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Re: 28 Female - Borderline MGUS/SMM
Hi Barbara, It's good that you found the Beacon, in case you do have any conditions assoc. with MGUS, SMM, myeloma. There are lots of threads here with patients discussing their issues, as you have probably already determined! And I think it is good to cross reference problems with your different physicians too, and your family physician so that they can get the whole picture for you. So hopefully you will get some more definitive answers soon!
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: 28 Female - Borderline MGUS/SMM
Hi, I like yourself was diagnosed with MGUS/smoldering Myeloma in my 20s when I lived back in New Zealand.
I was 26 and based on my age I had a bone marrow biopsy immediately, all the usual tests and x rays and even and MRI. They found my bone had thinned a little but there was no treatment. I was told it may never progress to multiple myeloma and had a haematologist and had to take a lot of calcium, vitamin D and had bone density scans. It was very scary and I didn't respond well to the news. Knowing you have this benign version of a rare disease that you can't currently get treatment for and that is not common for anyone under the age of 50 was too much. I didn't ask for help so much and a few years got used to the condition.
On 10 December 2013 I received bad news, diagnosis confirming the myeloma had progressed after 8 years although it may have progressed from 2011 without symptoms. I had to moved to Sydney in 2010 and my gp knows little of multiple myeloma and as such did not understand the results of the blood tests in 2011 and 2012.
I've just completed 1 out of 4 cycles of treatment for this cancer and I'm still in shock despite having the benign version for so long. I do believe MGUS has symptoms and that the doctors do not acknowledge this. I had alot of back pain but x rays confirm no holes or lesions and a previous lower back injury still gives me pain. I lived unknowingly with anaemia and chronic fatigue for over a year. I had travelled to 15 countries in 2.5 months in 2012 including travelling to the USA on holiday so thought I had jet lag and just over did it! I also in 2013 over did it with my career in stand up comedy combined with a fairly high stress full time job and busy social life. I was exhausted but I pushed my body until it got too much and I had to see a specialist. Now I'm taking it easy, I just want to get rid of this cancer. I, like yourself am far too young.
No one deserves multiple myeloma or MGUS. I noticed your symptoms and I had similar ones; I had the cough that lasted months, constantly getting sick, even my periods were so bad that I had to take time off work due to the nausea, migraines and stomach pain. A blood transfusion helped.
Your post was from 2012 and I hope you have more answers now. From what you posted it does sound like the disease progressed alot sooner than expected.. Me, I thought it would never happen and wish I had taken things more seriously in the past.
If you need someone to talk to who is in the same age group feel free to message me via this website.
All the best, Jasmine
I was 26 and based on my age I had a bone marrow biopsy immediately, all the usual tests and x rays and even and MRI. They found my bone had thinned a little but there was no treatment. I was told it may never progress to multiple myeloma and had a haematologist and had to take a lot of calcium, vitamin D and had bone density scans. It was very scary and I didn't respond well to the news. Knowing you have this benign version of a rare disease that you can't currently get treatment for and that is not common for anyone under the age of 50 was too much. I didn't ask for help so much and a few years got used to the condition.
On 10 December 2013 I received bad news, diagnosis confirming the myeloma had progressed after 8 years although it may have progressed from 2011 without symptoms. I had to moved to Sydney in 2010 and my gp knows little of multiple myeloma and as such did not understand the results of the blood tests in 2011 and 2012.
I've just completed 1 out of 4 cycles of treatment for this cancer and I'm still in shock despite having the benign version for so long. I do believe MGUS has symptoms and that the doctors do not acknowledge this. I had alot of back pain but x rays confirm no holes or lesions and a previous lower back injury still gives me pain. I lived unknowingly with anaemia and chronic fatigue for over a year. I had travelled to 15 countries in 2.5 months in 2012 including travelling to the USA on holiday so thought I had jet lag and just over did it! I also in 2013 over did it with my career in stand up comedy combined with a fairly high stress full time job and busy social life. I was exhausted but I pushed my body until it got too much and I had to see a specialist. Now I'm taking it easy, I just want to get rid of this cancer. I, like yourself am far too young.
No one deserves multiple myeloma or MGUS. I noticed your symptoms and I had similar ones; I had the cough that lasted months, constantly getting sick, even my periods were so bad that I had to take time off work due to the nausea, migraines and stomach pain. A blood transfusion helped.
Your post was from 2012 and I hope you have more answers now. From what you posted it does sound like the disease progressed alot sooner than expected.. Me, I thought it would never happen and wish I had taken things more seriously in the past.
If you need someone to talk to who is in the same age group feel free to message me via this website.
All the best, Jasmine
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Jazzy79 - Name: Jasmine
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: December 2013
- Age at diagnosis: 34
Re: 28 Female - Borderline MGUS/SMM
Hi,
This thread is from 2012. Anyone still using this site?
I'm newly diagnosed with MGUS and wanted to meet others in the same boat.
This thread is from 2012. Anyone still using this site?
I'm newly diagnosed with MGUS and wanted to meet others in the same boat.
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newly diagnosed1
Re: 28 Female - Borderline MGUS/SMM
Unfortunately, the site is hopping with activity ... A newly diagnosed person every few days or so.
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Little Monkey - Name: Little Monkey
- Who do you know with myeloma?: Father-stage 1 multiple myeloma
- When were you/they diagnosed?: March/April of 2015
Re: 28 Female - Borderline MGUS/SMM
Yes, the forum is definitely still active. Very active. There's also an entire section of the forum dedicated to MGUS, and there are new postings from people with MGUS every day. Here is a list of forum threads that specifically mention MGUS in their titles.
As I said, plenty of activity.
As I said, plenty of activity.
25 posts
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