[Beacon Staff]

Weekly Poll - How Long Since Your Smoldering Diagnosis? - 2011

by Beacon Staff on Wed Oct 19, 2011 12:37 pm

Welcome to a new edition of The Myeloma Beacon’s “Weekly Poll”. This week’s question is about how long it's been since your diagnosis with *smoldering* multiple myeloma.

A few clarifications:

First, as indicated in the question, you should only respond if you currently have smoldering multiple myeloma. (We realize that many of our readers with active myeloma initially were diagnosed with smoldering myeloma. However, we would like only readers who currently have smoldering myeloma to respond to this poll.)

Second, if you are a family member or caregiver of a smoldering myeloma patient, please answer on behalf of the smoldering myeloma patient in your family or for whom you are..

Once you have answered the question above, feel free to add whatever comments you feel might be relevant, interesting, or thought-provoking in the discussion below.

We also ran similar polls for people with active myeloma and monoclonal gammopathy of undetermined significance (MGUS), check out those results:

Active multiple myeloma:
https://myelomabeacon.org/forum/weekly-poll-how-long-has-it-been-since-your-diagnosis-t621.html

MGUS:
https://myelomabeacon.org/forum/weekly-poll-how-long-since-your-mgus-diagnosis-t1202.html

[Fidalgo1]

Re: Weekly Poll - How Long Since Your Smoldering Diagnosis?

by Fidalgo1 on Wed Oct 19, 2011 5:01 pm

Have never been on such a roller coaster in my whole life since being diagnosed with SMM in May, 2011. There are so many variables with multiple myeloma and no two people are alike. Even the doctors don't agree on the diagnosis and/or treatment. The most fustration that I have is with the doctors and their staff. Have test after test performed and never hear back from them. Their scheduler's, nurses, aides, etc. never seem to get back to you either, even when they promise to do so. You sit by the phone waiting for it to ring for days on end. Am still waiting for copies of office visit reports from June and August, 2011. Two fax's and three phone calls and I'm still waiting. They have all the time in the world but unfortunately a lot of us do not. Never had an anxiety attacks in my life nor took a tranquilizer until I was diagnosed with SMM. The doctors read the x-ray's and MRI's differently and disagree or they don't explain in terms that are understandable or they are just to busy to take the time at all! They bungle the BMB but still bill your insurance. Their physical therapist were no better and can't devise a plan for my therapy needs but remit bill's for two visits (the 2nd visit was to make excuses for the 1st therapist who didn't do her job). Now the City Hema/Onc and the Local Onc don't agree if I need bisphosphonates. Just another typical confusing problem for the patient to encounter and you wait for the results of more tests. At times I feel that I am just not sick enough for my specialist to spend any quality time with. My GP is more concerned about my care then the specialists.

As you can see, I've just about had it............ I guess I didn't pick the right medical team to help me get off this roller coaster....

[terryl1]

Re: Weekly Poll - How Long Since Your Smoldering Diagnosis?

by terryl1 on Wed Oct 19, 2011 5:21 pm

I was diagnosed with myeloma on 8/10/11 due to a referral to a hematologist by my PCP for a slightly low WBC. I am monitored on a six months basis because I am on Lipitor. He ultimately did a BMB because my SPEP was normal. I have light chain only kappa myeloma. He wanted to treat be asap without knowing my stage---not an expert. I went to the NIH which enroled me in a smoldering multiple myeloma study and they diagnosed me as smoldering due to my lack of CRAB symptoms. The bottomline is never have treatment till you see a real myeloma expert who only does myeloma. I liked my local hematologist but he really was a general hem/onc.

[Neil]

Re: Weekly Poll - How Long Since Your Smoldering Diagnosis?

by Neil on Thu Oct 20, 2011 4:19 pm

I was diagnosed with SM in December 2005. This came about from a blood test taken when I had a viral infection 2 months after a quintuple heart bypass.
I had a bone marrow biopsy and complete body X-rays (12) from head to toes and SM was confirmed by the oncologist on December the 20th 2005.
This was quite a Xmas present!
Initially I was dumb-founded, like I would think all who are diagnosed with multiple myeloma are.
You have just been given a death notice - no known cure for this cancer!
I was on Lipex (Statin drug) to "control" cholesterol after the bypass surgery. I was suffering the side effects of joint aches and some mornings I didn't feel like getting out of bed as my body ached so badly.
I "Googled" Statin side effects and came to the conclusion/decision that I didn't need to take these drugs and suffer an aching body when joint pains were going to be an indicator of multiple myeloma.
A friend of mine who was also taking Lipex, had read an article about Co-enzyme Q10 and how it was depleted in the body when taking Statin drugs. I "Googled" again and found this CoQ10 was vital for body internal lubricant of muscles etc, and because it was a natural element produced in the body, there were no side effects when taking this element additionally.
I started taking 1 x 150mg capsule daily at breakfast and within 3 days the aches were gone and I felt rejuvenated.
This sparked an enthusiasm in me and I decided there and then to STOP taking Lipex and control my cholesterol with correct foods ie, cut all fat off meat and reduce the portions to the size of the palm of my hand. I use olive oil and Olivetti spread in place of butter/margarine.
Cut sugar intake to minimum and minimal alcohol consumption (no spirits).
My local GP and the heart specialist were appalled that I had taken this approach (stopping the statin drug) but here I am 6 years down the track and feeling as fit as a fiddle.
I get out and play a round of golf every fine day as this is the only exercise option I can follow. I had the cartilage removed from my knee 30 years ago and cannot run or jump around as I would like to.
My attitude to life changed in 2006 and I decided to put all my problems on the back burner and get on with life to the best of my ability. At the age of 75 I maintain a golf handicap of 17 and my grandsons are getting taller every day and I want to live as long as I can.
I,m sorry if I have rambled, but as the Medics don't know how/when/cause of multiple myeloma, I have 6 monthly blood tests which obviously show no changes have taken place since the random discovery in 2005 so lets get on with life. Cheers Neil.

