[jeapal23Participant]

Firstly I like the new site.

Mike my husband has MM for the past 2 1/2 years, previous to the he had MGUS since 1998. He had a stroke in 2002, so one way in another he has been dealt a bad hand.

He is off to the Hospital on Thursday, and I find the anticipation of whether he is going to start treatment or not over whelming. His paraprotien level go from 48 up to 62 but they still dont treat him. He has no bone pain so they say they dont need to treat. I wonder if they are not treating because of his stroke. that is probably not true but I think it.

How many other people have ben treated with high paraprotien levels and no other syptoms, would like to hear from you

[brochoParticipant]

Hi ( sorry you didnt put your name ) trouble is myeloma is so individual its hard to compare treatments In my case my doctors take the whole package into account before suggesting treatment , which means scan results , bone marrow biopsy as well as paraprotein levels.If you feel comfortable with the consultant the perhaps asking the question outright would reassure you The specialist nurse is always a good person to ask exactly this sort of question and may be less intimidating Good luck on Thursday /please let us know how you get on Best wishes to you both Bridget

[DebsParticipant]

Hi there.
It is so hard isn't it to know whether you're getting the right treatment or not. I have been asymptomatic until recently and was worried in the same way as my paraprotein went up over 6 months or so from 32 to 45 which seemed high in comparison to lots of other people. Like Mike, I had no other end organ damage/ bone pain etc.

What helped me was when I heard from a couple of people who said their paraprotein had been at around 70 odd before they were treated. I believe they're reluctant to treat with no signs of end organ damage. It may be that they wait till either his hb drops, calcium starts to rise, or he gets some sign of bone pain.

I'm about to start treatment next week as I have started gettting slight bone pain and my hb has dropped again for the second time – my bmb also came back at 50% last time. But even with that my consultant has said I could have waited a little longer if I'd really wanted to/ felt it was necessary.

So, I would just ask them to talk through all Mike's readings and explain to you what sort of things they are looking for before they start treatment? But I'm sure it won't be stroke related, although perhaps that makes them more likely to wait until they have to treat rather than using it as a safe option? Only a thought and I'm no medical guru!!!

Good luck with it all and keep us updated.
Debs x

[jeapal23Participant]

Firstly sorry for not putting my name, it is Jean. I had a lot of trouble doing my first post on the new site.

Mike's Paraprotein level tonight was 48 and everything else was fine. He is getting a lot of colds, chest infections and cold sores. He is going back in two months. He has no bone pain apart from arthritis in him lower back, that is what they picked up on his most recent x rays.

so I suppose, we just wait till the next appointment in the new year

thanks for the responses

Jean

[mhnevillParticipant]

Hi Jean

I just picked up this post while getting used to the new site. It was very helpful to me because, unlike you, on behalf of your husband, I want to put off treatment for as long as possible. After an op for a plasmacytoma in Sept, 10 I feel better than I have done in the past 18 months even with my arthritis. I don't want to make myself feel "worse" with chemo related side effects before I absolutely have to. My paraprotein level was 10.

I feel encouraged that your husband has gone 2 1/2 years without treatment.

All best wishes to you both.

Mavis

[tomParticipant]

Hi Jean

two and a half years treatment free:-D

I had no pain when I was diagnosed with MM (jan 2009) but told my Consultant that I want to hit it with everything that is available to get rid of the Cancer before it grows and spreads (my thoughts not his bless him ) so he set the ball rolling for me to have CTD then a Stem Cell Transplant, it all worked out great 🙂

Me for one cant see any point of waiting.

Good Luck

Tom "Onwards and Upwards"

[Author]

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