Hi everyone,
My name is Jason and I am 40ish male from the Mornington Peninsula in Australia. I was recently diagnosed with MGUS with a M-spike of 3 g/l (0.3 g/dL). My health has been in a strange place during the last 12 months; apart from an annoying yet chronic cough, I felt healthy. My bloods were slowly crashing which complicated things.
Like I said, I felt fine, but my bloods said otherwise, until I finally felt "a little off". I was given what must have been a stronger than normal dose of antibotics and then, boom, the majority of my bloods counts returned to normal. However, a few are still low or high, like the t-protein and albumin, and I have something called microcytic anemia, with MCV being slightly lower than normal, and RDW being mildly elevated.
When I first met my hematologist, my beta-2 was sitting on 6.5 (from memory), and now its down to 4.3.
I've yet to probably speak about the microcytic anemia with my specialist as I've spent the last month sorting out a bicuspid valve issue. Its taken longer than I thought to "sort out" the heart issue, as my cardiologist recommended I have a replacement valve as soon as possible. This valve is being replaced on the 6th September (tomorrow). Originally they planned to have a mechanical valve, which my hematologist was happy with. I was content with the mechanical valve until I read about warfarin (Coumadin), then a had a semi freak-out and will now be getting a bovine valve. Its only recently that I had started eating better – having breakfast, eating more veggies, reducing the coffee intake to 1 a day, and have virtually cut soft drink from my diet.
Nevertheless they still don't know what infection I had which caused the bloods to slowly crash. My hematologist and cardiologist believe endocarditis may be the cause. However, nothing has showed up in any of blood cultures I've done in the last 6 months. That does not rule out endocarditiis, as it could be the non-detectable version, and I wont truly know until they take out the valve. My heart surgeon seems to believe its not endocarditis.
It appears my heart issue was rather sudden as my previous echo from 2 years ago was normal, which may account for some of the issues I'm now having. I'm hoping that the problems with my heart are playing a part in the poor bloods readings.
Hopefully my hematologist will pop in to see me before the surgery (as he semi-promised).
There's more to talk about, but I'm about to head to the hospital. I do have questions concerning things like public vs. private treatment options in Australia, and around lab reports concerning MGUS / multiple myeloma.
Hopefully be back soon,
-Jason.
Forums
6 posts
• Page 1 of 1
Re: A new beginning, I suppose
Hi Jason,
I am also new here, and can't offer advice on the blood issues, etc, but I am well versed on the strengths and weaknesses of the Australian health system regarding public and private and would be happy to add any info I can in regard to your issues. Perhaps you want to start a new forum discussion topic ("thread") with your questions on the subject.
Cheers,
Tori
I am also new here, and can't offer advice on the blood issues, etc, but I am well versed on the strengths and weaknesses of the Australian health system regarding public and private and would be happy to add any info I can in regard to your issues. Perhaps you want to start a new forum discussion topic ("thread") with your questions on the subject.
Cheers,
Tori
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torifrog - Name: Tori
- Who do you know with myeloma?: Myself - MGUS
- When were you/they diagnosed?: Sept 1 2016
- Age at diagnosis: 51
Re: A new beginning, I suppose
Welcome to the forum, Jason. How did your surgery go? I hope everything went as expected and there were no negative surprises.
You've probably already been told that MGUS is similar to multiple myeloma, and that it is often described as a very early stage of the disease. What's important to know, though, is that the chance of progressing from MGUS to multiple myeloma is actually very low – maybe two percent per year. So having MGUS does not mean you automatically will develop multiple myeloma sometime in the future.
This does not mean, however, that you shouldn't start educating yourself about the disease. So it's great that you've come here, and hopefully it won't be long until you're teaching other MGUS newbies here the ropes!
The key lab results you want to start tracking are:
So you can track whether the disease is becoming more active by tracking the level of monoclonal immunoglobulin in your blood (that's your M-spike) and your total (healthy + unhealthy) immunoglobulin (IgG, IgA, and IgM) and free light chain levels (kappa, lambda) and free light chain ratio.
It's also useful to track your
Of course, imaging (xrays, MRIs, and PET/CTs) and bone marrow biopsies are also important ways to keep tabs on what is going on with the disease.
Finally, if you haven't already, start keeping all your lab and imaging (x-ray, MRI, etc.) results in a binder or folder. Also, if you can get electronic copies of your imaging, do so.
Hope this helps. Good luck!
You've probably already been told that MGUS is similar to multiple myeloma, and that it is often described as a very early stage of the disease. What's important to know, though, is that the chance of progressing from MGUS to multiple myeloma is actually very low – maybe two percent per year. So having MGUS does not mean you automatically will develop multiple myeloma sometime in the future.
This does not mean, however, that you shouldn't start educating yourself about the disease. So it's great that you've come here, and hopefully it won't be long until you're teaching other MGUS newbies here the ropes!
