My last tumour marker was 28 - the one before was 23 (after 3rd chemo)
When the Onc examined the breast (which is still red although infection has cleared up), he said the tumour measurement was 6 cms (after 3rd chemo it was down to 4.5)
My weight has gone up from 68 k at start of treatment to 73 k today.
My feet, legs, ankles are so swollen I feel like a blown up snow man as generally feeling bloated all round. He gave me some Furosemide 20 mg but said they probably won’t work, so told me to up the steroids??? Really confused about this because I thought steroids caused bloating?
I just don’t think my body can take any more Taxotere, particiularly if its not working anymore - next week I am having scans to clarify the way forward.
Sorry for moan, post chemo and very fed up, and pumped full of steroids!
Hi Peacock
I’ve got Liver secondaries and completed my 8th and last Taxotere in June. I too had loads of swelling due to fluid retention all over my body but especially my face, legs and feet. Couldn’t get my shoes/boots etc on and had to buy wider fit and slightly bigger sizes! It did reduce my tumours though so I was glad I stuck with it. I found it so debilitating and tough to go through. I can only say that it all eases off gradually when the Tax is stopped!!! I’m waiting for CT scan results on Monday to see where I go next - possibly more treatment ( hope not). The weight increase is a problem and I’ve increased like you have. Think its the mixture of steroids and Tax that do it. I didn’t have scans to check how my tumours were doing until after the 5th cycle and then the final 8th cycle. Then I’ve just had more scans to see if the cancer is active or not! The first reduction was 50% then a further 25%. Hopefully if you can tolerate more cycles it will work for you. My onc says he doesn’t take markers as an accurate measurement so when you have CT scans there may be more of an improvement. Trust me I know how you must be feeling with all the bloating etc. Can’t say it gets easier until all the cycles are finished but if it works it’s worth it. Hope this has helped you. Are you past cycle 5 yet for the scans like I was?
Good luck.
Luv Carol
Hi Carol
I’ve just had the 6th cycle. There is no mention of a CT scan, it looks like just an ultrasound next week. So far I’ve had no CT/MRI scans, and the tumour has been measured manually by a ruler so perhaps not so accurate as technology.
I did have ultrasounds after cycle 3 though, so maybe they will compare size next week with those ones.
Thank you for your encouragement, and I hope your swelling goes down quickly in time for your winter boots. I can only wear flip flops at the moment, and none of my jeans or trousers fit me so it looks like I am off to the shops for some baggy, baggy trousers!
Oh Peacock - you didnt tell me any of this ! you are really going through the mill.
Easy for me to say but dont get paranoid about the tumor marker. My specialist said they are a very good indication to what is going on and accurate to 88%. However, you still have the tumor inside you so your marker is going to be up i suppose till you have it out. Mine kept going up one point at a time from 7 (but that was AFTER my lumpectomy and chemo, till it got just over ten. They said that was nothing and that one time it might go to say 15 or 18 and it would get them investigating till it was high all the time.Then 2 days ago my results came through , as you know, and it had dropped to either 7 or 8 cant remember its abit early in the day yet. So, you could be 28 now and the next it could drop to 25. But i suppose until you have your op its always going to be around that mark.
The weight thing i understand as i was always about64 kilos, in less than a year i was 78 or 79 !!! so a massive jump for me and the spec seems more bothered about my weight increase than anything else. She said just EXCERCISE; EXCERCISE AND MORE EXCERSICE, and said it in a way that made me feel very lazy.
No matter how down you are feeling now Peacock, you are going to get through this horrible treatment, just wear big loose clothes and dont bother how you look. When all your treatment is finished you can then go on a diet and EXCERCISE; EXCERSICE and more EXCERSICE, have a facial or two and sort your nails out. Right now you are allowed to look any how you want.
We have more lovely sunshine today, dont know if its down your way too - i hope so, if it is go and get some bricks layed !
love shirl X
Thanks for your cheery message this morning Shirl, I suppose its the “nearly the end of chemo” downer that a lot on here seem to get.
I can’t talk to anyone about it, friends are all too positive and keep saying it’ll be alright, hubby buries his head in the sand and is also the MOST positive person I think I know, and with him I am not allowed to be down or upset! And family, I just don’t want to worry them.
In UK I suppose we could have counselling, but here, in French… I don’t think so my French isn’t that good for complicated matters.
Anyway enjoy your sunshine, yes its lovely here too so my spirits might lift. I just feel I want to shut myself away and talk to no one, see no one and just cry!!
Hi Peacock,
my feet feel like they will burst out of their own skin as i go through the day. Today they are starting swollen so will be very bad tonight, from experience. I see the podiatrist today, so will come back if he gives any useful advice about the feet. My tumour markers are higher than yours and I query this every time. They are known to be unreliable and of no consequence at low levels because people without cancer have them too. They are an indicator that something might be going on at the very high levels. My onc said He wouldn’t take any notice until I hit 100 or so. The markers can even be high because the chemo has found something and is obliterating it. I was told you would expect to find them moving.
