[eveParticipant]

Hi Wendy

My own personal thought was Slim should go on the MUCK 5. Trials,if you look at is history of treatment, thalidomide increased the Myeloma,Velcade considered failed drug, SCT failed,finding it very hard to accept Rividimid as the best option for Slim.

Has been ruled out as no way of monitoring it.compassionate grounds will not be explored until he try,s Rividimid ,so no choice no options, Slim is not fit enough to make the 86 mile journey on a regular bases to Kings in London,plus again E Kent work closely with Kings.

The consultant made it very clear,compassionate grounds will not be explored until he try,s Rividimid ,at least he was straight and honest about it.Slims bloods are showing IgG and IgM. Bars ,the same as Helen's have asked and been told its Myeloma and not another blood disorder,but I think this also adds complications to the mix.

I might live in the lovely garden of England,but its amenities have a lot to answer for. Love Eve

[ellenModerator]

Dear Christine

I am very sorry about any confusion regarding access to carfilzomib. Unfortunately, we were given unclear information from the pharmaceutical company who produce carfilzomib about its availability through a compassionate use programme. They have now clarified details of the scheme, the patient access scheme is not a compassionate use programme but it is a named patient scheme – this means that patients must pay for carfilzomib.

With best wishes

Ellen

[christinepughParticipant]

Hi Ellen

Thanks for posting the info. Dr Cavet didn't elaborate as to why but thanks for explaining.

Christine X

[christinepughParticipant]

Hi Wendy

He didn't say Chris wasn't eligible he just said it wasn't available. I will ask him next time we go, but Ellen has also posted some info.

How come you are not eligible for Pomalidomide ? I think we will see someone else when Chris is ready to start treatment, just to see what direction they would go in.

Take care and keep us posted.

Christine X

[christinepughParticipant]

Hi All

Just a quick update. Following my post in June to say Chris`s pp`s had dropped to 14, his appointment last Friday showed another drop to 12 !

He doesn't have to go back for two months, which is the longest break he's had to over a year.The feeling for now is that as long as the levels are going down no treatment at the moment.
So despite the declaration of failure back in May it appears the men in white coats don't know absolutely everything ! The melphelan is still reducing his pp`s 4 months after SCT.
Chris is back at work a couple of days a week which has been a brilliant boost mentally. He still gets very tired but managed a week in Florida convalescing at his Aunt,s house which did him the world of good.
His immunity has held up well, no infections since he came home from hospital after the SCT.
A good friend is doing a cycle ride London to Paris for Myeloma UK in August and we are going to join him in Paris with his wife and another couple of friends which a couple of months ago we wouldn't have thought possible.

This is yet more proof that this is such an individual disease and at times is impossible for anyone to predict with any accuracy what is round the corner.

Love to You all

Christine X

[meganjaneParticipant]

Hi Christine,

That is wonderful news, I hope the PP continues to drop and a two month break from the hospital is great!

How is the neuropathy for Chris, did any of the new things he was going to try help?

Enjoy your trip to Paris.

Megan

[christinepughParticipant]

Hi Megan

Thanks for the message, yes a bit of good news for once. The neuropathy is still there but bearable. Chris decided along with approval of our consultant that he wanted to reduce the pregablin and see what the difference would be as he felt several side effects that bothered him, lack of concentration, forgetfulness and generally foggy that he put down to the drug.

He reduced over a number of weeks down from 900mg to 150mg per day and said it hasn't really made any difference but the clarity of mind has been greatly improved.
Tiredness is his main gripe really but I guess this is part and parcel.

Hope you and Phil are doing well.

Christine X

[meganjaneParticipant]

Hi Christine,

Phil and I are doing well thank you. Phil was the same, he reduced his Pregablin from 300mg to 0 and the neuropathy is no worse (and no better!) but he feels better in himself. I still hope it will get better by itself but I guess we will just have to wait and see.

Phil has been feeling more tired again this last week but we think it is the heat wave that is causing it as I am just as tired 🙂

Megan

[christinepughParticipant]

Hi All

A quick update since the one in June. Chris's pp's are now at….4 they dropped from 12 to 5.7 in two months, which 6 months after transplant was quite a surprise. Chris is now waiting to have a mini allo in Jan from an unrelated 10/10 match donor. He has been chemo free since his transplant in March, back to work since summer for 3/4 days a week and feeling well apart from bouts of tiredness. The temptation is to wait it out and see if he could get some decent remmision for a while but his myeloma has been so hard to treat previously that we are scared that if we don't take this opportunity now he might miss the chance if he relapses later.

Christine X

[meganjaneParticipant]

Hi Christine,

That is great news about Chris' PP levels 🙂

Phil still gets tired now 11 months after his SCT and he is not trying to work, I think the fatigue is pretty normal.

How is Chris' neuropathy now?

Good luck with the mini allo, please keep us posted.

Megan

[VickiParticipant]

Hey that's great news about the pps,

Colin still gets very tired too, the cycle seems to be he does a lot then is totally whacked for a while. Hope you are ok too megan

Best wishes to all

Vicki and Colin 🙂

[wendyduffieldParticipant]

Hi Christine and Chris

the further reduction is great news, incredible after 6 months that the melphalan is still having the desired effect, Chris has obviously responded very well to it. Is Dr Cavet now recommending the mini allo? Good luck with it and keep us posted

Wendy

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