The key lab results you want to start tracking are:
- Your "M-spike" (paraprotein, M-protein, abnormal protein level, etc.)
- Your serum free light chain levels (kappa, lambda, and ratio)
- Your immunoglobulin levels (IgG, IgA, and IgM)
So you can track whether the disease is becoming more active by tracking the level of monoclonal immunoglobulin in your blood (that's your M-spike) and your total (healthy + unhealthy) immunoglobulin (IgG, IgA, and IgM) and free light chain levels (kappa, lambda) and free light chain ratio.
It's also useful to track your
- Hemoglobin level (which you're probably doing anyway)
- Calcium level
- Creatinine level
Of course, imaging (xrays, MRIs, and PET/CTs) and bone marrow biopsies are also important ways to keep tabs on what is going on with the disease.
Finally, if you haven't already, start keeping all your lab and imaging (x-ray, MRI, etc.) results in a binder or folder. Also, if you can get electronic copies of your imaging, do so.
Hope this helps. Good luck!
-
JimNY
Re: A new beginning, I suppose
The replacement valve surgery went well. Now I'm part cow. Unfortunately the valve they pulled was infected.
Then we have the frontline the general practitioners (GPs). It's their decisions that determine an early or later diagnosis.
I learnt recently that a cousin also has a bicuspid valve, but he has always known about it. The oddest thing is we ended up having heart surgery on the same day at different hospitals. He went through the public system after 3 cancellations and myself via the private system straight in with a relatively low out-of-pockets expenses for the surgery.
My GP and hematologist missed the "loud" diastolic murmur" which was picked up by a doctor in Emergency at the local public hospital. He was quite upset about it, some language about doctors no longer doing basic procedural checks anymore. The GP and hematologist did not initially check.
I was fortunate enough to be unemployed during this time with a health care card which bulked billed the dozen scans and x-rays they did. But I was stilled seeing a consulting specialist, which isn't cheap.
Of course, when something like myeloma comes up, the first thing I did was to call my private insurer, only to be told they will not cover the cost of a stem-cell transplant as it wasn't recognised by the government, nor would they cover the cost of any take-home medicines. I was ready to drop the insurance and go into the public system where the option was available. I did not drop it as their was no definite diagnosis of myeloma.
Fast forward a bit, he had consulted with 2 others over my file. One said it was definitely myeloma, the other was unable to come to a conclusion.
Bloody frightening, mind you, knowing that if I had been with the other specialist I could have been having highly toxic meds. My hematologist now believes the rather low M-spike (now 4 g/l) with a high IgG (something like 30 g/l) is due to the bacterial endocarditis they discovered during the operation. It's highly probable that the M-spike will disappear when the treatment has proven to be successful. If it doesn't, his MGUS diagnosis will stand.
I will when I get out of hospital start a post with various question about the public / private systems when it comes to myeloma.
Then we have the frontline the general practitioners (GPs). It's their decisions that determine an early or later diagnosis.
I learnt recently that a cousin also has a bicuspid valve, but he has always known about it. The oddest thing is we ended up having heart surgery on the same day at different hospitals. He went through the public system after 3 cancellations and myself via the private system straight in with a relatively low out-of-pockets expenses for the surgery.
My GP and hematologist missed the "loud" diastolic murmur" which was picked up by a doctor in Emergency at the local public hospital. He was quite upset about it, some language about doctors no longer doing basic procedural checks anymore. The GP and hematologist did not initially check.
I was fortunate enough to be unemployed during this time with a health care card which bulked billed the dozen scans and x-rays they did. But I was stilled seeing a consulting specialist, which isn't cheap.
Of course, when something like myeloma comes up, the first thing I did was to call my private insurer, only to be told they will not cover the cost of a stem-cell transplant as it wasn't recognised by the government, nor would they cover the cost of any take-home medicines. I was ready to drop the insurance and go into the public system where the option was available. I did not drop it as their was no definite diagnosis of myeloma.
Fast forward a bit, he had consulted with 2 others over my file. One said it was definitely myeloma, the other was unable to come to a conclusion.
Bloody frightening, mind you, knowing that if I had been with the other specialist I could have been having highly toxic meds. My hematologist now believes the rather low M-spike (now 4 g/l) with a high IgG (something like 30 g/l) is due to the bacterial endocarditis they discovered during the operation. It's highly probable that the M-spike will disappear when the treatment has proven to be successful. If it doesn't, his MGUS diagnosis will stand.
I will when I get out of hospital start a post with various question about the public / private systems when it comes to myeloma.
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JasonJB - Name: Jayzen
Re: A new beginning, I suppose
Hi Jason,
What a journey you have already been on! I am pleased to hear that the heart surgery has gone well and that you are recovering O.K., and also that, hopefully, your M spike will disappear with the continuing treatment of your heart issues.
I have no wise words on the blood tests ,etc. Others do that so much better than I can.
