[PhilipandfionaParticipant]

For what it’s worth I’d push and ask for an X-ray too on your rib.
It could be nothing or it could be something but either way push.
My husbands had leg pain and had physio. It snapped. A simple X-ray may have prevented the break. Wouldn’t have changed the MM but would have made round 1 treatment simpler to deal with.

[PhilipandfionaParticipant]

No, that’s CVD.
i can understand how hard it is for newcomers to get their heads around this disease and the proliferations of initials doesn’t help. But I think a list of abbreviations somewhere may be easier than everyone spelling it out every time as I think that may get a bit tedious after a while.
Everyone here is so kind I’ve never worried about asking questions of what it all means.
I also wonder if some people choose not to know exactly what’s what and simply use the initials. I know my husband has to stop and think if asked what he’s taking.
Ps when I was a child we studied CDT at school – craft design and technology. I still think that when I see the treatment initials even though it’s in the wrong order.

• This reply was modified 9 years, 7 months ago by  Philipandfiona.
• This reply was modified 9 years, 7 months ago by  Philipandfiona.

[PhilipandfionaParticipant]

Fabulous news.

[PhilipandfionaParticipant]

Oh crap. Scuse the language, but so sad to hear this. I’ve decided you can only hear bad news once, so everything else here is just a continuation with intermittent periods of calm.
I hope they get it back under control soon with minimal side effects.

[PhilipandfionaParticipant]

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

[PhilipandfionaParticipant]

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 back pain he needs to see his doctor to see if he needs an xray to assess whether there is any damage there. He also needs to check with them what pain medication he can take.

[PhilipandfionaParticipant]

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 have is for as good health as possible for as long as possible, and when it isn’t – for a good death. I think you certainly enabled Slim to have that.

Very selfishly, I don’t want to lose you from here, although i expect you will want to take a good long break from MM and eventually start to rebuild your own life.

I wish you and your family all the best.

(princess) fiona x

[PhilipandfionaParticipant]

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

[PhilipandfionaParticipant]

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.

[PhilipandfionaParticipant]

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

[PhilipandfionaParticipant]

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 haemotological conference recently and spoke to Dr Kwee from UCH london, and said she does not do allos at all now, but sometimes refers people for them, as a first option. He thought that the only place really doing lots at the moment is in Leeds. he said that the mortality /morbidity risks were so high, and the fact that you can’t predict whether you’d end up lucky, or dead, that there are few people for whom they are suitable. A complete change from his point of view last time. i am pleased that he’s willing to learn and change his opinion as the evidence appears, but it does add to that rollercoaster feeling!

So we have arranged for an appointment at the Marsden as we’d like a consultation there, but it seems that an allo may be off the table, particularly as the Marsden were against it last time it was mentioned.

That’s almost a relief as we were dreading it, but he then threw in the bombshell that he doesn’t expect the revlimid to last much longer than a year, and pomalidomide less than that. He said he’d expect to get Philip 2 years but can’t really predict much more.

I so so so hope that there are some more drugs around soon.

[PhilipandfionaParticipant]

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

[PhilipandfionaParticipant]

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

[PhilipandfionaParticipant]

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

[PhilipandfionaParticipant]

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

[Author]

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