Hi ladies, although I’m not on this combo I am looking at it regularly as some of you started on it the same time I started Capecitabine and it’s also a combo I may be on in the future. Just to say that I’m sorry some of you are having bad SE’s - it’s a real *ugger when you’ve had several years of, say hormone treatment with little SE’s to then go on to something else that causes loads of them. I’m suffering a bit of nausea with Cape which does affect me when I’ve felt so well for 5 years on hormone treatment and just got one of the nasty little cuts on my thumb which it can also cause. However, hoping that all the new stuff we are on is working well for all of us.
Take care
Nicky x
Hi Karen,
My nails started getting really soft a couple of months ago which was a few months after starting on E&E. They were so soft that they were like paper and I had to keep them cut right down or they would catch on everything! I treated myself to gel nails at the local beauty salon and they look great. Better than my own nails have ever looked! I dont know whether I can afford to keep it up though. It was £25 to start with, then I had to have them filled after about 3 or 4 weeks, then they need redoing a few weeks after that. Might have them done once more and then see if my own nails have improved.
Kris, I enjoyed the retirement party the other day and we are all going out for an Indian at the end of april. Got some Denenhams vouchers so may go for a spend at the weekend.
I had a scan last night to see if the lump at the back of my leg was a Bakers cyst or something to worry about. The Dr said it was a Baker’s cyst so thats a relief! Dont know what they will do about it though as he said they can drain them but they sometimes return.
Take care everyone. Sheila xx
Warning - this is going to turn in to a long post but hope it will be helpful to you.
Having felt lousy since last weekend and not having the fentanyl patch on for 3 days cos of constipation, the pain got really bad on Wed and I was sick still and couldn’t eat. Ended up getting emergency GP out at 6.30pm who after quite a lot of umming and arring, said I had 2 options - painkillers and stay at home or hospital but it would have to be because I was unwell and not for possible spinal cord compression as he had sent one person up for that already (!) and you may get 2 cases every 5 years not in 1 day. I opted for hozzy. Ambulance came and I went into A&E where I had gas and air and then after a couple of blown veins and a cannula eventually getting put in, was given liquid morphine. I had been so agitated and restless - never been that bad before. Anyway, morphine helped loads. Got sent to assessment unit and had x-rays (all clear) and bloods etc. Moved to another bed in unit at 1am as they were bombed out and managed to get sleep in spite of being with some old dears who were a bit confused…
In morning a doc came round and changed meds for bowels etc and said they would ask an onc to come and see me on the ward as I was due to see them that afternoon. An onc duly came, mad as a box of frogs but really lovely - saw him in clinic last time when normal onc was way behind. He altered meds again as he worked out that I would need movicol and docusate to help with the newly prescribed zomorph and oramorph otherwise I would be suffering from what he said the medical term was ’ shitting bricks’!! Had brekkie and lunch then down to oncology to collect next lot of e&e and have denosumab and see registrar in clinic.
Pharmacy had run out of drug and had to get it sent from Barrow (about 50 miles away!) so in the meatime, I saw the reg. Turns out she’s just done and presented a paper on everolimus or as she referred to it - the devil drug! Anyway, she said it can be excellent if tolerated and after discussing se, said I was fine to have next lot and hopefully new pain relief etc would help with se.My platelets, neutraphils, hb etc were all quite a lot improved as well. Apparently, she has seen the main side effects as being mouth ulcers, rash, diarrhoea and tiredness. The great news though is that although I haven’t had a scan yet, the bone blood markers and some others show e&e is working already and there has been quite a large drop in markers - yay, yay, yay!!! The denosumab has probably helped too. Went back to collect e&e and have deno jab then back to ward for collecting other drugs that I eventually got at 5.30. Very long day but escaped!!!
Today, after a good night’s sleep I feel a lot better and am eating virtually normally so am hanging in there. Oh and the even better news is that I can go on hols in a fortnight!!! Some much needed rest and relaxation.
I hope this ‘report’ has helped a lot of you and encourage you to hang in there with me.
Hope you all manage a good Easter weekend - oh and the taste for good chocolate is slowly coming back!!!
