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Justin1970

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Posts posted by Justin1970

    Mri scan

    in MEMBER UPDATES

    Posted

    I just can't get it out of my head it's probably only a matter of weeks, and I've read online with brain cancer you get really tired and sleep a lot, but I haven't slept well for approximately 12 weeks due to the fatigue so i don't know what to think, I don't feel like I'm dying and I've read that some people have lived a lot longer than expected 

    Mri scan

    in MEMBER UPDATES

    Posted

    Hi lily and pam

    I'm not doing so well really I had a 35 minute seizure and rushed to A&E yesterday, I wasn't expected to come out of it, the swelling has got worse the oncologist has put the steroids up, and she said that I've only possibly got weeks to live but I'm determined to prove her wrong. I do have a wheel chair coming, hopefully then I can get out and make some memories with my family, I hope that you both are doing well, I just hope that I can beat this for a little bit longer, I'm devastated because of all the fighting I've done, seems as though nothing has worked. All the best Justin x 

    Mri scan

    in MEMBER UPDATES

    Posted

    Hi lily 

    I can't really pinpoint the worst side effects I just feel lousy,I don't like having no strength and not being able to use my right side so I can't even do physio hopefully I will get it back once this is over, thank you hope your well take care Justin x 

    Mri scan

    in MEMBER UPDATES

    Posted

    June

    thank you for your message atleast I'm not the only one who has been through this, all of what say is happening to me,I do have all the meds to help me through it, my mouth is really sore but I do have a treatment for that, hopefully it won't last the 14 days maybe it's just my body getting used to it, thank you so much for sharing your experience with me it really does help, 

    Hope your well take care Justin x 

    Mri scan

    in MEMBER UPDATES

    Posted

    Hi everyone

    I got it wrong they said it will peak on the 14th day then start to feel better for the last week of the cycle, I really feel rough I'm on carboplatin and pemetrexed has anyone else had this combination and did you manage to relieve any of the side effects many thanks in advance 

    Justin 

    Mri scan

    in MEMBER UPDATES

    Posted

    Yes I do have the white sheet of stuff all over the inside of of my mouth throat tongue and my lips are really sore, I think they were right about the side effects peaking by day 4 or 5 I felt terrible last night but not quite as bad this morning,

    Last night I was all for giving up fighting this and stopping all the treatment, I only want a break and be able to do some stuff but I know I can't stop fighting my family and friends and myself, 

    All the best Justin 

    Mri scan

    in MEMBER UPDATES

    Posted

    Hi lily 

    The care team have put me out some mouth stuff they said its oral thrush, it's really painful, it really is relentless isn't it always something to contend with, I hope it isn't 12 weeks of feeling like this lol, I just feel lousy, I'm trying catch up with my sleep through the day that seems to be working I've been asleep nearly all day lol, 

    Take care Justin x 

    Mri scan

    in MEMBER UPDATES

    Posted

    Thanks lily and rikke, 

    I think anything is worth a try this is a nightmare trying to stay asleep I'll try anything, 

    As for the hair specialist people that was a no go, until I finish my treatment they can't do the system I want I can only have a full wig so not really for me, 

    I just wondered if anyone has experienced a really sore mouth and lips during chemo 

    Many thanks Justin x

    Mri scan

    in MEMBER UPDATES

    Posted

    Hi lily 

    Thanks that's what I'm on but I think I'm immune to them now, I'm wondering if the antidepressants aren't helping the sleeping and whether I need them anymore, it's 4am now and I've woken up every hour since I want to bed really strange, 

    I'm seeing the hair specialist today to pick colours and styles I'm really looking forward to it but scared incase there not very good lol,

    You take care 

    Justin x 

    Mri scan

    in MEMBER UPDATES

    Posted

    Thanks lou,pam,Karen 

    I had some seizure activity this morning it only lasted for approx a minute I rang the cancer team they weren't over concerned because they said it was normal to experience this after the radiotherapy so to keep lowering the dose of steroids and if they have to they will up the dose of antiseizure pills, so I feel a bit better knowing that it was expected, as for the chemotherapy so far I have only a slight ringing In my ears, if it stays like this it'll be brilliant, I really do have to sort out the sleeping and constipation it's terrible, thanks again to all of you who have supported me and given your love and prayers I really couldn't have done this without you all ,

