[Smittie]

Recently diagnosed with smoldering myeloma

by Smittie on Sun Mar 23, 2014 12:27 pm

Let me start by saying I am grateful ... Grateful that my smoldering myeloma was diagnosed and that I will now be actively monitored and have options for treatment. Mostly I am grateful for all of you who have shared your stories and what you have learned and so many have done with a good dose of hope coming thru.

When I first heard of smoldering myeloma last week and got on the Internet for some information; I became frozen with fear. I am sure some of you can relate. I gave up before I even needed to start.

If anyone would like to share with me any information or any questions I need to ask my doctors as I begin my journey, I would appreciate the help. I know my "numbers" are on the lower side and have no "CRAB" symptoms. Thank you!

[Joy]

Re: Recently diagnosed with smoldering myeloma

by Joy on Sun Mar 23, 2014 7:39 pm

Hi Smittie,

I don't have smoldering so I don't feel qualified to give advice in that area, but I'd like to say welcome and that I'm sorry you have to deal with this. It does sound like good news that you have no CRAB symptoms and that your numbers are pretty good.

All the best to you!

[Smittie]

Re: Recently diagnosed with smoldering myeloma

by Smittie on Sun Mar 23, 2014 9:55 pm

Hi, Joy,

Thanks for the reply. Is there another forum we people go and share not only their symptoms and treatments, but also there feelings? I am sorry for all you must be going thru as well.

[Joy]

Re: Recently diagnosed with smoldering myeloma

by Joy on Mon Mar 24, 2014 12:12 am

Hi Smittie,

If you check the smoldering forum, there might be a thread or two that address this issue. If there isn't, I think you could start with a question asking how people deal with the uncertainty of all of this. Take care.

[Blee]

Re: Recently diagnosed with smoldering myeloma

by Blee on Mon Mar 24, 2014 2:47 am

Hi Smittie,

I'm sorry to hear that you've been recently diagnosed with smoldering myeloma, but welcome you to this group.

I also have SMM and am being closely monitored.

There are some very caring and articulate people whose posts have been so helpful to me. See "Father just diagnosed with smoldering myeloma" as a recent example.

I hope their well-written insights and advice will help you, and please feel free to send me a private message.

Deep breath. Hanging in there with you,

Blee

[Cheryl G]

Re: Recently diagnosed with smoldering myeloma

by Cheryl G on Mon Mar 24, 2014 7:09 am

Smittie, I'm sorry to hear about your diagnosis. I think you'll find the forum a helpful place for all sorts of issues and questions, not just the ins and outs of symptoms, treatments, and stuff like that. What sort of questions do you have in mind?

[Multibilly]

Re: Recently diagnosed with smoldering myeloma

by Multibilly on Mon Mar 24, 2014 7:18 am

There's a lot of us with SMM on this forum (I've been smoldering for about 18 months now). Happy to share any lessons learned along the way. Just let us know the specifics.

[Smittie]

Re: Recently diagnosed with smoldering myeloma

by Smittie on Mon Mar 24, 2014 8:33 am

Thanks all for taking time to reply.

I have read some of the older posts about supplementing with curcumin. I wondered if any of you were taking that or any other supplements you have found to be useful. I read about the importance of exercise. Just wondered if there was more I could do to keep my body as strong as it can be.

Another specific question is I had a bone study, but not a scan. Is that enough? How does a 55 year old women determine if it's a regular ache or pain or something more?

[Multibilly]

Re: Recently diagnosed with smoldering myeloma

by Multibilly on Mon Mar 24, 2014 9:00 am

Hi Smittie,

Regarding imaging, I would suggest looking at this thread:

https://myelomabeacon.org/forum/post16847.html#p16847

By "bone study", I assume you mean an xray skeletal survey or your entire body? I personally don't believe that an xray skeletal survey eliminates the need for a DEXA bone scan (not to be confused with a nuclear bone scan). A DEXA scan can determine bone-density and the presence of osteopenia or osteoporosis (which multiple myeloma can cause), which an X-ray cannot. But a DEXA won't reveal a bone lesion due to multiple myeloma.

Regarding supplements, quite a few folks on this forum take various antioxidants and curcumin. I can send you a couple of links to explore via a private message.

What are your numbers (M-Spike, free light chain ratio) like? How about your cytogenetics (i.e. were you told you have any genetic deletions, gains, etc to be concerned with from your bone marrow biopsy tests)?

When you are first diagnosed with SMM, it's easy to forget that one can easily "smolder" for the rest of one's life and may never progress to symptomatic multiple myeloma (at least I was going through these kinds of doom-and-gloom scenarios for the first month or two after my diagnosis).

[Beacon Staff]

Re: Recently diagnosed with smoldering myeloma

by Beacon Staff on Mon Mar 24, 2014 9:30 am

Welcome, Smittie.

Here are a few links that you may find helpful:

Forum discussions on "supplements"
Forum discussion on either "curcumin" or "turmeric"

News and opinion articles on supplements
News and opinion articles on curcumin

When you use either the forum search box (above the main area of the forum) or the news and opinion article search box (in the menu bar), it will work best if you use keywords, like "symptoms", "lesion", etc. (without the quotation marks).

Also, the forum search by default looks for the keywords you specify in the subject of discussion threads. You can get it to search in the postings themselves by using the "Advanced search" capability.

Best of luck to you!