Liz xx
Hi Sheila thanks for the info about your nails. Will see if I can find somewhere local and try gel nails.
Hi Liz thanks for the update (and the short one by text - sorry I didn’t get back to you). It makes interesting reading. Glad you’re feeling better you will be baqck on the cake in n o time hopefully.
Have a good weekend everyone - we will be celebrating our 30th Wedding Anniversary on Sunday :o))))
Karen xx
Seem to have the full gambit of se’s back at the moment ulcers/rash/fatigue/nausea with a new one to add.Just wondered if anyone else has had shivering and shaking with freezing cold hands and feet…resorted to hot water bottle.
Congratulations Karenon your 30th Anniversary and enjoy your celebration on Sunday.Trying to get enough energy together for family meal tomorrow and spend some time with my gorgeous grandson…he is 11 weeks old.I feel so guilty I have not been able to help out as he has been really unsettled,and I have also missed seeing him as I have have not had to energy to visit them.Hopeing things will improve when I start rads and ct scan hopefully gives the results I want…it will all be worth it
Happy Easter all xx
Liz just picked up your long report, had got the gist of it from fb and replied to you.Pleased you have the chocolate taste back and appetite also improving.I have lost taste for many things…including chocolate,meat and cake.Maybe I need to upgrade the chocolate. I am due to change to denosumab this month so hoping for good things from it,especially as I get the runs from zometa.
Lynn xx
Lynn,
Thanks for the message on fb. Hope you get to enjoy time with the family. I’m feeling much better so here’s hoping you can pick up the same. Denosumab is so much easier and quicker than zometa and I have had it when I have gone to collect the ever/ex and am in clinic. Long time in oncology but all done with hopefully forthe month then. I bought some of those anti- travel sick wristbands yesterday and have been wearing them to combat any nausea. Forgotten I had them when on first chemo and they worked a treat - may be worth a go for all those with nausea. I got mine from Boots at £8 - more expensive than the ones from cheapo places but better quality so worth it.
It has been snowing a bit here this morning but seems to have stopped for now.
Have a good Easter everyone xxx
Hi Liz, “Blummin Eck” you really went through it didn’t you!! It sounds like you are a bit better now though. I hope so.
I might ask my onc on Tuesday if he has heard it called the devil drug. Thanks for the info. I felt really tired yesterday and had to have a sleep twice but managed to stay up late then and have a couple of glasses of wine! Its worth the se if we get good results and it is good news that your tumor markers have come down.
Karen, have a lovely anniversary on Sunday.
Kris I hope you feel well enough to enjoy your Easter wiith your family.
Lucinda, I hope you fell better today. It’s funny but somedays you feel fine and think you have got over the SE and then they come back! I had a nose bleed last night and they had got much better.
Happy Easter to everyone. XX
Hi Liz
That all sounds horrible. Hope you are feeling a lot better and enjoying some chocolate 
Hi to all other ladies on this thread, hope your SE’s arent too bad and you can all enjoy a Happy Easter.
Nicky x
How are you all doing??? Hope you have all managed to enjoy the Easter break in spite of the bitter cold.
I’m still feeling so much better than last week and think I now have my bowels under control to a bearable level at least. Although the hospital experience was a bit of a fright, I think it was good in that it sorted my pain management and bowels out and I know to take these things as preventative rather than wait til it’s too late! My skin is still itchy all over but as I am used to that with eczema, that’s ok. Hoping we will get away next week and get some sunshine cos that will work wonders all round.
I still haven’t felt nauseous since wearing the wristbands and haven’t had any anti-sick pills either, so am assuming they are the wonder fashion-cum-medical item. Going to get a spare set.
Take care and keep warm. Let us know how you are all managing.
Liz xx
Hi Liz, glad to hear you are so much better after hospital ordeal, You are inspiring me to keep trying with Everolimus, I’m about to start again after 3 weeks off with awful upset stomach. I’m going to Cyprus next weekend yeeah sunshine and am worrying its all going to return, onc is leaving it upto me,when I start again. Am worried if I stay off it too long things will be progressing, but don’t want to be ill on hol. Anyway you take care, stay well. love Kris xxxxxxx
Hello Sheila, hope you had a good Easter and your mouth is OK
Everyone else too, take care xxxxxx Kris
Liz so pleased you are feeling better,I had forgotten about the wristbands…I had worn them all through tax and gave them to my DIL when they went to Peru on honeymoon as she has travel sickness.have not seen them since so will get more from Boot. I do have the rash back all down my right side (odd!) but he itching has stopped since taking the antihistamine.I have my first scan since starting the treatment next Tues (also see rads team same day).
