Hi bb
I deleted my post as I was looking at the wrong T 
that’s rushing to do yoga
I don’t have any genetic changes
I have boney disease which drives my myeloma.
Even though my numbers are stable I do have active lesions so I’m having an MRI to see how much damage they are doing. This will decide wether I start normal fourth line treatment or I can wait for my PP/light chains to reach the minimum protocol for the trial
Right back at you BB xx
It’s so complex MM, the more I learn about it, the more I realise how little I know xx
It’s all so complex isn’t it @2DB I’m sorry you are having to get back on the treatment treadmill, we are here for you, as you have been here for us 
it’s a beast isn’t it @Spangleystar as soon as you think i know ‘enough’ I read a new scenario and my head goes into overdrive! 
I think personally I have to be aware of ‘what ifs’ but don’t dwell on them, I was in tears here last night as I asked K what would he do if I wasn’t here 
it just came from no where, I think it’s because I was doing some of the emergency planning the government wants us to do, and I usually am really practical and have stuff sorted. Simply because of where we live, but it’s all gone to pot while going through all this other stuff
and now mm has added another layer to ‘be prepared’ 
so that’s my project this week 
are you back to work this week lovely or waiting until after your 1st treatment? Xx
I never read the side effects - I just mention anything I get, that way I avoid any psychosomatic side effects. I don’t know why there is such a focus on telling you in person what they could be, give me a reference and if I get any side effects I’ll look them up or let them know!
I have a weekly google alert and scan the headlines for medical papers, but never pay any attention to prognosis indicators because everyone responds so differently. I do it now with a sense of detachment, kind of strange really!
Emergency planning 
we’re 70% covered - solar for water heating, battery packs, wind up torches and radio, tinned food etc. What annoys me is landlines - for the last 10 years around here if you’ve had full fibre broadband installed (which I had to for work) they remove your separate landline and make you take voice over IP, so in the event of any power cut you have no phone line. Often if the power cut is weather related the phone masts will go down too, so you can’t use your mobile regardless of battery packs!
I’m sorry you’re having these waves of emotion, I’m sure it’s 100% normal - I’m just a bit of a hard face east end gal when it comes to me, can cry for anyone else 
. In a house full of males, tearing up creates awkward silence and is the quickest way to feel really alone, so I’d rather not go there! They’re good if I’m talking about it, but me crying freaks them all out and I don’t feel that it helps me either, it’s not even a release. I think that stems from childhood and the ‘stop crying before I give you something to cry about’
In terms of what they would do - K was ok as was D when we were in hospital, they would be ok.
Not back just yet, want 2 cycles under my belt so I can be sure I’m good with the new treatment. So much prep to do though, so much has gone on to get up to speed with. Xx
Awww bb I don’t use words like treadmill I’m
a positive word gal.
I’m just living life and myeloma is relapsing and remission I can’t change that.
Myeloma is so individual one size doesn’t fit everyone.
Thankfully we have so many treatments available to us that I’m on to the next one 
It is what it is a can’t give it back
Love that we are all here supporting each other
Choosing your language, especially self talk is so important @2db you’re so right. One of my lovely work friends is based in Atlanta and he spots any reference that implies self- negativity, obviously he’s working with a bunch of self deprecating British folk, so it’s a common conversation. ‘Why you guys so down on yourself all the time’ even if you only say something like ‘I must be daft!’
He’s onto something though, he’s even more positive than I am!
I love that we all have each other, it’s so great to have friends who are on the same journey. Thank you my lovely xx
@Spangleystar @2DB morning my dears, received my re-vaccination schedule on Saturday from The Christie, have to organise with practise nurse, due to start in December, 6 months post Stem cell transplant, was this the same for you? As some people don’t have for a year,
No unfortunately aside from flu and COVID which are as soon as available- I have to wait 1 year since Stem Cell which is v annoying, but again, differences in hospitals!
I’m assuming that varicella when you have it will mean no more need for aciclovir? Did they say? Xx
Oh yes that is annoying? I wonder why there are so many differences? I’m no way having them all on the same day, people in my group are advising split in to 2 weekly phases, so I’ll see if nurse will accommodate that for me, the shingles one, some people stay on both, AI 
is saying it’s better especially for the 1st year post_sct, but while on any active mm meds so that will be a question to be asked! I wonder if we stay on the co- trim, I think being in trial we are treated differently? Someone I talk to (nhs) had her fluconazole stopped at 3 months and someone on trial had it stopped at 8
Hi bb
As you are on a trial it maybe different for you
I had my baby jabs a year after Stem cell transplant because my GP didn’t have a vaccination scheduled
Baby vaccines I found ok apart from a sore arm.
Now I know how babies feel
I can’t have the MMR vaccine as I’m permanently immunosuppressed
Also while is was on maintenance I had co tri and acycland I still take it now because of my immunosupression
HPV was for a certain age on my list so I didn’t have that
I had flu
For my personal choice I have declined covid jabs
I’ve read that about the HPolycythaemia vera ('Polycythaemia vera ('PV')')? It’s more for under 25s I’ll have to question that one! I’m not having the covid one, don’t really want the flu, but think I’ll take it as a compromise do you have Ivg infusions to help? @2DB
Hi bb
No I don’t have iVIG as i haven’t been ill while im still shielding and have my risk assessment plan that those close to me when giving treatment etc wear a mask as i do.
HPV may be part of your trial protocol always worth asking if and why
Oh I definetly will, i have read that it also prevents , vaginal, throat and tongue cancer @2DB
I’ve only been on aciclovir since induction, no other meds. I think these are hospital differences rather than trial protocol xx
So strange the varying protocols hope you’ve had a lovely weekend and ready for Thursday @spangleystar thank you for your useful insights @2DB knowing you have had the flu and not the Covid has cemented my belief that it’s the right choice for me also xx hope my lovely ladies have a good week, love to you both xx
I hadn’t seen this reply ! I’m so sorry x no I don’t ever read the side effects purposely, just come across comments on groups and think, wow I’m lucky not to have them x gosh you are prepared! I really need to get a move on and get up to speed! same here with the landline, isn’t it just ridiculous? We’ll have to learn morse code you are are so organised, could I ask if you carry any cards etc on you when you go out to indicate the MM, irradiated blood, blood thinners etc? I’m carrying around my paperwork even if I just go to the shop, and I don’t want to feel I have to be constantly on edge in case something happens to me ‘out there’ especially if and when I start going out on my own, other than to the hospital, which usually involves patient transport anyway @Spangleystar
I’m not on any blood thinners @byrnebaby so for me it’s just the Radar trial card and irradiated blood card, both are cards in my purse, no further paperwork xx
Hello my lovelies @Byrnebaby @2DB can I ask your reservations or concerns with flu and covid jabs? I’ve never reacted to either, so was planning to have both, but feel like I’m missing something 
xx
