[DonnaMarie]

Donna Marie, diagnosed at age 58 with smoldering myeloma

by DonnaMarie on Thu Sep 13, 2018 4:06 pm

Hello Everybody:

My name is Donna Marie and I am 58 years old. I was diagnosed with igA kappa smoldering myeloma on June 23rd of this year. Very long story short:

Back in 2006, I had very high alkaline phosphatase levels and wound up getting a liver biopsy and an SPEP test. Liver biopsy was inconclusive, so I got to have another one. I was told I have fatty liver, mild fibrosis, official name non-alcoholic fatty liver disease. The SPEP test showed polyclonal gammopathy with no M-spike.

I moved on with my life. I exercise, eat right, avoid soda and junk food, have never smoked, do not drink. Wow, I'm boring lol. I always took care of my health. Was never sick as a child.

Anyway, I noticed an increase in my total protein and globulin levels approximately 3 years ago. I brought this to the attention of any and all doctors who would listen to me. I was told that it is due to my fatty liver, nothing more, stop being paranoid.

Finally in April of this year I went to a hematologist / oncologist. He practically dismissed me. He looked at my last 3 years worth of blood test, explained I had no CRAB symptoms, and tried to send me on my way. I politely informed him that there was a trend in my total protein levels and globulin levels and insisted that he run an SPEP. He agreed. As he was walking out the door, he informed me he would probably not be seeing me again. I was hoping the same for several reasons.

A month later, I went back to his office for my test results: Imagine that I had an M-Spike of 1.6 g/dl (16 g/l) in the beta region and a 0.03 g/dl (0.3 g/l) in the gamma region.

Moved forward with 24-hour urine - No Bence Jones protein.

Full body survey - completely clean. PET/CT scan-base of skull to thigh: No hypermetabolic activity seen-more specifically, no evidence of myeloma Looking good for MGUS only.

Then the bone marrow biopsy: 20-24% plasma cells. Not horrible, but it puts me right into smoldering myeloma. FISH was bad, so were cytogenetics. I am both high risk for smoldering and active myeloma.

IgA 2039, range (66-433);
IgG 1018, range (635-1741);
IgM 44, range (45-281)

Kappa 27.2, range (3.3-19.4);
Lambda 8.9, range (5.7-26.3);
K/L Ratio: 3.06, range (0.26-1.65).

Due to the fact I have IgA kappa, the kappa-lambda ratio is higher than normal, and thus I am considered high-risk smoldering. Thankfully at this point I do not have any CRAB symptoms.

I have been reading this forum for a good two months now.

I have appreciated what Multibilly has posted since the time of his initial diagnosis, including the questions he asked. I really appreciate the graphs he has posted of his lab results, including his most recent update.

I realize even though my kappa-lambda ratio is above the norm, there have been others that I have seen on this forum well over the 100.

I have started the curcumin regimen of 8 g daily and am hoping that this will bring my IgA down to close to normal as well as my M-spike and of course my kappa-lambda ratio. I want to stay smoldering as long as possible.

I apologize for the very long post; trust me I could have made it longer. You're welcome

I wanted to introduce myself and thank all of you for this forum, your input, your experiences.

Most days, I'm fine, other days I find myself becoming overwhelmed. This forum has provided me with a great source of comfort.

Thank you.
Donna

[Dimamar]

Re: Donna Marie, diagnosed at age 58 with smoldering myeloma

by Dimamar on Thu Sep 13, 2018 9:47 pm

Donna,

Love your style, way to stay positive!

Let me correct one thing, which you may like. You are saying that a kappa-lambda ratio of 3 puts you at high risk smoldering. That is not true! I think a kappa-lambda ratio over 8 is considered high risk.

Your uninvolved immunoglobulins (IgG, IgM) are normal or close, so another criteria for high risk missed!

Now, I think IgA in general is higher risk for progression than IgG (the more common type).

I, too, did 8 g / day of curcumin for a few months, but that made no difference, so I stopped completely.

Anyway, best of luck!

[DonnaMarie]

Re: Donna Marie, diagnosed at age 58 with smoldering myeloma

by DonnaMarie on Fri Sep 14, 2018 9:27 am

Good Morning Dimamar:

Thank you for the quick response. I have to say: Loving you already.

Now that you mention it, I think I read it somewhere that 8 is considered high for the kappa-lambda ratio. That makes me very happy.

What makes me not so happy is my FISH and my cytogenetics. I realize this is a non issue until / unless I progress to active myeloma. Keeping fingers crossed that I never do.

However, it is still a concern.

I have dup(1p), del(13q), several translocations and I have also a very high reticulin count in my bone marrow, which the doctors tell me, and I have read, are not normal.

That having been said, I am trying not to worry about things that have not yet, or hopefully, will never come to pass.

As far as the loving my style comment - Never knew I had any...

I have started the curcumin as well as a muscadine supplement, which includes resveratrol, as well as a spoonful of Manuka honey in my organic green tea each morning.

Have a wonderful day everybody.

