I guess I will start from the beginning. I rode bulls for 14 yrs, 2 as pro and my back was messed up pretty bad so I had surgery in 2005 and it was a failed surgery. I lost my business in 2006 so in 2007 we sold our house and moved to Cebu, Philippines to open a call center. (My wife is from Philippines). 3 days before we were to open, I had a motorcycle wreck and hurt my back and dislocated my left shoulder. I was not about to get any kind of surgery in the Philippines, so I kept my shoulder in a sling and ended up with frozen shoulder. I had to go to physical therapy to free up my shoulder and we moved back home to the US in oct 2007. I could not work so I got on disability. In Christmas 2011 my shoulder had started hurting and in feb 2012 my collarbone had swollen up the size of a golf ball. My Dr sent me to an Orthapedic Dr. Dr Mays. He did a biopsy and everything came back clean. They did an mri and noticed a hairline crack and since I haven't done anything physical the past 3 1/2 yrs he thought it might have been from my accident.The end of feb he inserted a stainless plate on my clavicle. after a couple months everything seemed to be going good. The 1st of sept the plate had swollen up larger than before the surgery and I went to see Dr Mays on sep 7. On sep 10 he did surgery and removed the plate. He said when he removed the plate that 4cm of my bone under it had turned to mush and they had to remove it. They took more samples of bone and nothing showed up he said. So he sent me to an infectious disease dr. That dr had me admitted to the hosp for testing last week and I was in there for 4 days. They called in a Hematologist. He said I was anemic and had me on iron pills. They sent my samples off to the Mayo Clinic. My primary care dr told me that they thought I had multiple myeloma the nite I was discharged. When I spoke to my bone dr yesterday, he confirmed it. I have an appointment with the bone dr tomorrow and with the Hematologist on the 26th. What I thought was a pinched nerve in my back the past several months causing my left leg to go numb and hurt BAD might not have been a nerve! My neck locked up 3 months ago and I had to go to the er and they said I had muscle spasms, but it lasted 6 weeks, yet I still can't shake my head and my neck is still sore. My lower ribs are sore and I woke up sunday am in BAD pain couldn't breathe like I had a busted rib as my top rib under my rt breast was hurting. My back is hurting was worse than ever now. My pain mgt dr has me on (4) 10mg methadone daily but they don't help. What questions do I need to ask my Hematologist when I see him and what do I have to look forward to? Thanks for any help y'all!
Bubba........
Forums
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BayouSouth - Name: Bubba
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: Oct 2012
- Age at diagnosis: 55
Re: Just been diagnosed, need help
Hi Bubba -
You'll probably get more responses from folks more experienced in this than me (I was diagnosed last May) but expect to get a lot of attention from a hematologist/oncologist in the very near future. On the plus side, they know what's going on with your bones now and you'll get treated. You'll probably get some drugs and it's likely your doctor will want you to go through some sort of a stem cell transplant (most likely using cells from your own body, but possibly from someone else). Everyone reacts to these treatments a bit differently, so it's hard to say how you'll do. Some of us don't miss a beat, others get laid low by the therapies.
Another plus: The current treatments tend to be pretty effective for a number of years, so you likely have plenty of time ahead of you. Furthermore, there's an amazing amount of research going on in this field and it's certain that even more effective treatments are soon to come.
I would recommend you look around this site. Check out some of the forum posts, look into some of the links, and educate yourself on the disease. There's a lot to learn here.
Best of luck to you!
Mike
You'll probably get more responses from folks more experienced in this than me (I was diagnosed last May) but expect to get a lot of attention from a hematologist/oncologist in the very near future. On the plus side, they know what's going on with your bones now and you'll get treated. You'll probably get some drugs and it's likely your doctor will want you to go through some sort of a stem cell transplant (most likely using cells from your own body, but possibly from someone else). Everyone reacts to these treatments a bit differently, so it's hard to say how you'll do. Some of us don't miss a beat, others get laid low by the therapies.