[pha516]

Re: Weekly Poll - How Long Since Your Smoldering Diagnosis?

by pha516 on Fri Oct 21, 2011 5:53 am

I was diagnosed with MGUS in 1996. About 10 years ago it started to change slightly but am told I am either smoldering or stage 1 and have been this whole time. IGG KAPPA , IGG fluctuates between 3800 & 4200. No bone involvement ever. No treatment. Only Aredia for 10 years.

[jpinor]

Re: Weekly Poll - How Long Since Your Smoldering Diagnosis?

by jpinor on Sun Oct 23, 2011 10:28 am

I was initially diagnosed with stage 1 on 9/7/2010 after BMB and some small lytic lesions found on my arms. In August of 2011 they took follow up X-rays and could find no lesions!! I was then classified as smoldering. I have been using curcumin, and herbs from my acuherbalist - no other treatment. I am hoping to continue smoldering...

[terryl1]

Re: Weekly Poll - How Long Since Your Smoldering Diagnosis?

by terryl1 on Sun Oct 23, 2011 7:01 pm

hi jpinor,

what sort of curcumin protocol are you following? I am smoldering and i take curcumin and things to boost the immune system---kefir, yogurt, fermented foods like kimchi, etc. I've read that these may be helpful, and there seem to be few risks. good luck.

[John Williams]

Re: Weekly Poll - How Long Since Your Smoldering Diagnosis?

by John Williams on Mon Oct 24, 2011 4:47 am

I was diagnosed asymptomatic (smoldering) following tests after an anaemic blood test result. The first words my consultant uttered were 'Well, you've got a 55% chance of living 12 months and a 29% chance of living 5 years'. My plasma cells were 70% and my light chain reading 2,700. The consultant was so sure I'd be up in the 5 to 10,000 range and on chemo very soon he had a nurse run through the various clinical trials of chemo drugs he thought I would like to volunteer to take part in. I was to be light-chain tested every month.

I have been taking ten grams of curcumin daily - no side effects whatsoever. Since then my readings have fluctuated between 2,200 and 2550. I initially mentioned curcumin to the consultant. He hadn't heard even of turmeric but said he would ask his pharmasist if curcumin would do any harm. Sofar as I can judge he promptly forgot all about it. He's not mentioned it since and is visibly puzzled by my stable situation. He has now reluctantly pushed my visits back to six-weekly intervals. I'm letting him stew for the time being.

[John Williams]

Re: Weekly Poll - How Long Since Your Smoldering Diagnosis?

by John Williams on Mon Oct 24, 2011 4:55 am

Re my previous post, I stupidly didn't answer the main question - it's ten months since I was diagnosed. I am 77 years old.

[coyotemd]

Re: Weekly Poll - How Long Since Your Smoldering Diagnosis?

by coyotemd on Mon Oct 24, 2011 12:15 pm

Dx MGUS@Mayo, 1991 on routine exam. 2007 IGG increased from 2500mg to 3900, AFTER 16 YEARS. BM 21% plasma cells .0% plasma cell labelling index, M-spike 2.8gm. Went to a highly respected East coast Center in August 2011 and saw the expert. Before he even looked at the new IGG/ M-spike he drew that morning,{which I got sent to me AFTER the visit and just happened to be actual down to 3430 mg IGG . M-spike 2.8g same. }Told me you have multiple myeloma and need treatment, immediately. Handed me a clinical protocol for RVD and if I signed up, I would live for FIVE years maybe TEN. You are in great shape, a very strong 65 yo guy. New Dx multiple myeloma: multiple myeloma, without a new bone marrow, no light chains etc testing. before offering treatment for DX of multiple myeloma. AND NO CRAB blood changes and NO SYMPTOMS. Went back to the Mayo---new DX.--- SM--- do NOTHING.
Has anyone really looked at the number of months of suffering from the side effects of TREATMENT with RVD on going for months, and the loss of the quality and joys of life only to say I am alive at 2 or 3 years??? ALIVE?? Oh, by the way 2007 started curcumin 8gm/ ;resveratrol 4.0gm/ ;DHEA 2.0gm; CoQ10 500mg/ Omega-3 5000mg and exercize/meditation/prayer. I am extremely blessed for 20 years from MGUS to SM and I don't have one ache or pain. and I don't think about the lab report every minute. Ask yourself how am I doing today. Did I enjoy all the things I love today. And remember you could get hit by a bus before the lab values kill you.
Don't let someone TREAT YOUR LAB VALUES because they conform to a new clinical protocol.Wait for science to catch up to you with a less toxic option or as pass on with dignity.