[dianaiad]

Now what?

by dianaiad on Sat Feb 16, 2013 4:09 pm

Hi...

I'm 63, have five grown kids, teach English online....and I'm not sure that I've been officially diagnosed with multiple myeloma or not. The doc thinks so...at least he keeps 'preparing' me for the diagnosis. The thing is, all the blood tests keep coming back 'yep, that's it."

..............and two months ago all I had was a very mild case of anemia! Mind you, my knees have been hurting, and so has my hip, but I put that down to not getting completely over knee replacements (arthritis) and bursitis (the hip).My back is fine. So are my ribs.

The thing is, all the research I have done so far tells me that, well, yeah. Unless there is something ELSE that produces this precise set of results.....but according to the ISS staging, if we use blood tests alone, I'm a fairly solid stage II.

Or maybe not.

NOW what? The problem with me is that I can't even go to a movie without knowing how it ends FIRST. I read the last page of the book before I read the first one. I really, really, REALLY loathe surprises and secrets, so....I need DATA.

Now what?

[Multibilly]

Re: Now what?

by Multibilly on Sat Feb 16, 2013 7:03 pm

Hi Dianaiad,

Sorry to hear that you are dealing with health issues.

You don't share a lot regarding the type and results of your blood tests, just the fact that you have some anemia going on.

1. Are you seeing a specialist that handles many cases of multiple myeloma each year? I can't emphasize this enough. Multiple Myeloma is a challenging disease and you need to be working with someone that lives and breathes this disease on a daily basis.

2. To really determine if you have multiple myeloma, just what stage you are at, whether you have any other issues going on related to multiple myeloma, and what treatment options might be open to you, you should be getting the following tests done that Dr. Shain outlines in this thread:

https://myelomabeacon.org/forum/what-are-the-chances-of-me-having-multiple-myeloma-t1666.html

Best of luck to you and don't despair. If you do have multiple myeloma, there are many treatment options open to you and you can live a long life with a good degree of quality.

Also, a lot of folks on this site can help with answering your questions as you sort through all this.

Multibilly

[Nancy Shamanna]

Re: Now what?

by Nancy Shamanna on Sat Feb 16, 2013 7:05 pm

Hi Dianalad, I hope that you don't have myeloma, but if you do, please try to dodge that 'dozer!! There is so much information available now to us patients online, and I think you have found a good site at the Myeloma Beacon.

Hope you will keep us posted, The uncertainty of staging, treatments etc. can be unnerving, but of course nobody really knows what will happen tomorrow! So we do the best we can and set our course according to the best advice and treatments available! Best wishes to you!

[dianaiad]

Re: Now what?

by dianaiad on Sat Feb 16, 2013 10:18 pm

Multibilly wrote:
> Hi Dianaiad,
>
> Sorry to hear that you are dealing with health issues.
>
> You don't share a lot regarding the type and results of your blood tests,
> just the fact that you have some anemia going on.[/quote]

I don't actually know what to share!

Let's see...albumin is 3.4,
Beta 2 microglobulin is 4.0
Calcium is 9.0 (That's normal, right?)
and the Quantitative immunoglobulin assay was 43000+ (I forget the exact number).
The reticulocytes...2.0
The 'serum protein electrophoresis' exam...well, I don't know exactly what that one is because Kaiser didn't post it on the website (as they didn't post the quantitative immunoglobulin assay), but the oncology nurse, who refused to give me the numbers over the phone, said that it was 'slightly elevated.' I imagine that this means I have a bit of an M-spike, but given the way those people don't like giving bad news, I have no clue what 'slightly elevated' MEANS.

I'm frustrated.

Can anybody HERE shed some light on this?

I have no real idea what any of the above numbers actually MEAN, really. I'd sure like to!

>
> 1. Are you seeing a specialist that handles many cases of multiple myeloma
> each year? I can't emphasize this enough. Multiple Myeloma is a
> challenging disease and you need to be working with someone that lives and
> breathes this disease on a daily basis.

I have no idea. I have Kaiser Permanente. My doc is a hematologist/oncologist, and he tells me that none of his multiple myeloma patients have died yet. Other than that? Haven't a clue. I'm still VERY new on this journey. I AM a bit nervous about the experience of our local clinic, though; I was told to 'schedule my metastatic assay," and when I contacted the radiology department in the local medical offices, they told me that they 'didn't do that.' I had to go to Panorama City, about 70 or so miles from here. So I called Panorama City, and they told me that I could just walk in and get it done up here. Fine...I called 'up here,' and was told AGAIN that I had to go to Panorama City. So I went 'round the merry go round again...called Panorama City...and they called me back, saying "You can get it in Lancaster."

So I just walked in, registered, and wadda-ya-know, I could get it done up here. I have no clue what the results are from those X-rays yet.

Am I in for a lot of that sort of thing?

> 2. To really determine if you have multiple myeloma, just what stage you
> are at, whether you have any other issues going on related to multiple
> myeloma, and what treatment options might be open to you, you should be
> getting the following tests done that Dr. Shain outlines in this thread:
>
>
> https://myelomabeacon.org/forum/what-are-the-chances-of-me-having-multiple-myeloma-t1666.html


>
> Best of luck to you and don't despair. If you do have multiple myeloma,
> there are many treatment options open to you and you can live a long life
> with a good degree of quality.
>
> Also, a lot of folks on this site can help with answering your questions as
> you sort through all this.
>
> Multibilly

Thank you.. I can handle anything but a lack of information. From what I have learned so far, it's pretty much as you are telling me; there are options, and who knows? I could be barking up the wrong diagnosis.

.........................although somehow............

[Nancy Shamanna]

Re: Now what?

by Nancy Shamanna on Sun Feb 17, 2013 9:32 am

Hi Dianalad, It will be good when you get all your test results in. You will probably also get another blood test, the serum free light chain test (FLC). If all your results point to a diagnosis of myeloma, you will need even more tests, such as a skeletal X-ray survey and a bone marrow biopsy (BMB). There are some really informative booklets available in print and online from the International Myeloma Foundation. They are good reading for the newly diagnosed and for those of us who have been dealing with myeloma for awhile also.

[Multibilly]

Re: Now what?

by Multibilly on Sun Feb 17, 2013 9:52 pm

Building on Nancy's comments above, I would really be assertive about requesting copies of all your lab reports....it's your data after all. It's really handy having your own copies so that you can study them and learn all the details about the key items in the reports as you educate yourself on this disease. And if you should have multiple myeloma, its really a good idea to keep track of the results from one test to the next. Keep us updated on your progress.

As far as you getting a runaround on getting lab and radiology exams done, I've found all the facilities I've worked with (I'm working with three right now) to be quite professional, organized and amazingly and truly caring about their patients. I really don't feel like a "number" when I go to these places.

This is a good link on this site to start poking around to get better educated. You will also see treatment centers listed on one of the links listed here. I'd ask your doctor just how many multiple myeloma patients are currently under his care. And don't be scared about offending your doctor by getting a second opinion (I would further recommend getting a second opinion outside of your current doctor's network as each network tends to have an overall common philosophy around treatment options). Doctors dealing with multiple myeloma are used to this and it is common for multiple myeloma patients to do this.

https://myelomabeacon.org/resources/