Another plus: The current treatments tend to be pretty effective for a number of years, so you likely have plenty of time ahead of you. Furthermore, there's an amazing amount of research going on in this field and it's certain that even more effective treatments are soon to come.
I would recommend you look around this site. Check out some of the forum posts, look into some of the links, and educate yourself on the disease. There's a lot to learn here.
Best of luck to you!
Mike
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Mike F - Name: Mike F
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: May 18, 2012
- Age at diagnosis: 53
Re: Just been diagnosed, need help
Thanks Mike! In my mind I was thinking I am going to die. I looked up on google and it said multiple myeloma was rare, so I immediately thought there would be no treatment for it. I have a 10 yr old daughter, and I have been balling my eyes out thinking that she would grow up without her daddy and how she would react because I am her hero.
thanks,
Bubba.......
thanks,
Bubba.......
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BayouSouth - Name: Bubba
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: Oct 2012
- Age at diagnosis: 55
Re: Just been diagnosed, need help
Hi Bubba. My husband went for almost 3 years without a diagnosis. The first thing I would tell you is to see a hematologist/oncologist who specializes in multiple myeloma. My husband has his regular oncologist and his multiple myeloma specialist.
We had never heard of multiple myeloma before my husband got sick. I am the type of person who cannot get enough info so I was searching the web like crazy. Be careful with that. While there is a great deal of good info out there, there is a bunch that will scare the bageebies out of you. Since my husband was diagnosed, there have been a couple of new drugs approved and several new therapies in the pipeline. Don't give up hope. A positive frame of mind is one of the best therapies out there.
Praying with you for a cure.
Marie
We had never heard of multiple myeloma before my husband got sick. I am the type of person who cannot get enough info so I was searching the web like crazy. Be careful with that. While there is a great deal of good info out there, there is a bunch that will scare the bageebies out of you. Since my husband was diagnosed, there have been a couple of new drugs approved and several new therapies in the pipeline. Don't give up hope. A positive frame of mind is one of the best therapies out there.
Praying with you for a cure.
Marie
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Marie64 - Name: Marie
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: 2010
- Age at diagnosis: 45
Re: Just been diagnosed, need help
Thanks Marie. I have an appointment on the 26th with my hematologist/oncologist . I dunno yet if he specializes in multiple myeloma, but you can bet I will find out!
Thnx for the info.
Bubba..............
Thnx for the info.
Bubba..............
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BayouSouth - Name: Bubba
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: Oct 2012
- Age at diagnosis: 55
Re: Just been diagnosed, need help
HI Bubba! Don't believe everything you read on the internet. An awful lot of it is outdated information. I was diagnosed 13 months ago and had an ASCT this past June. Your pain levels should decrease significantly once you start treatment. It might take a little while like mine did but your pain should start subsiding.
Take a deep breath. You've got many years ahead of you. We DO have hope!!
Hang in there my friend!
Scott
*edit* The Beacon here is a treasure trove of up-to-the-minute information and is the first place I look when gathering information about my condition!!
Take a deep breath. You've got many years ahead of you. We DO have hope!!
Hang in there my friend!
Scott
*edit* The Beacon here is a treasure trove of up-to-the-minute information and is the first place I look when gathering information about my condition!!
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Guitarnut - Name: Scott Hansgen
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Sept 2011
- Age at diagnosis: 47
Re: Just been diagnosed, need help
Hi, Bubba:
Your appointment is ten days away. Why don't you find out now whether the doctor is a multiple myeloma specialist without possibly wasting 10 days? By all accounts, since myeloma is a systemic disease, the treatments you will go through should improve your pain conditions throughout your body. So there is good hope down the road. Good luck with your appointment and treatment.
Ben
Your appointment is ten days away. Why don't you find out now whether the doctor is a multiple myeloma specialist without possibly wasting 10 days? By all accounts, since myeloma is a systemic disease, the treatments you will go through should improve your pain conditions throughout your body. So there is good hope down the road. Good luck with your appointment and treatment.
Ben
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Ben S.
