Oh Paula! What a worry about your little boy! I so hope he’s recovering well - is he at home now? I feel for you and your husband! Best wishes to you all!
My appointment is at 2.45 tomorrow afternoon … will let you know how it goes. I’m anxious, but keen to get in there and get started now so that whatever it’s like, I’m getting on with it!!
Take care of yourself!
Gill xx
Hi Gill
Yes he is home and doing fine. They reckon he has an upper respiratory virus and perhaps the rash was from couhing hard or being sick but thankfully he is well and just sleeping a bit better, think he is trying to catch up as we all are.
Good luck tomorrow. You will be fine. I am doing ok just tired, washed out, no horrible taste in mouth yet. Bit of indigestion feeling but thats it so far !!!
Thank you for your wishes, sending some right back at you.!!
Take care
P xx
Hi Paula
I’m glad your little boy is home and doing fine! Phew!
And for me, so far, so good. I walked home and stopped at some shops and a cafe. Here’s hoping that things will remain like this!! I’m pleased you’re doing okay too!
Like you then, one down and three to go!
Gill x
Hi Gill
Good one I hope it all goes ok over the next few days.Today I feel bit more normal as yesterday I felt very rough. Just hard to explain except not feeling myself.
Right on with chores…chat soon keep well
P x
Hi Paula
Sorry to hear you were feeling rough yesterday - it’s hard to predict what we’ll be feeling isn’t it!
For me so far it’s okay. I feel a bit tired, but nothing too bad. I’ve not felt at all sick or suffered from nausea and haven’t fortunately got a bad taste in my mouth. Fingers cross things remain this way.
I had my injection today which was fine … now just see what each day brings.
I found the process of having the chemotherapy really positive yesterday. The staff were lovely - very caring. It was all much quicker than I thought it would be and so nice to be able to sit and talk. My sister was with me and we just nattered etc. I was petrified before going in, but very relieved afterwards!
The other thing I found amazing was that I didn’t just plop down when I got home. I felt much better than I had anticipated. We had some food and watched a DVD and then other bits on TV. It felt like a reasonably normal evening except for me having to work out which anti-sickness tablets to take when!!
I hope more than anything that things continue positively. The best thing as far as I’m concerned is being on this clinical trial - it speeds up the process thank goodness!!
Gill x
Hello all 4th arm tact2s,
Tomorrow is second epi. Good luck to you all and keep well
Rach xxxxx
Hi Rach
How are you doing sweetie? I had 2nd Epi on thursday. Felt rough all weekend and can’t sleep and have now shaved of the hair as it was coming out all over the place. I now have a GI Jane look.!!!Also have sticky eyes…so attractive huh !!!
Anyway let us know how you are going. Good luck
P xxxxxx
Hi
I am hopefully having my last Epi on friday and I am soooo glad to be coming to the end of it. However coming to the end of Epi only brings some anxiety about what to expect from the tablets.
It would be great if we could gather some info on how people have been on the tablet leg of the trial. what makes the taking of them easier do they effect sleep and such things
I have been relatively lucky with side effects although Epi No 3 was the hardest and I was completely whacked for nearly a week. Not looking forward to No 4 but cant wait to get it over with.
I gather from Lindyloo that the hair starts to grow back when Epi stops too. How long after the actual treatment does this start does anyone know as I have still got an almost full covering although it is thin and a bit patchy. (getting more so by the day).
Thanks
Sarah
Hello ladies, Second epi was a bit of a performance as getting the cannula in was difficult. My veins were good but I was so anxious. I am ok at the moment - 5 hours after it.
Rach
Hi All
Hey Rach - you and I are at the exact same point. I had my second epi this afternoon. I requested that they didn’t use my hand for the canula which they agreed to. Instead they used the back of my wrist which was so much better. Last time I was bruised for several days afterwards whereas this time I had no pain at all.
Sarah, it’s great that you’ve almost reached the end of the epi, but I understand what you mean about the anxiety regards the tablets. I feel the same as you. I’m going to be asking my clinical trials nurse some further questions regards what to expect - we’ve set a time for me to do this. I would love more info though from those who’ve experienced the Xeloda.
One tip I have gained is that if anyone gets the hand/foot syndrome, a good cream to use is Udderly Smooth. I think it has to be bought online. I’ve not gone searching for it yet but will do. I asked my clinical trials nurse about it and she confirmed it’s worth getting.
Good to be talking to all of you!
Gill x
Hi ladies
I have just put up a thread in the finished treatment section just in case anyone had the capacetabine in there…!!! Its got to be better than this Epi…!!!
Hope your’e not doing too bad. I am of to my bed with a nice sleeping pill…those steroids have kept me awake for 3 nights…!!
need those zzzz’sssssss
Night all
P xxx
Hi Paula
Thanks for starting that thread! Good stuff!
Hope you’ve managed to start catching up on some sleep!
Gill x
Hi Gill
Yes the tablet did help…how are you? How was monday?
Still need more sleep so will be bed early again tonight…whoo hoooo
P x
Hi Paula
I’m pleased the tablet helped and hope you’re beginning to feel better.
As for me, Monday was fine. Once again I went shopping afterwards and walked all the way home. It was great to get some air and revive myself. Tuesday was good … just a bit tired. Today is the day when I’m feeling it most. I’m pretty tired and a bit spaced out again. It was the Wednesday that it kicked in last time, so this seems to be the pattern for me. On that basis I should be much better again tomorrow.
The joys of it all!!!
Gill x
Hi all, I always find i am ok after epi on the day I have it and one day after then the tiredness sets in. But as yet I have had no nausea this time which is good. The steroids were reduced this time so not so bad mentally this time. Gill, you too have spaced out wednesdays too.
Rachy
Hello ladies, 3rd epi done, one more to go on 12th May. Hooray!!! Then xeloda which I have heard is easier to deal with. Took ages to have epi as my appointment ran over lunch time and pharmacy was shut. Just usual epi tiredness today.
Hope everyone is keeping well.
Rach xx
Hi Ladies
I know that feeling…one more Epi to go. Found this one more tiring even to point that hubby had day of work so I could sleep. Those meds keep me awake.
Then comes the low mood feeling…anyone else get that. Another question does anyone get any side effects from GCSF injection?achey bones or anything?
Well not not to go for all of us…
keep well and chat soon
P xx
I did get aching legs from gcfs the first time i had it. Very painful ! Low mood for a week or so then better. Roll on end of May so no more epi !!!
Hi Paula and Rach
Am I glad there’s only one more Epi! I’ve found this time that it’s taken longer to recover - 4 days instead of 3. I’m still a bit spaced out but that should go tomorrow hopefully.
Yes, I’ve had some achiness which could be from the G-CSF. The first cycle it ran down my back for a couple of days prompting me to see my osteopath. When it did the same last cycle I saw the pattern and mentioned this at the hospital. I guess I can expect this again either Weds/Thurs this coming week.
I’m certainly getting fed up with this now. I want it to end and have some normal life!!
We’re almost there …!!
Gill x
Hi Gill, I am finding my recovery is taking longer this time. Yes!!! normal life back please , am fed up with poking, prodding, needles and feeling sick.
rach