Today I got great news from my hem/oncologist that, for now, I have MGUS and not multiple myeloma!
However, while I was waiting this week for results from my bone marrow biopsy, 24-hour urine and full-body MRI, I sat around reading blogs, planned my funeral, and picked my pallbearers! I really let my imagination run away with me, and that kind of thing is not good for health, regardless of what we have!!! Even though I knew all along that God has this whole thing under control, the worry was incredulous!!
So, I'm thrilled with what my doctor said. My bone marrow plasma level was just 5%, and m-spike is still 0.5 g/dL (5 g/L). I'm IgG kappa light chains, with no Bence Jones.
However, I do have a bony growth on my collarbone and right shoulder, which I showed him today, as well as a slight indentation on the right top side of my forehead that I have only noticed recently. The bony growth on collarbone and shoulder has been there a couple of years and does not hurt, and I play really serious tennis and sleep curled up on that side most nights.
He said something did show up on the MRI on the right shoulder, but they attributed it to a previous injury? I am not aware that I had one. Also, he said some people just tend to have indentations on skull with age. I've never noticed this indention before until recently.
Also I have the following symptoms: No hair on arms or legs, slight receding hairline near forehead indentation, diarrhea, fatigue, thirst, tendinosis in right Achilles, kidney stones, weakness, skin irritations, dry skin, itching, blood pressure fluctuations, Hashimoto's hypothyroid disease. I also had slightly high white blood count and low red blood count, borderline anemia.
My hem/onc is a wonderful doc and very well-respected with a great cancer hospital in town, and told me to come back and have blood work redone in 6 months. However, he is definitely not a multiple myeloma specialist! There are none where I live that I know of! Just wondering if anyone thinks I need to have these bone possibilities evaluated by a myeloma specialist?
Also, to all with this disease or subtype, a cure is possible on a daily basis with all the research going on and all the amazing doctors, and there is always hope!! God is good!!
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Re: MGUS with forehead lesion & collarbone bone growth
Tennispro,
First, I'm not a doc ... and a doc should really have the last say in all this.
But the numbers you shared are very low, which is a great thing ... as is having a diagnosis of MGUS (at least in the scheme of multiple myeloma). Given your low numbers, your doc is probably right about all this.
Is your calcium level in a normal range? This may get elevated if you had skeletal issues going on that are related to multiple myeloma (but, again, this is probably unlikely given your low M-spike and plasma cell percentage).
If you want to put your mind at ease, I suppose you could request a PET/CT. If any of these suspect areas were cancerous, they would light up on the PET/CT scan.
Even if you have just MGUS, I think it's still good to have a relationship with a multiple myeloma specialist, should your disease advance in the future. Note that you can almost always have a remote relationship with a multiple myeloma specialist and just see that specialist when you think you need to ... but use your local onc for ongoing, routine testing. This is in fact what I do (my specialist is a different state and I probably won't see him again unless my numbers head south). My local onc is perfectly fine with this approach and is not offended in the least.
If you let us know which city you are in, folks on this forum can point you to some nearby institutions and/or specific doctors.
First, I'm not a doc ... and a doc should really have the last say in all this.
But the numbers you shared are very low, which is a great thing ... as is having a diagnosis of MGUS (at least in the scheme of multiple myeloma). Given your low numbers, your doc is probably right about all this.
Is your calcium level in a normal range? This may get elevated if you had skeletal issues going on that are related to multiple myeloma (but, again, this is probably unlikely given your low M-spike and plasma cell percentage).
If you want to put your mind at ease, I suppose you could request a PET/CT. If any of these suspect areas were cancerous, they would light up on the PET/CT scan.
Even if you have just MGUS, I think it's still good to have a relationship with a multiple myeloma specialist, should your disease advance in the future. Note that you can almost always have a remote relationship with a multiple myeloma specialist and just see that specialist when you think you need to ... but use your local onc for ongoing, routine testing. This is in fact what I do (my specialist is a different state and I probably won't see him again unless my numbers head south). My local onc is perfectly fine with this approach and is not offended in the least.
