[dvdauthority]

Wife may have myeloma - next steps?

by dvdauthority on Tue Feb 10, 2015 2:40 pm

Hello all, found this forum and figured I’d post a few things…

First off, there’s a fairly good chance my wife might have multiple myeloma. She’s having a PET scan (I think that’s the correct terminology) this Friday and we’re told we’ll get the results a few days later. It’s my understanding that this test will tell if she has multiple myeloma or not. Please correct me if I’m wrong.

I will say that my wife had me pretty worried and, as I’ve seen on this forum alone, there’s a lot of outdated and, dare I say, “misleading” information out there. But I figure I’ll ask a few questions and let you all know what I do and I can take it from there.

She does have MGUS, which from my reading can sometimes be a precursor to multiple myeloma. Her reading is 0.5 (or 0.05 – whichever one is on the scale). It’s my understanding that, if your level reaches 1.5, you have multiple myeloma. Her levels have remained relatively steady for a few years now.

She’d had a radiation bone scan last week via her GI doctor. Why him, I have no idea, but he’d responded back by saying that it might be consistent with someone who has multiple myeloma. She then contacted her oncologist who didn’t quite agree with that statement, but has ordered her PET scan just to be safe. The order is marked “Initial Staging,” so we're not sure if that’s a reference to a stage of cancer or the first scan or what. If anyone can shed some light on that, it’d help.

Secondly, factoring in the worst case scenario, I’m wondering what the process is from there? She just turned 50 years old and from some research here, I see that chemo and stem cells seem to be helpful in some folks. Also, there looks like there’s no shortage of drugs to help combat this as well. Also it looks as if there’s been a lot of headway in the last decade, so that’s a good sign as well.

Now I realize that everyone is different and someone might respond to a treatment whereas someone else might not. I suppose I’m wondering what factors “matter”, though?

Would changing your diet (i.e. eating organic) help?
Quitting drinking?
Routine exercise?

After reading a few topics here, it looks like this isn’t quite the death sentence (pardon that phrase) that my wife made it out to be. Granted, I realize it’s still a form of cancer, but I’ve read where people are living 10, 15 and even up to 20 years after being diagnosed.

I think that might be it for now. As I said, she’s yet to have this scan and, for all we know, the results might be negative (or positive … whichever one isn’t cancer), but figured I’d see if I could siphon some information from folks like you who have compiled it.

Thank you for any and all help you can offer.

[Multibilly]

Re: Wife may have myeloma - next steps?

by Multibilly on Tue Feb 10, 2015 5:11 pm

Hi DVDauthority,

Is your wife working with a doctor that specializes specifically in multiple myeloma (not a oncologist / hematologist, who might just see a handful of multiple myeloma patients)? This would absolutely be the first thing I would be doing before jumping to any conclusions about whether she might have symptomatic multiple myeloma or not. If you let us know where you live, folks on this forum can provide some recommendations.

I'm not sure what you mean by "Her reading is 0.5 (or 0.05 – whichever one is on the scale). It’s my understanding that if your level reaches 1.5, you have multiple myeloma". We really need to understand what is being measured and what the units of measure are (i.e., monoclonal protein level of 1.5 g/dL). If you are talking about the monoclonal protein level (aka M-spike), this by itself does not provide a diagnosis for symptomatic multiple myeloma.

A PET/CT scan will help tell a doc if there are any focal or lytic lesions associated with a cancer such as multiple myeloma. But this is only one of several diagnostic tools. If symptomatic multiple myeloma is truly suspected, a specialist would also likely run a new set of complete laboratory tests, some new imaging (which she is getting) and perhaps follow that up with a new bone marrow biopsy test, before making a judgment on whether somebody had symp­to­matic multiple myeloma.

Eating healthfully and exercising is always a smart thing to do, especially if you have cancer.

Hope this helps a bit.

[dvdauthority]

Re: Wife may have myeloma - next steps?

by dvdauthority on Wed Feb 11, 2015 2:12 pm

My wife has already decided to ditch her oncologist. Her PET scan is Friday, and he wants to give us the results on Tuesday (should make for a fabulous weekend, I'm sure). However, she is a RN and works in a job that allows her to see many MD's and she also works with a lot of drug reps. Case in point, a pharm. rep. friend of hers identified no less than 4 MD's who specialize in multiple myeloma at Johns Hopkins (we live in the Baltimore area). So having access to top notch help shouldn't be an issue, providing, of course, things turn out for the worst. But any insight into MD's in the area would be appreciated.

I will say that I've found this site to be very helpful and though I'm still in a state of shock (even before this test has been run), this community is clearly very helpful and informative.

