Hi soldiers and warriors. Thank you for the messages I've received about my whereabouts these last few weeks. Most of the time I've been in hospital recovering from the chemo side effects. First time was 2 days after first chemo when I got severe neuropathy and ended up without use of my right arm, both legs and half my left arm. Six days later I was ushered out and to this day have not regained proper use of my hands, but I can knit and type now. Taxol was stopped and replaced with Taxotere.
Two days after the Taxotere I was vomiting, pooing for the Olympics and had a head full of eczema. I suffered for 10 days, lost about 8 kgs and our nurse came and phoned for an ambulance. My blood pressure was right down low but my heart was racing to try to keep me alive. I got told off at the hospital, but every day I thought I would get better.
Then, I told the oncologist that I needed to be well and at home as my number two and number four sons were visiting with baby Max, my grandson. So, went on weekly carbo and avastin only (that finished today) so that I could at least function. Which I did. Such a lovely time we had but so sad when they went home yesterday. I roped in two "aunties" to help me while the boys helped hubby with DIY stuff. Here is me au natural with the boys. Number two, left, has his head shaved but number four did it for support for me. I look dreadful but they said that I wasn't as bad as they expected. They should have seen me in hospital!! I've still got the dark baggy eyes from that experience.
So, next week I'm back early for chemo which suggests that when I see the onc on Friday he'll say he's putting me on carbo and something else nasty and back to every 3 weeks (and hospital stays in between probably). I'm having my PET scan tomorrow but the nurse didn't take the right blood test yesterday so I've no CA125 result in the post this morning. Just the usual stuff. I'm a little disappointed to say the least as I was hoping it was down and I'd have something to keep me going until Friday's results time.
So, that's me these last weeks but I've still got my sense of humour intact thankfully. There was one particular day in hospital for the first time that I just wanted the pain etc. to stop and begged hubby to just let me die. Luckily he rallied me around and I've not felt like that since, even when my head was down the toilet for hours on end. So be warned girls.....
love and hugs to you all
Kryssy xxxx
If I was able to put on another photo then I'd show you little Max - 14 months of energy and loveliness - and me in one of my wigs which rarely comes out of the cupboard. But, don't think I can. xxx
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Kryssy
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So nice to hear from you again in the forum, I truly hope you are less poorly with your treatment from now on or that they can devise a plan to help you through it, maybe continue weekly at a reduced dose? it’s all fairly grim at the best of times but when you have such intense reactions it must be really awful. Just goes to prove one size doesn’t fit all.
What a lovely photo you’ve shared with us, you don’t look dreadful at all, you are beautiful. It can be really difficult when we lose our hair can’t it?, I have no photos of me without mine and now find it hard to remember how I looked but remember shaving my head thinking I’d look like Demi Moore did in GI Jane especially given the fact they’d used my name for her role in the film (without asking me first I hasten to add 😊), the reality was very different but we move on.
Good luck with the rest of your treatment, I hope you are able to be less poorly. Keep as well as you possibly can and think about all the lovely Max hugs to help you through. Take care lovely lady, big hugs and love coming across the channel ❤️Xx Jane
My goodness you've had a terrible time haven't you. I do hope things improve. By the way you don't look terrible. I think you look nice and you have matching sons 😊😊😘😘
Hi Kryssy bloody hell girl you ve been through it! Haven t been on here for a while either.Similar reasons,but on the up again.2nd Chemo Thursday.Saw Oncologists today,more anti sickness to take before this time.Flu Jab done,lung infection clear, let's hope it ll be better this time.
Lovely photo of you and your boys,au natural looks good from where I m sat.
Great to hear from you. Wonderful photo. I don't think you look dreadful at all. In fact rather interesting. Good luck with your onc appointment on Friday. Hopefully some other drug combination will suit your body better. Are you taking any drugs for the neuropathy?
Thank you January. Off all medications, except the Emend and Sulapred over 3 days at chemo time, as they made me sick. Even the anti sickness drugs. Just have big dose vitamin C, regular dose D and E. Take probiotics too as I have a tendency to get Candida Albicans easily. Also had a bit of black tongue but it cleared quickly with bicarb mouth wash and the probiotics. The ALA and L-G I've been taking since getting almost paralyzed after Taxol. It must be doing the work because each day there is slight improvement. I have stopped shuffling and can actually walk now. Get some pins and needles after the weekly carbo/avastin but it goes again quickly.
I'm taking 1,200 mg of ALA each day at bedtime as it works best on an empty stomach and 1,000 mg of L-G the same but I may up them to include another half dose during the day to see if the improvement speeds up. Onc is very interested in seeing how it goes and said last time I saw him not to stop. I keep a diary of events to see what works and what doesn't. Don't take whey protein anymore. Didn't notice any muscle strength.
So that's my drug list. The bad stuff all went back to the pharmacy. I eat the good things and don't touch sugar, but never have really. No red meat, alcohol ( gone right off it) but drink buckets of water and ginger tea. I'll be the healthiest corpse in the cemetery.....
I was researching the optimum dose of L-G before starting this round of Taxol because of my residual peripheral neuropathy. Nowhere near as bad as yours but eventually I had to have a 20% dose reduction. I found information, mainly from the US, showing that L-G caused aggressive ovarian cancer to grow faster, but without a similar affect on non-aggressive ovarian cancer. Admittedly the work had been done in the lab and on mice only. I've decided not to use it although it would appear many women in the US are given it routinely. You might want to look it up. I will have a look at ALA as I would like to get through this course without getting the degree of neuropathy as last time. I try and present a youthful image to the world at large and having to dismount from a horse onto a mounting block because my brain has no idea where my feet are, doesn't quite cut the biscuit.
I try and eat well too, I always have done for about the last forty years (not in my youth I regret) but I gave up giving up cows dairy. The only thing I've maintained is adding nuts every single day.
I didn't know that about the L-G so it's made me wary now. I had my PET yesterday and get the results tomorrow. The lymph under my arm has definitely shrunk so I'm hoping all the other tumours have too. I'll rethink the L-G but as you say, it's difficult to know facts for sure if they have never been researched and tested on anything other than mice. We can but try though.
Sorry to hear about your awful time but good to see you are keeping positive. lovely pic of you and your sons.You look beautiful without hair as well.Just spent 4 hours in a&e because of rising temp of 38.2. Anti biotics did the trick but not after i had a reaction to the drugs . That did scare my husband but all was good again after 5 minutes.I am only on carboplatin but platellets keep going low resulting in chemo delays. Rather frustating when you just want to complete the course.Hope the rest of your chemo goes well .Stay positive always. It helps.
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Change of meds and reduction of Taxol by 50%........
Full circle !
Not such good news
Feeling fed up
