Yes it feels cumulative/ I’m getting side effects I didn’t get before. Thank goodness we’re both standard risk and only 4 cycles to go through. I’m on the countdown now, 30 days left of induction, so it will soon be done and a bit of a pause before the next steps.
Re the dex, I wondered the same, and asked my consultant if I could/should go up to 40mg as I didn’t want to do anything that jeopardises my recovery, just because I couldn’t sleep.
He said that I couldn’t increase it on the trial now anyway (can only be decreased if not tolerated) and given I still only get 3-4 hours with a sleeping tablet on a dex day, it’s fair to say I don’t tolerate it well so it wouldn’t be advisable. I still don’t know if I potentially was risking anything but my results have been good so no need for changes, all about how well you’re responding to the regime I think.
He also made a passing comment that a steroid free treatment would be better for all really, which I didn’t dig into because I’d already heard no!
If you feel you are not tolerating the dex, have another conversation- get in touch with your team ahead of your next clinic appointment and flag how you are feeling.
Good luck lovely- are you all prepared to talk to your kids next week? Xx
@Spangleystar you are doing so well! 30 days left? Wow, it’s quite a trek isn’t it x Definitely think there are cumulative effects and hopefully when induction is over we have a chance to get our heads back and feel more ourselves again, I think I will have to reduce the dex, Mon/turs is just a nightmare for me with it, I get on the comeback from that but peak discomfort from the bortezomib jab hubby was ready to take the day off and just be with me today, there’s so much going on (awkward brother over probate) plus getting my head around all this, but at least I know it will happen now, you don’t imagine getting affected so much by it all x yes thankfully both standard risk, although I now know I have a mutant gene so I don’t know how that will effect the offs x I guess it’s wait and see x yes still on course to tell the kids on Sunday , my heart is not ready for that xx
@Spangleystar ‘effect the offs’ I ‘think’ it means effect the outcome it’s a dex off day, forgive me, yes I guess we all do have a mutant but this has a name, an t11:14, no I’ve not listened to that, I’ll give it a go, I tried today to talk to MacMillan online chat, but just no good, I didn’t really feel supported, but got good advice regarding PIP,
Mine is translocation 11; 14 too. Can’t pretend I know what that means though, nor do I need to as long as the doctors do
Have you been into your local Macmillan centre? They can get you a counselling appointment as well as help with any of your family who may need support. Sometimes these online chats are a bit ‘botty’ laughing as that meant something else before AI! Xx
That’s crazy!! Yes I’ll go in next time I’m there, or even try a different helpline, I’m not good face to face at the moment, I’m just living scared and it’s not healthy for me or those around me
No crazier than us having it in the first place- it’s the most common rearrangement.
This feels like crisis time, you’re a day past your dex so should be trending up - you really need to speak to your clinical team urgently.
I can’t help there but perhaps you need to give yourself an information blackout for a while, I get the sense that you are pouring over details but because you’re not a myeloma medic things seem abnormal or worse than the reality that most people in this situation face. It’s like doom scrolling and feeding the beast. Please don’t feel judged by this comment, I promise it’s coming with pure intentions, it’s hard to watch this play out a lot and not offer suggestion.
Hi lovely star I’ve been feeling a lot better this week thanks, but just waiting on triage now how are you getting on lovely? X have you finished your cycles now? X
Hopefully you’ve told your kids and now can start to talk about how you are doing - I found the burden of ‘the secret’ very heavy.
Not yet, but tomorrow is the start of C4 so 22 days including today, the countdown is on!