If you let us know which city you are in, folks on this forum can point you to some nearby institutions and/or specific doctors.
-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: MGUS with forehead lesion & collarbone bone growth
Thank you Multibilly for your response. I live a few hours from Little Rock, which I know has a wonderful hospital for myeloma and other blood disorders. I would love a recommendation for a specific doctor there!
I do not have elevated blood calcium levels at this time, but I sure do hear a lot of popping in my bones, especially my neck, and I do have lots of small kidney stones, which could be from calcium. The PET scan is a good idea, although I was hoping to avoid the radiation, as I've had lots of CT scans in the past for kidney stones. I was thinking the hem/onc might order one, but he did not.
Also, I have been juicing, taking curcumin, fish oil and other supplements and trying to eat as healthy as possible. I have gotten a lot of great tips from reading posts from people in this forum.
Blessings to you!!!
I do not have elevated blood calcium levels at this time, but I sure do hear a lot of popping in my bones, especially my neck, and I do have lots of small kidney stones, which could be from calcium. The PET scan is a good idea, although I was hoping to avoid the radiation, as I've had lots of CT scans in the past for kidney stones. I was thinking the hem/onc might order one, but he did not.
Also, I have been juicing, taking curcumin, fish oil and other supplements and trying to eat as healthy as possible. I have gotten a lot of great tips from reading posts from people in this forum.
Blessings to you!!!
Re: MGUS with forehead lesion & collarbone bone growth
UAMS would be a great place for evaluating your condition. Others on this forum that go there can make recommendations on specific docs.
Note that if you did become symptomatic and required treatment down the road, UAMS would almost certainly point you towards a treatment plan that would include an autologous transplant and would hit the disease very hard with their "total therapy" approach. At that time, you would need to ask yourself if that's the approach you would want to take or not....which is something you thankfully don't have to deal with right now.
But as an MGUS or smoldering patient, you wouldn't need to deal with that decision ... and remember that you could very well end up in an MGUS state for the rest of your life.
You are correct in being cautious about the radiation from a PET/CT (which packs a heckuva wallop of rads). One should always be very judicious about their use.
Good luck to you.
Note that if you did become symptomatic and required treatment down the road, UAMS would almost certainly point you towards a treatment plan that would include an autologous transplant and would hit the disease very hard with their "total therapy" approach. At that time, you would need to ask yourself if that's the approach you would want to take or not....which is something you thankfully don't have to deal with right now.
But as an MGUS or smoldering patient, you wouldn't need to deal with that decision ... and remember that you could very well end up in an MGUS state for the rest of your life.
You are correct in being cautious about the radiation from a PET/CT (which packs a heckuva wallop of rads). One should always be very judicious about their use.
Good luck to you.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: MGUS with forehead lesion & collarbone bone growth
tenni:
Obviously, your current Doc has to "tease-out" quite a number of complaints from a nervous patient.
The Hashimoto's (as you know) effects/affects many systems, including endocrine systems. Would tend to explain many of your complaints/ conditions. So would plain old "Aging".
What are you taking for the Hashimoto's? That could trigger potential immune response(s) as well. What does your latest TS4 / Hashimoto panel indicate ?
to quote---Also I have the following symptoms: No hair on arms or legs, slight receding hairline near forehead indentation, diarrhea, fatigue, thirst, tendinosis in right Achilles, kidney stones, weakness, skin irritations, dry skin, itching, blood pressure fluctuations, Hashimoto's hypothyroid disease. I also had slightly high white blood count and low red blood count, borderline anemia. ----
Kidney stones are usually not a feature seen with MM--especially those seen for years and years. Those are usually Oxalate acid produced "stones" (Diet and genetics), rather than excess Proteins (multiple myeloma) plugging up Nephrils or tubules in the kidneys. ( Your protein levels are low). Do you drink lots of citrus, ...as you "Juice" ? Might wanna stop that practice.!
