I can't address the back problem, but I was diagnosed with Bence Jones in '09 at the age of 70. I had to do 5 months of dialysis to bring creatinine level of 6.? down and blood transfusions because of a 7.6 hemoglobin. I began to feel better within a month of Velcade treatments and it was uphill from there.
There is no doubt that your dad has great chance of regaining a fruitful life in spite of the multiple myeloma.
Forums
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Wayne K - Name: Wayne
- Who do you know with myeloma?: Myself, my sister who passed in '95
- When were you/they diagnosed?: 03/09
- Age at diagnosis: 70
Re: How much can you recover?
Thank you for all the updates, melizabe. It's great to hear that your father is doing better, and it's really useful for everyone hear to know how things are going with your father. We hope his health continues to improve.
Re: How much can you recover?
I wanted to provide another update on my Dad's progress for anyone interested in his story.
He had a partial response to his stem cell transplant (which was a horrible experience for him, but he thankfully did not get any secondary infections). He is now on oral maintenance chemo, which he tolerates very well. His m-spike continues to slowly decrease and is now at 0.6 g/dL.
He has to wear a brace around his back due to the fragility of his bones and uses a walking stick when hiking. He lost height due to the compression of his spine and is generally much more tired than before the myeloma. He lies down more frequently to rest his back. But, he is walking, driving, flying, riding a recumbent bike around the neighborhood, and he walked me down the aisle at my wedding.
Life is very different now, and some things are out of the question now, like skiing. But, he is able to live life again which is more than we hoped for at the very dark beginning.
Thank you again to everyone who provided support along the way!
He had a partial response to his stem cell transplant (which was a horrible experience for him, but he thankfully did not get any secondary infections). He is now on oral maintenance chemo, which he tolerates very well. His m-spike continues to slowly decrease and is now at 0.6 g/dL.
He has to wear a brace around his back due to the fragility of his bones and uses a walking stick when hiking. He lost height due to the compression of his spine and is generally much more tired than before the myeloma. He lies down more frequently to rest his back. But, he is walking, driving, flying, riding a recumbent bike around the neighborhood, and he walked me down the aisle at my wedding.
Life is very different now, and some things are out of the question now, like skiing. But, he is able to live life again which is more than we hoped for at the very dark beginning.
Thank you again to everyone who provided support along the way!
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melizabe - Name: Melizabe
- Who do you know with myeloma?: Father
- When were you/they diagnosed?: October 2013
- Age at diagnosis: 64
Re: How much can you recover?
Hi Melizabe,
Thanks a lot for the update on your father's progress. It's great to hear that he's doing so many different things and "living life" again. And wonderful to hear that he walked you down the aisle at your wedding! Congratulations to you and to your dad!
What you've described is similar to what many of us have experienced. Life is different now, but we adjust to the new normal. And we keep moving forward!
Best wishes to you and to your father. And to your new husband too!
Mike
Thanks a lot for the update on your father's progress. It's great to hear that he's doing so many different things and "living life" again. And wonderful to hear that he walked you down the aisle at your wedding! Congratulations to you and to your dad!
What you've described is similar to what many of us have experienced. Life is different now, but we adjust to the new normal. And we keep moving forward!
Best wishes to you and to your father. And to your new husband too!
Mike
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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: How much can you recover?
Melizabe,
I saw your post and wanted to see how your dad is doing?
My husband has just started treatment and now cannot get out of bed.
Melizabe wrote:
I saw your post and wanted to see how your dad is doing?
My husband has just started treatment and now cannot get out of bed.
Melizabe wrote:
Another update. My Dad is able to drive again and ride a stationary bike, walk around the block, and do so much now! He is scheduled for a stem cell transplant next month. The spine surgeon said that it would be better to wait until after the stem cell transplant to consider surgery as the bones may start to heal themselves a bit.
I have to say that the chemo therapy is rough, but it is about as close to a miracle as I have ever experienced. I know that without it I would no longer have a Dad. I can't thank the doctors, nurses, researchers and patients enough for all the work they have done to treat this disease.
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Ram511
Re: How much can you recover?
Hello Ram511,
Sorry to hear that your husband is having difficulties at the beginning of his treatment. Please make sure to inform his doctor of the problems he is having, if you haven't already.
As you may already have seen by now, Melizabe's father is doing better now. See her most recent posting in this thread from a couple of days ago (8 April).
Hello Melizabe,
I know that others already have said this, but I also want to thank you for your updates about how your father has been doing since your first posting here in the forum. They are more than just helpful; they give hope to those who, in the dark hours not long after a myeloma diagnosis, may feel there is little or no hope to be had.
Sorry to hear that your husband is having difficulties at the beginning of his treatment. Please make sure to inform his doctor of the problems he is having, if you haven't already.
As you may already have seen by now, Melizabe's father is doing better now. See her most recent posting in this thread from a couple of days ago (8 April).