I am getting really jealous with all the looming holidays ( I am going with family and baby grandson to the New Forest in June).Hope you all have a wonderful time and get lots of sun,rest and spoil yourselves.
Lynn xx
hi to all.
Had a good Easter but very tired at times. Apart from that all okay I think. Next scan in 4 weeks!
Dont know if anyone watches Scott and Baily but I really like it and it is filmed locally so we are always trying to recognise places. Last year when it ended, they left you wondering who the mother was of one of them and I thought, BUGGAR! I might not be here next year. BUT I AM! I had mentioned this to my OH and last night he had bought some garlic and corriander prawns and a bottle of champagne to have while we watched it. A nice surprise!!
Hope you have a good holiday Kris and Liz. Dont forget the suncream though as I have heard that you have to be careful in the sun when taking the evorilmus. And fingers crossed that your SE dont come back Kris.
Take care everybody. Love Sheila xx
oh no not another s.e. cant go in the sun. what have you heard. linda may get to meet you next wed at my house. you neednt commit incase you cant make it just turn up 1ish would be great to meet you.
mouth ulcers better, well its more of a sore jaw, ong dept said to take painkillers. worked yesterday and not to bad today though the stomach ache etc back today, what fun it is popping in all these pills.
had c.t. scan yesterday so really hoping wonderful things are going on in me due to this treatment. see cons in 2 weekks. lets hope this is the wonderdrug for ua all. love mags x
Hi Mags,
I think the medication just makes you more sensitive to the sun so it’s advisable to wear sunscreen. Hope you are feeling better now and I hope you get good results from your CT scan.
Don’t know if it’s the beautiful spring sunshine but apart from a slight nosebleed this morning (which is usual),I have NO side effects today!!! Not even tired YET! 
Hope everyone else is okay too. XX
Back in the Spotty Muldoon club,face arms,legs so covered in cream.Huge cheek ulcer making eating painful.The only thing cheering me up today is the sunshine…hope it hangs around until tomorrow and I will go for a ride on my scooter to seafront.Planted some spring plants on the balcony today so now out of energy,looks really cheerful out there.
hope you are all having a lovely weekend. xxxxxxx
Oh Lucinda, you are struggling with your skin, aren’t you? End of week 1 from course 2 for me - have some of those spot/pimple things on my neck and skin is dry and itchy in various patches. Small mouth ulcer appearing but nothing like last time so hope that will be the extent of it again whilst still working at killing the cancer.
It’s been a lovely sunny day here and a bit warmer so that’s promising. Just those little signs of spring make you so much more cheery. I will be taking my spf50 on hols, as is usual. It’s not that you can’t go out in the sun while on ever/ex but that your skin is much more sensitive so you need the sun cream as normal.
Enjoy the rest of your weekends xxxx
Hi everyone, actually been for a walk on hove sea front today, lovely calm sea and lovely and sunny. things seem so much better when the sun shines. mouth much better, tum better, all in all last couple of days have been great, long may it last. talking about spots, does anyone have them on the head under hair, i thought i was going mad but i have had a few, under my hair, so you cant see anything, but they are small and hurt like hell if you touch them. thankfully i havent had a rash, i had a really bad one last year when i was on a trail drug, so i thought i might get it on this, though i suppose there is still time… but my back ache has definetaly gone since taking this drug which is weird as it is in 4 vertebra so it cant cure it, but i am feeling really good. will see week on monday. have a lovely sunny weekend all. mags x
Mags - yes I have had these pimples in my head on and off and only a few but as you say, the hair covers it. Have heard of others who have them too. Great that your backache has gone. x
oh thanks. another s.e. wonder if consultant knows. will mention it when i see him. thanks again. x