insomnia!
Hope everyone is doing well xxx
Hi Jellytot, I dip into the forum occasionally and was sorry to read about your horrid side effects, glad that they are getting better. I think I had pretty much the same ones as you when I started the PIPA trial, I’m probably repeating myself (brain dead these days!) but I almost gave up in the early days.
Palbociclib and Ribociclib are almost the same drug I believe, just made by different companies so hang in there, I’m sure it will get much easier! I’m not allowed to eat grapefruit or its juice, Seville oranges or marmalade, have you been told the same? As you said, every tablet/supplement has to be approved on a trial in case it skews the results.I think I’ve already posted somewhere, my latest CT scan shows a 50% decrease after 15 months so it’s still working well. I hope you get longer, best wishes x