[Ian]

Re: Just diagnosed on Friday

by Ian on Fri Oct 10, 2014 8:20 am

Hi Fingerscrossed,

I agree with what Multibilly said. The one thing I didn't see when going back over the results you've posted, however, is whether you've had any imaging work done, beyond just simple xrays. Have you had any MRIs or PET/CT scans done?

With your low bone marrow involvement, I wouldn't necessarily expect the more sensitive imaging to pick up any abnormal areas in your bone marrow ("focal lesions"). But whether or not you have such lesions can give additional information about your risk of progression.

"MRI Of The Spine Identifies Smoldering Myeloma Patients At High Risk Of Progressing To Multiple Myeloma," The Myeloma Beacon, Aug 26, 2014.

I also would think that you and your doctors would want MRI or PET/CT scans from this point in time to have as a baseline for future comparisons.

[FingersCrossed]

Re: Just diagnosed on Friday

by FingersCrossed on Fri Oct 10, 2014 8:35 am

Ian,

I have not had any scans other than the Xray done. I think I might have some chromosomal abnormalities that put me in the high-risk smoldering camp, so I have already added a question about PET scans and MRIs to my list for my next appointment with my hematologist.

I think my calcium level is borderline at 9.7, so maybe I should ask about that?

Multibilly, here is what my PCP's notes say under the heading "Serum Protein Electrophoresis SPEP":

Prot total 8.7H (6.1-8.1), gamma globulins 2.2H (0.6-1.6), abn protein band 1- M protein 10/14

I'm wondering if there was nothing detected for the abnormal protein band test since there is no number there?

Elsewhere in his notes:

Urine Protein electrophoresis neg NL no monoclonal protein detected 10/14

Immunoglubulins quantitative- all NL but IGG 2411H (694-1618) 10/6/14

Serum free light chains Free Kappa & Lambda & ratio - Kappa LC Free 18.8 (3.3-19.4), Lambda LC Free 9.1 (5.7-26.3) Free Kappa Lambda ratio 2.07H (0.26-1.65) 10/6/14

I just switched to this PCP a few months ago and I'm so glad I did. He is very diligent about getting results to me quickly. Hopefully, he will upload the full results today so I can add measurements.

[Multibilly]

Re: Just diagnosed on Friday

by Multibilly on Fri Oct 10, 2014 10:55 am

FC,

Did you also have a serum (not a urine) immunofixation (IFE)? This tells you whether or not you have a monoclonal protein (an M-spike) in your blood and what type it is... but not the actual value of the M-spike. The SPEP will tell you the value of the M-spike. With an elevated IgG level, you likely have an M-spike of some sort.

The M-spike can appear as a separate notation by the original pathologist elsewhere on the SPEP report. But it sounds like you are just looking at notes on what the doc saw on the lab report, but not the actual lab report itself, right? Suggest you just chat with your hemotologist and look at the original SPEP lab document with him. With your IgG level, your M-spike (assuming there is a measurable one present) isn't going to be that large, so I wouldn't fret about it before your appointment.

Ian makes a really good point about imaging. A PET/CT and possible spinal MRI would be a good thing to inquire about, given you have a 17 monosomy. You might want to also read and bring up a copy of this article if your hematologist isn't necessarily sold on additional imaging.

Dr. Prashant Kapoor, "To PET or not to PET," Beacon forum posting, Jul 24, 2014.

[FingersCrossed]

Re: Just diagnosed on Friday

by FingersCrossed on Fri Oct 10, 2014 11:23 am

Multibilly,

Looks like I did have the serum immunofixation. His note says: IGG kappa monoclonal protein present 10/6/14.

I sent him a note to ask if there were any other numbers in the SPEP part of the report.

And yes, I am just looking at my PCP's notes and not the actual lab report. He is usually pretty good about uploading the reports in a timely manner so that I can see the actual results. I'm hoping he'll get to it today.

Is there any success in treating people with 17 monosomy? Is it the case that people with this profile are treatable, it's just tougher to get a good response?


Thanks for all your help. I think the fairly decent blood results have helped calm me down somewhat even though I am still trying to learn how to deal with my new reality.

[Multibilly]

Re: Just diagnosed on Friday

by Multibilly on Fri Oct 10, 2014 11:35 am

Oh, you are looking at online results/notes? While some folks are able to get their M-spike values from online summaries, my personal experience with three different institutions is that this particular value is never included in the online summaries. That's why it's always good to get complete copies of the original lab reports, not just online summaries .... at least for me.

There are good success stories for folks with 17p- on this forum. Yes, it can be harder to treat and every patient is different, but it is treatable. The bottom line is that you need to work with a top multiple myeloma specialist that really knows their stuff and can select the right drugs and approach for this condition ... if and when you were to progress. If you let us know where you live, folks on this forum might be able to make some recommendations. Or, maybe you are already working with a top guy ....

Best of luck to you next week.

[FingersCrossed]

Re: Just diagnosed on Friday

by FingersCrossed on Fri Oct 10, 2014 1:25 pm

OK,

Here we go. He uploaded the full lab report.

Abnormal Protein Band 1 is 1.9 g/dL. Is that the M-spike?

Also, my hema/onco doc has already given me the name of a "top guy" to consult about all of this. So, I will have a lot of questions for him.

[Multibilly]

Re: Just diagnosed on Friday

by Multibilly on Fri Oct 10, 2014 2:11 pm

Yep, that's your M-spike. That's about what mine is. The value will bounce both up and down as you continue to get tested over time.

It's great you already have the name of a specialist.