[dblum]

My Husband is Smoldering and I'm Afraid

by dblum on Wed Aug 21, 2013 3:57 am

My husband - age 72 - was diagnosed with high risk smoldering myeloma this July, three weeks ago. His disease was picked up on a routine blood work for his physical through a very high SED rate. That began more tests, and since then I've accompanied him to five different myeloma specialists, watched while he's had blood drawn at every appointment, and waited for the test results.

He has an IGA m-spike around 2.5, 30-40 plasma cells in bone marrow and no CRAB symptoms. Feels fine. Some of the doctors are saying watch and wait, others saying treat now. All very confusing. Many of the sessions with the doctors almost toxic in the way they talk to him, and it days takes to recover after one of these appointments.

My question is this... All of his numbers are remaining stable except for one: the Beta 2 Micro globulin. When he was diagnosed it was 2.7, and now, six weeks later it's up to 5.2. This increase caused one of the doctors to say that it means his myeloma is progressing rapidly and he should begin treatment NOW.

But I am wondering if the rise in this one level could have anything to do with the massive amounts of supplements he's started to take at the time of his diagnosis (curcumin 8 grams and Niacin 3 grams) Especially the Niacin which I see can be toxic in high amounts and affect the liver and kidneys.

Can anyone shed any light on this one blood test and reasons why this is the only level that is changing?

[JBarnes]

Re: My Husband is Smoldering and I'm Afraid

by JBarnes on Wed Aug 21, 2013 12:26 pm

Can't comment on the impact to the supplements but I think all of us have the issue of multiple opinions on treatment from various doctors. You have got to decide who you put your trust into and focus on that doctor. Work with him to come up with a treatment plan. There is no clear cut treatment plan which leaves us with many opinions.

Personally if it was me and your husband is in good health I'd pursue treatment and knock it down before it become full blown Myeloma.

Good luck to you, these days the treatments allow you to have a long term survival and minimal impact on quality of life. Jerry.

[dblum]

Re: My Husband is Smoldering and I'm Afraid

by dblum on Wed Aug 21, 2013 8:36 pm

Thanks Jerry. I read your story of how you were diagnosed. Yours, like the other patient stories on the Beacon really have helped me keep my head up during this ordeal. I don't know what my husband will do in regard to treatment, but like so many of life's really important decisions I think it will become clear over time. Right now we are still in shock, even though it's been six weeks. It sounds like your treatment is going well. How are the side effects? The fatigue? Best, Debbie

[Nancy Shamanna]

Re: My Husband is Smoldering and I'm Afraid

by Nancy Shamanna on Wed Aug 21, 2013 8:50 pm

Hi Deborah, Thanks for sharing yours and your husband's story that has been unfolding this summer. I couldn't comment on his blood work really, except to say that a simple experiment that you could do yourselves would be to drop the supplements for the time being and see if the blood work returns to a more manageable level.
Other people have commented from time to time that taking a supplement has altered their blood work detrimentally. Of course people take supplements in order to become healthier....but I would consult with your physicians before taking any supplements actually!
Best of luck to both of you!

[Cheryl G]

Re: My Husband is Smoldering and I'm Afraid

by Cheryl G on Wed Aug 21, 2013 9:37 pm

So sorry to hear about your husband's situation, Deborah.

I've heard of at least one situation where increasing beta-2 microglobulin (b2m) levels were a sign of kidney issues.

Has there been any change in your husband's creatine clearance numbers, or any other kidney function numbers, while his b2m levels were changing.

Also, just out of curiosity, what sort of hemoglobin levels has your husband been measuring.

Just to put it on your radar screen, there are two trials being conducted by the National Cancer Institute that you probably should know about. They are both for smoldering myeloma; one is just an observational trial,

http://clinicaltrials.gov/ct2/show/NCT01109407

the other is a trial testing Kyprolis, Revlimid, and dexamethasone in high-risk smoldering myeloma patients.

http://clinicaltrials.gov/ct2/show/NCT01572480

There are also several other clinical trials for high-risk smoldering myeloma patients. Just go to http://www.clinicaltrials.gov and search on "smoldering myeloma" and you'll find quite a number of trials.

I don't think your husband currently would be classified as high-risk smoldering, however, based at least on the Mayo Clinic criteria. You can read about those criteria in this forum thread:

https://myelomabeacon.org/forum/formal-risk-of-progression-classification-for-smoldering-multiple-myeloma-t1542.html

Oh ... before I forget ... there's also this cancer vaccine trial for smoldering myeloma that's being tested.

http://clinicaltrials.gov/ct2/show/NCT01718899

Sorry if all of this is a bit overwhelming. I hope some of it will be of help.

[Janice C Baird]

Re: My Husband is Smoldering and I'm Afraid

by Janice C Baird on Thu Sep 19, 2013 10:53 am

Hubby has multiple myeloma and travels MDAndrson in Houston. Over 7 years and 2 stem cells in the beginning
He travels from Florida to Houston 3 days a week for treatment. There are times without fear but you never have peace after the diagnosis. Horrible disease! He's lost. 60 lbs and 4 inches in height. We've been through some really tough times. Bill is not strong now and I live with panic at times. I wish you all some good days and hope you take advantage of those days.