Just one cheery thought for you. When the tide goes out and we wee for England/ France think how easily we will shift a lot of weight!!! Lets just all keep chugging along together.
Love
Lily x
Hi Lily
Now there is a thought! Good job the titanic has already sunk LOL.
Good luck with the podiatrist today, just out of interest why wouldn’t your Dr give you tablets for the fluid? Mind you, I really had to beg mine for some. I think Bahons got them quite easily though - strange.
I know what you mean about the counciling-and we dont even have a breast nurse over here do we! These French women must be made of strong stuff thats all i cant think.
When i went for my first chemo, there was a Breton woman of about65-70 having her third session. She was sitting in the chair with her legs swinging and humming and chatting away to the nurses. I was like a big blubering whimp. When she had finished she hopped up and hugging and kissing the nurses and off she went - hubby says she was probly going home now to milk the cows! i am sure he was right. While i slunk off home to bed with a bucket.
When i went in for my 3rd FEC, i sat there all skin and bones (went from 64 down to 58 and i am 5ft 5) with a great big heavy coat on and hat pulled almost over my eyes. I started crying and saying ‘i have come to tell you i cant have todays chemo or anymore’. I have never felt so low and miserable in my life. He asked me if i wanted to talk to a priest!!! so i suppose that was abit of counsiling i could of had. I refused of course and he frog (pardon the pun) marched me into a little private bedroom and got the nurse to come straight away and stayed with me holding my other hand while she got going with the horrible stuff before i could run away.I can honestly say if he hadnt done this for me i wouldnt of had any more chemo than those first 2 sessions. I told my parents and hubby when i was leaving the house that i wasnt having it. They were very suprised when i came home 4 hours later. But obviously glad about it now.
Dont feel pressured to do anything you dont want. If you dont want to smile or talk, just say you dont feel like it and just to bear with you.I think its important to try to explain abit to our other halfs how we feel or they just feel so helpless and they suffer to. It must be terrible to watch your partner or the person you love be like this so thats why i think its important to tell them how you are feeling and just to put up with your moods etc. Then at least they are in the picture.
I never cryed infront of hubby or kids. I just couldnt, and put on a brave face. Then every night i would get in the bath and cry for an hour or so, keeping topping the bath water up when crying became to loud.
Everyone has to find their own way of coping with their fear,sadness and feeling like shit all the time.
At least its a good night on the box tonight. Thats if you like SCD and the X-factor.
Just off to cut the grass, i have just had lunch after getting all my tom plants out of green house, it looks very bare in there now. Hows the house coming along?
Hi Lily, I don’t wish to cause alarm but my tumour markers have never got to 100 and I’ve had bone mets since 2003. My markers were in the early 90’s when I was first diagnosed, I was stage 4 from the onset. My treatment was changed from Arimidex to Aromasin when after nearly 3 years of markers of 20-25 they went into the 30’s. Again I don’t wish to alarm you but I don’t think your onc should let your markers rise to 100 without further investigations. The normal range is up to 35 but most people without active bc have much lower levels…35 is the very top end. I’ve been having monthly and now 3 weekly markers taken since early 2004. My markers are now 40 and I’m hoping they will decrease as that’s quite high for me but Xeloda has not been as effective as hormonal treatments. Yes some women with secondaries have markers in their 1000’s and they are not reliable for all but it’s generally the case that unreliable markers show ‘normal’ when other things are happening. Just to add with my onc keeping a close check on my markers and changing treatments before things get out of control I’ve, so far, had no further spread and feel very well. My Very Best Wishes…x
Hi,
thank you Belinda, that is why I do keep querying them, They only put them in my diary if I ask them to. I am not sure whether people have different normal levels like they do on the other blood counts. He may have been just casually quoting a high figure to try to calm me as I was not happy that they rose at all. The research nurse said that ups can be from the cancer cells being destroyed and so the markers show this? I am slightly confused but will definitely be keeping my eye on them as I get more results on Tuesday but they are always a dose behind for the tumour markers. They said they would check me on every other one, so I write it on the form myself before I go to have the blood taken, to get it tested every time. Thanks for your help and it is good to hear that despite what must have been a really shocking first dx you are chugging along so well. Hope that continues for you. I am still in chemo with rads next before the tablets, so hopefully a lot more cannonballs to fire at this horrid disease.
Peacock the onc squeezed my ankle and said it doesn’t dent so no fluid. He ignored my swollen fingers and toes, so no diuretics. I have not tried the GP yet. So no tidal wave from the side of the channel. I will be watching the news to see if you have affected the tides and ferry crossings!!! LOL
Take care
Lily x