Justin1970 Posted February 18, 2023 Author Share Posted February 18, 2023 Hi chuck Thank you for your message it means a lot knowing that people care, hope your well take care Justin catlady91 and LouT 2 Quote Link to comment Share on other sites More sharing options...
Izzy Posted February 18, 2023 Share Posted February 18, 2023 Wow !! At last the good news that you so deserve Jus, it's been a tough 18 months without a lot of respite, you've been incredible in your unwavering response to all the gruelling treatments they've put you through but you've kept going throughout, we are all so very proud of you and your bravery and courage, time now for a well deserved break and a bit of you time, also thanks to all of you on this incredible forum for all your love and support you've shown my wonderful son it means so very very much to us all as this is a very lonely journey for him even tho we are all here around him, and Jus I Love you so so much and you've got this xxxx all my love xxxx Mum xxxx Justin1970, catlady91 and LouT 2 1 Quote Link to comment Share on other sites More sharing options...
Justin1970 Posted February 18, 2023 Author Share Posted February 18, 2023 Thanks mum I couldn't have done any of this without you all with me, thank you for everything love you loads xxxx catlady91, Tom Galli and LouT 3 Quote Link to comment Share on other sites More sharing options...
Justin1970 Posted February 23, 2023 Author Share Posted February 23, 2023 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 LouT, Tom Galli and Izzy 3 Quote Link to comment Share on other sites More sharing options...
Karen_L Posted February 23, 2023 Share Posted February 23, 2023 This is a good question to ask the oncologist. I hope they are going to keep the steroids going at a helpful level. K Justin1970 and LouT 1 1 Quote Link to comment Share on other sites More sharing options...
LilyMir Posted February 23, 2023 Share Posted February 23, 2023 Make sure you ask about why chemo if it does not make sense to you Justin. Also, do they have a tumour board where you are treated? Having more than one opinion in such situations is very helpful. LouT, Tom Galli, BridgetO and 1 other 3 1 Quote Link to comment Share on other sites More sharing options...
Justin1970 Posted February 23, 2023 Author Share Posted February 23, 2023 Thanks for your messages My wife rang the cancer team earlier and asked a lot of questions, the oncologist is going to ring me and explain everything to her because I apparently don't listen lol, Justin LilyMir, LouT, BridgetO and 2 others 2 3 Quote Link to comment Share on other sites More sharing options...
Pstar Posted February 25, 2023 Share Posted February 25, 2023 Sorry you will have to start chemo soon but your oncologist must feel it will help. Glad your wife will have things explained to her. You sound like my husband lol. Hoping it all goes well. Justin1970 and LouT 2 Quote Link to comment Share on other sites More sharing options...
Justin1970 Posted February 25, 2023 Author Share Posted February 25, 2023 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 Karen_L, LouT, Pstar and 2 others 5 Quote Link to comment Share on other sites More sharing options...
Justin1970 Posted March 3, 2023 Author Share Posted March 3, 2023 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 Izzy, Pstar and LouT 3 Quote Link to comment Share on other sites More sharing options...
RJN Posted March 3, 2023 Share Posted March 3, 2023 Hi Justin, It is a rough journey you are going through Justin. Sending you all the best of thoughts, and hoping the treatment itself won’t be too tough and will bring you back on track. Cheers, Rikke Justin1970 and LouT 1 1 Quote Link to comment Share on other sites More sharing options...
Pstar Posted March 4, 2023 Share Posted March 4, 2023 Praying that it all works out with the chemo. You have really been put thru the wringer with this. Keep us posted. Justin1970 and LouT 1 1 Quote Link to comment Share on other sites More sharing options...
Justin1970 Posted March 4, 2023 Author Share Posted March 4, 2023 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 LouT and Pstar 2 Quote Link to comment Share on other sites More sharing options...
