I was diagnosed with stage 2 multiple myeloma in July 2015.
Since then, I have undergone four cycles of Velcade, dexamethasone, and Revlimid. I also have a compressed fracture in my T-9 vertebrae which has been very challenging. I could not have kyphoplasty because the vertebrae was 90% compressed. I am currently using a 50 mcg fentanyl patch, which is efficient for the pain, but murder on my mind. It affects my nervous system and makes me almost non-functional. I also have slight neuropathy.
I had an autologous stem cell transplant in December 2015. At the end of March I was declared cancer free by my oncologist. I'm hoping to keep this way for awhile.
This journey has been very difficult for me. I am in some kind of back pain almost all of the time, which is very frustrating. I cannot take opioid drugs (except for the fentanyl) because my system does not tolerate them. I am currently going for physical therapy twice a week. It is good in the sense that it loosens up my muscles, but the pain is never gone completely.
This week I have an appointment to see a specialist for a brace. Hopefully, that will straighten me out a bit. I don't know if it will do anything for the pain, but we shall see.
Just wanted to share. If there is anyone on this forum who reads my story and can offer any suggestions to alleviate my pain more efficiently, your comments are most welcome.
Thank you.
Aurora
Forums
-
Aurora T - Name: Aurora Torres
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: July 2015
- Age at diagnosis: 60
Re: My story - diagnosed July 2015, still in pain
Some members of the forum use Cymbalta (duloxetine), a prescription antidepressant, to dull the pain.
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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: My story - diagnosed July 2015, still in pain
I tried Cymbalta. Unfortunately, I could not tolerate it.
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Aurora T - Name: Aurora Torres
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: July 2015
- Age at diagnosis: 60
Re: My story - diagnosed July 2015, still in pain
Aurora, I hope with time you'll find relief from your pain. When I was first diagnosed, I was told I had four compression fractures of my vertebrae. I had kyphoplasty to cement two performed by a neurosurgeon and started my initial induction therapy followed by an autologous stem cell transplant (ASCT). During my 60 day post-transplant visit I told my doctors that I was still in pain. An MRI revealed that I in fact had suffered eleven fractures. I completed two additional kyphoplasty procedures, which cemented my vertebrae from T-8 to T-12 and L1 to L-5, with T-4 being left due to its difficulty to access. I still feel a little pain, but it is much better than before.
My thoughts would be to seek a second opinion. I had my final two kyphoplasty procedures done by a neuroradiologist at Roswell Park Cancer Institute. I now can focus on my cancer rather than the limitations and challenges of overwhelming chronic pain.
Good luck!
Kully
My thoughts would be to seek a second opinion. I had my final two kyphoplasty procedures done by a neuroradiologist at Roswell Park Cancer Institute. I now can focus on my cancer rather than the limitations and challenges of overwhelming chronic pain.
Good luck!
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 July 2015, still in pain
Welcome, Aurora! 
Just wanted to say hello and wish you a beautiful and pain-free day today.
God bless you!
Just wanted to say hello and wish you a beautiful and pain-free day today.
God bless you!
Re: My story - diagnosed July 2015, still in pain
Hi Aurora,
Like you I have not been able to have surgery for my spine.
I was diagnosed in June 2013 after I broke my back in several places.
I was living in Thailand at the time and had a fall that would for a normal person would not have been a problem, they rushed me to hospital and after several s-rays decided to operate, placing screws and rods in my back.
No one picked up my myeloma on any of my tests which were extensive.
I returned to Australia to recuperate and lost count of the number of times I was admitted to Emergency with pain so bad I could not get off the bed, they would have to medicate me to even get me on the trolley. Was being told every time it was my surgery. No tests, just more drugs. I even spoke to a neurologist in the hospital, still nothing, Just treated me like I was a malingerer.
I was in so much pain, so after about 6 months of all of this I finally got myself out of bed and fell over and fractured 2 more vertebrae! Finally I refused early one morning to leave the hospital. I demanded they do something! Later that afternoon a resident just casually walked in,and said you have multiple myeloma. I was on my own and when he explained I was devastated.
