Amo,
Though you already have some bone pain issues with your back, I would encourage you to not refuse treatment at this time. I do not know the circumstances surrounding your friend who has myeloma and has been suffering with pain, but there are many people who have many years of good quality of life with the treatments that are available today for myeloma. How well people do and respond to myeloma treatment is individual and can vary quite a bit. How will you know for yourself if you do not give treatment a try first? Do not for a second believe that your friends experience with myeloma or anyone else’s will be your fate as well.
Dying from myeloma is not an easy painless thing. If you search on the Beacon you can find some people's accounts of what is was like to see their friends and loved ones die of myeloma. I saw someone die of brain cancer this year after treatment was stopped, and it was not an easy way to go. I am not ready to go there yet, and I will be trying to kick the can down the road myself for as long as I can, especially while I am enjoying my current good quality of life.
You will find a lot more people talk about difficulties and side effects of the myeloma treatments, but that is because they are still healthy enough to write about it.
In my case, I had significant back pain after I was diagnosed and treatment started. I was being moved around in a wheelchair. My oncologist told me the best thing to get my back pain under control was to treat the disease and he was right. A few weeks after starting Velcade and dexamethasone, the back pain disappeared completely. I am not a doctor, but I would consider the possibility that your back pain may not all be from a fracture in a single vertebrae, and if the myeloma is brought under control you may see results similar to mine. But you will not know if you do not try.
I remember it was a crazy emotional gut wrenching time just after receiving a diagnosis of myeloma. Try not to make any irrational decisions now. Eventually, I and most people learn to live with it and get on with our lives the best we can. For all of us, eventually a day like this will come. I see the older people in my life, the ones in the late seventies and latter, and they know their remaining years are numbered, but they are still living out their lives and making plans.
Forums
Re: My story - diagnosed with multiple myeloma this week
Amo,
Your spinal pain sounds like a real challenge. I feel for you.
Eric is right in everything he says. With a 90% plasma cell level, you really need to be talking about treatment with a myeloma specialist. The alternative of having the disease progress without treatment would be extremely unpleasant, to say the least. The treatment (myleoma drugs plus a drug like Zometa for strengthening your bones) will very likely help with the awful pain you are currently suffering and will improve your quality of life.
If you still have spinal pain after trying treatment for a while, I might also suggest discussing a relatively simple procedure known as a kyphoplasty with an orthopedic surgeon (Kully also mentioned this). Whether a kyphoplasty will work for you depends on the kind of fracture you have. This has provided immediate relief to many patients suffering from fractures of the vertebrae. But you should really first be discussing your disease treatment options with a myeloma specialist.
Best of luck to you and let us know if we can help in any way.
Your spinal pain sounds like a real challenge. I feel for you.
Eric is right in everything he says. With a 90% plasma cell level, you really need to be talking about treatment with a myeloma specialist. The alternative of having the disease progress without treatment would be extremely unpleasant, to say the least. The treatment (myleoma drugs plus a drug like Zometa for strengthening your bones) will very likely help with the awful pain you are currently suffering and will improve your quality of life.
If you still have spinal pain after trying treatment for a while, I might also suggest discussing a relatively simple procedure known as a kyphoplasty with an orthopedic surgeon (Kully also mentioned this). Whether a kyphoplasty will work for you depends on the kind of fracture you have. This has provided immediate relief to many patients suffering from fractures of the vertebrae. But you should really first be discussing your disease treatment options with a myeloma specialist.
Best of luck to you and let us know if we can help in any way.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: My story - diagnosed with multiple myeloma this week
Hi Arno, I just want to second what Eric and Multibilly have said. I had been having back pain for quite awhile before my diagnosis, but probably it was not quite as bad as what you're experiencing. Anyway, after just my first cycle of RVD (Revlimid / Velcade / dex), the pain disappeared almost completely. I was amazed that the improvement was so quick. And, best of all, it has stayed away now for over 1 1/2 years.
Good luck!
Good luck!
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mikeb - Name: mikeb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2009 (MGUS at that time)
- Age at diagnosis: 55
Re: My story - diagnosed with multiple myeloma this week
Hello Amo,
I'm sorry to hear of your back pain which is something that really affects our quality of life [QOL]. My bone marrow biopsy revealed 80% plasma involvement but no chromosomal abnormalities. The chromosome analysis, more commonly referred as to cytogenetics, is most important to your diagnosis as it provides significant data with regards to potential high risk markers in this disease.
You will find that all of us go through the initial shock and questions with regard to treatment. As many others before me have said, seek out a myeloma specialist and begin your treatment ASAP. So many negative ideas arise at the thought of chemo and its side effects. Trust me, the potential painful times and accelerated chances for your demise are considerably greater if you DON"T treat. I have been fortunate to have experienced minimal side effects while enjoying major improvements in my QOL after only 5 cycles of Cytoxan [cyclophosphamide], Decadron [dexamethasone] (both are oral) and Velcade (subcutaneous injections).
I wish you the very best on your personal journey with multiple myeloma,
Doug
I'm sorry to hear of your back pain which is something that really affects our quality of life [QOL]. My bone marrow biopsy revealed 80% plasma involvement but no chromosomal abnormalities. The chromosome analysis, more commonly referred as to cytogenetics, is most important to your diagnosis as it provides significant data with regards to potential high risk markers in this disease.
