I was diagnosed with multiple myeloma in 2008. I did not require treatment until 2014. At that time (and still today) I was having severe lower back pain. I've been treated with CyBorD (cyclophosphamide, Velcade, and dexamethasone), Revlimid, prednisone, Kyprolis, and melphalan. I've also received Zometa infusions. I had an autologous transplant in April 2017, after which I was put on Revlimid as maintenance. Due to an itchy rash, Revlimid was discontinued, and I was started on Velcade again weekly, along with monthly Zometa.
I am fortunate to be surrounded by a loving family and a professional healthcare team as the battle continues.
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GuyHasIt - Name: Guy T.
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 2008
- Age at diagnosis: 49
Re: Hello from Arizona
Hey Guy,
I am new to this site and still learning how to post and all. It is interesting to me that you were diagnosed so long before you began treatment. While I am new to this, being diagnosed November 16, 2017, I am learning some from reading posts such as yours.
I am just beginning my treatment journey. I am in cycle 1 and tomorrow will be my day 4 of 1,4,8, and 11. I have already had a few side effects and have only started half of my medications. I have had Velcade and dexamethasone. I have not started the Revlimid and a new drug that was approved this year to help with the bones. I forget the name of it.
I am curious why you and your doctors waited to start your treatment.
I received one cycle of these medications while in the hospital and just began treatment again February 15th of this year. I could feel the difference. I could actually feel that the cancer had spread due to the pain. My pain is from my skull to my femur bones, mainly my back and ribs. I have broken bones in my ribs.
I will pray for you and ask the same.
I am new to this site and still learning how to post and all. It is interesting to me that you were diagnosed so long before you began treatment. While I am new to this, being diagnosed November 16, 2017, I am learning some from reading posts such as yours.
I am just beginning my treatment journey. I am in cycle 1 and tomorrow will be my day 4 of 1,4,8, and 11. I have already had a few side effects and have only started half of my medications. I have had Velcade and dexamethasone. I have not started the Revlimid and a new drug that was approved this year to help with the bones. I forget the name of it.
I am curious why you and your doctors waited to start your treatment.
I received one cycle of these medications while in the hospital and just began treatment again February 15th of this year. I could feel the difference. I could actually feel that the cancer had spread due to the pain. My pain is from my skull to my femur bones, mainly my back and ribs. I have broken bones in my ribs.
I will pray for you and ask the same.
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mammiev - Name: Nora Verrett
- Who do you know with myeloma?: I have multiple myeloma.
- When were you/they diagnosed?: I was diagnosed Nov. 16, 2017.
Re: Hello from Arizona
Hi Nora,
I was symptom free for all those years, thus, no need to begin treatment. My oncologist took a "watch and see" approach because my M-spike and IgG remained stable.
Ironically, a couple things happened prior to the back pain starting. First, I had surgery on my heel that became infected and required a PICC line with antibiotics for 3 months to clear up. Secondly, one of our horses pulled me into the stall, cracking 3 ribs. I'm not sure how, if, or why this played into my increase in M-spike after all those years of being symptom free, but that is how things played out.
Thank you for your question. I too am new to this forum, although I have "dropped in" for a while. I appreciate your prayers and will pray that you stay mentally strong and your side effects are minimal.
One thing I have learned along the way is that it's important that your healthcare team be aware of side effects. I started out thinking side effects were expected and my doctor knew they would happen, but everyone is different, and adjustments to medications can be made to lessen those effects. So, speak up!!
I was symptom free for all those years, thus, no need to begin treatment. My oncologist took a "watch and see" approach because my M-spike and IgG remained stable.
Ironically, a couple things happened prior to the back pain starting. First, I had surgery on my heel that became infected and required a PICC line with antibiotics for 3 months to clear up. Secondly, one of our horses pulled me into the stall, cracking 3 ribs. I'm not sure how, if, or why this played into my increase in M-spike after all those years of being symptom free, but that is how things played out.
Thank you for your question. I too am new to this forum, although I have "dropped in" for a while. I appreciate your prayers and will pray that you stay mentally strong and your side effects are minimal.
One thing I have learned along the way is that it's important that your healthcare team be aware of side effects. I started out thinking side effects were expected and my doctor knew they would happen, but everyone is different, and adjustments to medications can be made to lessen those effects. So, speak up!!
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GuyHasIt - Name: Guy T.
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 2008
- Age at diagnosis: 49
Re: Hello from Arizona
Nora,
Too coincidental; I was born and raised in Lake Charles. What are the chances of running across each other in this forum? Wow!
