Morning jellytot
What a good start to the new year. Really pleased for you.
I tend to feel more tired and a bit more bone pain for a about week after having Denosumab injection Been on it now for about 4 years now.
Linda
Well done ? glad youāve got that sorted and hopefully feel a bit more settled.
Thanks to Bon, Linda, Moijan and Nicky youāve all made me feel better about my diagnosis, prognosis and treatment plan.
Onc confirmed on the phone last week that mets are in spine, pubic bone and pelvis, heās already got me on zoladex and exemestane as ER+. Seeing him on Monday to discuss everything in more detail face to face then start zometa on Wednesday.
I have been thinking my days are numbered but you ladies have made me realise it wonāt get rid of me that easily!
Have a good weekend all x
Hi FF, when I was first dx with mets the bone strengther my onc started me on was Alendronic Acid, nightmare of a tablet because you have to take it around an hour before food or drink and stay upright for that period too!! As we all know if youāve had a rough night with pain etc all you want in the morning is a nice cup of tea/coffee and relax a bit plus if you need to take painkillers alot are not good on an empty stomach!
Told my onc I wasnāt prepared to do this so was put on demosumab injection every 4 weeks (now every 6 weeks) soooo much easier, simple quick injection (like having the flu jab) some ladies get a few aches a day or so after, you need to get bloods done two or three days before hand to check all is well mainly your calcium levels.
Zometa infusions I canāt comment on as Iāve not had them but I gether from reading on most ladies who have been on and changed to denosumab say itās much easier.
Hugs to all, keep those bones warm, Janette xxx
So those of you saying I deserved treatsā¦ Weāve booked a holiday to Mexico and we leave in 20 days!! xx
Moijan - thereās a lady from my nov14 chemo group who lives in Sweden, she had chemo originally now has bone and lung mets and has just been put on ibrance. Donāt you just love NICE?!
X
Morning ladies, itās that man again!
My lovely wife Ladybird is suffering from great pain from her knee. It has been swollen up with Bursitis for three months or more but without pain until this week.
She saw onc on Friday and he has put her forward for bone scan and ct scan but that could take weeks. Had anyone had similar pain? Sheās on Fulvestrant and Denosumab and nurse comes tomorrow to inject both these at home. She cant walk without help and the pain is awful to see. She has pain patches and other painkillers but canāt take ibuprofen because of clash with Lithium.
Any suggestions gratefully received.
Chris x
Hello Chris
Sorry to hear about poor ladybird ā¦living with acute pain is miserable for any quality of life ā¦I had to Google knees bursitus and couldnāt really find any magic remedies .
Have you tried something like voltaro rub in cream or even a heat pad to help? I am having hip pain too and have been prescribed liquid morphine ā¦too be honest paracetamol and ibuprofen do much the same job without the constipation issues !!
Sending hugs xxx
Hi ladies, quick update from me. I was dx with bone mets in November, started zoladex and exemestane in December and first zometa booked for Wednesday.
I saw my oncologist yesterday and he is keen to get me on letrazole/palbociclib (ibrance) combo asap and is confident that I can pick up the drugs on Wednesday when I go for my zometa infusion.
Moijan I know you have been campaigning for this drug. It is interesting that my onc said it was approved in November for first line defence against secondaries with no mention of no previous chemo. I had 6 months of chemo in 2014/15 and he is going to ācheat the systemā and say that I didnāt take the zoladex/exem as that would preclude me even though it was just one month.
He said that this combo should halt the progress of mets for an extra 6/7 months on top of letrazole only.
Also everything else Iāve googled about ibrance says itās for post menopausal women, but heās giving it to me with zoladex because Iām pre-menopausal.
May be Iām lucky and have a good oncologist? He is a leading clinical oncologist in our area and heavily involved with trials. He also wants to get me on the cyberknife trial.
Hope this may reassure some of you that you may be able to get this miracle drug xx
Jehovahā¦have a look at the āmeet upsā thread-good luck with itxx
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Moijan???
Update. I saw my onc on Monday and he confirmed 2-3cm tumour in one vertebrae (t12) plus tiny ones in groin area and sacrum.
My initial treatment regime is:
Monthly zoladex
Daily letrazole
Ibrance 21 days out of 28
Monthly zometa infusion
Also on venlafaxine and amitryptolene for pain, drepression and flushes.
Onc said heād review me monthly because ibrance is new and Iāll be scanned every 3 months to check progress. Could change drug combo, possible chemo if all else fails.
Had first zometa, ibrance an letrazole yesterday and having trouble sleeping and Iāve been awake since 3am feeling terrible. Temperature, nausea, diarrhoea, thirsty dry mouth, dizzy/fuzzy head.
Iām assuming this is down to the zometa? But could be the tablets 
How long does this last? Is it just for a few days after the infusion like chemo or is it permanent?
