Hi All
I have mets in my liver and am currently on carboplatin and gemzitibine (hope the spellings correct!). Because I am triple negative I am on chemo treatment the whole time, which can be a bit draining.
With this new treatment I have to go on day 1 and for the both of them and then back on day 8 for the gemzitibine. The problem is that on about day 5 I start getting a severe pain in my liver, which I have been told is inflamation caused by the chemo. This pain can sometimes be okay and quite bearable but on other days it can be really sore to the point where I struggle to take anything other than a very shallow breath and get in a comfortable poistion and don’t move. I frequently have to sleep sitting up to try and ease it.
To make matters worse - the doctors told me to take neurofen and tramadol for the pain which did work a treat. However my platelets are very low and I have now been told under no circumstances can I take any form of anti-infamatory or steriods. The doctor prescribed me morphine, however this only made me feel out of it but did not take the pain away.
Has anybody been in a similar situation and can anybody advise me if they have had any painkillers that have worked. Basically at the moment I have no pain relief and don’t want to keep going on about it in case they take me off the chemo.
Diane xx
Hi Diane,
I think it is awful that you are in a position where you are uncomfortable to ask for what you need in case it affects what you must have! Does your hospital have a pain clinic, or do you have a macmillan nurse you can talk to?
I think there are a number of other pain medications that you can try. Remember meds like morphine take a few days for you to adjust to and the initial reactions to settle. Then of course the level of dosage can be adjusted. A lot of patients do not respond well to morphine (assuming you mean oromorph) and do better on oxycodone. This is what I have found. Then there is fentanyl - I think the patches start at quite a high level, but I have found fentanyl lozenges work well for me. Do ask about what other options you can try that would be suitable for you. Don’t hold back cos it is really hard to bear pain and feel nothing is being done.
LOL - off to the pain clinic any time now!
Dawn
xx
Thanks for that, they keep coming back to the fact that it is an imflammatory pain and that normal painkillers don’t take the inflamation away. It really is frustrating and obvioulsy painful. Banging my head of a brick wall springs to mind.
Diane
xx
another quickie before I leave Diane. My pain is mainly neuropathic/inflammatory. I don’t have liver problems so not sure which ones would upset liver but I am also on pregabalin (lyrica) for that. Was on amitriptyline. So there are something else worth asking about. I do sympathise cos I know how awful the pain can be. I do find when I have appointments I do a lot of the asking and they seem very prepared to let me try things.
Dawn
Hi Diane, also triple neg but on Taxol / Gem in the same cycles as you, it is tough isn’t it, the constant chemos, not had a real break now since Dec last year 
Sorry I can’t help you with the pain issues, my spread is lymph so my pain is nerve in my shoulders now, but not yet at the level where I cannot cope, that is to come so I do read posts on pain management in order to try and arm myself with possibles for the future.
I really feel for you having to suffer, it’s cr** and just wanted to write and give you my best wishes and I hope you can get them to to give you a solution, Dawn has some really good ideas and hopefully the team will help you find something to help.
Nikki
Hi Diana,
I am so sorry to read that your in so much pain.
It really does get you down.
I agree with Dawn though there are other meds to take
I had a real struggle with my pain control a little while
ago and felt very let down by my Dr and Mcmillian nurse.
I am now on Amatripteryline as well as morphine and steriods
and life is a much better place but it did take some juggling.
Also just a thought if your having trouble sleeping could
you get some sleeping tablets from the GP.
I can’t live without mine.
best wishes
Tess
I spoke to a registrar doctor on Friday who thinks that because this chemo can cause inflamtion in the liver and pain that this may be why I have the pain. However she says that she thinks there may be a good chance that because my platelets are low my liver may be bleeding slightly which would also cause inflamation and pain and that she thinks that this could be the problem.
She would have liked to scan me on Friday but she didn’t thinks she would be able to get an ultra sound done by the weekend so just gave me the normal sort of advice - if I started bleeding or have a rash on my arms or legs then to go to the hospital near me to get platelets immediately. I have been okay and have to go to Edinburgh tomorrow to get 2 bags of blood and a check done on my platelets and that.
She also advised me to start taking 4mg of steriods from Friday everyday until I see her tomorrow - which have helped a lot I can only really feel a slight twinge now and again. Unfortunately the steriods don’t help my platelets however that can be sorted out with a bag I’d rather have that than live with the pai. My biggest concern is that they don’t give me the platelets tomorrow and play the wait and see game. Which means if it doesn’t turn out okay I will not get my chemo on Friday!
I am sick of not getting a break either I have been on constant treatment from February 2008 and it really can get you down now and again my life is controlled by hospital appointments.
Anyway i’ll let you know how I get on tomorrow.
Diane
xx