The heavy/fuzzy headed feeling could be the anti emetics you are having. I got it (and headaches) while on metroclopramide and omandestron (not sure I spelt that at all right) during gemcarbo. I was inevitably scared about brain mets but touch wood the feeling went when I cut down on anti emetics.
best wishes to you both Julie and Jak.
Jane
Hi Jules
Glad you are ok… although… i’m sorry that you have had to shave your hair off… … i am still clinging on to mine through the cold cap… It’s still thinning but i’ll let you know how mine does…
I do suffer from the dizzyness/fuzzy headed feeeling and headaches and have done since i started this chemo. I also think JaneRA is right… it could be the anti-emetics. Particulary the Ondansetron. Reason i say this is, that i have cut that one out as i found i didnt need it, i took some domperidone instead and found this better.
have a word with your team…i’m sure they wont want you to suffer and may try you on something else.
Are you back for more treatment this week??
i’m back on monday for my bloods and to see the doc and then treatment on tuesday…
keep you posted and likewise…
Love Jack
xxxxxxxxxxxxxxxxxxxxxx
Hiya Jak,
How are you?
Hope your bloods are ok and your able to have your treatment tomorrow?
Ive got my bloods tomorrow and seeing Onc then my treatment on Weds (which is gonna be a looooooong day cos its my Taxol/Gem day)
I think it is deffo the treatment that is making me feel funny in the head (?!!!) as I have felt quite clear headed since about Tues/weds last week. So after weds im gonna be funny headed again for the next couple of weeks.
Its an awful feeling. I kinda feel like ive had a drink and its going to my head if that makes sense? Only thing is I dont get giddy with it!!! :o)
Jane…how are you doing? I hope your well?
I hope you both keep me posted with how you are doing.
Love to you both…
Jules
X X X
Hiya Jak,
Are you ok? Not heard from you for a few days and im hoping there isn’t anything wrong?
Let me know your ok
Jules
X X
Hi Ya Jules
i’m doing ok, been really tired though but apart from that just the usual aches and pains and shakes… i have got the fuzzy head like a hangover, it horrible…
been drinking lots of squash to try and flush it out of my system again…
thanks for asking about me… ive got more bloods again on monday and chemo on tuesday… is that the same for you??
speak to you later
take care
Jack
xxx
Hiya Jack,
Good to hear from you, you had me worried…
Great this chemo milarkey innit?! NOT! I started to not feel well yesterday. Same symptoms as when I was poorly 3 weeks ago (3rd day from chemo). Fluey, headachey, very fast heartrate, highish temp, twinges in my joints and in my ribcage. I felt like I didnt know what to or where to put myself.
Went to bed early last night but didnt sleep too well. Not feeling 100% today. Ive had my pj’s & dressing gown on all day.
Hopefully this will only last a couple of days as it did last time?
Im supposed to have my next Gem on Weds but delayed it by a day as its my OH’s grandads funeral (he died last weekend), so will get my bloods done on weds morn rather than tues.
I hope you start feeling better soon…keep smiling chuck. X X X X
hi,
I’m on this combination of chemo too. I just wanted to ask, do you have anti sickness drugs before the day 8 top up of gemcitabine?
I was told they weren’t necessary then was horrendously ill, it was worse than the initial treatment. Obviously I will demand them next time but it would be interesting to know if most people have them?
Thanks
Hi polly 495
I have anti sickness drugs given to me IV before they give me the bag of gemcitbine. I have ondansetron. I am usually sent home with 3 days worth of tablets too .
I would not put up with feeling sick… no one should have to suffer.
Tell them how poorly you were last time and demand they give them to you. dont take no for an answer.
hope you go on ok
Jackie
x
Hi Jules
hope you are feeling better now, sorry to hear you felt unwell after your last chemo.
i havent felt too bad, think ive picked up a bit of a chest infection as i’m coughing a bit and feels like i have something on my chest. I’m also getting nosebleeds everyday and they happen 4-5 times a day.
I will have to tell them tomorrow when i see the doctor after having my bloods done.
Sorry to hear you have a funeral to go to this week
let me know hw you get on with chemo
Love Jack
xxxxx
Hi Jackie,
Thanks so much for the reply I will definitely insist on more help next time.
Luckily I’m feeling much better now and enjoying a week away with my family.
x
Hiya Jackie,
How are you doing? Did you mention your chest infection & nose bleeds to doc?
I hope your ok now?
Im not feeling too bad thanks. I only seem to feel a bit ill on days 3 & 4 after my Taxol combo.
