Fatigue & Topotecan

Ladies,. Was so glad to be given a weekly drug that didn't seem to wipe me out. Well, week 3 of first cycle and I regret those words. I was getting more & more tired and even had a duvet morning yesterday - put it down to cold weather etc......am I stupid.

In today for treatment to be told that my magnesium levels were too low for treatment - so had an infusion (that I don't mind - too much). But my iron and haemoglobin levels are low and have to get some units of blood on Thursday. Well either be admitted as an in-patient or come back in. The hospital must do some more blood tests and blood matches also......is there no end to this disease.

The skin on my hands has become extremely dry - so much so, that the skin between my fingers is now brown and hard,,,,disgusting looking. Nurse has recommended a cream. I have to take a lot of Movicol and deal with the outcome....yuuk.

I hate this damn disease.....sometimes I wonder are the treatments worse than the disease.

Know by weekend, when I get bloods sorted I will be grand - but heck girls, it is tough going. Not looking for sympathy, as I know lots of you are in the same boat - but wouldn't someone give us a little speedboat to a faster recovery.

so, hugs to all of you out there.


15 Replies

  • I'm having real problems on Topotean too. Been in hospital for a month. Just getting back to normal xxx

  • Hi TrishLey. Sorry to hear it's been a rough time - I hope things start to improve soon and that 2016 brings you strength and happiness. Springtime brings new hope for us all - the extra bit of daylight (and sunshine if we ever see it!) might lift all our spirits. X

  • Thanks so much sweetie. Its been the roughest yet but I really am getting there, every day now I am getting stronger and stronger. Just hoping they will start the Chemo soon xxx Would love to get it while I am still in hospital so they can really watch my Kidneys, I am a bit worried about them. Onwards and upwards though and that sunshine is making a difference too :)



  • HI Daisies, I am really sorry that this chemo is getting the better of you but hopefully once the magnesium levels are sorted and the bloods, you will feel somewhat better. I am not a fan of Movicol either. But make sure you have the softest loo paper possible for comfort. I often think of you, for the moment I have a respite for which I am truely grateful but at the same time I know its temporary. Sending you a virtual hug

  • Well I was talking super powers with my son the other day and he asked me what super power I would possess, after a bit of thinking I came up with super power eyes that could find and get rid of cancer. My son said he couldn't beat that. Wish it could happen for real and I would get on my speed boat and help us all out.

  • Dear Daisies. You certainly are going through a traumatic time at the moment hopefully by the weekend it will be sorted. I have noticed no matter what is thrown at you , you are still in good humour. Yes movicol seem to be the bane of a lot of our lives ,l have to take 2or 3 daily I kind of taken it automatically now Thank God for it but I think he could have made it pleasanter to take. Keep positive and take care .Kittie.

  • Oh daisies - I feel like you too! And im so sorry to hear you're having a hard time of it. Am on Caelyx and finding the fatigue unreal and the ileostomy still hasn't settled down - any leak or mishap is very depressing. It's really hard when nothing seems to go right.

    I'm on fortnightly IV magnesium and I find it does help with the fatigue and to keep the BM's loose (too loose in my case!) I also asked for low dose steroids to give me a bit of a pep - I couldn't cope with the kids if I didn't have it.

    Glad you got a good cream recommended - I find ointment (feels like Vaseline) better than creams as the creams seem to sit on top of that dry skin but the ointments seem to soak in better. Penny's are selling the white cotton manicure gloves for a euro at the moment - my treatment gives a bad hand and foot rash - so I'm keeping my hands super soft at the moment.

    But we're still here, we have to find the good in each and every extra day that we get. When I think back to when I was told I had just 6 months to live - I've had so many celebrations since then - birthdays, Christmases, holidays, anniversaries, happy days out with family and friends... And I have to believe there'll be many more to come. We must have hope that the treatment will help - it won't cure but it will give us time to enjoy this wonderful precious life we have and all the fantastic people that we share it with.

    Having a duvet day is a great idea - don't think of it as giving in - enjoy it! How about planning a few easy days for yourself - a bit of needle work, a good movie, have someone over for a tea/scone/chat. PM if you're ever up for a coffee - will be over like a shot - could bring along my manicure set!! Stay sane. X

  • Sara, Heck, when I remember what you have been though and continue to go through.....i am a wuzz.

    Chat soon. Maureen

  • You've been a role model to me ever since I met you as to how best deal with this. Thank you for that and if I can help you in any way at this time - I'd be delighted to. X

  • Hi Daisies, I'm so sorry your having these problems with treatment, its bad enough that we have to go through it without all the side effects it brings! Hoping you have better days soon. Ann xo

  • Hi Ladies, I think Daisies and Miss Fitz show exceptional strength going through very tough times. I sincerely hope that things will improve and that you both have some good days, days to get out and do things you both like doing. This disease is horrible, I know I am having a holiday from it at the moment but how long is a piece of string. Love to you both

  • Thank you. You're the glue that keeps this board together - you always give a lift to others with your kind responses and posts. Am so happy that you are having a reprieve at this time especially with the wedding coming up. X

  • Ah that is so nice of you. Hmm the wedding dont start me, they sent out some invitations when written on their day off and then sent the rest a week later. I have been caught for one or two little jobs but not much. They are down in Kilkenny sweating it out between them haha. Wedding in Mooncoin and reception in Clonmel. My daughter in law to be is from Mooncoin and that is where they live at the moment.

  • Hi Daisies,hopefully the weekend will bring good news.I agree with you we do ask ourselves is the treatment worse than the illness.And yet we go through it and come out the other side and even if we only get 2/3 mts treatment free ,it's worth it.We could have a slumber party on the 20th in the clarion,all bring duvets! I feel tired also on my new treatment but am walking better and don't need movicol for the past 6 days.

    You'll get through this session like you got through the rest and you'll be planning a break in the sunshine.Giant hug xx

  • Hi Sara,Ann,Joan,Kittie and Leeds.Just to say you are all an inspiration and a ray of hope.You give us hope,advice and information and for that I am truelly thankful.xx

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