While you may have been Dx'd w/ MGUS, I would focus on your predisposition to Kidney stones (Often genetic) via diet and medication; the vague "aging type" complaints ( endocrine-mostly) followed up with a good Internist; .......and if you really want to kick the "sleeping MGUS"--go to UAMS and as pert of the workup, ask for a PET scan. Then you will see what lights up...in your body. (multiple myeloma ? or nothing )
Radiographically, multiple myeloma presents as a "punched out" lesion , circular, and only after 30% or greater bony erosion has occurred. Either by Plain x-ray or MRI. Dispute is still raging over whether MRI or PET scan is most efficacious for Dx'ing multiple myeloma via radiological methods.
Regardless, your MRI was read (and probably "Over-read" by a Radiologist) as NOT presenting a "Punched out lesion" (ie. Active Myeloma).
Just by guessing--I'd go with a Baker's type (Arthritis) cyst over your A/C joint--moving distally towards the shoulder. Given your occupation--an "expected" finding. ?
Finally, your bloodwork is not indicative of multiple myeloma. Period.
In summary, if I was you--I'd research "Progression to Active multiple myeloma, from MGUS" and work on your backhand.
Progression--I think it's like 1% / year, or some such figure.....for a given time frame/age.
You are one of the lucky ones, .....who just may not ever have this sh---y disease. Keep it real.
Good luck.
Obviously, your current Doc has to "tease-out" quite a number of complaints from a nervous patient.
The Hashimoto's (as you know) effects/affects many systems, including endocrine systems. Would tend to explain many of your complaints/ conditions. So would plain old "Aging".
What are you taking for the Hashimoto's? That could trigger potential immune response(s) as well. What does your latest TS4 / Hashimoto panel indicate ?
to quote---Also I have the following symptoms: No hair on arms or legs, slight receding hairline near forehead indentation, diarrhea, fatigue, thirst, tendinosis in right Achilles, kidney stones, weakness, skin irritations, dry skin, itching, blood pressure fluctuations, Hashimoto's hypothyroid disease. I also had slightly high white blood count and low red blood count, borderline anemia. ----
Kidney stones are usually not a feature seen with MM--especially those seen for years and years. Those are usually Oxalate acid produced "stones" (Diet and genetics), rather than excess Proteins (multiple myeloma) plugging up Nephrils or tubules in the kidneys. ( Your protein levels are low). Do you drink lots of citrus, ...as you "Juice" ? Might wanna stop that practice.!
While you may have been Dx'd w/ MGUS, I would focus on your predisposition to Kidney stones (Often genetic) via diet and medication; the vague "aging type" complaints ( endocrine-mostly) followed up with a good Internist; .......and if you really want to kick the "sleeping MGUS"--go to UAMS and as pert of the workup, ask for a PET scan. Then you will see what lights up...in your body. (multiple myeloma ? or nothing )
Radiographically, multiple myeloma presents as a "punched out" lesion , circular, and only after 30% or greater bony erosion has occurred. Either by Plain x-ray or MRI. Dispute is still raging over whether MRI or PET scan is most efficacious for Dx'ing multiple myeloma via radiological methods.
Regardless, your MRI was read (and probably "Over-read" by a Radiologist) as NOT presenting a "Punched out lesion" (ie. Active Myeloma).
Just by guessing--I'd go with a Baker's type (Arthritis) cyst over your A/C joint--moving distally towards the shoulder. Given your occupation--an "expected" finding. ?
Finally, your bloodwork is not indicative of multiple myeloma. Period.
In summary, if I was you--I'd research "Progression to Active multiple myeloma, from MGUS" and work on your backhand.
Progression--I think it's like 1% / year, or some such figure.....for a given time frame/age.
You are one of the lucky ones, .....who just may not ever have this sh---y disease. Keep it real.
Good luck.
-
Rneb
5 posts
• Page 1 of 1
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