Well, let’s see. There’s good news, and there’s bad news. Compared to my last set of tests, done months ago, my red cells, hemoglobin and hematocrit have slipped slightly below the normal range. Just a shade, so I’m not overly concerned. I can bring those numbers up with diet…
Let’s continue with the bad news.
- My m-spike: it’s gone over 3 for the first time since 2011. Bummer, that. But I’ve seen it go up, then down, so again, I’m not overly worried. In my last set of tests, e.g., my m-spike was lower compared to previous tests. I therefore expect it to go down with my next set.
- Total protein is also up: 10.7. It’s been as high as 9.9, but this is the highest it’s ever been. This number HAS TO COME DOWN. Period.
- Gamma globulins are up a bit, too. Okay, Mr. Gamma, I’m on to you…you’d better watch out!!!
- So is my parathyroid…up, just a wee bit. This means that I need to get back on my daily vitamin D (I stopped a week before the tests, following my family doctor’s advice, which was to stop taking it a week before getting tested).
Ah, but there’s a bunch of GOOD stuff, too! And here’s a bit of advice that has helped me tremendously in the past 8 years plus: when you go over your test results, try NOT to focus on one or even two bad numbers. Look at the WHOLE picture. Things might not be as bad as you think…Okay, here goes:
- Beta-2 microglobulin: no change. 🙂
- C-reactive protein: it’s LOWER than it was last time (it’s gone down a whopping .20, which doesn’t sound like much, but consider that the normal range is as follows: “less than .50“!!! Is that a 40% drop? Something like that…I’m not a wiz with numbers…
- IgA: slightly up, from 6 to 7 (yes, I know, it’s just a smidgen, but even the slightest change in the right direction is more than welcome!!!). No change in IgM, but, as long as it’s staying put, I’m happy.
- Ferritin (= iron stores) is up from 31 to 39. My serum iron is slightly lower than it was months ago, but still way within the normal range.
- Creatinine (serum) and creatinine clearance (both serum AND urine) are both fine. In fact, all of my creatinines (they ran a bunch of creatinine-connected tests this time) are fine. 🙂
- Freelite chains. They’re still high (but then, they’ve always been high, so I wasn’t expecting a miracle), but they have improved A LOT compared to last time. Big move in the right direction.
- No Bence Jones. As usual.
- UPDATED on November 30: serum calcium is also way within the normal range.
Now, I wanted to discuss the next test separately from the others. You see, I had a new test done, a test I found out about in the Australian MGUS curcumin trial, in fact. This test checks one of the breakdown products of bone called “deoxypyridinoline” (hey, try pronouncing THAT fast, three times in a row, I dare you! ;-)). This deoxythingy is a specific marker of osteoclast activity and bone resorption. In simpler terms, it helps determine if you have bone disease or not. Well, my deoxythingy result is fully within the normal range,. Oh, and so is my deoxypyridinoline/creatinine ratio. Purrfect.
I think that’s about it. In conclusion, I’m not ecstatic (I would certainly have been much happier if all of my MM markers had simply…disappeared!!!!!), but I’m not devastated, either. In this last period, you see, I’d gone down to 6-6.5 grams/day, and, I admit this publicly!!!, there were days when I didn’t take it at all, for one reason or another. I now realize that THAT was a HUGE mistake. These test results confirm that I need to be on a regular AND higher dose of curcumin. I’m not taking my albumin, total protein, Hgb levels and m-spike numbers lightly, believe me…
So, no more 6 grams for me. I’ve already gone back up to my usual 8 grams. And I’ve added 1.5 grams of quercetin (which I’d stopped taking, because I ran out of it), too. And, well, we’ll just to have to wait and see how I do next time! No worries.
Margaret. Thank you for keeping us posted. You may not hear from me often but I want to know how things are with you. That is pretty incredible that the IgA was slightly up. I have never seen that number go back up for me once it goes down although my other numbers jump up and down. Since I only test once a year with MGUS, I was very interested to see that particular number in my annual tests. Aaah, but the lab forgot to do that quantitative part of the test and insisted that it wasn’t ordered.
I hope you are feeling well anyway. I was wondering if you’d had recent vaccines, cause a past year’s vaccine made my total protein and my IgG go up (could be good or bad) ; but then noticed in previous post you had not. I just ordered extra Curcumin to prepare for mammogram next month. Thanks to your research summaries, I knew it would be protective of possible adverse affects of that testing.
I’ve got my fat pants on and I’m off to eat turkey. Happy American Thanksgiving to you.
Thanks for the update. Have you ever had a total body x-ray or other scan to see if you had a bone lesion?
Yes, I have. No lesions (knock on wood!).
Thanks for sharing your numbers and your thoughts, Margaret. Can I ask how you propose to increase your hematocrit with diet. Mine has also slipped and I want to get it back up too.
