I consider myself very lucky that I've never had to complain about insurance, until now.
Since BB is an outlier in his efforts to cure the disease, his protocols and testing are more rigorous than many. He uses MRI to track disease eradication, and he uses PET for the same thing as well as to provide measurements for precise bone marrow biopsies called fine needle aspirations.
I've just learned that my insurance company has rejected these tests, which means I either have to do without, or go out of pocket for several thousand (!!) dollars. I know this because I found out in arrears that they rejected the last batch and I need to come up with several thousand for that go-round.
It had been a pretty consistent dance over the years. BB orders advanced imaging. Insurance company refuses to approve. Somebody from the clinic does a "peer to peer" review with the insurance company and convinces them. They approve.
This time -- and last -- they did not approve.
Not sure if that's because of a change in policy or a change in personnel.
The reality is, whomever is the "peer" on the insurance end of the phone doesn't know this disease. That's why they are working as a minor administrative official in an insurance company, effectively stamping forms, instead of practicing medicine and treating disease.
As of now, the plan is go proceed with PET because that will highlight the presence of any lesions and can be used to guide the fine needle aspirations. I may or may not also get limited MRIs of my hip and spine, depending on what the PET says, I guess.
What a pain.
I have -- with a smidgen of effort, I must admit -- resisted the urge to make any political commentary so I would ask those of you kind enough to comment to also refrain from doing so. :)
Friday, January 31, 2014
Monday, January 27, 2014
Big week for tests coming up
So next week is a little more than the usual "poke 'n' prod" as I've taken to calling it.
To sum up where I am these days, at the risk of repeating material I've presented over the past several months:
* I have had a signature in my blood in the past, which is no longer present under LA lab tests but was present under Arkansas labs even when not present in LA labs, which is either a sign of an immune system rebuilding itself or a sign of disease return.
* Other lab tests would point in the direction of good news, but BB and team have not seen this particular signature before -- or at least don't know what to make of it. This is in contrast to research from Mayo. And the uncertainty is troubling to me, since BB sees more of this than Mayo and treats more aggressively than them and thus would likely see more evidence of profound disease suppression / eradication than they would.
* I have been waiting for more than two years for resolution of lingering spots in my spine that used to be hot spots for cancer but have been dormant for some time. Several others formerly active lesions in my body have gone away completely. It's interesting that most doctors don't believe these lesions resolve. My doctor believes they do. And they have in me. Which makes me feel like my confidence in my doctor -- iconoclastic though he may be in some respects -- we well placed.
* If my disease comes back after the treatment I've been through, it may likely come back in an aggressive form which would have dire implications.
Next week, then, we'll have the usual complements of tests: PET/CT, MRI, blood work, bone marrow biopsy, etc. I'll also have the fairly recently introduced test for minimal residual disease, which tests literally millions of cells rather than the 40 that are typically looked at in bone marrow.
However, in addition to this, if the signature remains in my blood, we will try to devise a means of comparing that with the original protein. This may not be possible, however, as I am told that a precise comparison requires bone marrow and my bone marrow is currently clean. If I have Myeloma in my bone marrow, then we have our answer and it is not a good one. If I don't, then they would need to compare my current blood against a sample that was originally taken (I think) and they may not be able to do this.
The other non-standard test they are doing are fine needle aspirations of the remaining lesions in my spine. These are essentially precisely targeted bone marrow biopsies of the exact spots that used to be active for cancer. It is BB's theory that if there are any cancer cells lingering, these spots are likely where they are hiding. These will not be pleasant as they are deep in the spine and my bones are hard from multiple courses of the bone-strengthening agent Zometa. I'm endeavoring right now to ensure I will be knocked out when these do these. As barbaric as it sounds, normally one is conscious when this happens. But I tried that once before -- for a comparatively innocuous FNA in my hip -- as it didn't work out well. So now, I make them knock me out.
The best outcome here is for the blood and bone marrow biopsy to be clean and the lesions to be gone. If that's the case, then the strange signature in the blood was in fact what Mayo believes it to be -- a good sign. QED. I won't need the FNAs done if this is the case as there This outcome might even result in BB telling me I'm cured.
