have been given a date to start chemo!

Cisplatin can leave a metallic taste in your mouth and also make your sense of taste go "numb" - pineapple seems to "drill straight through" and actually tastes the same ! All the nurses recommended it to me and they were spot on !

I'll copy my entries on the forum I mentioned in the next post here - hope it helps.

Richard

As above ... hope this helps ....

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Have had 6x cisplatin sessions (plus some other "stuff"). First time through took the full course of anti-sickness pills (even the optional ones) - then realised for me that they were not all required over the next sessions.  They actually made me feel worse - but appreciate this is different for everyone.  Drink lots of fruit juice is all I can suggest. Was also "bunged up" - milk of magnesia did the trick for me. Way to think of it is that your body is trying very hard to reject the very same thing that is meant to be fixing it - so whatever works to for you to "focus it where it is meant to be and flush it through the rest" is good.

Was massively tired over week one of each cycle, recovered to almost normal in week 2, and (sorry to say) started to worry about the next cycle during week 3 - however looking back now the worry actually changed to "this is becomming a real drag" over time (which is positive!) over the course of my treatment.

Re tiredness - I just went wtih the flow. Sometimes I had to crash out for half an hour - over times for a few hours. For me it came over in waves every so often and felt like I had just completed some major exercises but without the muscle ache (if that makes sense).

You'll be advised of the usual side affects - can't remember now specifically for cisplatin but hair loss (for me - went at start of session 2 but actually grew back by session 5), horrible taste in your mouth (been a bit strong here - for me tasted  "metal" after session one for a few days only, then sort of lost my sense of taste (only way I can describe it is that it went numb) until sometime after the end of the complete course (it has come back, and I can't remember enjoying food so much !). Developing a taste for pineapple is good - this seems to drill straight through everything and is very refreshing. The infection risk - covered by a week of pills each cycle (for me) - worried me at first but common sense always does the trick. My family had serious colds during my treatment - but simple steps (just think govt. swine flu advice) does work and I was unaffected.

I found the day centre at Addenbrookes very scary for about an hour until the person sitting next to me said that that this was where he came to get better. The staff in any oncology unit are second to none.

Oh, by the way, make sure you wear a sweat shirt or something warm with long sleeves on the day of your treatment right up to when the nurse "connects you up". Veins can run but the can't hide ....

Cisplatin was a "walk of shame" drug for me - I'm afraid it's a case of "counting it all in" and "counting it all out" re liquids ...... you'll get the idea ....

And finally, "one down five to go" quickly becomes "five down one to go" (or whatever your course will be) when you start ticking the sessions off. My 18 weeks (completed end of June) is now just a blurr.

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All the best, Richard

hi richard - thanks so much for your replies - it is so nice to hear back from people - i tend to find it hard to follow some of the info on here - there is so much to read and i end up getting lost and not being able to remember who said what and where i saw it - if you know what i mean - you have given me some sound advice and i will make sure that i remember to wear sweatshirt and to have plenty of juice in the fridge - and not forgetting the pineapple - which i love - so good excuse for me to buy some - again - thanks a lot - hope you have had a good weekend and that your week is a good one - are you back at work or still on the sick? i am not at work at the mo - and looking at the treatement i will be off work for quiet some time yet - but will have to manage some how - just not sure how - especially when i have a twelve year old to look after - anyway - i am sure things will work out ok and i cant wait for treatment to begin - bye for now - karen - xoxo

Karen, I have just started back at work (2 weeks now and very part time) - I was off for a year first with all sorts of medical issues, then the diagnosis and finally with the treatment itself.

Not much I can advise other than to "stick with it" - everyone reacts differently - however the treatment is well understood and all of the medical support you will encounter will be second to none.

Can only talk about cisplatin - but for better or worse it was "the one" re side effects for me ..... all of the medication you will be given to control it's impact works but it may take a little while to get the balance right. Nausea is generally the most noticeable. But - no reactions will surprise those treating you - they understand it and will take you through everything.

There is a great blog on the site "Chemon over and share" from"the sky I scrape". More than enough to take your mind off things - and from a fellow cisplatin addict (??!!)

community.macmillan.org.uk/.../chemo-n-over-and-share.aspx

Try and zap you thoughts onto this site as well as things progress - you are not alone !

All the best, Richard.