Hi Ali and Vikki
This infection lark is a nuisance, I'm so grumpy just before the next one rears its ugly head, and sadly I never realise until its on top of me. I'm beginning to see a pattern here, when I do lots and lots of stuff, then rest a bit more – then I seem to pick things up. Had a lovely christmas then a cold, now conjunctivitis and a…[Read more]

Hi Tina

Great to hear about the PPs. It is always encouraging to read positive things. Good luck for the trial everything crossed for a loooooong remission 🙂

Love Jean x

Hi ANdy
Superstition or not fingers crossed that this treatment is the one for you as you must of read SCT is not now concidered an option by a lot of at least American doctors less is more! SCT was not an option for me either so i am hoping that first CDT which gave me 3yrs6months remission now on Velcade Sub Q hope it works just as long have…[Read more]

Hi Rob

Do not worry. About the tube it is the least of your worries,one would have been fitted later for SCT it actually makes your life a lot easier,on normal treatment they go in to veins every time often they collapse,some like my husband it takes a number of tries,so a centreline sounds much better.

If you are looking at all…[Read more]

Oof, I remember that. The doses of steroids (dex) on PADIMAC are like that, 40mg and 4 days in a row which does mean that afterwards you have a massive comedown, like you say. The only 'good' thing is that you learn which days it will happen, and accept that on those days you really don't plan to see anyone or do very much at all… Ideally get…[Read more]

Hi Heather,
Just a quick hello as I'm also at St George's (though now just for check ups, I've finished treatment). I wanted to tell you that I've been very happy with my care there. I had velcade as part of my treatment although I guess overall it may not be the same regimen. They are also incredibly friendly and helpful on the daycare unit, as…[Read more]

Hi Paul,

I'm a similar age (33) and also had a spell in hospital (4 weeks) then PAD. I didn't go on to do SCT so I'll leave others who can tell you more about that! But probably where I'd be more useful is being in a similar boat life-wise: it sounds like you're also single, and obviously sometimes that's a different when you're reading a lot…[Read more]

Hi Deb,
I'm another PADIMAC-er, not UCL but St George's (Tooting). I also went into hospital on my birthday (33rd) at the end of May and had the cancer diagnosis two days later. Fast forward 8 months and I'm now free of treatment, and can actually see what people mean about feeling normal – it really is possible! I've also met a very nice guy…[Read more]

Hello Maureen

velcade is not so bad as for dex i take 20mgs twice a week Ians consultant can ajust the dose if needed but its best to try and take the full dose if possible he may be able to tollerate 20mgs
Regards Jo x

Hi liz

Now Slims in remission and off treatment,I find I am posting less,but I like to keep up with what is going on also if you have not looked at the site for awhile you do loose track of what is happening to people,plus all these new people coming on,if they felt anything like
I felt when Slim was first diagnosed,they need lots of boosting…[Read more]

Hi Rob

Just to welcome you to the site and wish you well on your MM journey.

Wi th you being based in London you will have some of the best experts and treatments available ,we are Kent ,but my husband went to Kings for his SCT,also to. Have a choice of trails,my husband did MyelomaX1 trials,CTD randermised,which did not work,so straight on…[Read more]

Hi Everyone

Well we made it,and when I learn how to put pictures on here,you might see some.

Has taken a fair time to get over the flight home,at the moment Slim is doing better than me,he,s waiting on consultant for the ok,it's a bit of a worry every 2months wondering if its all ok,as Slim is one of these people that it no longer shows…[Read more]

Hi Maureen

My husband did 6 cycles after CTD failed for him,tolerated it very well,went on to SCT and is now in remission .hope every thing goes well with your husband.

Time soon passes,the worst thing was having to go to the hospital bloods in the morning then home and back again twice a week,use to look forward to the week off.Eve

hello Maureen

I am on velcade at the moment I have it Sub Q an injection once a week into my stomach on day one 20mgs of Dex and cyclophosphomide 250mgs some people have a higher dose of this but i need a renal dose(damaged kidneys) day 2 another 20mgs Dex this regime isnt so bad and i am coping well with it the only problem seems to be a drop…[Read more]

Tom I got from MMUK I think it was Ellen that I emailed. It got very tattered so I got another one. I find it very useful it has 10 different section, some examples are key myeloma terms, appointments, questions to ask your doctor and for me blood tests results. It gives you what the normal readings on and has a section where you record your…[Read more]

Hi Stevo

My belly is not very bruised only haveing Sub Q once a week so not so bad
I always take the DEX as early as poss in the morning with brekkie so i do get a bit of sleep at night no sleep if taken later in the day kidneys seem ok but have a real app next week its always like the sword of damacles hanging over me when i go there…[Read more]

Hi Keith

sorry to hear the treatment hasnt worked CDT worked really well for me its a much gentler regime so it may really suit you Thadidomide is a bit of a wonder drug it gave me 3yrs 6month remission and not too many side effects just a bit of Pn which wasnt so bad it also gives you a bit of sleep at night even with the DEX I got at least…[Read more]

Dear Wendy
I'm keeping my fingers crossed for you that this is not a relapse, but a blip. I hope that your training for the triathlon can continue uninterrupted. Did you do all this exercise before the myeloma or is this a new hobby?
Love Helen

Dear Keith
Like Eva and Dai I'm really sorry to hear this, I hope CDT offers you some space.
And Dai it's good to hear you are handling the bendamustine well enough to get your writing done.
Love Helen

Hi Ali
A impressive response from a 9 year old, they can be so astute when they want to can't they? I'm on my week off Revlimid and feel much more like eating again, now catching up on the advent calendar and the Christmas chocolate that I couldn't face at Christmas!
One thing I do notice is when I'm about to get an infection, I don't feel like…[Read more]