Oxaliplatin round 5 versus Rachel!

Positive police do not worry – I am not feeling in the least bit sorry for myself, I just fancied documenting whilst I remember, the various inventive side effects of chemo and in particular a nasty little nerve drug called oxaliplatin.  On the days when my body cuts me some slack and I feel normal again or as normal as I can remember it is supposed to feel like,  I can try and ‘love’ this poxy oxy in the hope it is acting like a cold blooded serial killer, showing no mercy as it hunts down the devious cancer cells. Sadly it’s not intelligent enough to weed out the bad guys from the good guys and just mows down everything in its path whilst I keep my fingers crossed there are enough white blood cells left to keep the rest of my body going when it’s finished its latest 2 week killing orgy.

But right now when I am still struggling to throw off chemo round 5, I am not even on speaking terms with poxy oxy or its sidekick capecitabine. 

Chemo is cumulative and I am beginning to really understand what that means as the recovery period takes a little longer each time and some of the side effects start to show signs of being a bit more permanent.   I have even read that the nerve damage brought about by Oxaliplatin can continue to muck you about for 18 months after treatment or ‘treat’ as the chemo nurses call it, finishes.

I remember sitting in the oncologist’s office before starting chemo and him telling me no 2 cycles would be the same and as everyone reacts differently there is no way of predicting who will get away with it and who will not! As it became clear I was not going to “get away with it”, I was comforted with vague murmurings that it might mean (no one ever commits themselves to assurances) it’s doing a better job on me and this could be interpreted as a positive sign!  Thanks Doc.

So, here is my documented reaction to being nuked. It’s a 3 hour process preceded by antiemetic sickness drugs which need an hour’s headstart, followed by more anti sickness drips and steroids before the Oxy infusion can be dripped in over 2 hours. Almost immediately I begin to feel my brain shutting down and the nausea starting to creep up on me as the last remnants of energy are sucked out.  Before you leave hospital and step outside into the cold air, you must first mummify yourself with scarves, hats and gloves as the smallest breeze freezes on your lips and if you accidently breath in cold air you cause your throat to go into spasm, which having witnessed someone choking on my first chemo cycle, I never want to experience.  Almost immediately my fingers start tingling and any pressure or cold brings on extreme tingling sensations in hands and feet.  This is called peripheral neuropathy.  It can be permanent so much care is needed to avoid cold, even to the point of going into the fridge with gloves on!  The most unpleasant feeling is the effect of the cold on your face as you feel your forehead, upper lip and nose freeze like a botched batch of botox!  On several occasions, my eyelids have dropped shut and been unable to open in a kind of nerve spasm.  My tongue swells in my mouth and I am left with a nasty permanent taste in my mouth, only relieved temporarily by eating something strongly flavoured which explains the rapid weight gain!  It is strange how you can feel both nauseas and ravenous at the same time.

As Oxy continues its hunt around the body, I suffer first constipation and then the opposite!  I have no idea whether it’s Oxy or the steroids, but being a jittery bundle of nerves unable to concentrate but still unable to sleep is a masterpiece.   By about day 2 the heat comes and my face, hands and feet all feel like they are on fire as my face lights up like a Halloween mask!  By day 3, I have horrid night sweats joined by the dreaded bone and skin aches on day 3 or 4 which seem to last for a good 5 or 6 days. I had welcomed this one as although it feels like flu with every pore in my body aching, it is comforting to feel this lymph pain particularly strong around my face, neck and legs as it is proof to me the chemo is circulating throughout the lymph, which considering the cancer had spread to my lymph and liver is jolly good news.  My face by this stage is round and moonlike and although Mum says she likes it as I look younger and smiley, I think it makes me look like Paul Gascoigne in his heavy drinking days. Although like Paul, I am glad to say it does reduce in size again from about day 8 and whilst I wouldn’t use my cheekbones to slice bread, they are beginning to be visible again.

I have got used to wearing seabands instead of bracelets and drinking everything slightly warm, but I long for an ice lolly or a really cold refreshing drink.  I have just seen that spring is going to be a scorcher again this year but I won’t be boosting the ice cream man’s profits!

I begin cycle 6 on March 9th, assuming my white blood count recovers which is precariously low again, despite bone marrow injections, a 20% reduction in chemo dose, acupuncture and Chinese herbs!  Then just 3 more sessions of this to go before I can join the ranks of post chemo patients who have their brains washed into remembering nothing less unpleasant than a little bout of flu!  Can’t wait.

7 thoughts on “Oxaliplatin round 5 versus Rachel!

  1. I can hardly begin to understand what you must be going through Rachel!
    I think of you every day, and I know that with your strength and determination, and with the support you have around you…… the future looks rosy!
    Jane xxxx
    P.S you made be cry again!!

  2. Horrendous you poor love. You have every right to feel sorry for yourself so give in occasionally! It’s only human – you cannot be superwoman all the time. xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

  3. Hello double Janes! Honestly I dont want to sound like I am looking for sympathy! I have loads of good days and so far I havent had the foot and hand syndrome and lots of other nasties so I am in better shape than some I know! Its more of a document to the side effects of this particular drug which one day we all hope will be redudundant as new intellligent drugs replace the nuke em all philosohhy at the moment! I feel sorry for my poor old body trying to cope with the onslought of chemicals…as I still visualise my body with millions of little men inside trying to keep it going and they must be totally shocked each 3 weeks to see a nuclear bomb heading their way poor things! Anyway only another 3 to go and then I can concentrate on giving the little men lots of nice things to make them all stronger again. I am not in the least bit of a superwomen, I have loads of them (and supermen) around me and I am enjoying the excuse to be darned lazy most of the time! xxxxxx

  4. Hi Rachel,
    Sorry to hear alll that you are going through, I experienced the oxaliplatin trials and tribulations but I loved it. Unbelievable how it shrunk my cancer from a CEA score of the 500’s to below 2. Then the worst happened, I reacted to the oxaliplatin and can no longer take it. I began my fight in March, 2008 and in November, 2011 my secnod series of different chemos have stopped working and they have put me in Target Research to find another chemo that willl work for me.
    I would give anything at this point in time to go back on oxaliplatin. My hope at this time that they will discover a substitute for oxaliplatin. My prayers and hopes go to you and all others who are fighting along with us this dreaded attack on our body.

  5. I could not of put this better myself. I have had all of those side effects, but not bad. It is day 3 after the chemo that my onslaught starts. Inc read it, I am now nearly at the 4 downb2 to go stage.😊

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