hi , am still around just been very tired lately and feling really low since we changed bone drugs so next time i go it is going in over a longer infusion time . i was on pamidromite now on zometa .
what i wanted to know also is has anyone got really heavy legs on xeloda ? mine are like i have a permanent epidural in them , it is really getting me down as i cant walk far at all , i am staying on xeloda still with megace as he seems to still think i am fine with this at the moment .
anyway i think of you all and read the posts as much as i can and keep up with what everyone is doing but not felt like posting much .
anyway bbl ,
lotsa love Tracy xxxx
Hi Tracy
glad you are still around. I have very heavy legs and I am on pamidronate so maybe now you have changed to zometa it may improve lets hope so.
Hope you feel better soon. This illness is poo isnt it?
Love Debsxxx
debs it really is poo , i find i can hardly walk the stairs now with these legs . do you find this ?
Hi Tracy,
I had my zometa Wednesday and felt O.K., but last night I felt absolutely dreadful (and I’ve been on it nearly 3 years).
I was really cold put my pj’s and dressing gown on and my legs were like lead going up and down the stairs and generally just felt like I was coming down with the flu. I do still have occasionally fluy symptoms but nothing as bad as last night. I wonder if it was the zometa that made my legs feel like that. Feel fine today.
I totally agree about it being poo too!
Hope you feel better soon
Denio x
Hi Tracy
its hard to know what it is I was on capecitabine for nearly 2 yrs no byphos and I was o.k. started pamidronate because my hip is in a bad way but my legs feel like they have been to the pub without me. I have to hold on to the banister as it feels like my knee would give way. I was giving extra time before I complained but think I will mention it next time Im at the clinic.
Hope you are having a nice weekend.
Denio I had zometa about 3 yrs ago but I had a bad reaction so was not covered by aby byphos for the last 3 yrs, think that was a big mistake as my bones are in a poor stae now.
Love Debsxxx
Hi Tracy
Sorry to hear that you are having a bit of a tough time at the moment, but nice to see you post and let us know how u are going, as we worry about our cyber friends when we dont hear from them for a while.
Alas, I cant help u with your question, but hopefully debs and others have/will help you along the way.
Take care and chat soon
Love
Dawn
xx
Hello Denio Tracy and all
I had my zometa on weds and I told them when I was there that i had no reactions to it now, tolerated ot well and was fine - well thursday night and friday were awful I could hardly move, i was freezing and I had to come home from work on friday to go to bed, I was tired and heavy legged in a way I had not felt before,
I feel reasonable now…what was different about weds, was this - I didnt drink any water before or during as the lady who brings the water around was late and i only had a cup of tea at the end, People have mentioned this before and now i am going to take it seriously, (maybe it will help)
take care everyone
cathy
i am heavy legged every day but it is worse on my week off xeloda , everything seems worse on my week off infact ., i cant seem to do anything in the house as i feel my legs are going to give in . its driving me nuts all i want to do is lie down these days.
Tracy xx
Hi Tracy (and others)
Good to see you posting, Tracy, even if things are not going well for you. I am on xeloda too and my legs sometimes feel tired but think it is more to do with walking in a funny way because of the sore feet!! LOL. So think it is more likely to be the zometa. Interesting what you said about it, Cathy - keep drinking the water would seem to be the advice!
Would agree with you though, Tracy, about everything being worse on the week off from xeloda. I mentioned this to my onc and he explained that that would be the case as at the beginning of that week, the drugs are at their highest concentration in the body after 2 weeks dosage.
Take care everyone
Kay xx
well i cant cope much more i feel i am at the edge with these legs and tiredness , am going to tell them tomorrow i want to stop xeloda . i am in tears alot and my legs are disabling me , surely this cant be right ? its the holidays and i can hardly do a thing with my daughter , it stinks .
no idea if its working anyway . i am desperate i dont know where to turn .
Oh Tracy,
I’m so sad to hear how you are suffering. I think you’re right to ask them about it tomorrow - it sounds like things have reached a ridiculous level, and if your quality of life is so affected by it, something has to be done. Like you say, it’s the holidays and you really want to spend some quality time with your daughter now.
I really hope they come up with some sort of solution. Be strong and hold your corner (not easy when you’re feeling low)
Big hug to strengthen you
((Tracy))
love Jacquie x
Tracy
I am sorry to read this I really feel for you on this - I agree you must bring it up tomorrow and see of they can help in some way . I will be thinking of you tomorrow and hope that they can come up with something. The heavy leg thing I can really relate to from taxotere - did you ever really get over it from that ? or did it it start and get worse with xeloda.?
I think its really harder for us in the summer - kids are out of school , they want to do things and we have this crappy illness that drags us down. It is so hard when you are tired to cope physically and emotionally.
Sending you a hug and thinking of you.
love
cathy
Hi Tracy
So sorry to hear things are going from bad to worse for you - hope that you have managed to talk to someone today and that they have come up with some kind of help for you.
Sending you lots of gentle hugs
Kay x
Just wondering how you got on today and sending another hug…
Jacquie xx
Hi Tracey
Just wondering how you are, I really feel for you its horrible when you just want to be fit for your family. I hope you get some good advice from your Onc.
Sending you a big hug.
Beli x