I had an auto stem cell transplant in January 2014 and am only in partial remission.
If they had picked it up earlier they told me they could have operated, but now my bones are too weak to take out the screws, etc.
I am in constant pain and have tried I think every drug known to man! But a lot of my pain comes from still having all the metal in my back (so they say). I have asked about a brace as I now have a badly curved spine and I would have thought a brace might straighten me up a bit (I have lost 3 inches in height) and help support me.
They have said no, there reason is it will make my back weaker as my back muscles will start to weaken?
Please, if you hear of any type of brace that would be of help, I would appreciate you letting me know.
I have started doing yoga, and I try and walk, it does make a difference. It is not so much the improvement it gives you but, more importantly, if you don't do some exercise, after awhile your muscle tone will start to deteriorate, and it will make everything so much worse.
Every doctor, therapist, etc. I have spoken to have said exercise no matter how slow you are is the most important. You have to keep moving, moving moving!
Like you I have not been able to have surgery for my spine.
I was diagnosed in June 2013 after I broke my back in several places.
I was living in Thailand at the time and had a fall that would for a normal person would not have been a problem, they rushed me to hospital and after several s-rays decided to operate, placing screws and rods in my back.
No one picked up my myeloma on any of my tests which were extensive.
I returned to Australia to recuperate and lost count of the number of times I was admitted to Emergency with pain so bad I could not get off the bed, they would have to medicate me to even get me on the trolley. Was being told every time it was my surgery. No tests, just more drugs. I even spoke to a neurologist in the hospital, still nothing, Just treated me like I was a malingerer.
I was in so much pain, so after about 6 months of all of this I finally got myself out of bed and fell over and fractured 2 more vertebrae! Finally I refused early one morning to leave the hospital. I demanded they do something! Later that afternoon a resident just casually walked in,and said you have multiple myeloma. I was on my own and when he explained I was devastated.
I had an auto stem cell transplant in January 2014 and am only in partial remission.
If they had picked it up earlier they told me they could have operated, but now my bones are too weak to take out the screws, etc.
I am in constant pain and have tried I think every drug known to man! But a lot of my pain comes from still having all the metal in my back (so they say). I have asked about a brace as I now have a badly curved spine and I would have thought a brace might straighten me up a bit (I have lost 3 inches in height) and help support me.
They have said no, there reason is it will make my back weaker as my back muscles will start to weaken?
Please, if you hear of any type of brace that would be of help, I would appreciate you letting me know.
I have started doing yoga, and I try and walk, it does make a difference. It is not so much the improvement it gives you but, more importantly, if you don't do some exercise, after awhile your muscle tone will start to deteriorate, and it will make everything so much worse.
Every doctor, therapist, etc. I have spoken to have said exercise no matter how slow you are is the most important. You have to keep moving, moving moving!
-
Tori - Name: Victoria
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: June 2013
- Age at diagnosis: 56
Re: My story - diagnosed July 2015, still in pain
Hello Tori,
Your story is a real inspiration to me. You are very brave and have persevered with your disease. You inspire me to never give up, but this is not easy (as you well know). What do you do with your days, Tori? What do you do to occupy the hours? I wake up terrified everyday just thinking of what I can do to take my mind off this pain. I do get out, but I have no consolation. I don't enjoy anything. That is so sad. My husband is at his wit's end too. I try very hard not to complain, but he sees the suffering in my face all the time.
I have reduced my fentanyl patch from a 50 mcg to a 37 mcg because the 50 makes me crazy. I can't even describe what I feel from it. The 37 is better but it does not control my pain efficiently and I think I am going through withdrawal from the 50 also. I use a heating pad but that only gives me temporary relief. I am considering nerve blocks at this point. Anything that will give me some relief.
I am seeing the doctor on May 9th for the results of an MRI that she suggested I have. She wants to see what is going on with my spine since I have not had an MRI done since last September. If everything seems ok, she will fit me for the brace. I don't know how well the brace will take care of pain, but we shall see. Maybe if my posture is better, I can function better.
I will keep you posted on the brace.