Cheers
Well, I’m going to give diet a try, anyway. And then I’ll have my next tests in Feb or early March.
In the meantime, I’ll be eating food that is high in iron, such as red meat (free-range, no antibiotics, no hormones, etc.), dark green and leafy veggies such as chard, spinach (with lemon juice to help with the iron absorption). I usually eat both together, by the way…a steak (rare, in the Tuscan way) and a veggie with olive oil and lemon juice as a side dish. Beans, fish…you can find endless lists of iron-rich foods online.
Beef liver would be the best, but I can’t stand the taste of liver (though Stefano has vowed he’s going to make me some, in a way that I will eat it, so we’ll see…). I also read that pumpkin seeds are high in iron, but you might have to eat 1000000 of ’em to get a minimum amount, so the jury’s still out on that one! 🙂 There’s also quite an amazing amount of iron in 80% dark chocolate. Ah, check out this list http://www.huffingtonpost.ca/2012/11/15/best-foods-for-iron_n_2130411.html?just_reloaded=1#slide=1763991 Well, well, dried thyme…I guess I’ll have to dry some of my thyme, then.
If you find something that works, btw, please let me know, and I will do likewise. Thanks!
P.S. Here’s another website that might be useful (I’m looking at it now): http://www.irondisorders.org/diet/
Get on it and get over here! Do not worry……… I will let you win at Scrabble!
Canadian numbers are based on grams per liter, and I am never sure if I am comparing results correctly!
Hi, Margaret! Thanks for sharing your results! I do, however, agree with Veronica: it would be very helpful to have the units as well, not only the numbers. Here in Denmark not all the tests are the same, and when they are, they may be reported in other units. 😉
Margaret,
If you don’t mind me asking, how high were your freelites (Serum Free Kappa Lambda Light Chains)? The reason I ask is that I’m about to embark on a round of velcade/dex cycles given that my Kappa level is 600 mg/l and rising. Lambda is within range.
Tom
Hallo Margaret:
Thank you so much for sharing your test results. I do hope that by your going up to 8 grams will help the situation. Life is a mixture of good and bad, we just have to make the best of it. I do admire your positive attitude and wish you all the best. Hugs, Beatrice
Margaret
This is my first post here. Like you, I was initially diagnosed with MGUS, IgG variety. The other two are normal and have not moved.. This happened two years ago but I believe I have had it for very long time. Recently my M spike moved over 2 to 2.20. that was up from a measurement two weeks previous at 1.94. But my annual bone marrow moved from 7-10% last year to 14-20% this year. My FLC is way up. Two years ago the ratio was 6. For the last year it has been 75-84.
My oncologist wanted be to start 15mg Revlimid. The theory being that she wanted to see my marrow back below 10%. I don’t have to tell you all the issues and problems with that approach.
Got a second opinion and the second doc agree, no CRAB, no treatment. I’ve been in touch with another SMM contributor I found here who has been stable through supplements for many years. He has been a great resource. Already the supplement approach has helped with other issues I have. We will see what the numbers say re. SMM in two weeks.
I’m scared, no question. I am more cognizant of how many seconds (time) I may, or may not, have. But as you say, it is just numbers.
As an aside, I became an Italian citizen two years ago through jus sanguinis. It was a lot of paperwork but worth it. Hope to visit Italy for the first time soon.
Hi Margaret
I haven’t dropped by Margaret’s Corner in a while but have just seen your post about your latest results. I have been ‘smoldering’ for 6 years now and have recently had my 6 monthly check up. However they don’t give me half of the detailed tests that you get eg ferritin, albumin, etc. They just do standard tests like paraprotein, kidneys, calcium, liver, full blood count etc. On that basis maybe some of these more detailed test results aren’t that significant in the big scheme of things. For what its worth my protein rose to 13 at one point over the last 6 years but has been about 10 for some time now 🙂
I have folIowed your site for 7 years since I was first diagnosed, it has been a great source of information, thankyou. I agree it would be helpful to know what units your levels are in. In Australia we use grams per litre. Also what is your haemaglobin level
I know what you mean by different reference ranges. All the testing labs in the city of Florence have slightly different ranges, too. Maddening. There should really be a universal standard. Blog readers will occasionally send me their test results, and I find it very difficult, even impossible, to figure out what is going on…
But I will give you a few numbers, anyway. My hemoglobin is 11.7 g/dL. The reference range is 12-15.5 (g/dL).
Red cells are 3.85; should be at least 3.90 (10*6/mmc). The reference range goes up to 4.90.
Hematocrit is 34.2%; should be at least 34.5% (up to 48%). As you see, all three numbers are ALMOST normal…
Total protein reference range: 6.1-8.1 g/dL. Mine is 10.7, but it has been as high as 9.9.
Hope this helps! I have to go work now. Ciao!