[David Rainwater]

My name is David Rainwater

by David Rainwater on Fri Dec 21, 2012 4:21 pm

My MGUS was found during a routine blood test while preparing for a trip abroad. I had 3 bone marrow biopsies, MUGA, 2 full body Xrays, countless blood tests. The condition changed to symptomatic in August 2012. After another bmb which showed 50%, my oncologist said it was time to start Chemo. I am now in my 3rd cycle of 25mgRev/10mg Dex. Last visit, he said we need to plan a Stem Cell transplant. I guess this is when the real fun (battle), begins.

[Ron Harvot]

Re: My name is David Rainwater

by Ron Harvot on Mon Dec 31, 2012 1:30 pm

David,

Sorry to hear of your diagnosis. There has been a very informative discussion on this board concerning initial treatment options. There is a great debate on whether or not an Auto Stem Cell transpant is the best line of treatment. I think you might find that discussion informative and may lead to a disucussion with your Dr as to what might be the best line of treatment for you.

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

Good luck

Ron

[Multibilly]

Re: My name is David Rainwater

by Multibilly on Mon Dec 31, 2012 2:18 pm

Ron Harvot wrote:
> David,
>
> Sorry to hear of your diagnosis. There has been a very informative
> discussion on this board concerning initial treatment options. There is a
> great debate on whether or not an Auto Stem Cell transpant is the best line
> of treatment. I think you might find that discussion informative and may
> lead to a disucussion with your Dr as to what might be the best line of
> treatment for you.
>
> Here is the link:
> https://myelomabeacon.org/forum/looking-for-feedback-on-recommended-first-round-treatment-t1502.html
>
> Good luck
>
> Ron
Hey, this is Multibilly. The thread that Ron refers to was started by me and it does have a lot of good food for thought. I am still on the fence about what line of treatment I would initially use. Based on going through this exercise so far, I would humbly pass of the following recommendations:
1. Get at least one other opinion (if not two) from other myeloma specialists in completely different medical groups. If you need to travel to make this happen, then do it. Docs are not nearly as sensitive about one doing this as you may think.
2. Write down all of your detailed questions and keep a log/spreadsheet of the various answers you get from the specialists.
3. There are a lot of great points to consider in the thread that Ron refers to. You might feel overwhelmed by the choices and sorting through the different opinions, but I feel it is better to know all the options and to weigh them carefully before making your own decision. There is no clear cut, obvious choice for first line treatment and your final choice will be a leap of faith based on your own unique circumstances.
4. There are also a lot of great points to consider as far as what one would do further down the line when you likely relapse or become refractory and need a second of third kind of treatment to deal with that eventuality. Don't just think about making it through the transplant...think beyond that point.
5. Depending on your situation, advanced testing (i.e. MRI, PET-CT) to confirm an earlier diagnosis such as bone lesions is critical. Also, getting a second opinion on interpreting lab and xray results is also a really good idea (I've learned this same lesson before with other medical issues completely unrelated to multiple myeloma). You will be amazed at how many different diagnoses you can get from the exact same lab and x-ray results. And now with my multiple myeloma situation, I am finding that a second team could not confirm the presence of bone lesions that another radiologist found in the exact same xray, so I've had a PET-CT scan (there are debates on whether one should do a PET/CT or MRI, but that is another topic) and I'm having multiple folks look at these images as well.
5. One thing that did help me get a better sense of control during this process was to really focus on diet and exercise. I have to believe that this will make a difference in the progression of the disease and it does offer me some level of self empowerment. If it doesn't make a difference in the progression of the disease, you can at least go into a transplant with stronger reserves, as any sort of transplant will knock you down quite a bit.
6. Faith in God has also been a personal help to me as far as dealing with the angst of this whole situation.