Your story is a real inspiration to me. You are very brave and have persevered with your disease. You inspire me to never give up, but this is not easy (as you well know). What do you do with your days, Tori? What do you do to occupy the hours? I wake up terrified everyday just thinking of what I can do to take my mind off this pain. I do get out, but I have no consolation. I don't enjoy anything. That is so sad. My husband is at his wit's end too. I try very hard not to complain, but he sees the suffering in my face all the time.
I have reduced my fentanyl patch from a 50 mcg to a 37 mcg because the 50 makes me crazy. I can't even describe what I feel from it. The 37 is better but it does not control my pain efficiently and I think I am going through withdrawal from the 50 also. I use a heating pad but that only gives me temporary relief. I am considering nerve blocks at this point. Anything that will give me some relief.
I am seeing the doctor on May 9th for the results of an MRI that she suggested I have. She wants to see what is going on with my spine since I have not had an MRI done since last September. If everything seems ok, she will fit me for the brace. I don't know how well the brace will take care of pain, but we shall see. Maybe if my posture is better, I can function better.
I will keep you posted on the brace.
-
Aurora T - Name: Aurora Torres
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: July 2015
- Age at diagnosis: 60
Re: My story - diagnosed July 2015, still in pain
Hi Aurora,
Sorry for my late reply,
Just wanted to wish you all the best for your MRI Results today.
Thank you so much for your kind words, and taking the time to read my long post.
I'm not sure what country you are in?
I am in Queensland Australia and unfortunately it has taken me years of searching to find solutions to my challenges.
We have what they call a pain clinic that only deals with pain. You must be referred by your doctor, but they do a complete assessment and then arrange for you to see all the right specialists that can help.
I have had nerve blocks, with no success. I know everyone's experience is different, but I would seriously consider any other option first.
Like you, motivation, mood, fatigue, have been huge hurdles to overcome.
Some days I am really motivated but don't have the energy, other days my pain level is too great to do anything. I wake most mornings and before I get out of bed I wonder what sort of person I will be today – happy, sad, tired, energetic. It is not like a mood disorder or depression, more like 10 different people living in one body. Who will shine through today?
(No, I'm not crazy!)
One thing that I have be doing which has helped me is to arrange during the week a couple of outings. Start really small, nothing major. I commit myself to maybe a coffee in a coffee shop close to home with a friend, or a yoga class. There are classes run by the cancer council that are free and specially tailored for us. I have a friend who I go with, so it's harder to cancel.
If you can't make theses outings, that's fine, but if you are committed, it's a little bit harder not to go.
I also found that not being able to work, and being home all day, my mind was really suffering, I joined a group that has classes for over 50s. You pay a yearly fee and can go to as many classes per year that you like. They have all types of topics that run for 12-week blocks. Again, if your interested in the class and make a few friends, it's harder to cancel (a few of the women are in there 90s!). Yes, I know it's daunting! (I canceled my yoga class today; some days it's not possible.) On days like this, I just say no I'm can't today, and stop and just have what I call a holiday, I think of all the people who are at work and would love a day just to read a book or binge a T.V series.
So things that have helped me.
1. Find a pain clinic (be referred by your doctor)
They may be called something else in your country. They will package everything needed after assessment. You will be surprised what they will find that can help. I was referred for hydrotherapy. It was one of the best things that happened, helped my pain.
2. Make a list off all the things you enjoyed before your new life (or wanted to do)
One side psychical, other side mental. Obviously there will be many you can't do (my can't do list was huge). Think about what you can do (push yourself a bit here). Find groups that share similar interests as you if that's your thing.
3. Check out organizations that offer courses.
I'm doing Tai Chi and a philosophy course at the moment.
I know your looking at this and going this is all too hard! But if you want to get back on the horse, you have to have a horse!
Just start with even one commitment, You will be amazed if you wake up in the morning even one day a week and know you have something to get up for and enjoy. You will be on your way.
I try and make anything I'm doing after midday, as I am not good in the morning, and that stopped me doing a lot of things.
