[tomParticipant]

Good morning Lucy and hubby….
Welcome to the group, and yes am sure it will get better they just need to get the dose/treatment correct as not one drug suits all…but many many more treatments being released often……

I have had myeloma since 2008/9 and am on fourth line off treatment and have to say I am doing good…..I am 64 years young…feel free to ask any questions not one are silly nor unimportant…..

Onwards and upwards

Tom xx

[tomParticipant]

Good morning Solly
I am pleased this thread has given you hope. As for insurance I will see if I can attach a link to the ones we use…I used…..nowicantravel

cant add the link am afraid….but good luck getting insurance and enjoy your holiday back home xxx
Onwards and upwards

Tom x

[tomParticipant]

Hi Maggie
Good morning, yes still able to have a few drinks am pleased to say lol. But have to wait three days after my infusion, didn’t drink much at all whilst on weekly infusion as after my three days it was Sunday ….then I had none on Monday as I had to do bloods on Tuesday for my weekly infusion on Thursday….so decided to be drink free…..from November until Christmas, as I had a longer break due to bank holidays.

It’s better now as the treatment has moved to every two weeks now…..so yep a wee vodka and a few beers, and the odd glass of red is good for me…
Pleased hubby is doing well please give him my best wishes……
Have a great Sunday….I can have a drink today lol
Onwards and upwards

Tom xxx

[tomParticipant]

Hi Leza. It’s not a problem, ask away and if I can answer I will…but as for fifth line I haven’t looked or asked about that…as am sure by the time this treatment stops working their will be newer treatments coming through it’s like everyone is trying to find a cure for myeloma and things are moving along nicely…..the CAR T CELL THERAPY is looking good, started trials in Leeds, but doing it for children with blood cancers first….but that looks great….
Try not to look to far ahead..I don’t I live for today….and wait till I need to think ahead when the time comes, I find it easier, as I have had this for 10 years now so have learned to live with it and take it as it comes….
Feel free to ask me anything I will answers you honestly…
Onwards and upwards

Tom x

[tomParticipant]

Liza
It’s no problem at all…..always here to help…..and you know where I am…onwards and upwards

Tom xx

[tomParticipant]

Morning Leza

I have had two auto SCT…I am on my fourth line of treatment and that is Daratumummab….I am on my treatment every two weeks, starts on weekly for 8 weeks then every two weeks for 8 weeks (I have just had my third infusion on this one) then it goes to monthly infusion until it stops working or I get too many bad side effects….have to say it’s treati me really well….fingers crossed for your present treatment and it’s a smooth ride with it…..but if you have to move onto your fourth, if it’s like mine it will be good….Onwards and upwards

Tom

[tomParticipant]

Hi Jataylor
Yes my veins are hiding ones lol..but thankfully we have nurses that normally find a good one, never been let down yet.
Your first one usaly gives side effects, tell them straight away, they will turn infusions off and pretreat those side effects…and all being well you will then s@il through all the infusions…my side effects started off with a cough….I told the nurse who came to see and within seconds my nose/eyes started to stream like a tap was turned on….soon sorted with more premeds..now at the end of my weekly infusions and starting my two weekly ones…..
Good luck on yours….at consultant next Thursday to see how it’s gone…..then start my two week ones….

Tom onwards and upwards xx

[tomParticipant]

Hi pat
Sorry for delay in reply….as for me I won’t sleep properly for a few days..but I put that down to the Dex effect though lol pleased David is doing well….xx

[tomParticipant]

Hi patsy
I don’t get sleepy, but the lady next to me having the same treatment..(week behind me) always nods of …..is it me that bored her lolol…
Good luck with David’s treatment….

Tom xxx

[tomParticipant]

Hi team Daratumumab
Hope all running well ?
Jean I hope hubby is soon on the mend….it’s a worry I know….
Well I had my sixth infusion last Friday…throws my diabetes all over the place to be fair….bloody Dex lol
Anyone got any tips for dry mouth ? It’s the worst and forces me onto orange and lemonade to help quench the thirst.
Apart from that doing good….blood results (when I get them) are looking good but I am not looking it them as a lot are missing so it’s incomple, will wait till I see Top man in January…
Anyway hope yous all had a great Christmas and I would like to wish you all a happy and healthy new year……onwards and upwards xxx

[tomParticipant]

Hi Pat…
Well me I am doing pretty well with it so far..though the lack of sleep hasn’t got any better haha….still early days am sure am not thinking too much on weather itbis or isn’t working till after the new year.

Pleased it went well for David it will only get better, I think it’s less toxic so that’s a blessing…fingers crossed it soon settles everything down….

Tom xx

[tomParticipant]

Hi patsyann
Pleased it’s all sorted and let you know I am sat having my third Daratumab.
So far it’s going great, my first one was a long day and they provisionally booked me a bed on the ward (just in case) but the 2nd one went faster as I had no side effects and it was a smaller bag. Good luck it’s good stuff onwards and upwards XX

[tomParticipant]

Hi patsyann
Yes went well if that’s the only side effect I have to witness and a drop in my Pp’s I am happy….
Hope you soon get the results yiyr waiting for.
The wedding anniversary was a bit dull what with being in hospital all day we gave it a miss lol.
Take care x onwards and upwards
Tom x

[tomParticipant]

Thanks for the replies Stuart, and thank you for looking into it….am banning myself from emojis haha

Tom

[tomParticipant]

Hi Jaime
It’s great to see you have a local group that’s getting involved, am sure yer mum is very strong willed so it’s best they just pop in for coffee and a chat, it will be great if it all works out, it should give you peace of mind as you go through all this…..onwards and upwards

Tom x

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