Double whammy update

FormerMember
FormerMember
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Morning all, we have a dusting of snow today, looks lovely although it's only 1*

After the initial shock of my brother's diagnosis and the disappointment of my last scans showing disease progression in the brain & liver tumours things have settled down.

My brother is having 4 cycles of aggressive chemo and then a break and repeat PET scan to see if he's stable enough to be offered surgery which he's been told is his only chance of survival. Nothing's definite till it's definite as he's also in a tier 4 area and the hospital is stretched to the limit.

I started my 5th line of chemo, oral Capecitabine, to try and slow things down. The 1st cycle was ok but I had problems straight away with the 2nd cycle. Half way through & having only managed a little over half the dose I rang the chemo nurses and was told to stop taking it. I had constant nausea, a day of vomiting despite medication, mouth ulcers, palmer/plantar syndrome, so bleeding finger tips and painful feet like walking on broken glass. I was alternating between no sleep at all to 14 hours one night and could not get warm. 

I've heard oral chemo referred to as "chemo light" but that certainly hasn't been my experience. if I wasn't such a lady I would swear!!

 I'm seeing my Consultant on Thurs and have no idea where we go from here, or even if there's anything left to offer. I could have stronger medication to manage the side effects, perhaps steroids, but that medication has it's own side effects....

On a positive note my hair, eyelashes and eyebrows are growing back and we've got the pain management under control BlushFingers crossed

xx

  • Hello Tinalay. Will be thinking of you tomorrow. You have offered advice and help to people,  built up their confidence, and then stated " You've got this"

    Well Tinalay, this time, you've got this. Xxxx

  • FormerMember
    FormerMember in reply to flowerlady

    Hi  you’re right, sometimes we have to take a step back and remember this is hard! My brother’s 4th chemo has been postponed as his pre chemo bloods haven’t recovered enough. The main side effects seem to be from the high doses of steroids he’s having. They’re not certain they can get him well enough to withstand the surgery and of course Covid complicates things so he’s very much in limbo. He’s very pragmatic and of course we can talk to each other about things we don’t share with family & friends

    I’m a bit nervous about my appointment tomorrow because I’m aware we’re running out of options. One thing I do know is I’m not going to shield again. I’ll stick to the rules as much as possible but I’m going to carry on going for dog walks for the sake of my mental health. 
    How are you doing, are you still having chemo? If so I hope it’s keeping you as well & stable as possible. xx

  • FormerMember
    FormerMember in reply to Norberry

    Thanks for that   it does help Blush It still amazes me that people I've never met step up and offer support when the going gets tough especially as everyone is dealing with their own, often bigger challenges.

    xx

  • Hi

    Sorry you are having such a rought time.I agree with you re the shielding - I intend to carry on going for a walk every day as it is essential for my brain and well being! Sadly my dog cant accompany me because she is in a much worse shape than me ( geriatric). I think we have learnt a lot since the original lockdown about what is safe, and being outside in non crowded spaces feels very safe to me. I do wonder at the "once per day" rule which seems to make no sense at all. Hope there are other options for you, but I know how hard it is each time something fails as we fear running out of road. I have just started on capecitabine ( day 9) and so far so good but new meds always bring their concerns. Sorry it laid you low. Good luck for tomorrow.

  • FormerMember
    FormerMember in reply to ownedbystaffies

    Hi  apparently capecitabine is usually well tolerated, I hope it brings you good results with minimal side effects. 
    I think it’s especially important to get outside at this time of year. When you have a dog you realise there are very few days when you can’t get out at all, and even on the dark days there’s a surprising amount of colour. How far are you able to walk?

    xx

  • Hi ,

    Yes getting out in all weathers is what I miss about having a dog which is "fit for purpose" as a dog. Sadly my old girl is definitely not up to any walk at all ( well, okay about 10 yards and then she looks longingly at home). I make myself go out most days, but the added motivation of an enthusisatic dog is missing. I walk for about 30 to 40 mins, longer if with someone else. You are right, there is always some colour out there and the bulbs are popping up,  blossom on my witch hazel, red berries, bright birds etc. Hope you are finding walking ok and bad side effects of capecibitane are mending.

    xx

  • Hiya I have decided not to shield either. I know what feels safe for me and I won't be taking risks. But I need interaction, and if I need to go to Sainsbury's, then I will go. It looks as if my chemo is not working so well anymore. I have a scan the end of this month to see what's going on. 

    Hopefully we will be in control of Covid by the spring and we can get on with our lives. Fingers crossed for your brother 

    Xx

    Flowerlady x
  • Hi Tinalay

    I hope things go well for you tomorrow, I know you're running out of options, not good, but always have hope that some new trial drug is found to give you more time. This world is better with people like you, Tinalay. 

    Best wishes to your brother also. 

    Tvman xx

    Love life and family.
  • FormerMember
    FormerMember in reply to FormerMember

    Hi Tinalay

    Good luck for your results.i knew when I went for my appointment she was going to say it had stopped working and didn’t have more options but I won’t give up hoping a trial will  come along.At the moment covid has taking over so I have to pray

    things improve.I am like you and will go out for a walk with the dog as long as we are careful I can’t see how it  can hurt.Staying in definitely would not help.Mind I am in a scooter now so I don’t walk far but it helps to get out.

    Stay safe Hibiscus

  • Hi Tinaly I have fingers crossed and everything else for you today loads of love and hugs xxxx

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