[mrswrench]

Re: Time from first symptoms to multiple myeloma diagnosis?

by mrswrench on Wed Jan 18, 2017 1:27 am

Hello Chad,

My husband was recently diagnosed (yesterday) and we begin treatment on Monday.

Although,it seemed like a long time to us, it was actually a relatively short time from the first time we saw the oncologist to date.

He got unusually sick last spring with a pneumonia-like illness that persisted for months, and then got sick again last September with increasing fatigue and shortness of breath. I finally sent him to is PCP, who ran regular blood panel and iron studies. His protein came back high in October, so in November he ran a serum protein electrophoresis (SPEP), which showed an IgG M spike. He referred us to the oncologist and we met with them in December with another complete set of tests, plus a 24-hour urine.

Those tests came back with an M-spike of 3.1 g/dL (31 g/l) and kappa light chains in his urine at 5300 mg/d.

By the first week of January we had MRI, echocardiogram, bone marrow biopsy, and more labs in which his urinary light chains had increased to over 7600 mg/d as well as some focal lesions from his MRI and 50% clonal infiltrate of plasma cells in bone marrow. We received those results yesterday and will start treatment next Monday. The time for his diagnosis from when he first saw the oncologist was 5 weeks, but looking back I suppose the illness in the spring and fall were probably related.

Everyone seems to be a little different in symptoms and disease. Many people have MGUS first and/or a smoldering stage. Perhaps my husband had something for a long time that we never even knew about, but for us, it seems that he just had it right away. He had had other blood tests for physicals previously, and this year was the first time we noticed an elevation in his protein.

Have you had any labs and tests results yet?

Good luck to you! Hope you do not actually have multiple myeloma.

[rdawes26]

Re: Time from first symptoms to multiple myeloma diagnosis?

by rdawes26 on Wed Jan 18, 2017 6:43 pm

Hey there,

Thanks for responding! I am just concerned since I have had symptoms for 7 years. I did read several accounts of having the symptoms without knowing, kind of like me.

Just getting worried.
Chad

[Wainui]

Re: Time from first symptoms to multiple myeloma diagnosis?

by Wainui on Wed Jan 18, 2017 9:49 pm

Hi, and we all seem to find out differently. I just went for a standard check-up; I hadn't been for a few years as I had been caring for my wife, who unfortunately had died of renal cancer 8 months earlier. I had no symptoms at all, and the check-up included blood tests. My local doctor had luckily been an oncology registrar for a while as part of her training, and said she noticed some "markers" in my blood test results that she said would have checked out further, and turned out to be myeloma. Like most people, I had never heard of it before.

I was considered to be "smoldering," but after 2 serious bouts of infection within 3 months and very nearly dying, they started standard treatment (Velcade and dexamethasone, etc.), and I've since had an autologous stem cell transplant 2 years ago, plus thalidomide for 6 months. Stringent complete remission and no problems since, other than standard fatigue, gastric. I'm back working full time after a short break, but no misunderstanding of what's likely to be coming over time.

Like others on this thread, I've wondered how long I'd had this without knowing and maybe had already been through smoldering / MGUS. Initial detection seems largely a matter of luck, your doctor thinking outside square about what symptoms could mean, previous exposure to patients with multiple myeloma, etc., and I think we just have to work with what happens and focus on the future.

[Myosotis]

Re: Time from first symptoms to multiple myeloma diagnosis?

by Myosotis on Thu Jan 19, 2017 9:08 am

Hello Chad,

I am one of those who believe I had symptoms for several years before diagnosis, including back pain and many ear infections every year (I never had them as a child). About eight months before diagnosis, the symptoms worsened, including rib pain and broken ribs, an ear infection that developed into meningitis, back pain that worsened quickly during the last two months before diagnosis, and five weeks with low fever and bowel problems. At our age, no one suspects multiple myeloma.

I hope you get some clear answers very soon, whether it is multiple myeloma or something else.

[ladysherlockian]

Re: Time from first symptoms to multiple myeloma diagnosis?

by ladysherlockian on Sun Jan 22, 2017 3:06 pm

My dad (75) was diagnosed this January after terrible pain in his back on December 26, but he already had some rib pains since last September. He took a lot of painkillers to dull these pains, but they kept on returning. I suspect he might have had multiple myeloma for some time, as he had anemia since 2011. It was not treated by his doctor and kept deteriorating. Now I think the anemia might have been the first symptom of multiple myeloma.