I also bought a little Chihuahua. She is great company, and also a reason that I have to go for a walk in the afternoon. Sometimes it's only a short one, and other days we check out new parks. If it wasn't for her, I wouldn't have gone out the door for days.
To say it's not hard is an understatement! I am in partial remission and every six weeks when I go for my checkup (my levels are increasing), I am a wreck.
I was in bed for 6 months after my stem cell transplant and I never thought I would be able to achieve anything, let alone do yoga, I stumble through, sometimes when I look in the mirror at class I look like a banana, with my curved spine!
I hope things improve for you, and even if you investigate one of my suggestions I hope they help because I know how hard it is. Even now I sometimes find I can't get any pleasure or enjoyment out of anything. Sometimes I get up and get ready and think what's the point? But if you don't get out there and do it do you really want the other option of continuing your life the way it is now?
My husband was really suffering like yours with worry, I had always been an outgoing, full-on person, had my own business, and never stopped.
I think what got me going was the sheer boredom of being an ill person.
One day when I started to get mobile after my stem cell transplant I realised that the only conversation I had with my family was about my illness (I had stopped seeing all my friends). My husband would come home from work and the only thing I had to talk about was my pain, medication, doctors appointments.
I know you have to talk about it, but when it becomes your whole life?
When I first started getting out and doing things, the look on my husband's face when I started talking about my new life (even though it was small) was priceless I don't think we realise sometimes how much they worry.
If you could keep me up to date on the brace I would appreciate it.
Look forward to hearing you you progress
Sorry for my late reply,
Just wanted to wish you all the best for your MRI Results today.
Thank you so much for your kind words, and taking the time to read my long post.
I'm not sure what country you are in?
I am in Queensland Australia and unfortunately it has taken me years of searching to find solutions to my challenges.
We have what they call a pain clinic that only deals with pain. You must be referred by your doctor, but they do a complete assessment and then arrange for you to see all the right specialists that can help.
I have had nerve blocks, with no success. I know everyone's experience is different, but I would seriously consider any other option first.
Like you, motivation, mood, fatigue, have been huge hurdles to overcome.
Some days I am really motivated but don't have the energy, other days my pain level is too great to do anything. I wake most mornings and before I get out of bed I wonder what sort of person I will be today – happy, sad, tired, energetic. It is not like a mood disorder or depression, more like 10 different people living in one body. Who will shine through today?
(No, I'm not crazy!)
One thing that I have be doing which has helped me is to arrange during the week a couple of outings. Start really small, nothing major. I commit myself to maybe a coffee in a coffee shop close to home with a friend, or a yoga class. There are classes run by the cancer council that are free and specially tailored for us. I have a friend who I go with, so it's harder to cancel.
If you can't make theses outings, that's fine, but if you are committed, it's a little bit harder not to go.
I also found that not being able to work, and being home all day, my mind was really suffering, I joined a group that has classes for over 50s. You pay a yearly fee and can go to as many classes per year that you like. They have all types of topics that run for 12-week blocks. Again, if your interested in the class and make a few friends, it's harder to cancel (a few of the women are in there 90s!). Yes, I know it's daunting! (I canceled my yoga class today; some days it's not possible.) On days like this, I just say no I'm can't today, and stop and just have what I call a holiday, I think of all the people who are at work and would love a day just to read a book or binge a T.V series.
So things that have helped me.
1. Find a pain clinic (be referred by your doctor)
They may be called something else in your country. They will package everything needed after assessment. You will be surprised what they will find that can help. I was referred for hydrotherapy. It was one of the best things that happened, helped my pain.
2. Make a list off all the things you enjoyed before your new life (or wanted to do)
One side psychical, other side mental. Obviously there will be many you can't do (my can't do list was huge). Think about what you can do (push yourself a bit here). Find groups that share similar interests as you if that's your thing.
3. Check out organizations that offer courses.
I'm doing Tai Chi and a philosophy course at the moment.
I know your looking at this and going this is all too hard! But if you want to get back on the horse, you have to have a horse!
Just start with even one commitment, You will be amazed if you wake up in the morning even one day a week and know you have something to get up for and enjoy. You will be on your way.
