[mikeb]

Re: Wife may have myeloma - next steps?

by mikeb on Thu Feb 12, 2015 11:37 am

Hi dvdauthority,

You've gotten good information and advice from other folks in this thread replying to your questions. I just want to add a couple of things.

One thing you'll often hear that is very important is that the longevity figures you see are median survival times. And each of us is an individual, not a median. So there are wide individual differences. Another thing is that there is a lot of research ongoing into multiple myeloma and treatments, and there is a lot of progress being made. So the picture is improving inch by inch, day by day (though not as quickly as we all would like, I'm sure).

In answer to your second question, somewhere I saw a figure of 1-2 year survival WITHOUT TREATMENT after one is diagnosed with multiple myeloma, but I can't put my hands on that reference right now.

Support groups help a lot of us, both patients and caregivers. You can think of this forum as an online support group. But there are face-to-face support groups in many parts of the country that have regular meetings. If you mention where you live, I'm sure someone on the forum can let you know about a support group in your area, if there is one. I am part of the Philadelphia multiple myeloma support group, and it is really encouraging to me to attend the meetings and see folks who have survived for 15 or more years and are doing well. It's also another great way to exchange helpful information about dealing with this disease.

And, to your financial question, I think that all depends on what kind of insurance you have. I've been very fortunate, and so far, having multiple myeloma has not been a huge financial burden for my family due to the insurance coverage we have.

Best wishes to you and your wife,
Mike

[dvdauthority]

Re: Wife may have myeloma - next steps?

by dvdauthority on Fri Feb 13, 2015 8:46 am

Thank you for everyone's comments so far - they are very helpful and I'm sure the same questions have been asked countless times.

Well, the test (PET scan) was supposed to be today, though we got a call from the oncology office yesterday telling us that the insurance company had declined the test saying "her results showed no decline" (I take it they were going off her MGUS tests). We called back, and the office is evidently appealing the insurance company's decision. I take it this is fairly common? I mean it's only been the longest week of our lives, so why not throw this into the mix, right?

Still, it does make me wonder how many people out there with any sort of ailment (not just cancer) are denied coverage/care simply because an insurance company says "no." I don't want to turn this into a political / healthcare debate, just thinking out loud. But the insurance is actually pretty good, so I'm sure it'll get overturned, but I doubt the test will happen today.

I was also doing some research on any celebrities who had multiple myeloma and saw that Roy Scherer, Peter Boyle, and Geraldine Ferraro all had it and, sadly, have succumbed to it. Maybe the fact that Tom Brokaw has it might raise some awareness?

Again, thank you for everyone's help - I'm finding that I'm having good days and bad. Yesterday was a good day. Not sure how today will go. Then again, I was up at 1 a.m. on Wednesday crying my eyes out on the couch thinking of how unfair things are. I think Tom Petty nailed it when he said "The Waiting is the Hardest Part ..."

[Multibilly]

Re: Wife may have myeloma - next steps?

by Multibilly on Fri Feb 13, 2015 9:01 am

My recent PET/CT request was rejected for similar reasons. My doc's office appealed it with some choice words about my numbers and I was then approved in a matter of hours. So, it does pay to appeal.

Your doc's office probably knows how to put the best spin on why the latest numbers would justify a PET/CT.

If the appeal doesn't work, your doc will likely just proceed with a skeletal survey (whole body xray). Skeletal surveys were the gold standard in imaging for multiple myeloma monitoring purposes until just a few months ago, so it's not a bad backup imaging technique. Xrays may not be quite as good at picking up very early stages of lesions as a PET/CT or MRI, but they are good tools nonetheless.

[dvdauthority]

Re: Wife may have myeloma - next steps?

by dvdauthority on Fri Feb 13, 2015 12:49 pm

My wife has actually had a skeletal scan once a year and her last one was in October, which came back fine. Heck, maybe the MD's office knows something we don't. And I'm not sure I was too crazy about a PET scan being run on Friday the 13th anyway!

[dvdauthority]

Re: Wife may have myeloma - next steps?

by dvdauthority on Fri Feb 13, 2015 2:57 pm

Also, here's the "diagnosis" from her radiation bone scan. I figured I'd post this as we can't really make heads or tails of it (and she's a RN)!

