[pinball]

Watching and waiting

by pinball on Sun Oct 11, 2015 10:19 pm

I've been on the watch and wait program since August 2010 when an SPEP to possibly help identify extreme knee joint swelling turned up a very "faint paraprotein" (IgG kappa) of 0.100 g/dL.

In 2010 I was then referred to a hem/onc specialist that then ran a UPEP which was negative for BJP and proceeded to tell me that at my age (39) it would be very unlikely that I have a true plasma protein metabolism disorder and that rather the monoclonal protein was the temp response to the extreme inflammation of my knee / joint effusion. No followup appointment was ever set and I forgot basically about the situation after the initial "scare".

Approx 2.5 yrs later my wife was unfortunately diagnosed with luekemia (also at an unusually young age for her type of disease) - a few months into studying my wife's cancer I came across "M-Spike / MGUS / SMM / multiple myeloma info which led me back to my hem/onc appointment a couple of years prior - per Wikipedia I should have been checked 6mo later to determine if my M spike had increased, vanished, decreased etc..... But again the initial hem/onc specialist that I saw did not think I required followup as it was so unlikely that at my age, health with a faint M spike that it would truly be MGUS or anything worse...

BTW that same initial hem/onc specialist diagnosed my wife and was unable to begin my wife's chemo due to lack of experience with patients of her age - we've since began to seek care at a major cancer center that is ranked normally #1 or #2 for most types of cancers.

I began to see the Lymphoma / Myeloma dept of the major cancer center and received thorough examinations though I did see another local specialist in between.

Basically the watch & wait is frustrating b/c my 1st BMB indicated 5% plasma cells in summer 2013 and an M spike of .375 and in 2014 May a BMB at the regional cancer center indicated 10% plasma cells with this time clonal cells found (91% of all plasma cells were aberrant with several types noted including CD20 and small mature plasma cell morphology).

A few things that are discouraging - starting with the 2nd specialist I have been told that it's a good sign that the following items were "fine" where each has gotten worse / appeared:

- my plasma cell % was under 10% per BMB in 2013 which later in 2014 it was 10% (I know this can vary due to "hot spots")

- it was great that my M spike remained in the .400 range in 2013 - 2014 but since summer 2014 it has now DOUBLED - as of last week my M spike is .900 g/dL

- I was always told it was great that my uninvolved (healthy) immunoglobulin levels were within normal range but starting end of 2014 my IgM has dropped well under "35" , it's now "26"

- also my "good" IgG level is under 400

One positive is that my anemia has improved to the bottom of normal (H&H) following Testosterone treatment.

So the doubling M spike in the past 1 year (since being diag as SMM) from .425 to .900 in one year and up drastically from the faint value of 2010 - it's just not so easy to keep watching and the values rise (.100 to .400 from 2010 to 2013 wasn't so bad but .425 2014 to .900 at present, that's a bit much though I know it's still low compoared to the folks with plus 8.0).

Also as the immunoparesis takes place (below normal IgM).

Thankfully my FLC ration is within normal limits though it's increasing each workup (began at 0.79 and is now 1.4) - at this rate the ratio will be too high in another year if the M protein keeps rising.

Also luckily Bence Jones proteinuria is only found via urine IFE not UPEP (though my UPEP from last week is still outstanding it should be fine, I do have over 200mg of protein in my urine regularly <no diabetes, of high blood pressure, not sure of the cause for above avg protein in urine, perhaps it's the M spike, I can never get a answer on the cause of the higher than normal levels of protein found in urine).

So while definitely I'm not high risk Smoldering Myeloma , I do have 10% plasma cells in marrow as of spring 2014 when my M spike was only half what it is today Oct 2015 , decreasing below normal IgM , M spike that's doubling - it's just a little worrisome that these items such as Immunoparesis appear and the M spike keeps increasing.

I know I don't have active multiple myeloma at this time (i've also had two fully body PET CT scans, abdominal fat pad amyloid biopsy) as I've undergone extensive testing and sure i'm CRAB clear - NOT being able to stop the rising M spike, lowering IgM , rising FLC ratio , protein in urine etc is frustrating.

It's just odd knowing that I technically have a blood cancer (SMM) but there's nothing that can be done as we watch the M spike rise (if it were steady it would feel better , I know .900 isn't all that high but considering it was only .425 a year ago when my BMB indicated SMM, it would be so much easier to forget about if things would remain the same - also the items that you hear that are positive in the past and turn for the negative such as healthy IgM levels in my case, it kinda goes against the "oh you are gonna be fine, odds are progression will not take place or sure you can go to yearly check-ups as it will stabilize" ....

Guess what I'm getting at with this lengthy post is that while I know i don't have active multiple myeloma at my age of 44 and rising levels it just sort of feels like progression to active is imminent and I guess my wife having a rare blood cancer that is active already has shown us that "it can happen".

In her case - all tests were "just to be sure she didn't have cancer" and it turned out that she did though for her age it was unlikely so we've been thru it with her cancer (actually she'll fight her cancer with daily oral chemo for life or a stem cell transplant as a last resort) - I would rather NOT know that I had SMM b/c there's nothing we can do.

I know that knowing early of my situation will allow for treatment IF it becomes active possibly earlier than if we didn't know in advance and weren't monitored but really it's not that much of a difference - my M spike is doubling and I'm still now moved to an every 6 month workup period vs each 90 days so the past few years of "knowing" , it's great that active multiple myeloma has been ruled out but other than that I wish I did not know of the entire situation b/c we have our hands full with my wife's active cancer and knowing I have to support us , it's a little scary knowing that my levels keep gong up , the lowering IgM, etc -

What I'm banking on to make me feel like knowing "early" is worth it is that the SMM vaccine ends up a reality for everyone with SMM and the entire M protein eradicated cutting out the possibility of progression - otherwise honestly at this point watching the levels go in the wrong direction I'd rather not be aware of - at least I rarely research these days and worry or think about it (except obviously tonight, LOL) and hopefully soon there's a cure for active multiple myeloma and those with precursor disorders.

[alo0216]

Re: Watching and waiting

by alo0216 on Fri Oct 16, 2015 10:00 am

My husband is 44 and same numbers as you. Doubled in past year. 0.9 M-spike, 1926 IgG, 10% bone (last year was zero). Wait and watch doesn't work for us.

Have you heard anything about Rick Simpson oil working?

[pinball]

Re: Watching and waiting

by pinball on Fri Oct 23, 2015 2:24 am

Hi, hopefully your husband's figures level out as well. I'm not familiar at all with the oil - I'll have to search. Though I post here sometimes (lengthy posts as there's so many tests / results) I really haven't researched possible methods to naturally slow progression - that's something I guess I need to do as well as get more sleep and eat better plus exercise & reduce stress.

With my wife having Leukemia also at a younger age & requiring perm targeted chemo treatment - all within the past 2 yrs we've had some bad luck and hopefully our luck will turn for the better reducing stress and slowing down my progression. I'll check into the oil this weekend. Thanks