You will find that all of us go through the initial shock and questions with regard to treatment. As many others before me have said, seek out a myeloma specialist and begin your treatment ASAP. So many negative ideas arise at the thought of chemo and its side effects. Trust me, the potential painful times and accelerated chances for your demise are considerably greater if you DON"T treat. I have been fortunate to have experienced minimal side effects while enjoying major improvements in my QOL after only 5 cycles of Cytoxan [cyclophosphamide], Decadron [dexamethasone] (both are oral) and Velcade (subcutaneous injections).
I wish you the very best on your personal journey with multiple myeloma,
Doug
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Gruncle - Name: Doug
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: Mar.14, 2014
- Age at diagnosis: 64
Re: My story - diagnosed with multiple myeloma this week
Hello, Amo.
Your first challenge is accepting your diagnosis and that will take time. You can't control diagnosis. You can control what you do about it. Build a support team and let them help you. Your first priority is seeking out the best myeloma specialist you can find and starting treatment ASAP. Eric has given you some great advice here, I agree with him 100%.
I can sympathize with how you feel. I enjoyed good health for 65 years and last August during my annual physical my PCP said my blood proteins were a little high. After further testing, I was diagnosed with myeloma 3 months later.
I was devastated, scared, angry, and confused. With the help of a local myeloma support group and learning everything I could about myeloma, I was able to get a grip on my emotions and move forward. We started a treatment plan, and I will be going in for a stem cell transplant in November. I still work full time and enjoy my life.
Treatment is not a walk in the park but it is tolerable and will provide you with less pain and discomfort. It will also encourage you as you see the positive results of your treatment. Make an effort to learn everything you can about myeloma and seek out a local support group.
I wish you the very best on your journey with us and remember what others have said before me. Every case of myeloma is different. Don't compare yourself to your friend or anyone else. You are not a statistic, an average or a mean. Everyone's myeloma is different.
All the best!
Your first challenge is accepting your diagnosis and that will take time. You can't control diagnosis. You can control what you do about it. Build a support team and let them help you. Your first priority is seeking out the best myeloma specialist you can find and starting treatment ASAP. Eric has given you some great advice here, I agree with him 100%.
I can sympathize with how you feel. I enjoyed good health for 65 years and last August during my annual physical my PCP said my blood proteins were a little high. After further testing, I was diagnosed with myeloma 3 months later.
I was devastated, scared, angry, and confused. With the help of a local myeloma support group and learning everything I could about myeloma, I was able to get a grip on my emotions and move forward. We started a treatment plan, and I will be going in for a stem cell transplant in November. I still work full time and enjoy my life.
Treatment is not a walk in the park but it is tolerable and will provide you with less pain and discomfort. It will also encourage you as you see the positive results of your treatment. Make an effort to learn everything you can about myeloma and seek out a local support group.
I wish you the very best on your journey with us and remember what others have said before me. Every case of myeloma is different. Don't compare yourself to your friend or anyone else. You are not a statistic, an average or a mean. Everyone's myeloma is different.
All the best!
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Dano - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Jan 2014
- Age at diagnosis: 65
Re: My story - diagnosed with multiple myeloma this week
Thank you all for encouraging posts. I really appreciate it. I have an appointment this Thursday and will let you know what course of treatment I have been put on.
I hope I haven't given the impression that I am a loser. I am just looking at options and maybe it's the pain in my back that is doing the talking.
I hope I haven't given the impression that I am a loser. I am just looking at options and maybe it's the pain in my back that is doing the talking.
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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
Well I had my first shot of Velcade today. I am just wondering how you tolerated it? Not that I have issues with it, but the horror stories I hear 
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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'm really glad you decided to get treatment!! Hope you feel some relief soon.
I'm really glad you decided to get treatment!! Hope you feel some relief soon.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: My story - diagnosed with multiple myeloma this week
Hi Amo,
Sorry to hear about your diagnosis, but so glad to hear you have started treatment.
I would recommend you see a physiotherapist or occupational therapist to assist you with getting back to sleeping in your bed. Sleep is important when you are dealing with any sickness, and multiple myeloma is no exception. They can teach you ways to get comfortable in bed and how to get in and out with minimal discomfort. You may need to change your bed and one that is higher from the floor is recommended to reduce bending when getting in and out.
I have found when caring for people with back pain, if you can get comfortable, sometimes you can reduce pain medication. If pain meds aren't working, increasing doses should not be first line plan, as this can lead to problems with dependency which can seriously effect your life.
Anyway good luck with your treatment an your myeloma journey.
Jen
Sorry to hear about your diagnosis, but so glad to hear you have started treatment.
I would recommend you see a physiotherapist or occupational therapist to assist you with getting back to sleeping in your bed. Sleep is important when you are dealing with any sickness, and multiple myeloma is no exception. They can teach you ways to get comfortable in bed and how to get in and out with minimal discomfort. You may need to change your bed and one that is higher from the floor is recommended to reduce bending when getting in and out.
I have found when caring for people with back pain, if you can get comfortable, sometimes you can reduce pain medication. If pain meds aren't working, increasing doses should not be first line plan, as this can lead to problems with dependency which can seriously effect your life.
Anyway good luck with your treatment an your myeloma journey.
Jen
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NZMum - Name: NZMum
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: March2014
- Age at diagnosis: 49
Re: My story - diagnosed with multiple myeloma this week
Hello Billy, do you know how long before I start vomiting after Velcade injection? I had it this morning at around 10 AM it's 6 PM now
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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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