[sueaParticipant]

My partner has a very aggressive myeloma (plasma cell leukaemia, possibly primary, but not sure) which was diagnosed just before Xmas 2011. He's had 5 cycles of RCD treatment, but the myeloma was coming back by the end of that and stem cell collection wasn't possible before he relapsed only a month later. He was given Velcade (VCD) treatment for 1 cycle but developed a lung infection and bowel obstruction during the 2nd week and has been very ill and quite weak as a result. Plasmacytomas have also started to form and seem to be fast-growing. He's been told by the consultant (not our normal one, who is away on holiday) that there is no hope and the treatment has been stopped.

I have been looking into pomalidomide and it seems there is some chance that this drug could reduce or even get rid of the plasmacytomas and also be effective against resistant myeloma. But when we suggested this to the consultant he seemed to be irritated that we might suggest anything else, and just told my partner that further treatment would kill him. I know pomalidomide may only have a 30% chance of working, but surely that's better than none at all?

I don't know what to do. I know from how fast the myeloma came back previously that he may only have a few weeks without treatment. He is getting stronger after his problems and we feel he could probably face another round trying this new drug. Can anybody suggest anything – I can't even find a contact for the pomalidomide trials just to talk about it.

It seems to me from reading various posts, both on here and myeloma beacon, that other doctors don't just give up when someone has plasmacytomas (the main reason given here for not continuing).

[KeithH17Participant]

Hi Suea, MM is hard enough to deal with without having a Consultant who wants to throw the towel in. All avenues must be explored and you have the right to demand it so. I was diagnosed Nov 2007 and have had 2 transplants relapsing twice and now take Rev/Dex on going for as long as it works. I also had a plasmacytoma on my forehead which after 10 days treatment disappeared completely and I've known some patients to have had 5 or more of them which have needed Radiotherapy treatment. Please don't accept no for an answer,you have the right to be treat to the best of their ability and no stone should be left unturned. You must demand a second opinion and more if needed.

Best wishes.

Keith.

[DaiCroParticipant]

Hi Suea,

I will echo all that Keith has said, demand a second opinion, it it yours by right and ask for the pomalidomide. I have had 3 plasmacytomas that were sorted by the treatments, so pomalidomide or even Bendamustine might help there.:-)

The very best of luck in such trying times, I wish you naught but well.:-)

Dai.

[eveParticipant]

Hi Sue
I think you have to ask yourself if it had been your own consultant would you feel the same.If the answer is yes,then ask for a second opinion this is your right.!!!!
The consultant is not yours and may be did not feel comfortable having to tell you,it is a decision that is usually made after consulting other people,You need to talk to someone I suggest may be getting in touch with Macmillan nurses.
As you say it is progressing fast,he is feeling well so it,s hard to accept,and when you have a consultant who cannot handle this situation you are entitled to some sympathy unfortunately they are not trained.
No one should have been put in your position,but they do not have the time,to explain.
There is only one person who can decide enough is enough and that is your husband,if he is prepared to try he should be given the chance,talk to him he might just be trying because you want him too.
He might just choose to plan his time left and enjoy it,without further intervention!!!!.Eve

[sueaParticipant]

Thanks to you all. We talked to our GP this morning and she will contact our usual consultant and is encouraging us to send him an email too, so we'll see what happens.

[tomParticipant]

Hi Suea,

Good Luck and I also say get that second oppinion and if thats not good get a third and continue untill the start to treat you for getting better

Tom "Onwards and Upwards" xxx

[VickiParticipant]

Hi Suea,

Just wanted to add our thoughts to the others. As far as I am concerned I would leave no stone un turned, unless of course my partner adamantly did not want it.the medical teams are fantastic but it has to be joint decisions, trying everything! Go for it and I hope all goes well x

Vicki and Colin x

[BADGERParticipant]

Hello Suea

this is terrible these people didnt no shouldnt be consultants see if your GP can refer you to one of the teaching hospitals Kings or UCH both in London but centres of excellence the one at UCH is jointly run by McMillan
you could also contact them direct very best of luck let hope next time we hear from you it is better news
Love Jo x

[sueaParticipant]

My wonderful man went downhill too quickly and we never got the chance of a second opinion. He died on Thurs night. It was so fast and i am still in shock. Such a dreadful disease, my thoughts go out to all of you who are still suffering with it. Sue

[eveParticipant]

Sue
It,s the other way round,everyone on here will be thinking about you,It is so hard to accept and it should have been your consultant telling you there was no hope,it might have given you time to accept and come to terms with his death.
I hope you both had a time to yourselves and a peaceful end,accepting that some times,there has to be an end,when some one tells you bad news,you tend to latch on to key words,but you missed the PCL,and it sounds to me as no one explained the outcome.Very sad.
Look to the future remember the good times and try not to dwell on the bad,my thoughts as a carer are with you.Eve

[HelenParticipant]

Dear Sue
How very sad and sudden a loss for you, you will still be reeling. As Eve has said, I do hope that you had some peaceful, quality time that you can gain solace from.
Love Helen

[tomParticipant]

Dear Sue

I am so sorry to read about your partner going downhill so fast.
Please accept my deepest sympathy to you and yours at thia sad time

Love Tom xxx

[GillParticipant]

I am so, so sorry

Gill

[eveParticipant]

Gill
How are you doing???

Have had you in my thoughts did you get to France for that holiday Eve

[Author]

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