[GillParticipant]

Well what can I say? the 50% chance of surving the rest of this year has now reduced to £30%.

Not much more to try. Stephen went to see the oncologist on his own last night for the first time ever (I have always gone with him) He has become very bad tempered and refused to let me go with him.

I suppose I can understand the bad temper (and no he is not on dex) He is 57 and has very little chance of surviving the rest of this year I'd be completely pissed off.

He is sooo predictable. What pissed him off most was "no you cannot travel at the moment" So no France and he is threatening to just go and BUGGER them all.

He now has secondary cancer. Lumps and bumps everywhere. Apparently the drugs can cause this. (We were never told) and is off to the hospital for a biopsy.

Great They treat you for one type of cancer (mm) and give you another

Good Luck and Good Health to all of you

Gill

[eveParticipant]

Hi Gill So sorry about the news,can understand how angry you must both feel, Slim says if this SCT does not work he will not have any more as 6 months not being able to travel abroad and no guarantees it will work is a lot out of life,We are travelling to NZ once this is over,his way of looking at it,does it matter .!!!!!

Are there any. More trials available ? Or are you both making your own decisions to enjoy what time you have. France in the summer seems a good idea have always loved the fields of sunflowers and lavender.

Slims in Waddington at Kings having harvest back today,I have to say the nUrsing staff are on the ball here,so very pleased. My best wishes to you both. Love Eve

[MariParticipant]

Dear Gill,

I am so sorry to hear your news. I know you and Stephen must be feeling desparate. Is there really nothing else they can try? Any trials, bendamustine or even going back to some of the previous treatments? It must be hard for you because if he wont let you go to the oncologist with him then you will not have had a chance to ask these questions. It sounds as he is very angry and who can blame him.

I am not sure if this is helpful or not, but I do remember someone posting ( sorry I don't remember who) that as her partner became increasingly ill they still managed to travel, especially to France, as they were so good at dealing with Myeloma. To be honest, my Stephen is only willing to travel to France at the moment because he feels safe there if something goes wrong.

I really feel it's so important that if Stephen's time is limited he should do what makes him, and you, happy.

This is such a tough time for you, make sure you look after yourself. You have always been such a mainstay of this forum, I for one really miss your presence here. Maybe now it's time for us to support you as you have supported so many of us.

Much love and hugs to your both,

Mari xx

[tomParticipant]

Hi Gill and Stephen

There should be a few swear words in here but i will refrain from them (I hope)

I am sorry to read about it failing its a bloomin nightmare all this MM.
I do hope something can be done to throw the blooming MM into remission or slows it down a bit till something has been brought to the forefront.

Stay Strong and wishing for that "Just Ssomething" to happen to help US ALL.

Love and Loads of (((HUGS)))

Tom "Onwards and Upwards"

[TinaParticipant]

Dear Gill,

So sorry to hear the Revlimid failed. Has Stephen been treated with bendamustine or Pomalidomide? Patrick survived almost another two years after the failure of Revlimid on these drugs and the consultant was amazed.

Like Mari, I feel you should do what makes you both happy if that means travelling to France then get going and enjoy your time together.
Love, hugs and best wishes
Tina XX

[RozParticipant]

So Sorry Gill,

I agree with the others, but knowing how we wern't allowed to travel when this happened to Michael, I no by experience that everything is put in your way to stop you going.
I wish you both all the best and hope Stephen can carry on alot longer.

Love to you both
Roz

[jmsmythParticipant]

Dear Gill

I am so very sorry to read about Stephen and hope that there is something out there that can help him. My love prayers and hugs go to you both.

Love Jean xx

[DaiCroParticipant]

Hi Gill & Stephen,

I am so sorry to hear that Rev & Dex failed to take… I might be heading the same way, next Monday will determine that… but they have lined up a Benamustine trial 'just in case'… which was put more like 'it looks pretty certain'. Have they not offered Stephen anything else? If the Rev has caused secondary cancers and I know that a recent American study highlighted this as a problem, then surely they are going to chase it up with some sort of treatment?

My consultant (the second and preferred one) said that they would explore previous treatments when the time came.. what about CDT? Revlimid is a therapy, not a chemotherapy but Cyclophosphamide is… and it is coupled with Dex and Thalidomide… assuming Stephen received CDT and that it worked, is it not an option?

Angry is good… but I hope he doesn't give up on the treatments too soon… I won't and as since the beginning I am riding on Stephen's coat-tails… although I am now 58.

Much love and empathy to you both.

Dai.

[GillParticipant]

Thanks and apologies

Thank you all for your good wishes and sorry for my bad language.

I very rarely use those words (never anything worse) but when angry enough well— you saw the sort of thing I burst out with and believe me I am so so angry. This illness is such a horrid insidious thing. It does bring out anger.

Thank you to the moderators too. It's a wonder they didn't ban me from the site from now on I'd better be like this :-/

[tmcParticipant]

Hi Gill
My husband was diagnosed at age 57 and now at age 63 he will not see the year out.
He has relapsed three times now, SCT didn't work Velcade didn't work, Revlimid put him into remmission for 4 years and now has stopped working.
His MM is spreading to other bones and radiation and pain meds are keeping his pain in control. He is going on a trial next week (pomalidomide)but we have been told it is just for pain control there really is no hope now.
So I really do understand the anger, frustraion and disbelief you must be going through.
You have 30% survival rate so maybe there is something still out there for you.I really do hope so as this disease claims too many people and they seem to be getting younger.
If he feels like traveling and you are both strong enough to cope with it,(especially you as it will fall upon you to do everything) I am with him and would go
Good Luck with hopefully a new treatment and better news, They could be wrong!!
Love Teresa.

[tomParticipant]

Hi Gill

Trust me girl we wait for no apologies from you 😎 and am sure our moderators understand the words sometimes need to be said to vent our frustation I for one aint got a problem with it 🙂

Love and (((HUGS))

Tom xxxx

[susannahParticipant]

Hi Gill Sorry to hear your news, but dont give up yet Michael came off Revlimid over a year ago, he had Bendamustine but that didnt work for him,theres nothing else for him at the moment, he doesnt fit the criteria for Pomalidomide, but that doesnt mean that one of these wont help Stephen.
Michael has been on chemo and dex now since Christmas, not without its complications, but he is still here, So stay positive we dont know what is round the corner

Love

suex

[foxy555Participant]

Hi Gill

Please don't feel that you need to apologise!!! I am sitting here crying, for you mainly because I thought your post was so moving – and also because my husband, also 57 went to bed at 7.30pm tonight. In so much pain, it is spreading on a daily basis! We are starting to think that perhaps not all related to myeloma!!! I just cannot bear to see him like this.

God Bless Gill

Take care

Ann

x

[mhnevillParticipant]

Dear Jill

I'm also devastated with the news about Stephen when he has fought such a brave fight against this dreaded MM. I guess he now does need to work out his own way to assimilate this news and work his own way through these next difficult months. I can understand his wish to go to France and be damned! I hope he manages to pull it off.

As for you, what a difficiult time. I do pray you will be given the peace and strength you need.

Love to you both.

Mavis xx

[tmcParticipant]

Hi Gill
Thinking about you,
Have you been given any more options

We sometimes sit on the endge og the bed and shout and scream and cry and swear a navvy would be proud of the words we have come up with, anything to ease the pain and frustration of MM.

Love Teresa.

[Author]

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