@bluesatsuma i saw that you were ill - hope you improve and stay out of hospital xxx
I’m sat here in floods of tears as I just don’t know what to do about pax / doc (or it could be that I have a really heavy period) the locum said I could fight it but I don’t have any fight left in me. Looks like I have to just go along with doceraxel purely because the unit it set up that way . Just can’t believe the oncologist lied to me- I remember now my BCN being at the meeting so I’m calling her tmrrw to see if she remembers anything. Sorry for rant - I’m having a sad day
@epic1 sending you a big virtual hug, don’t apologise for ranting. You have good reason to. Some days are much harder than others and we all need to let it out and have a cry.
I hope you find a resolution with the oncologist and wishing you the best of luck with the next stage.
So sorry to hear this @epic1 this feels really unfair. I have experienced my oncologist on a phone call switching between 2 x scenarios within the course of a conversation (resulting in me having a “but you literally just said the opposite” moment whilst doubting my sanity) so I can somewhat emphasise with the utter frustration. It sounds like you put a spanner in the works having had the private consult, perhaps she even thought there was some scope to choose then has been overruled somewhere else. As we all know it’s all about £££. Wed just rather them be an open book and say sorry we can’t do it or whatever.
Patchy microphone had me laughing hard my nit shampoo experience removed a lot of my hair the cold cap had saved . You have to laugh at these things otherwise you’d end up getting very down.
It’s gone down loads thanks…at one point I convinced myself I had shingles. I didn’t ring the line in the end because honestly their standard of support at the weekend is much lower & I feel bad if I get told to go to a&e & I don’t. I think it makes sense that it could be what they clean it with. None of them cba to write in my book so I can’t check, hoping they keep a record of it somewhere themselves tho so I can check when I go in
I had chemo on Friday and am also having Pegfilgastrim which hasn’t effected me apart from I just feel tired today. I had it yesterday at 11.30am. The nurse did it and then my hubbie will do it going forwards weekly although the nurse thought it would be 3 weekly as your neuts can go up to 40. They were 1.59 on Thursday. If too high then it can delay chemo too. I went for a walk yesterday which hopefully helped as often people have alot of pain but it doesn’t seem to effect me. Same when on Letrozole. Just seems weird that I have no pain!
@epic1 I am so sorry you are so upset. They shouldn’t have told you that then took it back. Ring tomorrow and to bcn. Explain how you feel. With regards to docetaxel - yes I’m ill with it- but most arent. I have had a lot of big cries this week about hospital and feeling ill. I think we are reaching the point where we feel so tired of it all. Sending a big hug. X
I’m so sad to read this, we have enough to deal with without things like this happening. Definitely speak to your BCN if you feel able, but I completely understand you feeling like you just don’t have the energy. Makes me cross that we’re constantly told it is OUR treatment and we should be involved in any decisions made, yet so many in this forum don’t seem to be seeing evidence of that. Big hugs xx
I’ve been told my Docetaxel dose is 180mg i think they work it out on your height and weight? Is that correct?
And im having Zolondronic acid ( Zometa ) with my first dose which I’ll have every 6 months for 3 yrs
So told to expect to have flu like symptoms with that, so first round may be rougher than others
I’m so sorry Sharlou. I know any reassurance is trite - but do remember it affects everyone differently - I really hope you’ll be someone it is a bit kinder to.
Bit of an update from me. I’m on day 5 of cycle 3 (docetaxel, carboplatin) now and am now on three anti-nauseau meds to try and get the nausea under control. They switched one out for another, kept one, and added a third - to try and make sure there weren’t any dodgy interactions right and not risk too much with the side effects of the anti-emetics too. It does finally seeem to be making a difference. I still can’t eat much, but I can sit up in bed and I haven’t actually been sick yet, whereas compared to last round I was sick everyday for about 8 days. One of the new ones is apparently quite strong so my last dose is tomorrow. It’s hard not to be nervous that it’s going to hit in force after that, but I’m feeling cautiously optimistic. I managed to socialise a little bit the last few days - today is just a bed day though. With the dose reduction I had after Cycle 1 my other side effects seem more under control too so whilst I’m still feeling pretty grim, it is definitely more bearable than it has been.
I did also give up on the cold cap which made my chemo day SO much better and I think set me off on the right foot for nausea issues etc. I’m nervous about what happens to my hair now but you ladies are rocking it so I’m reassuring myself that I can too!
@luckyduck1 they have told me they will reduce my first dose of docetaxel to get me through the door!
I have to have zoldranic acid but no one has told me when it will be ? Did the chemo unit tell you ?
Tmrrw is my 3rd EC so 50% way through. They are reducing it by 10% - I didn’t ask them to but they said they can ?
That’s interesting about the zoledronic acid as I’m having that when treatment finishes. I know it helps prevent osteoporosis & spread to bones so I am keen to get it inside me as soon as possible but I thought it was a post treatment thing but I am pre menopausal so maybe that’s it? Soo many differences in how all the different treatments are administered tho right!
Yes they told me i’ll have it at the same time as my 1st Docetaxel on the 11th and it can give flu like symptoms, aches and pains much like dox so my first round might be worse
It’s not been mentioned to me and I have Osteopenia and had cancer twice. Osteopenia was diagnosed before starting Letrozole 6 years ago. My injections have been changed to 5 daily ones as weekly too.
Just caught up after a somewhat rough first week following my second cycle of Docetaxel/cyclophosphamide last Tuesday.
So sorry to hear about understandably upset reg treatment regime and also feel that the whole treatment is such a challenge/rollercoaster- not only physically but also emotionally. So have been crying more too this week - fed up with feeling tired, weak, lots of joint/leg pain, aches, wheezing; Asthma worse and being vulnerable- fear of infection. But managed to stay out of hospital and even a walk with my boys yesterday on my birthday- which was lovely.
insomnia/frequent waking in night is so tiring - every 1-1/2 -2 hours needing a wee. Exhausting- can’t remember a good night sleep.
But getting a bit better since yesterday - just so tired…
thanks - will need to check
zoledronic acid and if I can have it when treatment finishes. Strange how different treatment regimes are…
rosegarden1 glad you managed to get out for walk with your boys on your birthday yesterday take the small victories and sending you belated birthday wishes for yesterday Shi xx
Happy birthday for yesterday @rosegarden1 im glad you got out for a walk.
Just looking at the side effects for zolendronic acid and it sounds like they are just as horrible as Docetaxel!! Im having Adcal too
Oncologist and nurse tried to play it all down but im dreading it. 6 days and counting
Rose 
xx
rosegarden1 glad you managed to get out for walk with your boys on your birthday yesterday 
