Thanks Keith for taking the time to write on here when you've been through all the mill and are only just discharged!
Sepsis wasn't something I've heard of, so I've now looked it up. I did know to watch out for a temperature but I didn't really know why – it's important to know about the speed and potential severity of it, plus the fast pulse…[Read more]

Hiya,
It's Scotty, and her new email address is Scotty@brandmojo.co.uk
Helen

Score!! Great result. Well done those cells.
I also had a bumper harvest in October and I was really knackered for quite a while afterwards, which I'd underestimated… No idea if it's more tiring if you get more but might be the case as the bone marrow has clearly gone into overdrive pumping out stem cells. So take it easy this week 🙂 not…[Read more]

Ooh, watch it Tom, I'm 33 – might be worried about looking 40! ;-D
Only joking… thanks loads for all your cheery posts. I don't write often but I've read lots of them.
Onwards and Upwards into 2013 and beyond! 😉
Helen

Well done Phil and his veins! I hope the side effects are all in check after the Melphalan. What a shame about the room… hopefully his room-mates are good company and not snorers!! It's funny how each hospital system is different like you say, but do feel entitled to make sure he'll be shuffled back into a private room when his immune system is…[Read more]

Happy Anniversary from one Helen to another! Great name by the way 🙂

Thanks loads for posting, it does really help as a newbie on here to hear good news. Hooray for another milestone! And I don't know how you've managed to put up with the whooping cough for so long, you must be a real trooper. I've been at home for a week with a cold and…[Read more]

Hi Megan,

Thinking of you and Phil! So glad he did get a bed – it would have been very frustrating to be all set up and then to go home again. And yes, he needs a private room, one of the 'perks' of isolation…. Do you have to put on a lovely pink plastic apron to go and see him? My nieces were quite keen on those when they came to visit me…[Read more]

Hi Jean,
Good luck! I had my harvest in October, and unlike Megan and Phil I had the opposite problem of too much info… The transplant coordinator nurse sat me down and told me everything very clearly and then the consultant came in and told me the same things all over again 🙂 He is German and very meticulous! They also gave me a DVD called…[Read more]

Hi Tom,

I'm a fellow Londoner and also had PAD treatment, 4 cycles from June to September, and then a stem cell harvest in October. i'm not doing an SCT, due to the study I'm on and the fact I've had a Complete Remission.

You must be gutted to be having to go through it, but PAD seems to be a very effective sledgehammer, and it's definitely…[Read more]

Hello,

This is second hand but I wanted to pass on the positive experience of a nice guy who I've met many times in clinic. He was initially diagnosed aged 34, which is now 17 years ago. He had a first remission of 7 years, and then a second remission of 10 years! The doctors told him it would be shorter the second time (which, as people have…[Read more]

Very useful post although a bit depressing to see the answers… I've been really looking forward to being able to go swimming again when my Hickman line comes out 🙁
I don't think I'm going to be on any maintenance but I guess will need to be careful of infection risk after chemo for a fair while (or always?)
I wonder whether small pools in…[Read more]

Dear Dai,

I hope you're feeling better and just wanted to say thanks for all the great posts you put on here. I've read lots of them! You're really helping a lot of people. I'm currently doing my stem cell mobilisation, ready to try the harvest on Monday. No idea if the troops are lining up but I hope so… I guess I'll find out if I get the…[Read more]

Gosh Mika – aged under 20 and 26 years ago! That really is incredible. Thanks so much for sharing your story on here, it does really help to hear positive stories. And your English is excellent!!
Helen

Hi Emma,
Great blog – I just had a look! I recognise a lot of what you're saying. I'm 33, also on the PADIMAC trial (as is Alex who also just said hi), also a civil servant, even have a May birthday 🙂
Hope your treatment goes well. I started in June and have finished the chemo bit, having the stem cell harvest quite soon. Happy to answer any…[Read more]

Thanks Eve. In fact I went in for my knee check-up on my 33rd birthday… But well, c'est la vie!
I'll stick a photo up soon, just doesn't work from my iPad and need to get laptop out … Maybe tomorrow!
Helen

Hi Keith,

My treatment includes Dex (on it now in fact!) I was told not to eat sugary stuff (easier said than done) as it can cause _temporary_ diabetes like effects. So hang on in there. Not permanent, I think.

No wonder you are feeling crap, but it will pass I'm sure. When I've been physically low (e.g. Last wek neutropenic) my positive…[Read more]

Hi Alex,

In brief (writing late again!) yes I'm happy, for the two reasons you mention: velcade is supposedly more active treatment and this was a way to get it as front-line not just after relapse, and you get more monitoring. After my first cycle, tests showed I had zero in both blood and urine (I have bence-jones version so just have light…[Read more]

Hi Judy,

I'm in the same boat! I am also on the PADIMAC trial, and I start my 3rd cycle tomorrow. I learnt today from blood and urine tests that even after 1 cycle it had great results for me… I know it's an individual disease but I hope that gives you some encouragement. I haven't had too many side effects – the dexamethasone (steroids) have…[Read more]