[Grant]

Should I get a second opinion? If so, where?

by Grant on Mon Oct 17, 2016 2:24 pm

Hi All,

I was diagnosed with stage 3 multiple myeloma in April 2014. I live in Cape Town, South Africa and feel very lucky to have a fantastic hematology department close by.

Since my diagnosis, I have had an autologous stem cell transplant (January 2015) and an allogeneic transplant (November 2015), but never quite managed to get my M-spike below 3 g/l (0.3 g/dl) since the first auto transplant. My latest bloods are up to 12 g/l (1.2 g/dl) which I guess means that I've relapsed or that my myeloma is once again active.

I'm off to meet with my hematologist tomorrow, and as I mentioned I really believe that I have received excellent treatment. But I am wondering if it would be worth getting a second opinion just to make sure. I have wondered if there are treatments elsewhere in the world that we might not have access to here that may benefit me.

My questions are whether it will be helpful to me to get a second opinion, and, if so, where would it be best for me to get a second opinion given the treatments I've received and the way I've responded to them. I would be willing to travel to Europe, or the U.S., if necessary.

Any suggestions would be appreciated.

Thanks

Grant

[JPC]

Re: Should I get a second opinion? If so, where?

by JPC on Mon Oct 17, 2016 4:11 pm

Hello, Grant.

There are a number of highly regarded multiple myeloma specialists in Europe, of course. I have posted once or twice that I have heard that specialists in Spain are very active in the most recent multiple myeloma research. Two of those doctors that come to mind are Dr. Maria Mateos and Dr. Jesus San Miguel.

I also recall a posting by another poster to the effect that you can also simply look up a list of the members of the International Myeloma Working Group. That would open up more options for you that might be more convenient.

Good luck to you.

[Dean UK]

Re: Should I get a second opinion? If so, where?

by Dean UK on Thu Oct 20, 2016 1:13 pm

Hi Grant,

If it helps, one UK-based myeloma specialist you might want to consider consulting is Professor Jamie Cavenagh. He is highly regarded, and works private at Harley Street in London.

I'm sorry to hear your autologous and allogeneic stem cell transplants may not have worked. I'm just in the process of having my autologous stem cell transplant in November and am waiting on my team to confirm if I'm having an allogeneic next year. I'm very surprised to read that your allogeneic transplant may have not done the job. Could you perhaps start a separate thread to describe how your allo transplant went, and answer any questions people have about it? I hope you don't mind me asking; I'm just trying to get as much information as possible.

Regards,
Dean

[Grant]

Re: Should I get a second opinion? If so, where?

by Grant on Thu Oct 20, 2016 4:13 pm

Thanks for your recommendations, JPC. I will look into it.

Grant

[Grant]

Re: Should I get a second opinion? If so, where?

by Grant on Thu Oct 20, 2016 4:25 pm

Hi Dean,

Thanks for your advice, I'll look into it.

I would be happy to go through my journey by starting a thread if enough people are interested.

Just with regard to my allo – my doc explained that there was about a 15 percent chance that it might lead to a permanent remission. Failing that, I could have a longer period of temporary remission or, worst case, it wouldn't make any difference. It obviously did not lead to permanent remission, but I do think it has prolonged the period of temporary remission, which at my age is probably worth it.

Cheers,

Grant