My apologies about the MGUS reading, yes that was her M-spike reading, she'd told me that was the one that "matters" when it came to multiple myeloma. I don't really know any of her other readings from her most recent test other than that number.

Regarding your third paragraph below, if I'm reading it right, it appears that even if her PET scan comes up - there's still other test to run just to be sure? Or if the PET scan is pretty conclusive, do they pretty much proceed to treatment?

Like most, if not all, of you I'm still trying to wrap my hands around everything. I've not even celebrated 5 years with my wife and now we've got this potential thing looming. Granted, I won't say how "life isn't fair" - we all know it's not. But I do have a few basic questions (and I realize there might not be definitive answers).

• I suppose it's normal to be concerned about longevity. I've seen the average life span is anywhere from about 8 to 15 years with new treatments coming out. I suppose my question would be (and this might vary from person to person) how many of those years would be "normal?" I realize that might be an odd word choice, but my wife and I are pretty active. Is there a point in time in which she'd eventually be relegated to her bed? If so, when? I've never had any first hand knowledge of anyone with cancer, so this is all very new to me.
  
• Supposing she refuses treatment (and I know she won't) and just said "when it's my time, it's my time" what would the life expectancy be? I don't want to sound morbid, but providing the disease was allowed to run its full course - what would the lifespan be without any treatment?
  
• How do others deal with this? Granted she's my wife, but her mother is still alive, she's got two kids (I'm their stepfather), and 3 siblings - all of whom have very bad medical issues themselves. Do support groups help? Books?
  
• Financially speaking, how much does this set one back? She's got a full-time job with great health insurance, but how much treatment is covered by insurance?

I suppose that's all I can think of right now and I'll check out the PDF you sent. Thank you to anyone who can shed some light on this.

[Multibilly]

Re: Wife may have myeloma - next steps?

by Multibilly on Wed Feb 11, 2015 2:34 pm

A PET/CT is pretty darn good at picking up both focal and lytic lesions associated with multiple myeloma.

If she has lytic lesions or more than one focal lesion that is at least 5mm or greater in size, and it is confirmed that these are associated with multiple myeloma, then your doctor might consider her to be symptomatic. But it's always a judgment call as to exactly when a doc would start treatment.

Again, if the PET/CT came back positive, most specialists would sill likely order up a complete new set of laboratory tests and a new bone marrow biopsy before making a final diagnosis and certainly before starting any treatment. These tests provide invaluable insights that would help determine the appropriate treatment (and a baseline) for her particular situation.

Note that an M-spike of 1.5 g/dL is not really that high and it certainly would not be a reason to think that her PET/CT would come back positive for any lesions. I am smoldering and I have an M-spike of 2.2 g/dL and I could very well cruise at this level with no issues for the rest of my life....and my latest PET/CT results just came back completely clean last week.

[mdszj]

Re: Wife may have myeloma - next steps?

by mdszj on Wed Feb 11, 2015 8:29 pm

Multibilly

You mentioned in your post that an M-spike of 1.5 g/dL is not really that high - I have been wondering what actually constitutes "high". I just got dx with multiple myeloma in early January and my IgA level was 1597 mg/dL (ie ~ 1.6 g/dL). My k/l ratio is ~ 49. Would you consider these levles high? I am trying to get a handle on where I stand as far as these levels. My hemo said I have smoldering multiple myeloma and the specialist I went to said it is too early to tell whether it is smoldering or not until my next blood draw so they can see its rate of progression. Does this sound right to you? I thought you only need 1 set of results to know where you stand.

thx Mike

[Beacon Staff]

Re: Wife may have myeloma - next steps?

by Beacon Staff on Wed Feb 11, 2015 8:37 pm

Mike,

These weekly polls here at The Beacon may provide you with some information that's helpful:

M-spike at diagnosis (multiple myeloma):
https://myelomabeacon.org/forum/weekly-poll-m-spike-at-diagnosis-2014-t3136.html

M-spike in smoldering myeloma (with stable M-spikes):
https://myelomabeacon.org/forum/weekly-poll-smoldering-myeloma-m-spike-t2286.html

M-spike in MGUS patients (with stable M-spikes):
https://myelomabeacon.org/forum/weekly-poll-mgus-m-spike-t2285.html

[ByYourSide]

Re: Wife may have myeloma - next steps?

by ByYourSide on Wed Feb 11, 2015 8:50 pm

First, take a deep breath and realize that, from now on, it's one day at a time. Lots of information will come your way and you can read a ton of articles ... your head will spin!