    Take care Justin x 

    Mri scan

    in MEMBER UPDATES

    Posted

    Hi everyone 

    Just a quick update, I had my first round of chemotherapy today only 2 hours so not to bad compared to last time and it's only every 3 weeks, the nurse said it will be nothing like as bad as the last chemotherapy I had as that was brutal, feeling OK at the moment dropped the dose of dexamethasone to 4mg now so we'll see if seizure activity starts again, I still haven't got the mobility back in my right side so must be fluid or swelling which I always thought the dexamethasone steroids were for so I'm not sure why they want me off them so badly, I'm going to have to try and build up some strength I'm so weak and tired all the time and still can't sleep properly, 

    Hope everyone is well take care Justin 

    Mri scan

    in MEMBER UPDATES

    Posted

    Thank you for your messages rikke and pam,

    I'm sure now I can almost take any treatment thrown at me lol, I just want a bit of good news and my life to return to some normality because I was so active this is terrible and it does make you wonder what is the point in living like this If you can't do the things you love doing ,hopefully this treatment does the trick and I can have a good summer x I hope your both well 

    Take care Justin x 

    Mri scan

    in MEMBER UPDATES

    Posted

    Hi everyone, 

    I had the meeting today with the cancer team and I start the chemotherapy on Monday 4 cycles of carboplatin and pemetrexed once every 3 weeks, if it works well i can have the pemetrexed as a maintenance drug to try and keep it at bay , i have to drop the dexamethasone dose again but unfortunately my right hand side mobility is not great so I can't imagine what it will be like if I come off them altogether, they said they will try and sort out my sleeping problem aswell, I'm sort of glad to start the treatment as I would like to get it over and done with now but just worried that it won't work like majority of the other stuff, I have another scan booked for a couple of weeks from now and another in three months time, 

    Hope your all well Take care Justin 

    Mri scan

    in MEMBER UPDATES

    Posted

    Thanks pam 

    This is tough journey isn't it one thing after another I'm really sorry to read that your going through more of it,I wish we could all catch a break for a while it's just relentless, 

    I did tell the cancer nurse and the oncologist there's not much point telling me anything because I don't take it in its all above me lol, 

    I hope everything goes well for you all the best Take care Justin x 

    Mri scan

    in MEMBER UPDATES

    Posted

    Hi everyone 

    Just a quick update, the oncologist rang me today and said that because the symptoms get worse when they try to reduce the dose of dexamethasone they want to start chemotherapy in a couple of weeks instead of waiting for a month or six weeks, I didn't think that chemotherapy crossed the blood brain barrier so not sure what good it will do, it's a shame because my right hand side mobility is getting better but only when I'm on the higher dose of steroids, 

    Hope your all well Take care Justin 

    Found something small in lung after CT scan

    in MEMBER UPDATES

    Posted

    Hi kelvin 

    Try not to worry until you get all the results I know it's difficult but you can't change anything the scanziety is definitely a real thing and really is a terrible time, it's great news about the shrinking and the treatment working so even if there was something else atleast they know it's targetable, 

    Goodluck with everything and my love and prayers are with your mom and you take care Justin 

    Was just trying to live my life……..

    in MEMBER UPDATES

    Posted

    Hi barb

    I know aswell as the rest how difficult this journey is for us,the waiting for results here in the UK is typically 2 weeks and it can be the longest 2 weeks ever but I've kind of got used to it now, I really hope it's nothing to worry about and that your oncologist is right and it's nothing to worry about, you know your body and if you feel at all different then push for testing ,

    All the best Take care Justin 

    Strange symptoms

    in MEMBER UPDATES

    Posted

    Hi lily 

    So sorry your going through this, the fatigue is terrible I'm so tired its unbelievable they said its all to do with the treatment to my brain tumor and could possibly take up to a year to get over it but I don't think I felt like it before i found out about the tumor so i wouldn't worry to much until you get some answers from the oncologist, I really hope you start feeling better soon,

    Take care Justin x  

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