FINDINGS:

"There is increased activity seen in the left posterior fifth rib as well as likely the sixth rib laterally and south rib more medially. The ribs otherwise appear unremarkable. this is minor activity seen at the level of L4. There is increased activity as seen in both ankles, especially noted on the right with additional activity in the region of the left toes. Especially in the region of the great toe or first metatarsophalangeal joint. There is a focus of increased activity seen in either the upper pole of the left kidney or perhaps an adjacent rib."

IMPRESSION:

"Abnormal exam with areas of increased activity seen th lower lumbar spike likely L3 or L4 and to a mild degree in some of the ribs. This may be evidence of multiple myeloma in this clinical setting, although other etiologies including metastases could produce this appearance. The changes in the ankles and feet are more likely posttramautic or degenerative."

[Multibilly]

Re: Wife may have myeloma - next steps?

by Multibilly on Fri Feb 13, 2015 3:17 pm

DVDAuthority,

I'm not a doc, but bone scans are not used to diagnose or monitor multiple myeloma. Xrays, MRI and PET/CTs are instead used, as well as DEXA scans to evaluate any bone density issues such as osteoporosis. I think it's a bit peculiar that her doctor ordered one, but again, I'm not a doc.

http://radiopaedia.org/articles/multiple-myeloma-1

"Bone scintigraphy appearance of patients with disseminated multiple myeloma is variable due to the potential lack of osteoblastic activity. Larger lesions may be hot or cold. Bone scans may also be normal. Therefore bone scans usually do not contribute significant information in the work-up of patients with suspected or established disseminated multiple myeloma, as the sensitivity of detecting lesions is less than that of a plain film skeletal survey"

[alaskahope]

Re: Wife may have myeloma - next steps?

by alaskahope on Sat Feb 14, 2015 1:28 am

My father was 59 at diagnosis and he lived until 66 years old. He responded very well to all treatments he had. His doctors thought he was a superstar. I think each individual is different and the fact that your wife has MGUS could be a good thing.

My husband is a radiation therapist and he has treated patients who have had MGUS that turned to myeloma at 15 years from diagnosis. I felt like, once my dad's disease was considered myeloma that, in all instances, the doctors felt like 8 years meant he beat all the odds. We wanted more, but are so thankful for each day.

New therapies are possible each year. I would say that your wife should first discuss the side effects of chemo-related neuropathy before she decides on any chemo treatment. It turns out in the "good" years it was the painful neuropathy that held my dad back from living life to the full. Oh, he is so strong that he pushed through all of it. He took pain medication for years and years to take the edge off, but he always hurt. Certain chemo is known to cause more neuropathy, have your wife ask.

Stem cell treatments are what saved my dad. He was treated at the Fred Hutchinson Cancer Center, which I would highly recommend. Look at the work they are doing. They are a leader in myeloma research and partner with UW in Washington. They are simply amazing there.

God bless you and your wife on this journey. Each day is a gift and we were thankful for each we had.

[dvdauthority]

Re: Wife may have myeloma - next steps?

by dvdauthority on Wed Feb 18, 2015 2:26 pm

Ok, figured an update was in order. The PET scan is set for tomorrow, as the MD appealed and was able to get the insurance company to accept. I'm assuming we'll have results early next week.

Now something I'll post here (I posed this to my wife last night, with less than desirable results) is this. She got her GI doctor to do the nuclear (radioactive / whatever it's called) bone scan and, inadvertently, the oncologist ordered a PET scan based on that. The GI doctor said, "This might be consistent with multiple myeloma, please follow up with your oncologist." To which the oncologist replied "Well, I don't really concur with Dr. XX's assessment, but let's order a PET scan just to be sure."

So, again, that's set for tomorrow.

Now here's the question I posed to her, and bear in mind that I'm innately logical, so I understand that the questions I pose don't always make sense to others ...

I said "Well, if your oncologist has been monitoring your progress over the last few years (and he has) and he didn't see a reason to order any further tests, why would you push to have these done?"

Now that sounds a bit harsh, but she just had her blood work that monitors her M-Spike done last week and it's consistent with the same levels she's had for a few years now. She's had a bone marrow biopsy, she's had the 24-hour urine thing done, she's had a skeletal scan (a few, actually), and such.

So my question was: "If they don't see a problem, why do you?"

If all of these tests that are designed to look for and possibly locate multiple myeloma don't spur them to do further tests, why force the issue?