My husband was diagnosed with multiple myeloma this past December. He was complaining of persistent rib pain and went to his PCP. (Up to this point, he was a healthy retired individual) Bloodwork was ordered, next day we were told to go to Emergency Room immediately because he was in acute renal failure. The rib pain was from rib fractures as seen on CT scan. He was admitted to the hospital and the treatment started for the renal failure. Next day, a bone marrow biopsy was done and literally, within an hour, he was started on chemotherapy.

He has completed 2 cycles of induction therapy and the renal problems are resolved. He is tolerating chemo very well and I am pleased that we have hope. We have been to Dana-Farber in Boston for a consult for a stem cell transplant in the near future and have been very impressed with the level of knowledge there. I would definitely recommend seeing a myeloma specialist to get the best and most up-to-date treatment available. Our doctor at DF is working closely with our local oncologist.

You may not have had experience with cancer, but you will learn as you go along and, when the dust starts to settle, you realize that you can and will be "okay" with things. You will be strong for your wife. You will count your blessings, no matter how small and, with the help of your treatment team, support from family and friends, and information from people on this site, it will be okay.

I was devastated when I heard my husband's diagnosis, and I panicked and cried, but I realized that we are a team and we will get through this together and he needs me to be his strength. I am a cancer survivor, and he will be too!

Good luck to you both!

[KS1960]

Re: Wife may have myeloma - next steps?

by KS1960 on Wed Feb 11, 2015 9:00 pm

dvdauthority,

Your post really resonated with me. We are currently waiting for test results also. My husband has had declining hemoglobin levels, did some additional tests and had an M-spike of 1.5 g/dL, elevated protein and creatinine levels. So, his oncologist had a full skeletal x-ray, bone marrow biopsy, 24-hour urine, and additional blood testing done. We don't get the results until February 17, so, like you, I am really trying to wrap my head around this whole thing.

The oncologist believes it is stage I myeloma, at worst, and could be much better. We are working on trying not to go right to "Oh my God, oh my God, it's cancer and he's gonna die". One of us is doing better than the other.

We are rural, so won't be going to a myeloma specialist on a routine basis, although we are about 3.5 hours from Duke University. So, if it is myeloma, we would like to see a specialist once a quarter. The oncologist / hematologist is a phenomenal doctor, in my opinion, so I am very comfortable with having him be in charge.

So 6 more days until we know.

[Tracy J]

Re: Wife may have myeloma - next steps?

by Tracy J on Wed Feb 11, 2015 9:29 pm

In 2012 I was diagnosed with AL amyloidosis after a lot of testing. AL amyloidosis is related to myeloma in that it is a dysfunction of the same cell type and is treated in similar ways. I had an autologous stem cell transplant at Boston Medical Center and did well. AL amyloidosis is not considered curable - it always comes back and the prognosis is not great.

Then in August of 2014 I developed bone pain in specific places, and after a whole bunch more testing, I was diagnosed with myeloma. My myeloma is non-secretory, so it cannot be followed with SPEP, UPEP or serum free light chains. Also, my bone marrow biopsies have always shown a normal percentage of plasma cells, so it cannot be followed with bone marrow biopsies (yay!).

You may ask yourself then, how did I get a diagnosis of myeloma? Good question. I had two separate biopsies done of a big sacral tumor eating through my bone and they are a clonal plasma cell population, kappa type. I have bony lesions all over the place in a typical myeloma pattern (axial skeleton). My myeloma can only be followed by symptoms and imaging.

So I have spent many many days and weeks waiting for test results - more than I care to think about. I can say that even though I don't want to admit this myself, it feels better once you have an answer and a plan.

For both the AL amyloidosis and the myeloma, the waiting for the diagnosis was horrible. It's so anxiety-producing. I feel for you. Hang in there. Having myeloma is difficult and scary and in many ways awful, but I really think the beginning is horrible, and it does get better.

[MaryB]

Re: Wife may have myeloma - next steps?

by MaryB on Thu Feb 12, 2015 10:32 am

Dvdauthority,

You ask questions we all want to know. How bad will it get, how long will they live, what quality of life will they have? No one has that answer except God. Each person is different. When my husband had his transplant he was so sick he couldn't get out of bed. Yet there was a man there that was up and walking 5 miles a day in the hall way. There was a woman there that never got sick, yet they all took the same chemo.

I read this forum and realize how lucky my husband is because some of these people are a lot worse off then him. He's had no broken bones, no hospital stays except for transplant. Has he been sick ? Yes.

Financially, it is very expensive. But, again, there is help out there and it doesn't go by income. We have good insurance but the drug companies called and offered to pay our co-pay. So, if they don't call you, you call them. Also, Patient Assistance Foundation also helps (1-866-316-7263).