[MarieK]

Just saying hello.

by MarieK on Wed Mar 28, 2012 2:24 am

Introducing myself. Marie. My partner, aged 64, was diagnosed in Dec 07. Only taking oral bisphosphonates. His condition is indolent and he has had no treatment at this point. I have read a great deal of material from the medical journals to get a handle on the disease. At the stage now where I would like to talk to other people affected by multiple myeloma. My partner hasn't seen a doctor for ten months. His choice. So I don't know where his illness is at any more.

[Nancy Shamanna]

Re: Just saying hello.

by Nancy Shamanna on Wed Mar 28, 2012 10:08 am

Hi Marie...good that you wrote in...there is so much help available from the Beacon! From what you said, I think that your partner has smoldering multiple myeloma? That might mean the same as 'indolent', but am not a doctor and am not sure. If that is the case, and if he has not seen a doctor for ten months, does that mean that he is missing scheduled appointments?
I know just how tough it is psychologically to come to terms with having an illness like this one, having gone through it personally. Since you are there to help him, I would try to persuade him to get his regular checkups, hopefully with an oncologist. Then they can take it from there, if he needs treatments at this time. He shouldn't be too nervous about getting treated...most of the drugs used are of the sort that you can tolerate, without losing your hair etc. It's far better to have this cleared up than to have it progress to the stage where you get a lot of physical damage. Good luck and let us know how things are going! There are several very knowledgeable patients who post on this site, who have SMM, and they know a lot about dealing with that condition.

[BigDen]

Re: Just saying hello.

by BigDen on Wed Mar 28, 2012 10:24 am

Hi MarieK,

I can understand your concerns. If you haven't done it already, you may want to review the news articles here at the Beacon about smoldering myeloma. You can view them here:

https://myelomabeacon.org/tag/smoldering-multiple-myeloma/

Also, if you do a Google search like this one,

http://www.google.com/search?q=forum+smoldering+myeloma+site:myelomabeacon.com

you also can find some useful discussions here in the forum related to smoldering myeloma.

I know it can seem very overwhelming at first. But just a little bit of reading now and then will really help you when it comes to understanding the treatment your partner is receiving and making decisions about that treatment.

Good luck!

[MarieK]

Re: Just saying hello.

by MarieK on Wed Mar 28, 2012 11:16 am

I greatly appreciate the helpful comments from both of you. Yes, it is smoldering/indolent myeloma. From my reading on the Google Scholar sites indolent is further advanced than smoldering. My partner's physician used the term indolent but I'm not sure if he meant it in the strictly technical sense. He does have a number of lytic lesions. I have in fact read myself silly and spent maybe a hundred hours all up reading the medical journals, with a comprehension rate of between 40 and 70%. I will read the news articles and the links that both of you have pointed me towards. He has had very slight problems with his physician(s) and resolved not to go back while living in UK. He tells me that he will seek medical help "when my body tells me to". At present he is very well. I have no sway over him whatsoever! He was diagnosed in 2007 and it was thought he was much further down the track than was the case due to a (misdiagnosed) rotten arthritic hip that has since been replaced and was thought to be symptomatic of myeloma. I agree Nancy that multiple myeloma could be hard at work in the body and it won't be telling him to go and see a doctor. I will stay in touch and keep popping into this website. So many thanks to both of you.

[Ben S.]

Re: Just saying hello.

by Ben S. on Wed Mar 28, 2012 11:33 am

I am not a doctor. But does the appearance of lytic lesions indicate bone involvement?

[MarieK]

Re: Just saying hello.

by MarieK on Wed Mar 28, 2012 11:52 am

Yes Ben. I guess it does. And in that respect he is symptomatic. What I meant to say somewhere is that in UK treatment is withheld until a person is symptomatic, but I think the lytic lesions alone are not sufficient to initiate treatment. The bisphosphonates have been effective in controlling the calcium loss.

[Nancy Shamanna]

Re: Just saying hello.

by Nancy Shamanna on Wed Mar 28, 2012 12:04 pm

Hi Marie...if you were to make an app't with him and the doctors for within the next two months, then that would be an annual assessment, which I am sure that no patient would object to. Your partner may not realize that bones can suddenly fracture, and that is a catastrophic event! So anyone would want to avoid that scenario if possible. They can send him for the appropriate scans, etc. Wishing you all the best!

[MarieK]

Re: Just saying hello.

by MarieK on Wed Mar 28, 2012 2:05 pm

Nancy, thank you. I think that sounds like a good reason to go for a consultation. I think he wants to go to a private doctor if at all. He needs to get a medical for the purpose of emigration, says he has someone in mind but he's not telling me nuffin. It could be six months before he acts on it. I appreciate the thought you have put into your suggestions. I have thought along similar lines and it has been comforting for me to have my thoughts endorsed as I am totally alone in this country. My family are all in Australia. I have tried to talk to him and nothing works, he gets angry. I will keep popping into the Beacon because it is inspiring for me to read what other people's experiences are. My partner has lived a very good and, dare I say, privileged life and has much to be thankful for.