I sure am happy to find this web site. Multiple myeloma is so very complicated, and I knew nothing about it prior to November 8th. My husband received a call from his doctor just before the U.S. presidential election returns started coming in on Nov. 8th, 2016. We never watched the much awaited returns. Somehow they seemed insignificant that night, and still do.
My husband is 62 and I am 55. He has an orange-sized plasmacytoma on his lower spine which was revealed by the MRI that we had put off, thinking his back pain was from a pinched nerve. He did 10 days of radiation already, and a bone marrow biopsy. He just restarted Revlimid, Velcade, and dexamethasone, after the first attempt of just Velcade and Reclast (zoledronic acid) landed him in the intensive care unit (ICU) (probable infection was already brewing).
I look forward to gaining insights from all of you. I feel very ignorant reading the posts here, so I hope to come up to speed soon, since of the two of us, I am the one that will research and read. I spend time most every night reading on this website since I found it a few weeks ago.
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Hosanna - Name: Hosanna
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: Nov. 2016
- Age at diagnosis: 62
Re: Husband diagnosed with standard risk multiple myeloma
Welcome Hosanna.
I'm sorry you find yourself needing to come here, but you've come to the right place for information. There is a lot of information on the web about multiple myeloma, but much of it seems inaccurate and a lot of it very scary. You will find symptoms and progress are very different patient to patient, which makes generalizations very hard to make. You'll find the knowledgeable people here will give you good information.
I'm sorry you find yourself needing to come here, but you've come to the right place for information. There is a lot of information on the web about multiple myeloma, but much of it seems inaccurate and a lot of it very scary. You will find symptoms and progress are very different patient to patient, which makes generalizations very hard to make. You'll find the knowledgeable people here will give you good information.
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Mark Pouley - Name: Mark
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: April 2015
- Age at diagnosis: 53
Re: Husband diagnosed with standard risk multiple myeloma
I'm sorry you are having to go through this. But you will find this site incredibly supportive and informative. I hope your husband's treatment will go well! Keep us posted!
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countrygirl - Name: Countrygirl
- Who do you know with myeloma?: IgG MGUS
- When were you/they diagnosed?: September 2016
- Age at diagnosis: 35
Re: Husband diagnosed with standard risk multiple myeloma
Thank you Mark and Countrygirl for replying. I am very happy to have found this website, and I hope to learn much more from everyone.
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Hosanna - Name: Hosanna
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: Nov. 2016
- Age at diagnosis: 62
Re: Husband diagnosed with standard risk multiple myeloma
There are some downright experts on this forum! (I'm not one of them.)
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countrygirl - Name: Countrygirl
- Who do you know with myeloma?: IgG MGUS
- When were you/they diagnosed?: September 2016
- Age at diagnosis: 35
Re: Husband diagnosed with standard risk multiple myeloma
Hi Hosannah,
I am sorry you have had this news, I know how you feel because most of the Myeloma Beacon readers have had this experience.
My diagnosis was five years ago this week, January 2012, I had been ill since 2008 with hospitalisations. A total of nearly nine years. The phrase my hematologist heard from me was "dying with cancer", but he cut me short: "NO! Living with cancer!" A single word which puts the illness into a totally different light.
Life changes after diagnosis, I look forward to birthdays, every birthday is another victory because now I appreciate the mortality of the human body, life has become a privilege rather than a right.
I have been in a 'soft relapse' since 2015 so I have been prescribed Pomalyst , cyclophosphamide, and dexamethasone treatment since last summer (you can check out my updates about the treatment in this thread here in the forum).
How do I feel after these years? Just about the same as I did back in 2012. By this I mean there is a feeling of stability, if it were not for my frequent blood tests and consultations I would probably not even think anything was wrong ! I certainly wish I had known then what I know now! Any pain and anemia is completely under control. The only time I take a painkiller is for a headache.
My advice? Read the Myeloma Beacon for solid information and advice, follow your healthcare providers advice, if you have choices offered then research the information and ask opinions and advice of others. Alternative medicine has little to offer and can interfere with your treatment and, in my opinion, is best avoided, although it may well be useful for helping with various symptoms. However, discuss with the doctor before trying anything.
The available treatments work well for a good percentage of newly diagnosed patients, offering years of quality life by which time (we all hope and pray) the cure may turn up.
Good luck and Best Wishes, Looking forward to hearing from you again!
Victor L
I am sorry you have had this news, I know how you feel because most of the Myeloma Beacon readers have had this experience.
My diagnosis was five years ago this week, January 2012, I had been ill since 2008 with hospitalisations. A total of nearly nine years. The phrase my hematologist heard from me was "dying with cancer", but he cut me short: "NO! Living with cancer!" A single word which puts the illness into a totally different light.
Life changes after diagnosis, I look forward to birthdays, every birthday is another victory because now I appreciate the mortality of the human body, life has become a privilege rather than a right.
I have been in a 'soft relapse' since 2015 so I have been prescribed Pomalyst , cyclophosphamide, and dexamethasone treatment since last summer (you can check out my updates about the treatment in this thread here in the forum).
How do I feel after these years? Just about the same as I did back in 2012. By this I mean there is a feeling of stability, if it were not for my frequent blood tests and consultations I would probably not even think anything was wrong ! I certainly wish I had known then what I know now! Any pain and anemia is completely under control. The only time I take a painkiller is for a headache.
My advice? Read the Myeloma Beacon for solid information and advice, follow your healthcare providers advice, if you have choices offered then research the information and ask opinions and advice of others. Alternative medicine has little to offer and can interfere with your treatment and, in my opinion, is best avoided, although it may well be useful for helping with various symptoms. However, discuss with the doctor before trying anything.
The available treatments work well for a good percentage of newly diagnosed patients, offering years of quality life by which time (we all hope and pray) the cure may turn up.
Good luck and Best Wishes, Looking forward to hearing from you again!
Victor L
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Victor L - Name: Victor L
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2012
- Age at diagnosis: 58
Re: Husband diagnosed with standard risk multiple myeloma
Thank you Victor for putting "it all" into a positive light. Our lives changed the day of my husband's diagnosis, but perhaps change is not all bad, just much more busy with a lot more gratefulness for the good days.
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Hosanna - Name: Hosanna
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: Nov. 2016
- Age at diagnosis: 62
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