Ive found that this time round I haven’t got the terribly itchy legs like last time, this time ive got an itchy head which has come out in loads of red spots that are quite painful. I thought it was follicalitis as the syptoms sounded the same when I googled it. Saw a doc when I went for my Gem last week and he said its just a reaction to the chemo & gave me some E45 cream & piriton tablets. Gotta admit its calmed down but that could be because the chemo is filtering out of my system??? Will see what happens with next weeks chemo…
So, im determined to enjoy my weeks break from the dreaded stuff!
This will be my 3rd cycle of this combo and my Onc had said they will scan me after my 3rd to see if its working for me. Im pooping myself I can tell you!..im scared to death of finding out. I will be gutted if its not working…
Polly, like Jackie I have anti sickness stuff (and steroid) given to me via I.V just before im given my Gemcitabine top up, plus I have a pack of tablets at home to take if and when I feel nauseous.
They don’t want people to suffer during treatment so mention it to your medical team and they should give you something for it.
Let me know how you both are getting on?
Julie X X
Hi Julie,
Thanks for letting me know about your anti-sickness stuff, I will feel empowered demanding better treatment knowing it is what others have. I will be going for my 3rd cycle next wednesday. It does feel good to enjoy the week off when it is all cleared out of the system.
I am just starting to lose my hair so have shaved it off, how is yours doing? The red spots sound annoying are they better now?
x
Hi Julie & Polly
Sorry i should of been on and posted before now… but had a really busy week…
I didnt get my chemo this week, my bloods were too low… I’m neutropenic. My Neutrophils were 0.60 and my white cells were 1.4 so they wouldnt give me the chemo. They said to keep an eye on my temperature and to let them know if it went above 38 degrees. i have to go back tomorrow to have my bloods re tested again. They said i may have some GCSF injections with this chemo to boost my counts as it will no doubt happen again as this is the 2nd time on this chemo regime. I did mention my chest infection to the doctor and the nose bleeds, he said the nose bleeds were normal and to keep an eye on them if they get worse to let them know, as for the chest infection, he listened to my chest and said it didnt sound as if it was on my chest so he wasnt worried…
Julie - Those red spots sound nasty… i have read that these chemos can give you a rash, hope they clear up fast. I totally get where you are coming from with regards to being scared waiting for scan results. I have had so many… i physically tremble when i sit there waiting for mine. Its just horrid, i’m one of these people who cant take bad news and i cry everytime my oncologist gives me bad news. so i’m the same… i’m afraid… i really really want this chemo to work for me and of course you. I will keep everything crossed for us both. Do let me know how you get on as you will have yours before me.
Polly - sorry to hear that you have had to shave your hair off. Its awful isnt it? Have you lost your hair before with any other chemos? Have you got a wig or any head scarfs? I lost my hair twice with two other chemos i had, so i didnt fancy a third time so i opted for the cold cap this time and (touchwood) its working, i havent lost my hair, it thins slightly a couple of days after my infusion but after that it seems to stop. Hope you manage to get the anti sickness tablets sorted on wednesday.
anyway… i will go now… i’ll keep you posted on my bloods tomorrow… keep me posted on you too…
take care
Love Jackie
xx
Hi Jackie,
I saw doc today and they said gem doesn’t normally cause sickness so they don’t automatically prescribe anything but of course i insisted that i must have it next time. I find it’s all bearable if they get the anti sickness right.
My hair is very short but coming out really fast now, especially in the shower, it’s gross so I fancy going for a total shave. It doesn’t bother me being bald but I’m hoping all my eye lashes and brows don’t go completely. My sister got some lovely spotty scarves for me and my husband chose a couple of lovely hats in monsoon.
I lost my hair when i had fec 3 years ago. You’re brave going for the cold cap, I tried it first time round at doc’s insistence but it felt like a form of torture.
If this is your third time on chemo has you cancer come back 3 times? My chemo seems to be working but I’m so scared of it coming back again, my daughters are only 7.
It’s my 3rd chemo tomorrow, hopefully it might be a bit quicker than the last one, i didn’t get home till nearly midnight! After having a bad reaction the first time I was scared to let them speed it up but I hadn’t realised just how slow it was going.
Hope you ok and Julie
xx
Hi Polly & Julie
Just to let you know, i didnt get my chemo on Tuesday, this was because my bloods were not quite right still and i had been feeling poorly for most of the week so they decided to skip this week and start a new cycle with possible GCSF injections.
Not sure if the cold cap is working now… my hair seems to be coming out more and more this week… feels thinner to me… Ive fallen over 3 times this week too ( dont know how - just lost my balance) so i feel really bruised… feel like ive been to the gym when you havent been for years… i ache… i fell on both sides of my body and put my arms out to save me so they feel really pulled… especially the surgery side…
polly hope you are not feeling sick after your Gemcitibine… let us know…
Julie… how are you doing??
take care
Love Jack
xxx
Hi Jackie,
I’m so sorry it sounds like you’re having a rubbish time, I’m thinking of you and really hope you are feeling better soon.