If the blood is clean and the lesions are still there, the next best outcome is for them to be negative for MRD under the fine needle aspiration. If that's the case, BB will probably continue to watch and see, but the belief will likely be that they are "shadows" rather than things to be actively worried about. This keeps the sword of Damocles hanging, but essentially indicates that the twine that holds it remains relatively sturdy.
Anything else is pretty much a disaster so...I'll not even enumerate those outcomes.
Fingers and toes crossed. Will likely update from Arkansas next week, which I gather is going to be one chilly trip!
To sum up where I am these days, at the risk of repeating material I've presented over the past several months:
* I have had a signature in my blood in the past, which is no longer present under LA lab tests but was present under Arkansas labs even when not present in LA labs, which is either a sign of an immune system rebuilding itself or a sign of disease return.
* Other lab tests would point in the direction of good news, but BB and team have not seen this particular signature before -- or at least don't know what to make of it. This is in contrast to research from Mayo. And the uncertainty is troubling to me, since BB sees more of this than Mayo and treats more aggressively than them and thus would likely see more evidence of profound disease suppression / eradication than they would.
* I have been waiting for more than two years for resolution of lingering spots in my spine that used to be hot spots for cancer but have been dormant for some time. Several others formerly active lesions in my body have gone away completely. It's interesting that most doctors don't believe these lesions resolve. My doctor believes they do. And they have in me. Which makes me feel like my confidence in my doctor -- iconoclastic though he may be in some respects -- we well placed.
* If my disease comes back after the treatment I've been through, it may likely come back in an aggressive form which would have dire implications.
Next week, then, we'll have the usual complements of tests: PET/CT, MRI, blood work, bone marrow biopsy, etc. I'll also have the fairly recently introduced test for minimal residual disease, which tests literally millions of cells rather than the 40 that are typically looked at in bone marrow.
However, in addition to this, if the signature remains in my blood, we will try to devise a means of comparing that with the original protein. This may not be possible, however, as I am told that a precise comparison requires bone marrow and my bone marrow is currently clean. If I have Myeloma in my bone marrow, then we have our answer and it is not a good one. If I don't, then they would need to compare my current blood against a sample that was originally taken (I think) and they may not be able to do this.
The other non-standard test they are doing are fine needle aspirations of the remaining lesions in my spine. These are essentially precisely targeted bone marrow biopsies of the exact spots that used to be active for cancer. It is BB's theory that if there are any cancer cells lingering, these spots are likely where they are hiding. These will not be pleasant as they are deep in the spine and my bones are hard from multiple courses of the bone-strengthening agent Zometa. I'm endeavoring right now to ensure I will be knocked out when these do these. As barbaric as it sounds, normally one is conscious when this happens. But I tried that once before -- for a comparatively innocuous FNA in my hip -- as it didn't work out well. So now, I make them knock me out.
The best outcome here is for the blood and bone marrow biopsy to be clean and the lesions to be gone. If that's the case, then the strange signature in the blood was in fact what Mayo believes it to be -- a good sign. QED. I won't need the FNAs done if this is the case as there This outcome might even result in BB telling me I'm cured.
If the blood is clean and the lesions are still there, the next best outcome is for them to be negative for MRD under the fine needle aspiration. If that's the case, BB will probably continue to watch and see, but the belief will likely be that they are "shadows" rather than things to be actively worried about. This keeps the sword of Damocles hanging, but essentially indicates that the twine that holds it remains relatively sturdy.
Anything else is pretty much a disaster so...I'll not even enumerate those outcomes.
Fingers and toes crossed. Will likely update from Arkansas next week, which I gather is going to be one chilly trip!
Wednesday, January 8, 2014
A short but purposeful post
When I reference this blog in some MM communities online, the reference will pull up the latest graphic and that gets inserted next to whatever I've typed.
For months, this was a bottle of that magnesium rocket fuel laxative.
Now, it's the ridiculous "Madame" puppet photo.
So PURELY so I don't look like a complete weirdo, I'm putting another picture up here.
My doctor. Looking a little less avant garde than usual, without his leather pants and motorcycle jacket!
