Chemo and Guillain Barre Syndrome and r there any groups on Sunshine Coast, Coolum to Noosa Region?

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  • kmakm
    kmakm Member Posts: 7,974 ✭
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    @Sirrah Bloody well done Pauline! Now just keep chugging that water and remember to close the lid when you flush...  ;)
  • Sirrah
    Sirrah Member Posts: 77 ✭
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    @kmakm WIll do!  I am feeling scarily well, just waiting to see what the promised (threatened) Day 4 brings!!!

  • kmakm
    kmakm Member Posts: 7,974 ✭
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    Ah we're all different @Sirrah. Just take it as it comes. You might be Day 5! Or be one of the lucky ones who don't do too badly at all. K xox
  • Afraser
    Afraser Member Posts: 4,373 ✭
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    Most people find paclitaxel easier - I didn't but it's the exception that proves the rule! Most of the side effects are short term, over with treatment. The only one I would watch out for is peripheral neuropathy - usually starts with pins and needles sensation in fingers and toes. Again, most people get a relatively mild reaction, and it clears up after treatment, but it can get serious, so make sure your oncologist knows if you encounter it. I found vitamin B helped a bit, others have used cold mittens or ice water. Worst scenario is a reduced dose or stopping a little early, but not likely unless you have a bad case, and chances are you won't. Best wishes. 
  • Sirrah
    Sirrah Member Posts: 77 ✭
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    @kmakm I found out I'm a Day 3 girl! Nausea and shaking set in late yesterday.  Don't feel too bad this morning but will take it easy! @Afraser thanks for all your tips on Paclitaxel, I shall write them in my diary for November when I am due to start it as I have a shocking Endone/Panadol brain! Don't think I can call it chemo brain as I have only had one treatment and needed my husband and daughter to remind me about so much over the last 7 weeks! 
  • Sirrah
    Sirrah Member Posts: 77 ✭
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    Hi everyone who supported me during my first week or so on this site.  I have just emerged from over week of a fog of chemo nausea, fatigue, shakiness, bone and skin soreness.  On top of that I had my seroma drained the day after chemo (which I am never agreeing to again). That cause so much pain, think the idiot Dr at the radiology place did it out of my breast scar as my surgeon had not caused that much pain the first time.  That meant taking some Oxycodone again, so double the constipation!!   Am determined the next round on Oct 4 will see me recover more quickly!  Am I being over optimistic?  

    Has anyone had small red, blistery spots all over their body, along with red splodges without the blisters after either chemo or Oxycodone?  My husband reminded me I had some in hospital after one of my operations so more likely to be the oxy!

    Also, even though I began feeling better yesterday (one week and one day after chemo) I have been shaky with tremors throughout my body.  My mother has a tremor she takes medication for (it's called an essential tremor, altho why its called that I have no idea) and my sister and I started to notice slight signs of it after age  55. It was only in the head/neck and we have never sought medication.  When given Cyclozine for my 2 ops (mastectomy and axilla lymph node removal) I had terrible hallucinations and tremors throughout my body which has now been attributed to that drug and on my next op to get my portacath it was noted as an allergy, not given and so I didn't have those reactions. Therefore I have eliminated that.  So, my question is, does anyone think it is related to the chemotherapy drugs, Doxorubicin or cyclophosphamide?  If not, I can try to eliminate the essential tremor by getting medication from my GP.  

    Have already had to get in touch with my oncologist to OK use of anti virals for cold sores, so don't want to ring him again.  Any suggestions are greatly appreciated, hope everyone is enjoying some sun this weekend! (Well, not those of us who are sun sensitive!!haha!,)


  • Josephine66
    Josephine66 Member Posts: 79 ✭
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    Oh dear @Sirrah you poor thing. My first chemo was disastrous and i was not at all prepared. My reaction was mostly due to anti nausea drugs (steroids) and poorly poked cannulas (i got a poticath b4 next chemo). Everyone reacts so differently so theres every chance next chemo will be easier on you. 
  • Kiwi Angel
    Kiwi Angel Member Posts: 1,952 ✭
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    @Sirrah u poor thing. Every round of chemo is different too I didn’t have the same experience twice. I hope u feel better soon xo
  • onemargie
    onemargie Member Posts: 1,264 ✭
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    Hi there @Sirrah. I just found your message but it wasn’t under my PMs but somewhere else! I’ll find it again and text you through the week to see how you are going. Margie x
  • Sirrah
    Sirrah Member Posts: 77 ✭
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    Thanks @Kiwi Angel for your response.  I think when I had a few good hours on some mornings I was expecting it to continue and my expectations let me down.  Am much more prepared for the ups and downs next time.  Have had 3 pretty good days and my husband even walked me across the road to have coffee with a neighbour yesterday. (Still a bit shaky when I walk). It was so nice to be in a different environment and yes, we r so lucky where we live, we watched a pod of whales jumping and waving their fins while we had a cuppa!  
  • Sirrah
    Sirrah Member Posts: 77 ✭
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    Thanks for letting me know @onemargie. I thought I might not have done it correctly.  Was just trying to do something similar to private messaging on f/b. Perhaps someone can give me the right steps!  Thanks for the support Margie and I have been lucky enough to b contacted by another member here on themSunshine Coast and we r hoping to meet up soon.
  • Sirrah
    Sirrah Member Posts: 77 ✭
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    @Josephine66 thanks, yes I guess it is all a steep learning curve. This is my third day of feeling a bit like my old self and we r going out for a picnic by the river.  Hope u too r feeling better and your skin has healed.  I am still looking forward to meeting up next month and will send u a text message towards the end of next week
  • Doin'it
    Doin'it Member Posts: 377 ✭
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    @Sirrah it’s really important to try & drink more fluids to wash the toxins out if you can. I managed to drink 3 ltrs a day (which means I was up half the night peeing 😂), but worth it. Hope your next chemo goes better. I have my last chemo in 8 days. The time has gone really fast. Hang in there, & keep letting us know how you’re going. Take care xx
  • Sirrah
    Sirrah Member Posts: 77 ✭
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    @Doodoo thanks so much for your advice.  I did try to drink at least 2 litres for the first week, will try to keep it going for longer next time.  Have decided to prepare some 1 litre containers so I know exactly how much I'm getting thru!  Good luck with your last chemo, that must b an amazing feeling!
  • Doin'it
    Doin'it Member Posts: 377 ✭
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    @Sirrah I used a jug to measure my water. It’s a great idea. I drank coconut water as well as water to add some goodness. Hope you’re going ok. Thanks, can’t wait for last chemo. It’s kinda strange because I don’t want to do it, but I can’t wait. Weird hey! 

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