Donna

[Multibilly]

Re: Donna Marie, diagnosed at age 58 with smoldering myeloma

by Multibilly on Fri Sep 14, 2018 5:04 pm

Donna Marie,

You might want to reconsider taking a supplement with resveratrol. I looked into this supplement as well and decided not to use it based on this article.

https://myelomabeacon.org/news/2010/05/06/suspended-resveratrol-clinical-trial-more-details-emerge/

[DonnaMarie]

Re: Donna Marie, diagnosed at age 58 with smoldering myeloma

by DonnaMarie on Wed Sep 19, 2018 12:27 pm

Good afternoon everybody:

Thank you, Multibilly, for the information.

I did read that article regarding resveratrol, however, that was back in 2010 and I had read more recent articles on the benefits of resveratrol.

Like everything else, there are good and bad in everything and I feel we must all decide what is best in the end.

I go for my blood work on October 1st and will see if there are any changes. Hopefully, the bad numbers will go down and the good numbers will go up.

Donna Marie

[DonnaMarie]

Re: Donna Marie, diagnosed at age 58 with smoldering myeloma

by DonnaMarie on Mon Oct 01, 2018 1:38 pm

Good Afternoon Everybody:

I hope all are doing well.

I just went and got my first blood work done since my initial diagnosis of smoldering myeloma. I was told I should have my results by Thursday.

I am continuing with my supplement regimen, although I've decided to stop resveratrol based on Multibilly's feedback.

Wish me luck with my test results.

I am trying to be hopeful and simply remain stable. Perhaps, if I am truly lucky, my numbers will go down. However, I will accept stable for now.

Will post my results when I receive them.

Thank you.

Donna Marie

[DonnaMarie]

Re: Donna Marie, diagnosed at age 58 with smoldering myeloma

by DonnaMarie on Mon Oct 15, 2018 1:12 pm

Good Afternoon:

I received back my blood work.

My RBC's, hemoglobin, and hematocrit have all gone down slightly, still normal, but on a downward trend.

My globulins have gone up from 5.1 to 5.4, however, my total protein has gone down to 7.9 from 8.2, this is because my Albumin has also gone down from 4.0 to 3.7.

My SPEP is basically the same, the only difference being that the gamma globulins went up from 0.9 to 1.0, and the M-spike is now see only in the Beta 2 region at 1.5.

I realize that this test is not as reliable for IgA myeloma as it is for other types of myeloma. However, the doctor did not feel it necessary to IgA, IgG, or IgM tests this time around.

However, he did order FLC testing:

Kappa: 34.8 (went up from previous test of 27.2)
Lambda: 12.1 (went up from previous test of 8.9)
Kappa/Lambda Ratio: 2.88 (Went down from previous test of 3.06)

I am happy that the ratio has gone down, and I have read that if both the kappa and lambda go up simultaneously that this can be a normal immune response (polyclonal) to perhaps a cold, virus, allergies etc, and if only the Involved light chain rises (in my case kappa) then this can be due to the myeloma advancing.

I also realize that my ratio has gone down and as previously informed that FLC ratio over 8 puts me at high risk, and over 100 it is considered a myeloma defining event, and I am beyond grate­ful for the lowering of my ratio.

Thanks and stay well.

Donna Marie

[DonnaMarie]

Re: Donna Marie, diagnosed at age 58 with smoldering myeloma

by DonnaMarie on Fri Nov 09, 2018 4:35 pm

Good afternoon.

Just checking in to say hi, see how everybody is doing.

I finally received my IgA, IgG and IgM results:

August 13th

IgA 2039 (66-433)
IgG 1018 (635-1741)
IgM 44 (45-281)

October 25th

IgA 1726 (81-463)
IgG 1105 (694-1618)
IgM 47 (48-275)

I have no idea why the ranges are different, since I had the blood drawn at the same place.

I am of course thrilled that my IgA has gone down, as well as my "M" spike, which was 1.6 in the beta region and 0.03 in gamma region, and went down to 1.5 which is in the beta region only, and does not appear to be in the gamma region.

Slight, decline, but I will happily take it.

My concern, for lack of a better word, is that my kappa has gone up:

On August 13th:

Kappa 27.2 (3.3-19.4)
Lambda 8.9 (5.7-26.3)
Kappa/Lambda Ratio 3.06 (0.26-1.65)

On October 1:

Kappa 34.8 (3.3-19.4)
Lambda 12.1 (5.7-26.3)
Kappa/Lambda Ratio 2.88 (0.26-1.65).

I realize that my ratio has gone down a smidge, due to my lambda going up, however, I thought that when your involved heavy chain and "M' Spike went down, so did your light chain, in my case IgA kappa smoldering myeloma.

I have read that when the light chain continues to go up and the heavy chain goes down, it could be a sign of light chain disease or amyloidosis.

I don't want my excitement of my numbers going down, to be overshadowed by the fact I could potentially have something else to worry about.

Thanks for listening.

Have a wonderful rest of the week.

Donna Marie

P.S. - I know I am very, very lucky that I caught this early, and hopefully can remain healthy for a long time.