[torimooney]

My story - MGUS people, stay vigilant

by torimooney on Sun May 13, 2012 5:00 pm

Hello all,

I am turning 65 next month. I was diagnosed as MGUS last year in April when routine blood work for an annual physical showed elevated protein and anemia. My skeletal survey was normal. Further labs confirmed MGUS. In my late 20’s, I had severe problems with endometriosis and that resolved with surgery. I also have a history of mild asymptomatic anemia since I was in college. Otherwise, I have been in exceptional health…. NEVER sick and I rarely felt any of the normal aches and pains from sports, injuries, or aging.

I was referred to a hematologist/ oncologist and have had labs every three months over the past year. My M protein and other tests showed a consistent elevation each time. I went to NIH last month to participate in their MGUS study. I had a bone marrow biopsy and skeletal survey. NIH determined I have progressed to multiple myeloma. I have not yet begun treatment and will see Dr. Berenson in early June for his opinion.

I still was feeling super, no problems despite the fact that NIH saw I had a fractured rib and a lytic lesion in my skull. This week , I developed severe back pain that I believe is from a sprained SI joint (I am a physical therapist). I cannot recall doing anything to cause this. I did see the MD yesterday for x-rays to be certain it is not another skeletal lesion and x-rays did not show anything out of the ordinary for a 65 year old woman. I will see my oncologist tomorrow and if I am able to assume the prone position, I will get another BMB to run the FISH and cytogenetic that were not done at NIH.

My greatest difficulty with this diagnosis and facing treatment is that despite feeling great (with the exception of current pain), I will have to start taking drugs with bad side effects. I often entertain the thought of letting nature takes its course, but I do want to have a few extra years of having fun. I will do what I must do.

I hope my story can be a lesson to other MGUS people to follow your lab results and look for signs of progression. No one including your doctor has your best interest at heart more than you do.

[PaulaYvonne]

Re: My story - MGUS people, stay vigilant

by PaulaYvonne on Mon May 14, 2012 7:07 pm

Thanks for sharing your story. I'll be interested in what you learn from Dr Berenson. Best of luck with those tough decisions.

[Art]

Re: My story - MGUS people, stay vigilant

by Art on Tue May 15, 2012 1:59 pm

Thanks Toridon.

That is great advice. I am a 40 year old with smoldering myeloma. I couldn't agree more. I have also been to the NIH. Every time I see my local oncologist, he seems surprised by my knowledge. Do people really just sit back and blindly follow? I trust my doctor and I admire him. But I also take my fate into my own hands. I can't imagine having it any other way.

Best of Luck and Gods blessings
Art

[torimooney]

Re: My story - MGUS people, stay vigilant

by torimooney on Mon Jun 11, 2012 2:56 am

I saw Dr Berenson and he wants to put off treatment, other than the monthly Zometa and monthly monitoring of my blood. i am more than fine with his approach since i feel great.

However, I've been advised by two other oncologists to start treatment. I asked these other two oncologists why start now if the statistics show I have no longer life expectancy if I start treatment early or if I wait, provided I am not in the high risk category for quick progression (which i'm not).

They could not give me a reason I should start now other than that is what they would do if it were them. So I am very comfortable and confident with Dr Berenson's opinion, that because I am otherwise healthy and feel great, I can get by, at least for now, with just Zometa. I will see Dr Berenson every 3 months.

[Jack L.]

Re: My story - MGUS people, stay vigilant

by Jack L. on Mon Jun 11, 2012 12:17 pm

Hi Toridon,

Did Dr. Berenson agree with the NIH that you have progressed from MGUS to multiple myeloma? Given your bone lesions, it sounds like you have.

I'm surprised that if you have multiple myeloma (not smoldering myeloma?) that any myeloma expert would recommend delaying treatment. It was my impression that myeloma always called for treatment -- and that treatment does, in fact, extend survival, compared to delaying treatment. I mean, don't rush to start treatment tomorrow. Get another opinion if necessary to figure out when and what type of treatment. But I'd be cautious about waiting until you feel sick or lab results show that your myeloma is getting worse.

The NIH (I assume you saw Dr. Landgren?) definitely knows what they are talking about when it comes to progression from MGUS, smoldering myeloma, and multiple myeloma -- and when to begin treatment. It seems to be their specialty. So I wouldn't dismiss their recommendations lightly.

[BrookeA]

Re: My story - MGUS people, stay vigilant

by BrookeA on Tue Oct 22, 2013 7:59 am

Hi I was diagnosed with smoldering myeloma in October 2012 at the age of 43, but my medical history is of severe endometriosis that has culminated in losing an ovary and a hysteroscopy. I read your post and saw you too suffered from endo prior to your myeloma diagnosis.

Reading up on both diseases, it seems to me that they are quite similar in many ways, and I wonder often whether the disease had something to do with creating conditions that the cancer was able to grow. I also wonder how many other women are out there with both diseases.

Have you ever had the thought they were connected?

[Imalulu]

Re: My story - MGUS people, stay vigilant

by Imalulu on Tue Aug 26, 2014 11:41 am

Hey, I've had endometriosis with a lot of treatment ending with a total hysterectomy. I have very low numbers of MG for my MGUS but still, abnormal. Bone scan a couple years ago was negative. I don't have any other problems.

I think I'll revisit the doc to get new blood work, but I really want to stay with a positive attitude and believe I'll never progress to anything much, or at least, not until I'm pretty old! I'm 50 now.

Had MGUS diagnosed about 3 years ago. Dad had non-Hodgkin lymphoma at age 80 and so did my gramma. I sort of think if I "get it" that might be my pattern.

That said, I REALLY want to believe that my autoimmune disorder and then MGUS are all endometriosis and that's that!