I am 66 years old and very active. I had my annual checkup in Dec 2013 and the blood test showed a little high protein levels. I did more test this year and finally this past Wednesday, August 14, I was diagnosed with multiple myeloma.
Since I am new to this, I don't know what to feel. Does anyone know what will I go through if I refuse treatment?
I have a friend that is living with this for 12 years and not even a day goes by without major pain. I don't want to sound like a loser who has given up, but are the years in pain and suffering worth it?
I am suffering from a micro fracture on my T10 and haven't slept in my bed for almost 4 weeks since I can't get out of bed without almost passing out.
Forums
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ethomas - Name: Emmanouel Thomas AKA Amo
- Who do you know with myeloma?: Yes
- When were you/they diagnosed?: August 14, 2014
- Age at diagnosis: 65
Re: My story - diagnosed with multiple myeloma this week
Amo-
Unfortunately, if you go without treatment, you are likely to develop more bone pain from fractures since you are already experiencing one.
My treatment started with Revlimid and dexamethasone for the myeloma and Zometa infusions for my bones after having a fracture of my left humerus. Once I started treatment, the bone pain began to diminish and my cancer numbers dropped rapidly. I returned to work full time as a physical therapist once my arm healed and continued working for 4 more years with one more leave of absence while I had my stem cell transplant.
I have had very few problems in the 6 1/2 years since my diagnosis. Few infections, none now for 2 years, few side effects from the drugs, occasional pain in my fracture site, but still leading a fairly normal life. I just traveled to Europe for 4 weeks with my sister on a trip that we planned, not a tour. I had no problems with traveling.
So, I would suggest that if you haven't seen a myeloma specialist yet, that you do so and that you start treatment. You are likely to feel much better and be able to live an active life for quite a long time once the spinal fracture heals and your pain decreases.
Nancy in Phila
Unfortunately, if you go without treatment, you are likely to develop more bone pain from fractures since you are already experiencing one.
My treatment started with Revlimid and dexamethasone for the myeloma and Zometa infusions for my bones after having a fracture of my left humerus. Once I started treatment, the bone pain began to diminish and my cancer numbers dropped rapidly. I returned to work full time as a physical therapist once my arm healed and continued working for 4 more years with one more leave of absence while I had my stem cell transplant.
I have had very few problems in the 6 1/2 years since my diagnosis. Few infections, none now for 2 years, few side effects from the drugs, occasional pain in my fracture site, but still leading a fairly normal life. I just traveled to Europe for 4 weeks with my sister on a trip that we planned, not a tour. I had no problems with traveling.
So, I would suggest that if you haven't seen a myeloma specialist yet, that you do so and that you start treatment. You are likely to feel much better and be able to live an active life for quite a long time once the spinal fracture heals and your pain decreases.
Nancy in Phila
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: My story - diagnosed with multiple myeloma this week
I am only learning about this disease myself. What I have learned is that no 2 people's experiences are exactly alike. Please seek out a multiple myeloma specialists and ask lots of questions before making any decisions.
Yes, it seems like there are those who suffer more than others, but in these threads you will also find stories of those who are living life as fully as than can. Best of luck.
Yes, it seems like there are those who suffer more than others, but in these threads you will also find stories of those who are living life as fully as than can. Best of luck.
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Smittie - Age at diagnosis: 54
Re: My story - diagnosed with multiple myeloma this week
Hi Nancy, I too was diagnosed on August 13th ... and was surprised. I had the MGUS cells for 3 years but I am very healthy and have no medical issues, I could lose 15-20 lbs, but that's what happens when your not active and slow down at 68 yrs old.
My right hip was done November 2012 and it was a breeze, I had therapy and it was super. April 2013 was a problem month, I went for a routine pelvic floor mesh and bladder mesh and abdominal wall mesh job done, came home felt good. Unforturnately 4 days later I was having emerency surgery as the stitches broke and the bowel twisted and my stomach is still puffed out like a 9 month pregnancy.
I honestly believe that that there may be some truth in the suggestion that "inflamation" causes cancer. I know in England there is a group that treats the inflamation first then prepares the chemo cocktail specifically for the patient, not one size fits all.