Too coincidental; I was born and raised in Lake Charles. What are the chances of running across each other in this forum? Wow!
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GuyHasIt - Name: Guy T.
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 2008
- Age at diagnosis: 49
Re: Hello from Arizona
GuyHasIt wrote:
That is kinda strange. But nice in a way. Lol. Sorry we had to meet like this.
I went Monday for my second treatment of Velcade, dexamethasone, and Xgeva (denosumab). My Revlimid is due to be delivered today. I see the doctor tomorrow. I am definitely reporting the side effects because they change from day to day. About the only thing constant is the nausea. I get Zofran (ondansetron) for that.
My journey started out strange also. I had been fatigued, achy, nauseous, fuzzy brain, most of last year. I thought it was because I was getting older. NOT. I began my second year working for the school board as a bus monitor. In August I fell twice on the bus. I had been hurting in my back before that, so I didn't pay it much attention.
I got hired on as a paraprofessional November 1, 2017, and began working with a special education teacher. Part of my job was to walk from the back of the school, where our class was, to get my students whose rooms were at the front of the school. We helped with preschool through third grade students. I made approximately 10 to 12 round trips per day.
It got harder and harder to walk and breathe. By the 15th of November, I was hurting in my chest, my ribs front and back, all the way down to the bottom of my hips. My breathing was so labored, I thought it was my asthma acting up. The next day I could not go to work, instead I went to the ER. That is when I was diagnosed with Stage 3 multiple myeloma. It had shut down my kidneys and I began dialysis the 17th.
A lot thrown at me and my husband in a few hours. I was so out of it I lost about a week. I was in the hospital for 18 days with things happening I didn't understand. It was scary.
It took me falling on the bus to bring this to light. I went to my PCP in September and he refused to do x-rays. If he had, we might have found out in September. In November. I had no choice but go to the hospital, I could barely walk or breath. My lungs were filling up because my kidneys shut down.
Thank you for reading this llllllooooonnnnngggg post, but it sure is helping to find someone to talk to that understands.
The last thing I will say for now is that I am 62 years old and it took all my life for me to get high and have hallucinations. Lol. I never did drugs, smoked pot, or drank. That is funny to me.
Have a great day, and hope all is good with you today.
Too coincidental; I was born and raised in Lake Charles. What are the chances of running across each other in this forum? Wow!
That is kinda strange. But nice in a way. Lol. Sorry we had to meet like this.
I went Monday for my second treatment of Velcade, dexamethasone, and Xgeva (denosumab). My Revlimid is due to be delivered today. I see the doctor tomorrow. I am definitely reporting the side effects because they change from day to day. About the only thing constant is the nausea. I get Zofran (ondansetron) for that.
My journey started out strange also. I had been fatigued, achy, nauseous, fuzzy brain, most of last year. I thought it was because I was getting older. NOT. I began my second year working for the school board as a bus monitor. In August I fell twice on the bus. I had been hurting in my back before that, so I didn't pay it much attention.
I got hired on as a paraprofessional November 1, 2017, and began working with a special education teacher. Part of my job was to walk from the back of the school, where our class was, to get my students whose rooms were at the front of the school. We helped with preschool through third grade students. I made approximately 10 to 12 round trips per day.
It got harder and harder to walk and breathe. By the 15th of November, I was hurting in my chest, my ribs front and back, all the way down to the bottom of my hips. My breathing was so labored, I thought it was my asthma acting up. The next day I could not go to work, instead I went to the ER. That is when I was diagnosed with Stage 3 multiple myeloma. It had shut down my kidneys and I began dialysis the 17th.
A lot thrown at me and my husband in a few hours. I was so out of it I lost about a week. I was in the hospital for 18 days with things happening I didn't understand. It was scary.
It took me falling on the bus to bring this to light. I went to my PCP in September and he refused to do x-rays. If he had, we might have found out in September. In November. I had no choice but go to the hospital, I could barely walk or breath. My lungs were filling up because my kidneys shut down.
Thank you for reading this llllllooooonnnnngggg post, but it sure is helping to find someone to talk to that understands.
The last thing I will say for now is that I am 62 years old and it took all my life for me to get high and have hallucinations. Lol. I never did drugs, smoked pot, or drank. That is funny to me.
Have a great day, and hope all is good with you today.
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mammiev - Name: Nora Verrett
- Who do you know with myeloma?: I have multiple myeloma.
- When were you/they diagnosed?: I was diagnosed Nov. 16, 2017.
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