Re: Just been diagnosed, need help
My diagnosis with myeloma came about from a different set of multiple myeloma symptoms (a lot of infections, very significant anemia at blood transfusion level) and some other rare multiple myeloma symptoms related to the high amount of protein in my blood. I had some bone lesions once the starte looking, but like you I just thought it was a from an old back strain years ago.
I was diagnosed by the Internal Medicine Team (bone marrow biopsy etc), at the local hospital, and started treatment by a regular Hematologist / oncology. My care was great, and her knowledge good. She consulted the multiple myeloma doctor about me. Later in my treatment I switched my care to a major cancer hospital and am in the multiple myeloma clinic there. I think the important thing is you get a propper diagnosis, and from the sounds of it your case has some frank multiple myeloma flags and a Hema dr should be able to do this just fine. multiple myeloma is rare, but not that rare.
Also my hematologist first advice, stopp consulting google, most of the info is out of date, major advanced have been made with new treatments and the www. does not always show this! I know it's hard, but many on this forum are living proof about that
One thing you really need to ask the dr is about starting bone drugs like Zometa, they help alot with the pain, and to prevent more damage, and even repair it!
I was diagnosed by the Internal Medicine Team (bone marrow biopsy etc), at the local hospital, and started treatment by a regular Hematologist / oncology. My care was great, and her knowledge good. She consulted the multiple myeloma doctor about me. Later in my treatment I switched my care to a major cancer hospital and am in the multiple myeloma clinic there. I think the important thing is you get a propper diagnosis, and from the sounds of it your case has some frank multiple myeloma flags and a Hema dr should be able to do this just fine. multiple myeloma is rare, but not that rare.
Also my hematologist first advice, stopp consulting google, most of the info is out of date, major advanced have been made with new treatments and the www. does not always show this! I know it's hard, but many on this forum are living proof about that
One thing you really need to ask the dr is about starting bone drugs like Zometa, they help alot with the pain, and to prevent more damage, and even repair it!
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lys2012 - Name: Alyssa
- When were you/they diagnosed?: 2010, Toronto, Canada
- Age at diagnosis: 32
Re: Just been diagnosed, need help
Ok, I went to my orthopedic Dr yesterday. He told me that he didn't think I had multiple myeloma. He said when they removed the plate that the 1 1/2" section of bone that had turned to mush, they sent that whole part to the lab and he said that is the best biopsy you can do since it has everything and nothing showed up in it!
I asked him why would I have all of the symptoms of multiple myeloma, anemia,loss of appetite, loss of bone, hurting in ribs, hurting in tail bone, hurting in back a lot worse, neck pain and leg numbness. He said sometimes the body just hurts. I want so bad to believe him but I think he was trying to calm myself and my wife down because he saw how upset we were. I called my infectious disease dr when we got home and they told me they needed to follow up with me so I have appointment with him on 24th. Maybe he will tell me something next wed before I go to my hematologist appointment next fri.
Thnx for everyone's help!
Bubba...........
I asked him why would I have all of the symptoms of multiple myeloma, anemia,loss of appetite, loss of bone, hurting in ribs, hurting in tail bone, hurting in back a lot worse, neck pain and leg numbness. He said sometimes the body just hurts. I want so bad to believe him but I think he was trying to calm myself and my wife down because he saw how upset we were. I called my infectious disease dr when we got home and they told me they needed to follow up with me so I have appointment with him on 24th. Maybe he will tell me something next wed before I go to my hematologist appointment next fri.
Thnx for everyone's help!
Bubba...........
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BayouSouth - Name: Bubba
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: Oct 2012
- Age at diagnosis: 55
Re: Just been diagnosed, need help
Hi Bubba, go to a myeloma specialist or hem/onc and he will run several tests (SPEP, FLC assay, serum/urine immunofixation) which will reveal much. You also will need a BMB to be absolutely certain. Good luck.
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terryl1 - Name: Terry
- Who do you know with myeloma?: self
- When were you/they diagnosed?: August 10, 2011
- Age at diagnosis: 49
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