On the myeloma front, I hope you will never have to deal with anything more serious than MGUS, but if there is a need to have that fully checked out, or it does become more serious, you live in a good place to see our best myeloma specialists. Depending on where on the Peninsula you live, you are only about an hour and a half out of Melbourne, and there we have a number of very good treatment centres and top class specialists. I am also a Victorian, from the Mallee, so it is four and a half hours each way when I go to the Peter MacCallum Cancer Centre.
I was a seventy year old age pensioner when I was diagnosed with myeloma in 2011, so all of my treatment has been in the public system. I do still see a private neurologist, as my myeloma presented rather differently, with all major problems apart from fatigue and breathlessness relating to nerve damage (told my story more fully in a previous post).
In the public system I have had all necessary tests and scans, induction therapy - Velcade, cyclophosphamide, and dexamethasone (VCD), stem cell collection and transplant as an in-patient (at the age of 72), post transplant consolidation, all medication, and a lot of plasmapheresis, which helps me to deal with neuropathy. All of this at no cost to me apart from a small co-payment for scripts. I have no problems with our public system.
I'm happy to answer any questions you might have, and will keep a look-out for your posts.
All the best,
RondaV
What a journey you have already been on! I am pleased to hear that the heart surgery has gone well and that you are recovering O.K., and also that, hopefully, your M spike will disappear with the continuing treatment of your heart issues.
I have no wise words on the blood tests ,etc. Others do that so much better than I can.
On the myeloma front, I hope you will never have to deal with anything more serious than MGUS, but if there is a need to have that fully checked out, or it does become more serious, you live in a good place to see our best myeloma specialists. Depending on where on the Peninsula you live, you are only about an hour and a half out of Melbourne, and there we have a number of very good treatment centres and top class specialists. I am also a Victorian, from the Mallee, so it is four and a half hours each way when I go to the Peter MacCallum Cancer Centre.
I was a seventy year old age pensioner when I was diagnosed with myeloma in 2011, so all of my treatment has been in the public system. I do still see a private neurologist, as my myeloma presented rather differently, with all major problems apart from fatigue and breathlessness relating to nerve damage (told my story more fully in a previous post).
In the public system I have had all necessary tests and scans, induction therapy - Velcade, cyclophosphamide, and dexamethasone (VCD), stem cell collection and transplant as an in-patient (at the age of 72), post transplant consolidation, all medication, and a lot of plasmapheresis, which helps me to deal with neuropathy. All of this at no cost to me apart from a small co-payment for scripts. I have no problems with our public system.
I'm happy to answer any questions you might have, and will keep a look-out for your posts.
All the best,
RondaV
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RondaV - Name: RondaV
- Who do you know with myeloma?: me
- When were you/they diagnosed?: Nov 2011
- Age at diagnosis: 70
Re: A new beginning, I suppose
Hello Ronda,
I hope you doing well. The furtherest I've been out your way was to Swan Hill, back in the 1980s when I was a kid.
Its now been over a year since my heart valve surgery and I just finished the last of the antibiotics. I've spent the better part of the year getting my life into order. Started back studying and looks like I might be starting casual work in a couple weeks. I had a review back in March and my M-protein was still at 2 g/l (0.2 g/dL), I believe it was 2 g/l (0.2 g/dL) in December, its peak being 4 g/l (0.4 g/dL) back in September. The doctor was pleased as it had not gone up. At the time, I was disappointed, as I was hoping that the M-protein had further decreased.
Last week, I had another follow-up, this time it measured < 1 g/l (< 0.1 g/dL). I was happy, he was happy. He still believes it will disappear and that bacterial endocarditis was to blame for the monoclonal gammopathy. He did also say that this just shows that is does take time for the body to recover from a major illness.
My other values are good; beta-2 is now down to 2. Don't have the others on me.
Will see him again in 6 months time.
I hope you doing well. The furtherest I've been out your way was to Swan Hill, back in the 1980s when I was a kid.
Its now been over a year since my heart valve surgery and I just finished the last of the antibiotics. I've spent the better part of the year getting my life into order. Started back studying and looks like I might be starting casual work in a couple weeks. I had a review back in March and my M-protein was still at 2 g/l (0.2 g/dL), I believe it was 2 g/l (0.2 g/dL) in December, its peak being 4 g/l (0.4 g/dL) back in September. The doctor was pleased as it had not gone up. At the time, I was disappointed, as I was hoping that the M-protein had further decreased.
Last week, I had another follow-up, this time it measured < 1 g/l (< 0.1 g/dL). I was happy, he was happy. He still believes it will disappear and that bacterial endocarditis was to blame for the monoclonal gammopathy. He did also say that this just shows that is does take time for the body to recover from a major illness.
My other values are good; beta-2 is now down to 2. Don't have the others on me.
Will see him again in 6 months time.
-
JasonJB - Name: Jayzen
6 posts
• Page 1 of 1
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