There are only a few thousand taking Tepotinib in the UK, and I am not sure the GP understands it. They stopped the water pills to help with something else, and my weight went up 12 pounds in 3 weeks. I wish he would listen to the oncology consultant.
That looks miserable. I am trying to say something useful, but can think of nothing useful to say. Dragging around 12 pounds ds of fluid in your extremities must feel like dragging weights. I am sorry.
'kin 'ell that looks very uncomfortable..... i am annoyed at my swollen knee, ankle, foot, which goes purple and swells every time i stand up (this is with having to have it elevated to facilitate healing of my tibia) but it's not a patch on these pics..... just looking at 'em is making my ankles feel hot..... hope you can get some respite/rest as soon as possible..... be well!!
I have furosemide water pills, but they only help a bit. This is a side effect of tepotinib and some have to stop because of it. When you stop the tumours start to grow again.
I'm so sorry you're dealing with this. As the others mentioned, maybe a medication to treat the oedema will help. Or compression socks? My brother used those when he had swelling in one of his legs, a side-effect of cancer treatment from years ago.
I am glad it is not as painful as it looks, but it must still be extremely uncomfortable and make everything you want to so so much more difficult, even the most banal things as just getting up in the morning.
Yes, it is the breathlessness caused by the fluid in the chest that is most difficult. I am often up having breakfast before 7.00, but I am doing well to be fully up by 10.30. Everything takes so long.
That must be so miserable. My father got odema following cancer treatment and a physiotherapist showed Mum and me how to do odema massage (its a remarkably light touch) and that helped his situation somewhat.
Thank you. It may be worth looking into that, but at its worst almost any movement has me gasping for breath, so even walking to the end of the garden can be hard. Also, breathing heavily can bring on seizures. So I don't know if anything there would help.
I'm sorry you have to deal with this. I can't imagine the many problems it must cause for you. I admire your ability to put up with it. I'd like to think a new treatment for your cancer could soon be found so you could safely stop the pills. At least we can hope. You're in my thoughts.
This is general oedema caused by the pills - something to do with albumin levels - rather than lymphoedema. It's not actually painful, but greathing can be difficult.
I mentioned that I was dealing with oedema caused by anti-hypertension medication but my issue has been so insignificant compared with what you have been battling Tasker. As the old hymn goes: "Fight the good fight with all thy might!"...the lines that follow that are dubious.
I welcome comments and hope to respond within a day or two, but my condition is making this increasingly difficult. Some days I might not look here at all. Also please note that comments on posts over 5 days old will not appear until they have been moderated.
So sorry. All medication has its side effects. We are dammed if we take it and dammed if we don't. Does your GP recommend water tablets perhaps?
ReplyDeleteThere are only a few thousand taking Tepotinib in the UK, and I am not sure the GP understands it. They stopped the water pills to help with something else, and my weight went up 12 pounds in 3 weeks. I wish he would listen to the oncology consultant.
DeleteThat looks so painful. Good to see you've got your legs up - that should help a bit.
ReplyDeleteSurprisingly it does not hurt at all. Legs up helps but inactivity doesn't.
DeleteThat looks miserable. I am trying to say something useful, but can think of nothing useful to say. Dragging around 12 pounds ds of fluid in your extremities must feel like dragging weights. I am sorry.
ReplyDeleteThe12 pounds was additional to the estimated 14 I already had. I have to put up with it. There's no alternative.
DeleteThere is nothing much any of us can say but feel terrible for you. I hope it gets better. You have a brave heart.
ReplyDeleteIt's impressive, though.
DeleteSo sorry you're dealing with this. I wish you some relief.
ReplyDeleteThank you, and to all other sympathisers.
Delete'kin 'ell that looks very uncomfortable..... i am annoyed at my swollen knee, ankle, foot, which goes purple and swells every time i stand up (this is with having to have it elevated to facilitate healing of my tibia) but it's not a patch on these pics..... just looking at 'em is making my ankles feel hot..... hope you can get some respite/rest as soon as possible..... be well!!
ReplyDeleteThe hot weather does not help. I seem to remember it went up a lot last summer.
DeleteMy friend takes a water pill which seems to help her swelling. Hope you get relief soon. Sorry the doctor didn't seem more helpful.
ReplyDeleteI have furosemide water pills, but they only help a bit. This is a side effect of tepotinib and some have to stop because of it. When you stop the tumours start to grow again.
DeleteI'm so sorry you're dealing with this. As the others mentioned, maybe a medication to treat the oedema will help. Or compression socks? My brother used those when he had swelling in one of his legs, a side-effect of cancer treatment from years ago.
ReplyDeleteI can't get compression socks on. Water pills help a bit as mentioned in other responses, but basically, it is unavoidable.
DeleteThat looks extremely uncomfortable. I hope you are soon over it.
ReplyDeleteI just have to put up with it. It stays for as long as I do.
DeleteI am glad it is not as painful as it looks, but it must still be extremely uncomfortable and make everything you want to so so much more difficult, even the most banal things as just getting up in the morning.
ReplyDeleteYes, it is the breathlessness caused by the fluid in the chest that is most difficult. I am often up having breakfast before 7.00, but I am doing well to be fully up by 10.30. Everything takes so long.
DeleteThat does look uncomfortable. So sorry you are having to put up with that.
ReplyDeleteThank you. Either I put up with it or stop the tumour pills, in which case I would not last more than 2-3 months.
DeleteOh gosh - that's really nasty and uncomfortable. I hope you are bearing up as well as possible
ReplyDeleteThank you. I haven't given up yet, but I understand why some do.
DeleteThat must be so miserable. My father got odema following cancer treatment and a physiotherapist showed Mum and me how to do odema massage (its a remarkably light touch) and that helped his situation somewhat.
ReplyDeleteThank you. It may be worth looking into that, but at its worst almost any movement has me gasping for breath, so even walking to the end of the garden can be hard. Also, breathing heavily can bring on seizures. So I don't know if anything there would help.
DeleteIt may be worth seeing if there is a trained masaage therapist that does home visits like mine
DeleteThank you for the suggestion and for visiting, reading, and commenting. It's nice to have comments from new visitors.
DeleteI'm sorry you have to deal with this. I can't imagine the many problems it must cause for you. I admire your ability to put up with it. I'd like to think a new treatment for your cancer could soon be found so you could safely stop the pills. At least we can hope. You're in my thoughts.
ReplyDeleteThank you, Bonnie. It's a hard road. Good to hear from you. Hope you are keeping strong, too.
DeleteThinking of you and hoping you get some kind of relief, especially with your breathing. x
ReplyDeleteThank you. The breathing is the most troubling aspect.
DeleteLymphodemia painful xx there is usually a specialist nurse on hand to help
ReplyDeleteThis is general oedema caused by the pills - something to do with albumin levels - rather than lymphoedema. It's not actually painful, but greathing can be difficult.
DeleteI mentioned that I was dealing with oedema caused by anti-hypertension medication but my issue has been so insignificant compared with what you have been battling Tasker. As the old hymn goes: "Fight the good fight with all thy might!"...the lines that follow that are dubious.
ReplyDeleteI thought that when you said your shoes were tight. If only.
Delete