Had a call today with UCLH the initial Stem cell transplant convo, and a couple of appointments have since landed. Looks like there’s a couple of outpatients appointments for tests, picking up injections and then ‘harvest’ before you actually go in for the transplant a couple of weeks later, likely May, so it’s more protracted a process than I’d realised. I need to figure out transport - this is when being ‘out in the sticks’ is a royal PITA One of my appointments is 8am but there isn’t a train that can get me there for that early in the morning. The consultant said he would get a nurse to call me re logistics, so all will get worked out in time. He said it’s only one day of chemo ahead of the ASCT and that days 1-2 after are usually ok it’s the following 5-7 that are grim, that’s enough info for me! All I keep thinking is every day is one step closer to being in remission- that will hopefully get me through xx
Star ! 21 days left now! Hope today went well for you x you are powering through this! May =remission! In fact you may be in remission even before your Stem cell transplant xx yes living rural is awful isn’t it?’ I sympathise as I am too, I’ll be 60 miles away from
Home and won’t be seeing hubby until he picks me up to bring me home, wrll in the flesh anyway, obviously be FaceTiming xx
Texted son last night to arrange a visit Saturday and he instantly knew something was wrong, so we told him over a phone call all the hopeful stuff, he came to see me today and we had lots of hugs, chats and no crying, just got to see my daughter now on Saturday, but my son was the hardest x
I’m very spotty! I’ve had a reaction to the co-trimaxadol so they are having to change the meds tomorrow, I don’t know how you are dosed on them, but mine was 2 a day on Mon/weds/fri
Just on the way there now, late appointment today. Imagine remission prior - that would be awesome! Come on universe BB’s put it out there now! Let’s have that for both of us, please and thank you
Well done in having the conversation with your son, it gets easier when you can talk about it with the people you love.
Yep no visitors for me either, it’s just too far, a really long and expensive journey for them to come up and I’m also not sure I want to put my teenage boys in the position when it will all look very real, they’re coping so well because at the moment I seem ok. FaceTime/ make up/ wig - has to be a better option! They’re used to not seeing me for a couple of weeks as I do a fair bit of work travel so they’ll be fine, but my dog will definitely be sulky when I get back
Yes twice a day mon/weds/fri with the co-trim, thankfully no skin repercussions, I haven’t had to change out any of my skin products, which is good as I typically have very sensitive skin. I have found anthisan cream a godsend for my injection site welts! Before anyone tells me off for saying that - the advice came from my trial team
Good Luck with your daughter lovely. You have got this xxx
@Spangleystar hope all is going well lovely xx I think cycle 3 maybe on hold for me as my skin is still so bad, coukd be the co-trim or the Len I’m a mess!
Ooh no! Have you had any reaction to antibiotics in the past? That looks irritated and sore - have they suggested antihistamines or anything else to get you some relief?
@Spangleystar theyve given me piriton for 5 days 3x daily bit dosing at 4am 12pm 8pm to fit them in, and they are sedating, so I’m completely knackered constantly, but may have to carry on, I’ll ask for non-drowsy ones going forward, as this isn’t moving, given me centreban to put on, just had enough now plus it’s dex downer day, seeing consultant on Thursday, so will see what happens moving forward, but I think I’ll be on a break from trial till skin clears x how are you doing? X
Yes I’m ok thanks lovely, tomorrow will be 15 days left of cycle 4, so it’s flying by. Am looking forward to a treatment break, I think it’s only a couple of tablets in the in between phase.
How were your end of cycle bloods? Hopefully all is going well and that will help you deal with the rubbish days, dex is wonderful and awful all at the same time! I get drawn to the ‘this too shall pass’ mantra when I’m stuck there. Keep your chin up lovely, things will get better xx
you are doing so well! 30 days left? Wow, it’s quite a trek isn’t it x Definitely think there are cumulative effects and hopefully when induction is over we have a chance to get our heads back and feel more ourselves again, I think I will have to reduce the dex, Mon/turs is just a nightmare for me with it, I get on the comeback from that but peak discomfort from the bortezomib jab 
hubby was ready to take the day off and just be with me today, there’s so much going on (awkward brother over probate) plus getting my head around all this, but at least I know it will happen now, you don’t imagine getting affected so much by it all x yes thankfully both standard risk, although I now know I have a mutant gene 
so I don’t know how that will effect the offs x I guess it’s wait and see x yes still on course to tell the kids on Sunday , my heart is not ready for that xx
2 questions!
‘effect the offs’ 
I ‘think’ it means effect the outcome 
it’s a dex off day, forgive me, yes I guess we all do have a mutant but this has a name, an t11:14, no I’ve not listened to that, I’ll give it a go, I tried today to talk to MacMillan online chat, but just no good, I didn’t really feel supported, but got good advice regarding PIP,
I’m a mess!
plus it’s dex downer day, seeing consultant on Thursday, so will see what happens moving forward, but I think I’ll be on a break from trial till skin clears x how are you doing? X