Coping tips highly welcome!
Xx
Hi annrose, what side effects do you have and how are you coping with them?
Hello schomooley
A big welcome to the threads and our little family of real ladies that understand. .
I have denosumab injections as a bone strengthener but lots of ladies here have zometa and might have better advice ā¦it might be worth having a word with oncologist about this option as itās quick too ā¦just a jab !!
I have found everything has side effects and I seem to get everything listed too! ! But if it keeps the blighters from having a party in the bones and liver then we have to try to live with things !!
I have been on letrozole for over 2 years now and I used to moan about the side effects here all the time but I guess I am just grateful I havenāt needed to move onto the big guns chemo yet!!
Ibrance is becoming more available here now in the UK and there are a couple of threads running here and a few ladies now taking it.
Once again welcome xxxx
Hi Schmooley
Sorry your SEs are not good.Both tamoxifen and exemestane can affect your vision and cause cataracts so maybe previous treatments are catching up with you. I was on tamoxifen for 5 years and have been on exemestane for over 2 and have a developing cataract. I am also, like Carolyn, on denosumab which doesnāt cause me many problems and is much less hassle than infusions. Hope things settle down for you.
Bon xx
Hi Wendy, sorry to hear you are getting new pain. I also had this at the beginning of December, contacted my oncologist and she brought my scans forward, got the results last week (after a horrible worrying Christmas!!) anyway turns out all is fine and even better with improvement from last bone scan!!! To say i was relieved is an understatement, i was convinced things were going wrong!! And for the first time I saw since dx (4 years ago) I looked at my scans ?? I thought I would be traumatised but actually I was really glad I did because now I know where I have disease so now I know if I have pain in a certain area at least i know if itās a diseased part or in a new place!!
Hugs Janette xx
Thanks Janette thatās very reassuring but I have really bad knee and hip pain with burning so sent for a scan. Onc gave me super strength painkillers which make it feel drunk for the first couple of hrs but great for a good nights sleep. Now waiting phone call for results. I just feel like constantly in treatment as tablets work then they stop and I get pain and back in radiotherapy again. I am working full time and they are really supportive but I just want a period of calm and normality. We have booked our holiday and want to be stable to go . Sorry just need to offload x
Hi schmooley, I was diagnosed just before Christmas too - mets in vertebrae, pubic bone and sacrum. Iām 50 with 12 and 15 year olds.
Iām on zoladex injection monthly, zometa infusion monthly, letrazole and ibrance. Started this new regime 10 days ago (Wednesday) and spent Thursday to
Sunday in bed with flu symptoms plus nausea, diarrhoea, headache etc etc. Nurse reckons it was zometa which caused the SEs and hopefully will be easier next time.
Iāve not had any noticeable SEs from letrazole/ibrance combo. I also take venlafaxine for the flushes.
Hi everyone,
was diagnosed with secondary bc mets to the bones in neck and ribs just before Christmas. Lovely present eh. Beginning of January changed from tamoxifen to letrazole got denosumab injections and calcium tabs to take daily. Also got one off radiotherapy Ā to neck for pain as tumour has made big hole in neck apparently.Ā
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Will be starting palbociclib on 6th February. Ā Anyone else on this if so, how was the SEās ?
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Thanks Doreen xx
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Hi to everyone on Palbociclib and Letrozole. Ā I have just completed my 17th cycle on these drugs. Ā I have extensive bone mets so also have monthly Denosumab. Ā I have to say that I have found this very doable. Ā Except for the hospital appoinments (many as I am currently still on a trial for these meds in the U.K.) my life has not changed at all. Ā I also have a busy social life and lots of animals. Ā First few months I was a little tired at the end of the cyclebut this is not really the case nowā¦ Ā My White and Red blood counts have been low the whole time but I have not even had a cold. Ā My hair has thinned slightly but I amĀ lucky that I had thick hair to begin with. Ā I started on 125mg of Palbo but recently requested a drop to 100mg when I found out that this is really the ideal strength to be on. Ā Good luck everyone and I hope these drugs are as kind to you as they have been to me.
Hi other Ibrance ladies!
I take the last one of cycle one tonight and looking forward to my week off. I spent the first 4 days in bed with āfluā, a couple of very tired days, then 3-4 days later thumping headache, sore throat and stuffy nose!
I did have my first zometa infusion on same day I started ibrance so no idea which caused what! Iāve got my pre zometa blood test today but also being Day 21 of ibrance I wonder what itāll show?
Iāve then got 5 ibrance free days before next zometa and zoladex on Monday. Such a confusing cocktail. Interesting to see what next month holds.
Afternoon Renee
So sorry to hear you have not been well. Hope you start to feel better soon.
Linda