Izzy Posted March 4, 2023 Share Posted March 4, 2023 Everything xd for a good result Jus you so deserve it, I know it's been a tough journey but here's to a better year and future, if anyone can beat this you can, I love you so very much and hate you being so sad and hurting like I know you do, bring on the summer, Love you xx Mum xx Justin1970 and LouT 1 1 Quote Link to comment Share on other sites More sharing options...
LouT Posted March 4, 2023 Share Posted March 4, 2023 Justin, I'm also glad you're getting treatment. You know what Tom would say if he posted today, right? "Stay the course. If I can live so can you." My prayers go with you on this new treatment journey. Thanks for keeping us updated. Lou Justin1970 and Tom Galli 1 1 Quote Link to comment Share on other sites More sharing options...
Justin1970 Posted March 6, 2023 Author Share Posted March 6, 2023 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 Izzy, LilyMir, LouT and 1 other 3 1 Quote Link to comment Share on other sites More sharing options...
LouT Posted March 6, 2023 Share Posted March 6, 2023 Justin, Hang in there buddy. I'm glad it's not as strong (translation: brutal) as last time. All digits crossed for you to get through this with the least amount of side-effects possible. Lou Tom Galli, LilyMir and Justin1970 2 1 Quote Link to comment Share on other sites More sharing options...
Pstar Posted March 6, 2023 Share Posted March 6, 2023 Hi Justin…glad the chemo is short and sweet this time. Praying that you get the mobility back and the swelling goes down. LouT and Justin1970 1 1 Quote Link to comment Share on other sites More sharing options...
Karen_L Posted March 7, 2023 Share Posted March 7, 2023 So glad the chemo is not as bad as before. I’m thinking of you often Justin. K Justin1970 and LouT 1 1 Quote Link to comment Share on other sites More sharing options...
Justin1970 Posted March 8, 2023 Author Share Posted March 8, 2023 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 LilyMir and LouT 1 1 Quote Link to comment Share on other sites More sharing options...
LilyMir Posted March 8, 2023 Share Posted March 8, 2023 Hi Justin, I will start taking Zopiclone for sleep, I too cannot sleep well. For constipation, I used to take Senokot during chemo and it helped me a lot. I am so sorry you continue to suffer but keep your eyes on the prize, hopefully things will improve with chemo soon. LouT and Justin1970 1 1 Quote Link to comment Share on other sites More sharing options...
Justin1970 Posted March 8, 2023 Author Share Posted March 8, 2023 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 LouT 1 Quote Link to comment Share on other sites More sharing options...
LilyMir Posted March 8, 2023 Share Posted March 8, 2023 Haha, exciting times and a chance to adopt a totally different persona or two with the hair pieces! I am sure you will have fun! (I too wake up so many times at night, not sure what that is but likely terrible stress/anxiety manifistation?). I will undergo a sleep study next month so we can check my sleep patterns and of O2 dips while sleep (thanks Tom for the feedback on that). Justin1970, Tom Galli and LouT 2 1 Quote Link to comment Share on other sites More sharing options...
RJN Posted March 8, 2023 Share Posted March 8, 2023 Hi Justin/Lily, Just on the zopiclone - I had some and they did nothing whatsoever for me except making me sluggish and giving me a bad taste in my mouth. My sleep patterns were similar to what you describe, being asleep for half an hour at a time throughout the night, and feeling like I was suffering from constant jet lag. In my case, my sleep got better and the zopiclone started again working after I started taking HRT (hormone replacement therapy). Now I know this is of no use whatsoever to you, Justin, but I can’t help thinking that with all the treatment you have gone through your hormones might be out of whack, and perhaps it is worth asking to speak to a haemotologist? Just a thought - I just feel that with us there is so much going on with our bodies that it’s worth sharing stuff that has worked, even if far fetched…. I hope you get a grand new look, Justin. Rikke x Justin1970 and LilyMir 1 1 Quote Link to comment Share on other sites More sharing options...
RJN Posted March 8, 2023 Share Posted March 8, 2023 Sorry, I was just thinking an endocrinologist might be the right referral…. Justin1970 1 Quote Link to comment Share on other sites More sharing options...
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