Hello Melizabe,
I know that others already have said this, but I also want to thank you for your updates about how your father has been doing since your first posting here in the forum. They are more than just helpful; they give hope to those who, in the dark hours not long after a myeloma diagnosis, may feel there is little or no hope to be had.
Re: How much can you recover?
Thank you for the quick response. This site has more information on it than anything else I have found.
Best of luck to all of you.
Best of luck to all of you.
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Ram511
Re: How much can you recover?
Hi Ram511,
Sorry to hear that your husband is having problems with his treatment. Like Ian said, it's important to let his doctors know about these problems. They often have solutions that we wouldn't think of.
In answer to the original question about how much can multiple myeloma patients recover, one of the people participating in this forum, KimT, recovered enough that she was recently able to run a marathon around 7 months after her stem cell transplant!! She'd never brag about this, but I think it's an awesome accomplishment, so I'll brag for her. I hope she doesn't get too angry at me for mentioning this.
She documented her SCT experience here in the forum:
"KimT's Stem Cell Transplant (Stanford, Inpatient)", forum thread started July 28, 2014
As others have said, a lot of us recover to be almost as good as new.
Best wishes to you and your husband. Please keep us posted on how he's doing.
Mike
Sorry to hear that your husband is having problems with his treatment. Like Ian said, it's important to let his doctors know about these problems. They often have solutions that we wouldn't think of.
In answer to the original question about how much can multiple myeloma patients recover, one of the people participating in this forum, KimT, recovered enough that she was recently able to run a marathon around 7 months after her stem cell transplant!! She'd never brag about this, but I think it's an awesome accomplishment, so I'll brag for her. I hope she doesn't get too angry at me for mentioning this.
She documented her SCT experience here in the forum:
"KimT's Stem Cell Transplant (Stanford, Inpatient)", forum thread started July 28, 2014
As others have said, a lot of us recover to be almost as good as new.
Best wishes to you and your husband. Please keep us posted on how he's doing.
Mike
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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: How much can you recover?
Kim T, congratulations on running a marathon 7 months after your SCT! That is amazing! I couldn't run a marathon before my SCT 
, but I know Kim T was a marathon runner before she was diagnosed with multiple myeloma and I am so glad she is back to running.
Our bodies "are fearfully and wonderfully made" and keep trying to heal. My oncologist told me to keep my blood glucose and insulin low and steady - and I think that helps all organs.
Cathy
, but I know Kim T was a marathon runner before she was diagnosed with multiple myeloma and I am so glad she is back to running. Our bodies "are fearfully and wonderfully made" and keep trying to heal. My oncologist told me to keep my blood glucose and insulin low and steady - and I think that helps all organs.
Cathy
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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: How much can you recover?
Another update on my Dad's journey. He is now approaching two years since his stem cell transplant in April of 2014. His blood work numbers are holding steady on the oral chemo therapy and he is staying in partial remission.
He only has to wear his back brace "as needed," so that is usually when he is travelling for extra protection. He travels regularly both by car and plane. He will be going down to New Zealand next month for the first time and is very excited to see the country. He still has back pain, but his doctors have decided against a kyphoplasty or any back surgery. He is still on the Zometa. He goes on hikes with a hiking club, but has to choose hikes that do not have too much vertical climbing and sometimes has to take a shorter route. He can't run around or play on the floor with his grandchildren, but he does read with them and play board games.
Overall, it mostly feels like I have an "old" dad, and I have to remember to consider how long he can walk when planning outings, make sure there are places to rest, and not plan too much in one day. But, over time, this has become routine. He takes longer to get over colds, but he gets over them eventually.
So, overall, life goes on. Myeloma is lurking in the background for those of us around my Dad, but it is not a defining feature of every day as it was during his initial treatment.
He only has to wear his back brace "as needed," so that is usually when he is travelling for extra protection. He travels regularly both by car and plane. He will be going down to New Zealand next month for the first time and is very excited to see the country. He still has back pain, but his doctors have decided against a kyphoplasty or any back surgery. He is still on the Zometa. He goes on hikes with a hiking club, but has to choose hikes that do not have too much vertical climbing and sometimes has to take a shorter route. He can't run around or play on the floor with his grandchildren, but he does read with them and play board games.
Overall, it mostly feels like I have an "old" dad, and I have to remember to consider how long he can walk when planning outings, make sure there are places to rest, and not plan too much in one day. But, over time, this has become routine. He takes longer to get over colds, but he gets over them eventually.
So, overall, life goes on. Myeloma is lurking in the background for those of us around my Dad, but it is not a defining feature of every day as it was during his initial treatment.
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melizabe - Name: Melizabe
- Who do you know with myeloma?: Father
- When were you/they diagnosed?: October 2013
- Age at diagnosis: 64
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