chemo

Thanks Alex ,  im glad to hear it does get better when finished as I have read some storys about long term side effects.

I drank loads of it after each chemo (I had to add lime juice because it tasted metallic)....I just wanted to flush my liver and kidneys as quick as possible. I also had really runny eyes and had to get 'fake tears' from the chemist to help my eyes. You will find the next round easier in that you know what to expect, but apparently the chemo is cumulative in your system so things may get worse until it gets better --- and the good news....It does get better when you finish.

Also I'm a strong believer in exercise when and if you can drag your body and mind to do it. If you can stay mentally strong, you should be able to get through this physically too.

It's a rough ride and I'm thinking of you.

Alex xx

I drank loads of it after each chemo (I had to add lime juice because it tasted metallic)....I just wanted to flush my liver and kidneys as quick as possible. I also had really runny eyes and had to get 'fake tears' from the chemist to help my eyes. You will find the next round easier in that you know what to expect, but apparently the chemo is cumulative in your system so things may get worse until it gets better --- and the good news....It does get better when you finish.

Also I'm a strong believer in exercise when and if you can drag your body and mind to do it. If you can stay mentally strong, you should be able to get through this physically too.

It's a rough ride and I'm thinking of you.

Alex xx

Thankyou for explaining  what your oncologist said,, it gives the motivation to go through next dose, not reduced.I ended up with febrile neutrapenia and spent some in hospital  im still learning about the impact it has on the body,im better prepared this time round, thanks elizabeth

I got a real shock about the matter of people having chemo doses dropped. My oncologist talked about it . I hope you don't mind if I pass it on so you can discuss it with your oncologist. My oncologist Arlene Chan gave a talk last weekand at which she said that we are safest with the full dose of our chemo if we don't want the cancer to come back, and that we must have at least 86% of the standard dose, otherwise our chances of metastatic recurrence goes up a lot.

She said  oncologists find it hard when patients say they are too sick and cannot cope with being so sick, and oncologists may then choose to reduce the dose which is the easy solution, rather than give neulasta and also provide really good treatment for symptoms and side effects (which is what she recommends).

She said she does not think we should be left to suffer from bad side effects, but it breaks her heart to see us coming back with metastases that might kill us because we were not given help to find the right medical treatment to stop those side effects being too much to bear.

I was a bit shocked to learn that it goes like that. She said mostly they do not say:"I can drop your dose if you wish, so long as you understand this may well make your treatment less effective and make it much more likely the cancer will come back. Is that what you want." Which is what she says to her patients. They just say, "Ok, I'll drop your dose then"

best wishes with finding a good answer for you.

I got a real shock about the matter of people having chemo doses dropped. My oncologist talked about it . I hope you don't mind if I pass it on so you can discuss it with your oncologist. My oncologist Arlene Chan gave a talk last weekand at which she said that we are safest with the full dose of our chemo if we don't want the cancer to come back, and that we must have at least 86% of the standard dose, otherwise our chances of metastatic recurrence goes up a lot.

She said  oncologists find it hard when patients say they are too sick and cannot cope with being so sick, and oncologists may then choose to reduce the dose which is the easy solution, rather than give neulasta and also provide really good treatment for symptoms and side effects (which is what she recommends).

She said she does not think we should be left to suffer from bad side effects, but it breaks her heart to see us coming back with metastases that might kill us because we were not given help to find the right medical treatment to stop those side effects being too much to bear.

I was a bit shocked to learn that it goes like that. She said mostly they do not say:"I can drop your dose if you wish, so long as you understand this may well make your treatment less effective and make it much more likely the cancer will come back. Is that what you want." Which is what she says to her patients. They just say, "Ok, I'll drop your dose then"

best wishes with finding a good answer for you.

Thankyou so much for your supporting words,,, and hints,,,, since bloging I have spoke to my nurse and they may have to reduce my dose due to the reaction I had.  Next chemo I will be better prepared. Thanks elizabeth.

I think the main thing is to remember that the first time is worst in that it is totally new territory: they are trialling you for neutrapenia so your WBC may drop dangerously, so you have to avoid sick people and probably crowds. And you have not yet got your balance over how it feels so get knocked for six again and again physically and emotionally. And because you are still finding out how YOU react to it and what actually helps each your symptoms get less or go away, finding out what you can eat, how to get to sleep, what to do with all the emotions that come up and overwhelm you. Plus you are training your husband family and friends how to help and hitting glitches. Plus you are getting to know yourself as a chemo patient: a balding person who is physically unwell and having trouble coping: not an easy person to love and accept and support.

If your oncologist has not suggested remedies that work for the symptoms that distress you or even that are mildly irritating,  you can always ring and ask the oncology nurses or the breast care nurse or even the local pharmacist.  Or make an appointment to see your own GP and ask for recommendations. 

My first time through I was so distressed with reflux and insomnia and packing on 7kg literally overnight that I found it really hard to get myself back for the second dose. Had nightmares and a melt down a few days before and that seems to be fairly common.

I think that while symptoms may accummulate in the treatment cycles ahead, you will have a much better knowledge of how to minimise them so they won't be  nearly so distressing. The first is the worst. Get through that one and you are most of the way to the finish line. In fact, think of it as a training period that will help you manage the cycles ahead.

The other big thing is to walk every day for at least half an hour, preferably an hour and preferably with a friend or family member, and to treat walking as your job, the one thing you must do.  My oncologist strongly recommended this, and I found that days I did not walk felt heaps worse and I was a lot more emotially all over the place when I walked.