I am still in shock. I had a bone survey in February and there were no lesions, When I went in March to prepare for my left hip surgery it was noticed that my hemoglobin was very low, what???? I wondered why I felt tired, they gave me an infusion and I bounced back up and I am still normal.
After the bone marrow biopsy and the diagnosis I went into shock. I am so active, have no pain except for my left side hip waiting to recover, but it seems to be taking a longer time. I was going for therapy twice a week but have cancelled my appointments until I can wrap my head around this news.
I have to say I am very very tired lately though. I am a real estate agent, usually out till 11-12 p.m. at nite, or running around in a social circle. However, since the hip operation March 28, I have been home watching tv and going to sleep at 10 p.m.
My friends are in shock because I am always the one with the most energy and they are 47-57 years old. I was given this news and told the myeloma clinic at the hospital would be in touch. So far no call from them.
Just sitting here hanging on a string, informing myself through these great forums, its amazing how much information is out there. Not going to proofread this but maybe you can reply. Gloria
My right hip was done November 2012 and it was a breeze, I had therapy and it was super. April 2013 was a problem month, I went for a routine pelvic floor mesh and bladder mesh and abdominal wall mesh job done, came home felt good. Unforturnately 4 days later I was having emerency surgery as the stitches broke and the bowel twisted and my stomach is still puffed out like a 9 month pregnancy.
I honestly believe that that there may be some truth in the suggestion that "inflamation" causes cancer. I know in England there is a group that treats the inflamation first then prepares the chemo cocktail specifically for the patient, not one size fits all.
I am still in shock. I had a bone survey in February and there were no lesions, When I went in March to prepare for my left hip surgery it was noticed that my hemoglobin was very low, what???? I wondered why I felt tired, they gave me an infusion and I bounced back up and I am still normal.
After the bone marrow biopsy and the diagnosis I went into shock. I am so active, have no pain except for my left side hip waiting to recover, but it seems to be taking a longer time. I was going for therapy twice a week but have cancelled my appointments until I can wrap my head around this news.
I have to say I am very very tired lately though. I am a real estate agent, usually out till 11-12 p.m. at nite, or running around in a social circle. However, since the hip operation March 28, I have been home watching tv and going to sleep at 10 p.m.
My friends are in shock because I am always the one with the most energy and they are 47-57 years old. I was given this news and told the myeloma clinic at the hospital would be in touch. So far no call from them.
Just sitting here hanging on a string, informing myself through these great forums, its amazing how much information is out there. Not going to proofread this but maybe you can reply. Gloria
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gloria k.
Re: My story - diagnosed with multiple myeloma this week
Thank you all for encouraging posts, I have my marrow biopsy scheduled for Tuesday and don't know what to expect as far as pain.
Due to my cracked vertebrae I have not had a good night sleep for almost 2 months and am sleeping on my desk chair, which seems to be the most comfortable, but the pain is very bad. I take Percocet [oxycode + acetaminophen / paracetamol / Tylenol] ,which is effective for maybe 3 hours, then back to pain again. Just so frustrating
Due to my cracked vertebrae I have not had a good night sleep for almost 2 months and am sleeping on my desk chair, which seems to be the most comfortable, but the pain is very bad. I take Percocet [oxycode + acetaminophen / paracetamol / Tylenol] ,which is effective for maybe 3 hours, then back to pain again. Just so frustrating
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ethomas - Name: Emmanouel Thomas AKA Amo
- Who do you know with myeloma?: Yes
- When were you/they diagnosed?: August 14, 2014
- Age at diagnosis: 65
Re: My story - diagnosed with multiple myeloma this week
Amo, I had a total of 10 compression fractures and with patience and medical care, I was able to move forward. I slept on a futon mattress with a sheet of plywood placed underneath for two months and used a dog leash attached to my foot board to help me to sit up.
I was, and still am, on oxycodone to help with pain, but today, after kyphoplasty to cement 8 of the 10 vertebrae, I can move with just a little pain.
I hope this helped and good luck with your recovery!
Kully
I was, and still am, on oxycodone to help with pain, but today, after kyphoplasty to cement 8 of the 10 vertebrae, I can move with just a little pain.
I hope this helped and good luck with your recovery!
