Good Morning,
My mother, 53, was diagnosed with Multiple Myeloma March 10, 2014 and passed less than two months later, April 23. I feel it necessary to educate myself, and share her story, in hopes that doctors can learn something from it. There is generally very little known about causes, but from everything I have researched she had many of them. WE HAVE NO FAMILY HISTORY.
-Previous high dose radiation, vaginally, for treatment of cervical cancer 14 years ago. (Something I do not recommend if at all possible, it caused her MANY MANY problems.) This perhaps is the "smoking gun"
-Previously worked as a hair dresser, 20 years ago.
-Chronic use of NSAIDs and other over the counter pain relievers; she suffered from severe migraines her whole adult life.
She had many symptoms over the past 10 years since her radiation. She had severe bladder and bowel problems (blockages and scarring which caused hospitalization), liver scarring, and stenosis from the radiation. She had her gallbladder removed. She complained of very painful rib and back pain as early as 2007. She should have bought stock in Icy Hot, as she used it on her body in one place or another everyday.
She was chronically fatigued, all the time, for years. Seemed to always be sick with one infection or another. In 2011, she had 3 lipoma (non cancerous tumors) removed from her back (there is some research relating lipomas to multiple myeloma.) In 2012 she was diagnosed with a thyroid problem. In 2013, a few months before she was diagnosed and passed, she began bleeding clots during urination, she had a scope done and found a lesion, which was then blamed on her radiation.
My mother frequented her doctor/doctors in the past 14 years, and with all the blood work and issues she had, I cannot believe, just cannot, that her multiple myeloma went undiagnosed. Obviously, several of her health issues were a direct link to her multiple myeloma.
I truly want doctors to know her story so they can learn from her limited but obviously lengthy battle with this disease.
Looking forward to hearing from you all, your risk factors, and journeys. Please let me know if you have questions about my Moms experience.
Forums
4 posts
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ForMyMomma - Name: Jessica
- Who do you know with myeloma?: My mother
- When were you/they diagnosed?: March 10, 2014, passed April 23, 2014
- Age at diagnosis: 53
Re: Risk factors doctors need to know
Hello Jessica,
I am so sorry about your mother. I know it's hard to understand how this could have happened, and I know you must be frustrated. There never seems to be an easy, or right thing to say, when something seemingly so senseless like this happens. I hope you can find comfort in your connection with the people on this forum, and in your much appreciated efforts to help others. Thank you Jessica, and please know that you are in my prayers.
God bless,
Mary
I am so sorry about your mother. I know it's hard to understand how this could have happened, and I know you must be frustrated. There never seems to be an easy, or right thing to say, when something seemingly so senseless like this happens. I hope you can find comfort in your connection with the people on this forum, and in your much appreciated efforts to help others. Thank you Jessica, and please know that you are in my prayers.
God bless,
Mary
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inky100 - Name: Mary
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2005
- Age at diagnosis: 43
Re: Risk factors doctors need to know
So sorry about your mother! I lost my mom to breast cancer when I was 12 and she was the very young age of 32. I think this forum will be a great way to share her story and help others while hopefully helping you get through the whole grieving process. Please know that I will be praying for comfort and peace throughout this difficult time for you!!
I am very interested in the possible link between lipomas and multiple myeloma, so if you have any links or information, could you please share with me?
I have not been diagnosed yet, but multiple myeloma was included in a differential diagnosis on a recent CT scan and some of my bloodwork that has come back is possibly pointing in that direction.
However, I am waiting for my bone marrow biopsy to be scheduled because the doctor I am seeing is out on leave. So I am going to request to be seen by a new doctor asap so no more time is wasted.
Not sure if you can just post the links or information about the lipomas in this thread or you can private message me?
I have had 2 lipomas removed from my left rib area in the last year and I have horrible pain in my ribs and back area, mostly on my left side.
Thanks for sharing your mom's story and you will be in my thoughts and prayers!!
Sincerely,
Sonya
I am very interested in the possible link between lipomas and multiple myeloma, so if you have any links or information, could you please share with me?
I have not been diagnosed yet, but multiple myeloma was included in a differential diagnosis on a recent CT scan and some of my bloodwork that has come back is possibly pointing in that direction.
However, I am waiting for my bone marrow biopsy to be scheduled because the doctor I am seeing is out on leave. So I am going to request to be seen by a new doctor asap so no more time is wasted.
Not sure if you can just post the links or information about the lipomas in this thread or you can private message me?
I have had 2 lipomas removed from my left rib area in the last year and I have horrible pain in my ribs and back area, mostly on my left side.
Thanks for sharing your mom's story and you will be in my thoughts and prayers!!
Sincerely,
Sonya
Re: Risk factors doctors need to know
Hi Jessica,
I am sorry that you lost your mother when she was only 53 years of age. You mentioned:
"She had many symptoms over the past 10 years since her radiation. She had severe bladder and bowel problems (blockages and scarring which caused hospitalization), liver scarring, and stenosis from the radiation. She had her gallbladder removed. She complained of very painful rib and back pain as early as 2007. She should have bought stock in Icy Hot, as she used it on her body in one place or another everyday. "
I was super healthy and had not seen a physician for 4 decades.
Then I had rib pain which disappeared and obviously morphed into very painful shoulder pain which moved from one shoulder blade to the other and back. My doctor suggested physical therapy and I answered without thinking: "I will commit suicide before I have P.T. for this".
Eventually, 6 weeks later I went for P.T. and then I called a halt to it after 6 weeks as I also used Icy Hot etc. to excess. Had an MRI and needed emergency surgery / corpectomy for 2 of my cervical vertebrae. Diagnosis: plasmacytoma and then myeloma.
Had I not been pro-active and stopped the P.T., who knows if I would be typing this post today. It's not good to second guess, but your mother surely went through lots of medical problems and I personally think someone should have been able to diagnose her earlier. I wish the best for you during your grieving process.
Kate
I am sorry that you lost your mother when she was only 53 years of age. You mentioned:
"She had many symptoms over the past 10 years since her radiation. She had severe bladder and bowel problems (blockages and scarring which caused hospitalization), liver scarring, and stenosis from the radiation. She had her gallbladder removed. She complained of very painful rib and back pain as early as 2007. She should have bought stock in Icy Hot, as she used it on her body in one place or another everyday. "
I was super healthy and had not seen a physician for 4 decades.
Then I had rib pain which disappeared and obviously morphed into very painful shoulder pain which moved from one shoulder blade to the other and back. My doctor suggested physical therapy and I answered without thinking: "I will commit suicide before I have P.T. for this".
Eventually, 6 weeks later I went for P.T. and then I called a halt to it after 6 weeks as I also used Icy Hot etc. to excess. Had an MRI and needed emergency surgery / corpectomy for 2 of my cervical vertebrae. Diagnosis: plasmacytoma and then myeloma.
Had I not been pro-active and stopped the P.T., who knows if I would be typing this post today. It's not good to second guess, but your mother surely went through lots of medical problems and I personally think someone should have been able to diagnose her earlier. I wish the best for you during your grieving process.
Kate
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Kate - Name: Kate
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: Dec. 2012
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