I try and make anything I'm doing after midday, as I am not good in the morning, and that stopped me doing a lot of things.
I also bought a little Chihuahua. She is great company, and also a reason that I have to go for a walk in the afternoon. Sometimes it's only a short one, and other days we check out new parks. If it wasn't for her, I wouldn't have gone out the door for days.
To say it's not hard is an understatement! I am in partial remission and every six weeks when I go for my checkup (my levels are increasing), I am a wreck.
I was in bed for 6 months after my stem cell transplant and I never thought I would be able to achieve anything, let alone do yoga, I stumble through, sometimes when I look in the mirror at class I look like a banana, with my curved spine!
I hope things improve for you, and even if you investigate one of my suggestions I hope they help because I know how hard it is. Even now I sometimes find I can't get any pleasure or enjoyment out of anything. Sometimes I get up and get ready and think what's the point? But if you don't get out there and do it do you really want the other option of continuing your life the way it is now?
My husband was really suffering like yours with worry, I had always been an outgoing, full-on person, had my own business, and never stopped.
I think what got me going was the sheer boredom of being an ill person.
One day when I started to get mobile after my stem cell transplant I realised that the only conversation I had with my family was about my illness (I had stopped seeing all my friends). My husband would come home from work and the only thing I had to talk about was my pain, medication, doctors appointments.
I know you have to talk about it, but when it becomes your whole life?
When I first started getting out and doing things, the look on my husband's face when I started talking about my new life (even though it was small) was priceless I don't think we realise sometimes how much they worry.
If you could keep me up to date on the brace I would appreciate it.
Look forward to hearing you you progress
-
Tori - Name: Victoria
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: June 2013
- Age at diagnosis: 56
Re: My story - diagnosed July 2015, still in pain
Hello Tori,
Thank you so much for your response. You most definitely are an inspiration and I would love to continue our communication for as long as possible! I live in Queens, New York (a borough of New York City).
I admire you for your perseverance and tenacity on overcoming your pain. I got fitted for my brace yesterday. It will be two braces, actually -- one for my shoulder area, and the other for my lower back area. It will be ready in two weeks. It is made of a material similar to Velcro.
I do have a palliative team that works with me as far as pain is concerned. I am still on the patch and that doesn't help because it has negative side effects for my nervous system. I feel very depressed and am consistently in a mental fog. Right now, I have to use it because my pain is excruciating. My pain doctor has referred me to a pain management anesthesiologist. When I see him next Wednesday, he will assess everything and decide if a nerve block could possibly work for me. If not, my doctor said that there are more invasive surgeries that perhaps could be done. At this point, I would accept anything if I knew that it would help. The doctor doing the brace told me that the pain comes from the nerves. My T-8 and T-10 are sitting on what remains of T-9 and that's why the pain radiates to the sides. I have had this for so long -- it's just unbearable. I try to get my mind off it, but it is very difficult.
I try to get out. My daughter is presently living with us and she encourages me to go out for walks. She has two Chihuahuas and they cheer me up too. We go out for walks with them. I have to find something else to take up my time. It seems like you stay very busy and that's what I want. If I can devote my time to something that can take my mind off the pain for awhile, I would be more of a happy human being. It's finding the right thing that's difficult. I don't have the patience to read anymore. I start reading and then I don't continue. My life was my job -- I was an administrative assistant for the chairman and general counsel of an HVAC company (heating, ventilation, air conditioning) who provided these services for all of New York City and some of its outer boroughs. I was there everyday and busy everyday. Once that ended, it seemed as though my world ended too. As you can see, I still struggle everyday.
I hear you about talking about the pain all the time. No one wants to hear it anymore and I keep it pretty much to myself. The worst time for me is when I go to bed at night hours before I have to change my patch. It is very painful because no matter what position I am in, it is uncomfortable. I had two very scary panic attacks a few weeks back. I was screaming and carrying on -- totally out of control. It scared me very much, just as it did my husband and daughter. I am more in control of my emotions now, but it's still difficult. Do you take any antidepressants? I did for years (before the cancer). I say that perhaps that contributed to my disease. Maybe the fluoride did something to my blood. I don't want to get back on them because of the drastic withdrawals that accompany them. I have become very afraid of taking medications.