For months, this was a bottle of that magnesium rocket fuel laxative.
Now, it's the ridiculous "Madame" puppet photo.
So PURELY so I don't look like a complete weirdo, I'm putting another picture up here.
My doctor. Looking a little less avant garde than usual, without his leather pants and motorcycle jacket!
A little observation, not specific to my own biology
Happy New Year, all.
No news to update, while I wait to schedule an upcoming trip to Arkansas for a significant series of tests including multiple bone marrow biopsies (assuming the former lesions in my spine still exist).
I'm beginning to come around on the notion of this M protein being benign, actually. Although I note that in the Mayo research the majority of these faint signals resolve on their own after a median of six months. It's been about that long for me, give or take, so I wouldn't mind seeing it go away. If it hasn't, I may have more significant issues.
So best case is the lesions have all fully resolved with healthy new bone tissue (I've had a few courses of Zometa over the past few months to help this process, although I'd been on that before and it didn't finish the job and BB discontinued it before resuming it this time, so who knows...probably guesswork at this point). If that happens, and the M protein is gone, and the MRD (minimal residual disease) test is negative, then I may be celebrating soon.
Worst case (other than disease return) is the lesions haven't resolved, M protein still there, but MRD is still negative including all the marrow analyzed from those lesions, in which case we still watch and wait and maybe consider treating more aggressively.
An added bonus to lesion resolution is they won't need to do more than one bone marrow. We'll have to see.
Wow, for a post that wasn't supposed to be about my biology, it sure has turned into that...
Anyhow, what I was ORIGINALLY going to post follows. I posted this elsewhere (in a comment on a post on Pat Killingsworth's blog) but I thought it was a good thing to keep in mind in the spirit of New Years Resolutions. Essentially: when someone you know -- even if only a little -- is facing a tragedy or a terrible event in their life, err on the side of reaching out. It may be more helpful than you know.
No news to update, while I wait to schedule an upcoming trip to Arkansas for a significant series of tests including multiple bone marrow biopsies (assuming the former lesions in my spine still exist).
I'm beginning to come around on the notion of this M protein being benign, actually. Although I note that in the Mayo research the majority of these faint signals resolve on their own after a median of six months. It's been about that long for me, give or take, so I wouldn't mind seeing it go away. If it hasn't, I may have more significant issues.
So best case is the lesions have all fully resolved with healthy new bone tissue (I've had a few courses of Zometa over the past few months to help this process, although I'd been on that before and it didn't finish the job and BB discontinued it before resuming it this time, so who knows...probably guesswork at this point). If that happens, and the M protein is gone, and the MRD (minimal residual disease) test is negative, then I may be celebrating soon.
Worst case (other than disease return) is the lesions haven't resolved, M protein still there, but MRD is still negative including all the marrow analyzed from those lesions, in which case we still watch and wait and maybe consider treating more aggressively.
An added bonus to lesion resolution is they won't need to do more than one bone marrow. We'll have to see.
Wow, for a post that wasn't supposed to be about my biology, it sure has turned into that...
Anyhow, what I was ORIGINALLY going to post follows. I posted this elsewhere (in a comment on a post on Pat Killingsworth's blog) but I thought it was a good thing to keep in mind in the spirit of New Years Resolutions. Essentially: when someone you know -- even if only a little -- is facing a tragedy or a terrible event in their life, err on the side of reaching out. It may be more helpful than you know.
I remember I always used to wonder, when a friend or loved one faced some sort of tragedy or crisis, whether or not they wouldn't want to be bothered by a call to check in on them -- or whether I didn't know somebody well enough to intrude on a private experience. When I was going through my own diagnosis and initial aggressive treatment, the calls and emails that touched me most were from people that I wasn't in regular contact with, or whom I didn't know particularly well, but who just wanted to let me know they were thinking of me. I found these remarkably uplifting. Perhaps it's because it's a reminder of how many lives we touch -- more than we think. In any case: when in doubt, call someone, email someone, send them a note and let them know you are thinking of them. The worst it will do is nothing -- and it might significantly brighten their day.
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