I am getting a Ct Scan tomorrow and I am more nervous that normal, because I am on a trial I have to get one done every 6 weeks - I think I am just terrified that the Xeloda is not working because they reduced my dose so severely. I just don’t think I could take so quickly another chemo scored off the list of choices.
I was diagnosed on February and was given Taxotere, the oncologist said that she expected more out of the taxotere and hoped to put it into another total remission however it didn’t come close and after 6 the tumours started to grow again.
I have a lymph node in my neck that is like a pea and I keep feeling it trying to see if I think it has grown or not, it’s terrible, I know I should get a grip because at the end of the day it won’t change anything for me. I just find it such a horrible experience I hate it. Since my 2 week stay in hospital when I was used like a pin cushion (they tried to get a cannula in my feet and everything before eventually putting a line in my neck) I have started to fear needles again because my veins ar rubbish now.
I can’t get anything like a hickman line put in because i am on table form Xeloda and the CT scan still requires a cannula.
End of rant will be fine once scan is done and then see my oncologist on Monday which seems like forever.
I know how horrible it is having lumps you can feel…I have several in my neck and above my shoulder and its hard to keep feeling them and checking their size.
Hope they get the cannula in. I’ve had awful vein problems…at my last CT they couldn’t get a line in so I had to have the scan without the injection which makes it less accurate.
hi im having regular ct scans for liver secondaries and i hate it when they cant get the canula in , i usually get sent up to the oncology ward where they try for a while to insert one and it dosnt always work ,the last 2 scans ive not had the dye in and im reallt worried that its not an accurate reading .due another one next month and as you can te;ll im dreading it . do hope all works out in your case .take care lynn x
Wishing you all the best for your CT scan. I can really relate to you, Diane, as my veins had apparently “collapsed” when I had a CT scan recently, it’s such an awful feeling when the nurse is poking around under your skin for a vein, I try to zone out and think of something totally different.
Also I have a cancerous lymph node under my arm that I can’t stop feeling for size, I have to limit myself to one feel a day!
Hi Diane
Wanted to wish you luck tomorrow with scan, hope all goes well. I’ve got a Hickman line but as you say you still need a canula for CTs. I try to focus on something while they’re trying to get it in - like a holiday or something that you’ve really enjoyed. Know it’s difficult and sympathise with you. I’ve got liver secondaries and have regular scans so I’ve tried to just accept that that’s how it’s gonna be. Sometimes ‘willing’ it to work first time seems to work. (Don’t know how!! LOL) Not easy. Best of luck.
Carol x
I know where you are coming from with the lump in your neck I have one too and I am always feeling it to see if it is getting any bigger. My last CT scan they couldn’t get a line in for the contrast and my liver mets didn’t show up very clearly so I am also worried that something may have been missed.
Lets hope that they can get the line in for you and good luck with your scan
Just wanted to wish u luck with your scan tomorrow. They are awful things to go through and every time I am filled with dread and fear of the what ifs.
Hope the cannula goes in first time, and will be thinking of you. I had one on 1st September and remember how I was feeling the day before. So good luck and remember we are all there with you in spirit.
I had one last week, couldn’t get any veins in my ‘good’ arm or hand as chemo has shot them to pieces. Had to use the ‘bad’ arm but they seemed to know what they were doing and got it in 1st time. Maybe plump up your veins by drinking loads of water for the rest of today? My bcn’s suggested that but I know it won’t help tomorrow with the no drinking/eating rule before the scan. Hope it shows a good result when you get them back. I go tomorrow to see what 6 x FEC have done to my secondaries, I’m OK at the moment but will probably be very worried tomorrow morning.
Take care and I hope all goes well.
Nicky x
Good Luck with your scan Diane. I always get a cannula put in by the chemo unit and have had scans without the contrast aswell. I often wonder how blood gets round my body at all!
Best of luck for tomorrow Diane, I think I might get my bone scan results and dreading it as have had lots of pains back ribs leg etc, I think I’m falling apart.
I hope you had a great holiday, I am off to Fuertoventura (sorry if that’s the wrong spelling) on Wednesday and really can’t wait the whole family could really do with the holiday. I see my onc on Monday but she says no matter what it can wait a week until I get back from holiday. I’m not really looking for shrinkage because they reduced my dose by half so if it stays the same as the last scan I’ll be happy. They are upping my dose by a little each cycle.
The onc says that because of my reaction to the xedola the guidelines says that i shouldn’t have been given it again however due to the 48% shrinkage she says she knew she wouldn’t get away with that with me and that she was willing to give a try on a lower dose.
I’ve fine with that she reduced it to 1000 and the increased it to 1300 twice a day, I don’t know what she will do on Monday given that I am going away. Fingers crossed everything goes well, if doesn’t then it’s onto the sutent, turning yellow and having stripey hair! (circular stripes round the head not up and down!) strange eh!
Thanks very much, although I’ve not been very well since Friday, this Xeloda is palying havoc with me! They reduced my dose to 1000 twice per day which I was fine on, then they increased it to 1300 twice a day and my blood is all over the place today again. They are going to try 1150, I just hope that’s enough to keep the cancer at bay, but if it’s not then that’s that because I really can’t cope with a higher dose.
Fortunately today they have organised for me to go in tomorrow and get 2 bags of blood which will make me better in time for my holiday. I have literally slept for 3 days, I’ve done no packing or anything. Also I’m not taking the Xeloda again until I return and they can check my bloods so that’s good it means I’ll feel good on holiday. The stomach cramps I’ve been getting are unbelievable. The scan results today showed that there had been no change which I’m really pleased about because they had reduced my dose so much.
I’m continuing my fight for co-payment I’ve reached the Scotsmans Sunday paper which is called Scotland on Sunday but the people that read that are different audience for them that read the Sunday Post (more my type of paper). I’ve also been back on the telly.
How are you doing anyway, Hows the treatment going, hope you are well.
Hi Diane,
health wise I picked up a cold and I feel like s…t its a drippy nose and tickly throat but it has been really hard work. Just goes to show what we cant tolerate when we have this disease. We went to Gerona and I was enjoying long walks in the dry climate so my bones were really happy and then wham!
We have been doing a makeover in the bedroom roccoco (spelling?) style so very gold and over the top! We will move in tonight. Our gay friends came round last night and had a look they said “Its very camp” so hope it does not put hubby off I though stylish and sexy.
Good news that even though you are on a reduced dose it is still working for you lets hope and pray it continues for years to come.
I have not done much on the co-payment front with all the banks going belly up Mr Brown has his hands full, but he did say October so we may hear soon. The BBC rang but we were going away and it was a political talk show I got hold of a young woman who is on aavstin and the NHS have made her pay for all her treatment. Her little girl started school last week and she was able to walk her there for her first day, without avastin she would not have been able to do that. She is not having treatment at the moment so she feels really lucky to be alive.
I know what you mean about packing it took me twice as long as before I was ill but I did it and had a good time away so I hope you allhave a brilliant time together in the sunshine.