Hi Andy
Good to see you back on form again, are you getting out and walking to the pub yet or just rambling round the house? It’s not nice being so poorly but we are so at risk of infections with the dex and the pomalidomide, my neutrophils have been at 1 or less for a year now. I’ve completed a full year on pomalidomide now, started cycle 14…[Read more]

Dear Eve
I’m so glad to see your face brighten up this page, I’m trying not to be so addicted to the iPad and ration my sessions a bit, so I missed your post! And anyway since my last relapse my story isn’t really a ‘good news’ story so I’m more reluctant to post! I wish I had more of your bluntness.;) I can’t do Twitter and am banned from face…[Read more]

Hi Susie
Sorry this is so tardy, I don’t have any pps. My pp at diagnosis was 2.9 and light chains 800. But bone marrow around 60% myeloma with some lymphoma characteristics … Such is the individuality of the disease. Since then when I relapsed treatment started again when my light chains got to 30% of the diagnosis number and bone marrow at…[Read more]

Hi Jan
I’ve just been reading your post to Maureen and see that you are now starting the Velcade, hope this all goes well, pace yourself with it, the fatigue I find is still very unpredictable. And go for walks with lots of tea stops! I did find it a bit nippy with the pn in the feet but it always settled down with the week off, and if you are on…[Read more]

Dear Maureen
I’ve not been on here for a while but I’m delighted to hear that Ian is as well as this, you must be very relieved and happy. Get all those holidays you missed booked and enjoy the sunshine.
Love Helen

Hi Andy are you better now? I’m languishing here with an awful cold, hoping it doesn’t materialise into anything worse! I’m about to cancel my lunch date and head back to bed- I hate feeling ill!
I’m on cycle 12 now and I’m still ok on it
Love Helen

Dear Jan
I’m sorry to hear about the move to treatment again- you will find it manageable but it’s such a blow to know that it has relapsed to this extent, even though it’s been on the cards for such a while. I found Velcade a bit unpleasant- it gave me peripheral neuropathy the 2 days after I had it, but always settled back to normal every cycle.…[Read more]

good evening gentlemen,
I have this trouble too, an assume dex is the problem, no pain but husky. My husband says it’s quite nice!!!!
Helen

Dear Susie
You are allowed to feel like this, it’s so overwhelming, just when you think it’s all going ok , you get clobbered again and have to start from square one, it’s a bit like snakes and ladders and it is hideous. I couldn’t believe I was relapsing after my SCT so didn’t ask for the numbers for 2 months – until I was told I had to be…[Read more]

Hi Mavis and Andy and Jan if you are there
Another dex night – midway through cycle 11 and facing the long night of reading and late night TV – son back from uni and still no work! He says he needs a holiday ! – I’m finding this very stressful so have given up whinging at him , though a bad dex day tomorrow might galvanise him into action!,
I’m…[Read more]

Dear Vikki
I am so, so sorry to read about Colin’s death and hope you managed some happy times over the last few weeks. Wishing you much strength and courage in the next few days and weeks.
Much love Helen

HI ANDY, JAN, MAUREEN AND CYGNET, I JUST TYPED A VERY LONG REPLY AND TO EACH AND EVERY ONE OF YOU, THEN I ACCIDENTALLY PRESSED THE 2, ABOVE RIGHT, AND LOST THE LOT!
Suffice to say I’m not going to repeat it all.
Briefly
Bloods stable and I’m still remarkably ok. Bad tempered and grumpy but the old man assures me there is no change from…[Read more]

HI ANDY, JAN, MAUREEN AND CYGNET, I JUST TYPED A VERY LONG REPLY AND TO EACH AND EVERY ONE OF YOU, THEN I ACCIDENTALLY PRESSED THE 2, ABOVE RIGHT, AND LOST THE LOT!
Suffice to say I’m not going to repeat it all.
Briefly
Bloods stable and I’m still remarkably ok. Bad tempered and grumpy but the old man assures me there is no change from…[Read more]

HI ANDY, JAN, MAUREEN AND CYGNET, I JUST TYPED A VERY LONG REPLY AND TO EACH AND EVERY ONE OF YOU, THEN I ACCIDENTALLY PRESSED THE 2, ABOVE RIGHT, AND LOST THE LOT!
Suffice to say I’m not going to repeat it all.
Briefly
Bloods stable and I’m still remarkably ok. Bad tempered and grumpy but the old man assures me there is no change from…[Read more]

Hi Andy
How was Belgium? I’ve never been there. I understand they Belgians make good beer!
I’m not getting headaches this time so maybe I just had a bug, I’m still ok really, one or 2 rough days each week but pretty good overall. Fingers crossed it stays this way. Still no sense of smell or taste, and irritatingly numb fingers toes nose and…[Read more]

Dear Vikki and Colin
Congratulations to you both, isn’t it amazing how people can pull something together like this, you must be very proud of them all, though I’ve no doubt you did lots!
I’m hoping you enjoy many more such happy days.
Love Helen

Dear Vikki
It’s the words you never wanted to hear and I’d like to just reach out and give you both a hug. There is nothing else I can say, it is the news we all dread. I hope Colin can get home soon, so you can at least get to grips with this bombshell in the comfort of home.
With much love Helen

Hi jan
That’s good results for your light chains, long may it last. Mine are down at 100 and have been stable for 3 months now on the pomalidomide.
Is your kitchen finished now?
There were some new drugs mentioned at the info day which are showing promising results but I think that there will be trials here for several years before they are…[Read more]

Dear Jeffrey
Yes I found unpredictable duvet days are are the order of the day, can’t do anything about them..just sleep!
Love Helen

Hi Vicki
I’m ok, I can’t decide how I realy feel..I look well! But I’m not as good as before, less sociable, more grumpy- if that was possible – I’m very uncomfortable a lot of the time, not enough to increase the painkillers but miserable. My bloods today were ok so I’ve started cycle 9 of pomalidomide, which I will be on until it stops…[Read more]