Dear Eve, I hope you had a wonderful day today filled with love and laughter amongst a few tears. I am sure you did Slim proud.
Much love
Fiona

Hi

I am sorry for probably being very thick here, but please can you explain what you mean by non-malignant Myeloma. My understanding is that either you have smouldering Myeloma which does not cause damage, but which can progress from smouldering to Myeloma “proper”, or you have full on Myeloma which probably needs treatment.

If he has severe…[Read more]

I’ve posted over on Facebook, but didn’t want to ignore you here. Eve, i cannot say how much you have contributed here. You have been so very helpful in showing your reality.

I know there that this awful disease is generally one way only. I sincerely hope for a cure, but don’t expect one in the time left to my husband. However, the hope we…[Read more]

Bloody marvellous. Keep spending our taxes as long as you can’t. It’s certainly better than police and crime commissioners!

thank you Dusk. We are very pleased Doctor Boyd is knowledgable enough to know the lastest thinking, but humble enough to know he’s not got all the answers. I think between him and the Marsden, we feel very comfortable.

Thanks guys
Yesterday was a bad day. Today is a new day. The storms felt quite fitting!
Today’s gift is Monty python at the O2 with my mum. Xx

Hi

Sorry Stuart, i completely forgot to pass on your best wishes.

well as we thought, Philip will move to Revlimid next week. What we didn’t expect was Dr Boyd implied that the evidence for the benefits of an allo outweighing the risk are not proven sufficiently for him to recommend it. I am not sure why. he said he was at the european…[Read more]

Hello

Thank you. That’s extremely helpful and I am so pleased you’re doing well, long may it continue.
I’ve found jet and her blog and Facebook page and read everything there.
Thanks again

Hi Scott
My husband is likely to have an allo shortly, I’d love to know of your experience so far and how you decided to go for it?
Thanks
Fiona

We did, we saw prof morgan. Don’t know who we will see next time we’re there.

Kevin isn’t one of the team, he IS the team.
Thanks for the vote of confidence in him

Hello Annette

Thank you for your ray of hope. I sincerely wish you get 45 more years with it.

Yes, Eve, the Marden did the tweaking to get velcade as maintenance. It didn’t last long, but was better than nothing. x

Hi Eve

you are always helpful, whether you’re replying directly to me or others.

We’ve been very lucky. As Philip had his SCT at the Marsden, we had the benefit of Prof Morgan’s input into his treatement. When we had the velcade, he was the one who said don’t go for the allo as soon as it’s in remission, but stay on velcade as long as…[Read more]

Thanks Eve
Jet has a good blog and manages the Allo page on Facebook. I’ll look at deb on the beacon, thanks, I’d not heard of her.
The kids are ok at the moment but I feel desperately sad for them.

Hi

Our doctor didn’t even give the option of cyclo or not, when Philip went on Velcade it was Velcade Dex and Cyclo. He was “allowed” to drop the cyclo for the last cycle as it had just about disappeared by then.

Hope hte 2nd opinion works.

Wow! 5. That’s low. It all just shows how individual it all is.
Fingers crossed they find a cure one day.

Hi
CTD 4 cycles April – August 2012, auto SCT sept 2012. Relapse sept 2013 (on the 1yr anniversary!) velcade sept 13 – jan 14 with cyclo and dex thdn extended to maintenance just velcade fortnightly till now. Started relapsing April and risen from 2-9 in a few weeks.
His femur snapped in April 2012 which prompted the diagnosis when his level was…[Read more]

Hi

I’m so sorry Andy, I meant remission for Philip seems easy, but it bounces back quickly for him. I appreciate the fact that it’s not even possible for some. I absolutely didn’t mean to imply that any of this is a walk in the park at all. I’m pleased for you that pomalidomide is available, that may be an option for us if we don’t go down the…[Read more]

Hi

I am sorry if i implied that everything coming from India is bad. Not at all. I just worry about getting drugs from a long way away, and not through your own regulated pharmacies to ensure the quality of what you are getting.
I have to say, i would be tempted myself if i were in the same position, to grab life however possible and scream…[Read more]

Hi

I am really sorry to hear about the lack of options in Australia, but to be honest everything in me screams “are you crazy????” at thinking about ordering drugs from overseas, or is it from the internet? i can completely understand the overpowering desire/need to do something and get treatment, but getting something where you cannot have a…[Read more]