Kully
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kullybunnny1 - Name: Kully
- Who do you know with myeloma?: me
- When were you/they diagnosed?: August 2013
- Age at diagnosis: 48
Re: My story - diagnosed with multiple myeloma this week
Thanks Kully. It helps a lot, so I guess I am engineering a lift.
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ethomas - Name: Emmanouel Thomas AKA Amo
- Who do you know with myeloma?: Yes
- When were you/they diagnosed?: August 14, 2014
- Age at diagnosis: 65
Re: My story - diagnosed with multiple myeloma this week
I had my bone marrow biopsy done yesterday in Northridge Hospital. I acted just like a baby, they gave me the numbing solution and then after 10 minutes the doctor said, "Are you ready?" So I braced myself and said go ahead and to my surprise he said hey I am done.
Man I felt so embarrassed. .
Man I felt so embarrassed. .
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ethomas - Name: Emmanouel Thomas AKA Amo
- Who do you know with myeloma?: Yes
- When were you/they diagnosed?: August 14, 2014
- Age at diagnosis: 65
Re: My story - diagnosed with multiple myeloma this week
Hi Amo.
I think we all can relate to your fear of years of pain and suffering. Like Smittie said, no 2 people are exactly alike. Also, no sleep for weeks would make you feel pretty frustrated.
I thought I was going downhill fast - didn't know if it would be worth it, but my life is very good now. In fact, life is sweeter when you feel that you are on "borrowed time"
Hi Gloria.
Sorry to hear you were diagnosed on the 13th and are in shock and "trying to wrap your head around" multiple myeloma. I think I went through the 5 stages of grieving when I was diagnosed:
1. Denial/ shock
2. Bargaining
3. Anger
4. Grief / depression
5. Acceptance.
I think shock is a way for your mind to take in bad news - because you are in shock you take the bad new in smaller doses. I will never forget those 6 months between diagnosis and my stem cell transplant. It is a painful journey, emotionally. But as I told Amo, I honestly feel like my life is better in some ways now than before. I had to "let go" of lots of things emotionally (my new house etc) and put my loved ones In God's hands when I wasn't sure I would live.
But now, 2 years later, it has freed me of some struggles. I don't get upset over little things as much any more because you realize they do not matter. I don't get afraid as much because I have been through a lot and survived and have felt comfort of God. I don't need to "jump through hoops" to please people or meet other people's expectations.
I hope that encourages you. It is hard, though.
I think we all can relate to your fear of years of pain and suffering. Like Smittie said, no 2 people are exactly alike. Also, no sleep for weeks would make you feel pretty frustrated.
I thought I was going downhill fast - didn't know if it would be worth it, but my life is very good now. In fact, life is sweeter when you feel that you are on "borrowed time"
Hi Gloria.
Sorry to hear you were diagnosed on the 13th and are in shock and "trying to wrap your head around" multiple myeloma. I think I went through the 5 stages of grieving when I was diagnosed:
1. Denial/ shock
2. Bargaining
3. Anger
4. Grief / depression
5. Acceptance.
I think shock is a way for your mind to take in bad news - because you are in shock you take the bad new in smaller doses. I will never forget those 6 months between diagnosis and my stem cell transplant. It is a painful journey, emotionally. But as I told Amo, I honestly feel like my life is better in some ways now than before. I had to "let go" of lots of things emotionally (my new house etc) and put my loved ones In God's hands when I wasn't sure I would live.
But now, 2 years later, it has freed me of some struggles. I don't get upset over little things as much any more because you realize they do not matter. I don't get afraid as much because I have been through a lot and survived and have felt comfort of God. I don't need to "jump through hoops" to please people or meet other people's expectations.
I hope that encourages you. It is hard, though.
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antelope1225 - Name: Cathy1225
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: May 25 2012
- Age at diagnosis: 55
Re: My story - diagnosed with multiple myeloma this week
They took many x-rays in hospital and my doctor said there were no holes or lesions on my bones, which is good news I guess. However, he also said the bone marrow biopsy showed high plasma, about %90. What does that mean?
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ethomas - Name: Emmanouel Thomas AKA Amo
- Who do you know with myeloma?: Yes
- When were you/they diagnosed?: August 14, 2014
- Age at diagnosis: 65
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