What medicines do you take? I am on acyclovir and Bactrim (sulfamethoxazole and trimethoprim) only at the moment. Are you still under treatment being on partial remission? I did not want to take Revlimid as a maintenance drug. I am trying very hard to watch my diet and curb sugars as much as possible. I don't know if that will work, but I'm trying my hardest.
Let's communicate often. I feel as though you are a friend -- someone who has this in common with me and can share stories. I am happy that you have found many outlets to relieve you. I will try to do the same.
Please stay in touch.
Thank you so much for your response. You most definitely are an inspiration and I would love to continue our communication for as long as possible! I live in Queens, New York (a borough of New York City).
I admire you for your perseverance and tenacity on overcoming your pain. I got fitted for my brace yesterday. It will be two braces, actually -- one for my shoulder area, and the other for my lower back area. It will be ready in two weeks. It is made of a material similar to Velcro.
I do have a palliative team that works with me as far as pain is concerned. I am still on the patch and that doesn't help because it has negative side effects for my nervous system. I feel very depressed and am consistently in a mental fog. Right now, I have to use it because my pain is excruciating. My pain doctor has referred me to a pain management anesthesiologist. When I see him next Wednesday, he will assess everything and decide if a nerve block could possibly work for me. If not, my doctor said that there are more invasive surgeries that perhaps could be done. At this point, I would accept anything if I knew that it would help. The doctor doing the brace told me that the pain comes from the nerves. My T-8 and T-10 are sitting on what remains of T-9 and that's why the pain radiates to the sides. I have had this for so long -- it's just unbearable. I try to get my mind off it, but it is very difficult.
I try to get out. My daughter is presently living with us and she encourages me to go out for walks. She has two Chihuahuas and they cheer me up too. We go out for walks with them. I have to find something else to take up my time. It seems like you stay very busy and that's what I want. If I can devote my time to something that can take my mind off the pain for awhile, I would be more of a happy human being. It's finding the right thing that's difficult. I don't have the patience to read anymore. I start reading and then I don't continue. My life was my job -- I was an administrative assistant for the chairman and general counsel of an HVAC company (heating, ventilation, air conditioning) who provided these services for all of New York City and some of its outer boroughs. I was there everyday and busy everyday. Once that ended, it seemed as though my world ended too. As you can see, I still struggle everyday.
I hear you about talking about the pain all the time. No one wants to hear it anymore and I keep it pretty much to myself. The worst time for me is when I go to bed at night hours before I have to change my patch. It is very painful because no matter what position I am in, it is uncomfortable. I had two very scary panic attacks a few weeks back. I was screaming and carrying on -- totally out of control. It scared me very much, just as it did my husband and daughter. I am more in control of my emotions now, but it's still difficult. Do you take any antidepressants? I did for years (before the cancer). I say that perhaps that contributed to my disease. Maybe the fluoride did something to my blood. I don't want to get back on them because of the drastic withdrawals that accompany them. I have become very afraid of taking medications.
What medicines do you take? I am on acyclovir and Bactrim (sulfamethoxazole and trimethoprim) only at the moment. Are you still under treatment being on partial remission? I did not want to take Revlimid as a maintenance drug. I am trying very hard to watch my diet and curb sugars as much as possible. I don't know if that will work, but I'm trying my hardest.
Let's communicate often. I feel as though you are a friend -- someone who has this in common with me and can share stories. I am happy that you have found many outlets to relieve you. I will try to do the same.
Please stay in touch.
-
Aurora T - Name: Aurora Torres
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: July 2015
- Age at diagnosis: 60
Re: My story - diagnosed July 2015, still in pain
Hi Aurora,
Great to see your reply. I have had the flu for the last few days, so hadn't been up to looking at the site. I would love to stay in contact.
Great to see your reply. I have had the flu for the last few days, so hadn't been up to looking at the site. I would love to stay in contact.
-
Tori - Name: Victoria
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: June 2013
- Age at diagnosis: 56
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