I have had PPC stage 3c for four years and have had most of the drugs available. I am now on Topotecan which is a drug they use when all others have been exhausted.
I find that it is fairly well tolerated with no actual physical nasty symptoms except for the usual Platelet and Neutrophil problem which actually although serious do not actually make you feel ill so I am having delays in treatment which is a worry in itself but my oncologist is trying to adjust the dosage so that I can tolerate it better and have it regularly once a week.
My new concern however is that my Liver function tests have been steadily rising over the last 4 weeks and up to this point they have always been so good and within the normal range,
Firstly has anyone else had experience of Topotecan and secondly has anyone one had trouble with liver function tests rising.
My recent PET scan showed that all my old tumours have reduced on the old treatments but the bad news is that it showed new areas of active cell growth. I am currently asymptomatic and lead a normal life, have done all the way through the four years actually apart from periods of infection and surgery. I am very worried that my poor body is unable to cope with any more toxicity from chemo as I have had so much over the years without any real remission.
Has anyone else had any experiences like this?
Feeling really desperate and scared and need help
Written by
chezgravel
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I'm sorry you are feeling down. I remember you were on Avastin for a while but had to stop. There are still plenty of treatments out there so please don't feel desperate. My liver function acted up on Gemicitibine. I wonder is it to do with low Neutrophils because I had that too. Thinking of you and sending you hugs - Trish
Thank you Trish for your very lovely positive reply. Just what I needed this morning to get me through this depression. Yes you are right I was actually on Avastin for two years! I do not write on this site much so don't know how you remembered me.
You have given me the strength of mind to go in the gym which is something I do most days when I am not looking after my 2 year old lovely granddaughter, but today I felt so down that my whole energy went out the window!
I dont get long remissions and on my 3rd line caelyx/ carbo. its hard going through chemo. my last meant to be last week no. 3 but had not got good blood results had a transfusion on saturday and feel better hoping my blood ok to go ahead on friday, we all get these hiccups dont be too down or scared I also had a kidney function test, your not alone sending hugs Jenny xxx
Thank you so much for your supportive words. Yes it is so hard from day to day and the trouble is it never gets any easier. When you think your fears and depression cannot get any worse somehow it does and so you live with this great big cloud sitting over you the whole time. I am constantly surprised at just how scared I get. I still am fighting to stay alive and am determined never to give up but the pressures of this is catastrophic and seems to effect everything and everyone around you. I really envy people with true faith as they always seem to accept that it is what God wants and is therefore OK but I just cannot think like that. I just want to beat this and to go on living. Selfish words I know but I love life and it is for living.
Thanks again. It is good to know you are not alone in this though. It certainly does give me strength to hear other survival stories.
Dear June, it is not selfish to want to go on living! And yes, life is for living!
This awful disease is scary and the treatments are aggressive and scary so being scared is, I think, inevitable. I am trying very hard not to cross bridges or to worry about the what ifs before they actually happen and to live and enjoy my life one day at a time. But it's a darn sight easier said than done!
At this point I think all you can do is to give the treatment a go and if it has to be delayed some times or even stop because your body can't cope then at least you've done all you can.
Sending you love & wishing you strength to keep on fighting the b****rd.
Such wise words which my poor husband sings to me every day and I think he is going through more (if that is possible) anxiety than me.!!
It is really good though to have someone like you to write to me as it really does help when you are down to know you are not alone and that others are going through the same. What area are you from? You don't have to answer that if it is an inappropriate question, but just interested.
Best wishes
June
Yes, talking to others going through the same thing really helps. There's also lots of other help available to help with the mental and emotional side of it all but I don't know if you have tried to access any? Relaxation, yoga, massages etc. might help you to de-stress. I live on the north Staffs/south Cheshire border, am being treated at University Hosp of North Staffordshire. How about you? L xx
Oh not far then, we are almost neighbours. I live in Shropshire, between Shrewsbury and Oswestry. I am actually being treated at The Priory in Birmingham which is a private hospital. I actually used my private insurance Axa/PPP and they have been amazing. Good thing for the NHS actually because my treatment has been so much and so expensive I think I would have bankrupted the NHS on my own!!
It is a bit of a drag having to travel to Birmingham, especially using the M6 every week whilst I have been on weekly treatment but we have got into a good routine and got used to it and I get more time with my wonderful husband as he drives me there and spends time with me which is good.
Yes, I do find exercise I helps so I go to the gym as often as possible. I have not tried Yoga or any of those classes. I have heard they are very good.. I still like to get up a bit of a sweat and that does make me feel more normal, the very fact I can still do it makes me happier.! Thank you so much for your support and suggestions.
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