Don't get me wrong, I'm glad she's having this done, as there is evidently something wrong with her, but I look at their lack of further tests as a good thing. Anyone else see this POV, or is it just me?

I think what really brought this on is the fracture that she's had near her ankle since Thanks­giving. It's not fully healed yet, but she does have osteopenia - which I tend to think might be a factor. I've read where fractures are a bit more common with folks who have multiple myeloma, so that might have gotten into her head.

That's pretty much what's on my mind at the moment. I'd be curious as to anyone's input since you all are much more knowledgeable about this than I am.

Thank you.

[Ian]

Re: Wife may have myeloma - next steps?

by Ian on Thu Feb 19, 2015 3:48 am

Hello dvdauthority,

I think your perspective makes sense, but I can also understand why your wife would be worried given the recent fracture she experienced. It basically comes down to how much new information there is in the fact that the fracture occurred, and there probably isn't a lot of good data to answer that question.

So ... best of luck to your wife on her PET scan today. I hope it comes back dark as a cloudy, moonless night in the middle of the Amazon rain forest.

[dranton]

Re: Wife may have myeloma - next steps?

by dranton on Thu Feb 19, 2015 12:20 pm

DVDAuthority:

Like others, I am sorry to hear about your wife's situation. Trying to figure this out is complex, and it is an emotional roller coaster. Just yesterday, my wife and I were visiting with the Bone Marrow Team preparing for stem cell collection and transplant in a couple of weeks, and she asked (mostly joking): "You're going to tell us that all these preparatory tests show he doesn't really have cancer, right?" It is a difficult thing to work through.

I agree with the postings that have been here so far. I would point you also to this article posted on the Beacon by Dr. Rajkumar, which may be very helpful to you in understanding how multiple myeloma is diagnosed:

SV Rajkumar, "New Criteria For The Diagnosis Of Multiple Myeloma And Related Disorders," The Myeloma Beacon, Oct 26, 2014.

This posting describes the "older" diagnostic criteria, called CRAB, which were based mostly on organ or bone damage (and, yes, in advanced or progressed multiple myeloma, bone fractures are very common -- in fact, in speaking with many people, it seems to be one of the major ways that multiple myeloma is caught - because someone fractures a bone or multiple bones). However, there are new criteria now being used that were instrumental in my own diagnosis.

Just my quick story: My astute PCP was trying to figure out some unusual liver function tests I have had for a while, so he ran a CBC (Complete Blood Count) and saw that I was anemic. I was very healthy, exercising vigorously, good diet, etc., but I was getting more fatigued and struggling with energy levels.

I was lucky because they caught these symptoms early -- I did not have major bone lesions, my calcium levels were not really high, and my kidney tests looked normal. So the only CRAB element I had was this persistent anemia despite iron supplementation. So they did some of the other tests. My M-spike was not extremely higher, either: 1.7 g/dL (17 g/L).

My doctor initially diagnosed me with smoldering myeloma, but with these results decided to run the scans. I had 3 lesions on the scan, one of which was over 5 multiple myeloma. With the new criteria, this moved me into a diagnosis of multiple myeloma.

Although this has been an emotional roller coaster ride, you do begin to get a grip on it. In many ways, I see this as a good thing -- they caught it early before I had major health impacts, and my treatments have been working pretty well. I am hoping with transplant that I can get my M-spike to zero and gain multiple years of remission (also called progression-free Survival in cancer-talk). So catching this early can give your wife a chance to have a healthier life, although induction and multiple rounds of chemo are not a picnic.

The progress made in the past decade or more has been truly astonishing. multiple myeloma is no longer a "death sentence" - although, in the past, that was more true than not. With the treatments available today and more coming, the goal of many experts is to turn it into a chronic disease like diabetes - something we can treat and still have quality of life. There are a few who think we may get to a cure. That would be really nice!

My goal is to see my kids married and to see grandkids, to retire from work at the right time, and to go into remission and truly savor each day. I wish you and your wife the best -- you are a team. Last summer, before diagnosis, my wife and I visited the grave of Doc Holiday in Colorado. At least in the movies, and I think real life, he was known for being willing to take people on, to face things head on. So we have adopted the phrase that we are cancer's "huckleberry" -- we'll take you on, multiple myeloma, so bring it.