Hi Dai
Having only recently ( yesterday?) thought you seemed to be doing rather better than for a while I am finding it really disappointing to read of your recent encounters and frustrations, I can totally see your point and don't understand the reasoning behind it,do they think gcsf might exacerbate myeloma cells ? Other people seem to get it…[Read more]

Hello Jo
Like all the others I wondered where you were, especially when the hair dye question was raised a few weeks ago! You wre instrumental in my taking the plunge there again.
I'm thinking of calling a register soon, just to keep tabs on everyone!:-) or maybe one of those map things that Harry potter had would be good.
I'm sorry to hear…[Read more]

Hi Debs
I think I'd pop into the GP too, it could be the sun…. If you've had chemo you are more at risk of burning, it could be hormones as well and even …. As you have small children …there is a childhood illness called 'slap cheek syndrome' which is a virus rash you could pick up I suppose, I've not looked it up at all but if it…[Read more]

Hi Andy
Brilliant news for you and Steph, it taken a long time but lets hope the pps stay down there for a very long time. I'm so pleased.

Dai .. nice to see you are staying on the straight and narrow with this treatment so far

Ali it's good to hear your mum is doing so well

And Vikki I admire Colin's get up and go back to work but is it…[Read more]

Hi Wendy
Peru wasn't shelved permanently but I had chest infection after chest infection so thought thin air might be a step too far and was going to leave it until later, I've not asked again.
I get the bone marrow result next week. If it is ok he thinks I might have up to 2 years before I need more treatment but as the sflc went 43, 58, 119,…[Read more]

Hi Eve

I am gutted that Slim appears to be relapsing after such a short time in remission and such a hard struggle to get there. I'm sorry that I missed your post before and it was only when you posted on my blog that I realised what was happening. At least it cant be said that you didn't make the most of the remission that he had and I hope…[Read more]

Hi Helen, glad you are feeling well (its ironic isn't it that we are relapsing when feeling so well) but disappointed for you that you had to shelve your plans to go to Peru. Do you really think you cant go because my consultant said I was ok to go to India as long as my light chains were no more than 600? Enjoy Cornwall anyway

Wendy x

That is great news, a very significant reduction, keep it up, no I mean down!!:-)

Ha Wendy
I know, but to be fair I was only going to Spain, and only the myeloma would not be covered, but yes it was a risk. I'd have been a lot less gung ho if I'd gone to Peru as originally planned. And when I booked it he thought it might go down as the chest infections have all gone now and I'm really feeling well, if slow at walking…[Read more]

Ooh Helen, you naughty girl! I had nothing in writing either! Hope you had a nice time in Lanzarote. My consultant doesn't seem to think I need a BMB at this stage so that's a bit of pain avoided! Fingers crossed for your results. Relapsing is certainly a tricky phase but if we are in good health then long may it continue. Keep us posted…[Read more]

Hi Jean, nice picture of Frank with the baby!

Thanks Eve

Hi Jean
Good to hear Franks bloods are looking good, at this stage ' close to normal with no pp' is good…. Look how long some people have taken to get neutrophils and platelets up enough to get out of hospital. I had a bmb at 3 months post SCT to check I was still in remission.
Love Helen

Hi Andy
Revlimid is certainly doing its stuff for you, Have a good trip to Greece, some sun certainly lifts the spirits.

Hi Jill I always take the Revlimid at night too as it makes me weary about an hour after I take it, but everyone differs
Love Helen

Welcome back Wendy, your trip looks amazing, I confess to not changing my insurance before we went to Lanzarote, didn't think about it really, I had nothing I writing, just a 'you need a bone marrow biopsy to see what is going on so we will do it when you are back from holiday' anyway. It is done now, results next week.
I think living with…[Read more]

Hi David
Good luck with the Velcade, I hope it works quickly and well for you. Do keep posting about your velcade journey.
Love Helen
Ps how is your garden? Any sign of those bulbs you planted? Mine's a mess!

Hi Jean
I'm with Eve here, I'd be requesting cheese on toast a lot too! It's funny but that was one of my favourite dishes after SCT also. Blood results look really good too
Love Helen

Dear Jean
Home at last …. Hurrah …and managing to eat as well. It's all good progress. Hope you both manage to relax and recover together.
Love Helen

Hi Eve
I've not started any on any more treatment yet, but I had the long discussion about the options available and it will be velcade and possibly a trial which is coming up with velcade and something else, I don't even know what it is called, then second SCT with the hope I will get 2-3 more years!….he said!! . I was a bit shell shocked…[Read more]