Luckily I was given antisickness stuff before and after the gem this time so hurray i wasn’t sick! it’s been much easier to cope with this time although my haemaglobin is low. They suggested a transfusion but i’m feeling ok so haven’t had one for the time being.
I even got out to a gig with my husband last night. We went to see Richard Hawley in Holmfirth and I was shocked and stunned when a beautiful song was dedicated to us! I couldn’t stop crying it was so lovely. my husband had been swapping messages with Richard on his forum, such a star with such a warm heart, I’m a bigger fan than ever now. Treats are the best for coping with this I find!
Feel strong Jackie,
How are you Julie!
xxxx
Hiya Jackie & Polly,
How are you both?
Jackie, im sorry to hear that you had not been too well. I hope your feeling better and have recovered from the falling incidents? Your on your chemo break this week aren’t you? (I can’t remember if you have your break the same week as I do?)
Polly, im glad to hear that you have got the anti sickness drugs and that you didnt suffer this time round. Yayyyyy!!
(ps…do you mind me asking where abouts you live? With you mentioning you went to a gig in Holmfirth, im thinking you must be somewhere (ish) near me? Im in Bradford)
I had a head & body ct scan today. Have an appoinment with Onc tomorrow for the results. Im really really pooping myself. I am hoping to god that for once during this whole cancer cr*p I have some kind of good news.
Let me know how you are both getting on?
Julie
X X
Hi julie & polly
I had my cycle 3 - day 8 treatment on tuesday - my dates are all over now as i had to have 2 weeks off to wait for my bloods to recover on my last cycle. I dont feel too bad so far, they have given me GCSF injections now to support my bloods and so far ive been ok. Ive had no more falls… think i was just very clumsy, over fatigued and my bloods were low?
My hair is still thinning although i can disguise the fact its falling out when i’m styling it, i dont think its going to last out for the whole of the treatment… we’ll see. Not the end of the world. Just really want this treatment to work.
Julie - why have you had to have a scan of your head and body scan? Are you in pain or having any symptoms? Please let us know how you get on - i am thinking of you.
polly - sounds like you are julie live near to each other, isn’t Holmfirth where they film last of the summer wine? (I live in Stafford by the way) did you have to have the blood transfusion in the end?
well… i best go and get up out of bed… things to do…
speak to you later… take care
love jack
xxx
Hiya,
Jackie, im so pleased that you are feeling better. I keep logging on here to see if you have put any updates on.
I know you didnt want your hair to fall out and thats why you were using the cap, but as you say its not the end of the world.
As long as the treatment works its a small price to pay…well thats what I tell myself anyway! :o)
I seem to have different side effects every time I have my chemo! I think its the Gem thats doing it?
Firstly it was the intense itchy rash on my legs, then the itchy painful spots on my head. This time round its a spotty head (again), spots on my face, chest and back. But if thats as bad as it gets well thats fine by me.
I had the scan as ive now had 3 cycles of chemo and am half way through so it was to see if its working for me.
The head scan was due to me having a lot of headaches lately, I was really worried that I had brain mets.
I went for my results yesterday. Saying I was scared to death is an understatement.
All morning I was shaking, had bad butterflies and felt sick. Didnt help either that clinic was running late as usual, so I was sat there for 1 hour and 40 minutes pooping myself.
Well, eventually got my results.
Head scan was ok, no sign of spread to the brain (PHEW!), body scan was ok, no sign of spread elsewhere.
My liver is looking better. The cancer has slightly shrunk. Not drastically but its shrunk non the less so its heading in the right direction. My rib is looking the same but Onc said that was expected as its the bone.
I felt like I was going to pass out with relief. That was probably one of the scariest times I have ever experienced.
No doubt I will feel like that again when I have my next scan in 3 months (and every other 3 months there after?!)
So, we carry on as we are with the chemo.
Polly, I hope things are going ok for you?..let us know how you are?
X X
Julie
Thanks for posting about your results so fast… i am so pleased for you!!! what great news!!! i bet you are so relieved now… i know what you mean by feeling scared before going for your results… its the worst feeling in the world - i find… my legs always feel like they are going to buckle underneath me when they call my name out… it made it worse for you with the 1 hour and 40minute wait before… thats torture… anyway… well worth the wait eh??
make sure you celebrate and raise a glass on your week off!!!
Lets hope this regime is the one to kick mine and polly’s cancer’s butt too!!
So pleased for you again julie…
Love jackie
xxx