I am still scared to death, even reading about survivors of MM and Mgus such as yourself. I think about my kids and husband daily and hate going in for another diagnosis…
Dear David- Thank you so much for your Webinar and book – you provide a great hope to me! I am 42 years old and was my Mgus diagnosis from a fluke blood test a little over 2 years ago. Every 3-6 months, I go in to check my M-Spike which has climbed slowly up to 2.4 as of Feb’17. It started off as 1.4 and has even gone down during at one time with Curcumin supplementation for a short term experiment about a year ago.
When first diagnosed with Mgus, I went to 3 different Hematologist-Oncologists
for 3 opinions and underwent the 4 routine MM tests, all proving negative except my bone marrow biopsy
came up with mixed results (1 lab showed 2% and 20% infiltration, and another lab showed 8-9%) with both labs using the same biopsy smears.
In Feb’17, I had all testing done again except the bone marrow biopsy
and still showed no growth except the slight increase of the M-Spike.
To get to the point, I am still scared to death, even reading about survivors of MM such as yourself. I think about my kids and husband daily and hate going in for the blood testing because I do not want to jump into chemotherapy quickly if at all.
Even though all of the oncologists I went to want me to continue the wait and see
approach, I have finally taken matters into my own hands based on your advice as well as that of another MM survivor blogger and have just recently purchased High Absorption Curcumin, Ossomer
, and Reishi mushroom
, with my Curcumin intake to 8 grams (1000 milligrams = 1 gram).
I was wondering if you know anything about peripheral nerve pain before chemotherapy treatment and if you know of anything I can take to fight the nerve pain or nerve damage?
Unfortunately, the only Hematologist Oncologist in our insurance network does not have any Myeloma patients and said that my nerve pain issues have nothing to do with my MGUS or MM which I definitely don’t believe and have little faith in his wait and watch approach.
Any thoughts, opinions, and prayers would be such a blessing to me and would be utterly appreciated.
Thank you again for all of your research, compassion, and fight that you provide!
Dear MGUS Patient-
Several things. First and foremost I am sorry to learn of your MGUS diagnosis. Secondly, keep in mind that you do not have cancer. MGUS is a blood disorder
at this stage. Further, you are young. This is a positive prognostic indicator
. You have every reason to believe that you will see your kids graduate from high school, college, marry, have kids, etc. I understand the emotional aspects of our diagnoses all too well. However logical thinking about MGUS, evidence-based therapies, etc. will allow you to entertain the long-term view.
Regarding your 3 different bone marrow biopsys yielding three different results, keep in mind two things. First, you are pre-MM. This means that you have low amounts of MM cells in your blood. Secondly, a BMB sticks a needle in a bone and extracts the marrow from that exact area. Three different sticks will yield three different results.
All to say that you have low amounts of MM in your marrow. Again a positive prognostic indicator. Next, undergoing evidence-based therapies such as curcumin to try to remain pre-MM is a good thing. Re your numbness. While MGUS is referred to as being “asymptomatic” there are many documented cases of MGUS patients experiencing PN, bone pain and other common symptoms. I agree that you do not want to begin chemotherapy at this stage. Undergoing several non-toxic therapies to address your MGUS is not “watching and waiting.” As you have identified you responded to curcumin previously.
There are many evidence-based pre-MM therapies outlined in the pre-MM program. The webinar you watched outlined them.
Let me know if you have any questions.
Hang in there,
- Myeloma Survivor
- Myeloma Cancer Coach
- Director PeopleBeatingCancer