[MsKris70]

Newly Smoldering Far Away from Home

by MsKris70 on Tue Apr 09, 2013 3:17 pm

I was recently informed in January that I have SMM and I'm still processing the information. So far, the doctor is having me do bloodwork and see him every 2 months. I moved to Hawaii a few years ago to close the distance on a long distance relationship, now this thing has me torn. Panic mode has set in and I'm strongly considering moving back to be closer to my family, as well as more convenient treatment and possible better treatment options. I've been informed by my oncologist that when the time comes for the stem cell transplant, it will have to be done in California since they don't do it in Hawaii.

I feel like I don't want to deal with this without my family, and I don't want to put all the pressure and responsibility on one person. He's great and we're great but my entire family is in California. I really don't have any other friends or support system here and I feel alone and lost most of the time and I want to run home to my strong support system. Part of me feels like I'm overreacting and feeling sorry for myself and reacting prematurely having just been diagnosed a few months ago.

The whole uncertainty of SMM in terms of how long you smolder is maddening. Aside from the family aspect, I feel like I'm so far removed from better treatment options and possibly trials since the SMM was found very very early. Am I making rushed decisions before I've had a real opportunity to process what's happening?

[Multibilly]

Re: Newly Smoldering Far Away from Home

by Multibilly on Tue Apr 09, 2013 4:28 pm

Hey there MsKis,

Sorry to hear you have SMM. I was diagnosed with it back in November.

My thinking has evolved over the past few months to embrace the following:

1. I very well may not progress to symptomatic multiple myeloma (it's easy to lose sight of this and to think about a worst case scenario).

2. There are things which I believe I can do to keep my SMM in a holding pattern such as diet, exercise, curcumin and other various supplements (I'm still experimenting on this front and won't know if my efforts are paying off until later this week when I get my latest lab results back).

3. Even if I do progress to multiple myeloma, getting an ASCT is not the only path for treatment and I personally am now viewing ASCT as a treatment of last resort (although that may not be the path for everyone, and I respect those that chose otherwise...every case and person is different and it is a very personal choice). I'd encourage you to read the following thread:

https://myelomabeacon.org/forum/looking-for-feedback-on-recommended-first-round-treatment-t1502.html

4. I also have identified doctors that will work with me on exploring the latest drugs and low doses with an eye to a long term plan, should I progress. I now know I don't have to go on to a cookie cutter chemo/ASCT treatment plan and all my docs will gladly work with other docs on a treatment plan that makes sense for me and my particular circumstances.

Overall, I went from being quite distraught to being fairly neutral about this whole thing. Might this disease turn against me later and may I need to come up with Plan B? Sure, but I will deal with that when it happens.

I know this doesn't directly address your thoughts about being closer to where trials are happening and your family, but I wouldn't personally be planning so soon for an ASCT and being close to your family because of it. If you are getting tested every couple of months, you will likely have plenty of time to react to any major change in your disease. Enjoy life now!! What better place than Hawaii?? Anyway, that's my two cents.

[MsKris70]

Re: Newly Smoldering Far Away from Home

by MsKris70 on Tue Apr 09, 2013 4:54 pm

Thank you! Excellent point and something I needed to hear. I'm definitely a Plan B kinda gal. My biggest concern was all of the options and docs to consult with aren't as readily available here and chemo/ASCT was the only treatment option discussed.

I'm still looking into specialists here since frequent traveling isn't really an option. Knowing more about options and accessibility to different docs will definitely ease the panic. And so the research continues....