When I heard the words cancer, incurable, osteoporosis and pancytopenia in March last year, I was pretty sad and scared. I thought there goes my bike riding. Forget about playing violin in the symphony anymore. I play principal positions in a couple of high quality SF area regional orchestras, but playing for more than 10 minutes was too painful because of spinal fractures.
Well, today I rode my bike the 5 miles to the clinic to get my Velcade shot. Not the 50 miles I could ride last summer, but a step back in the right direction. I'm not playing symphonies, but I can play for a two-hour wedding performance with my string ensembles with only a little pain and stiffness. I walk about 45 minutes a day with hills.
Popping a few pills (Revlimid 10 mg, dex 20 mg, and acyclovir) is easy, and for a kid who used to practically faint at the sight of a needle, they have now become routine.
My lambda number started at 4500 and is now at 57 after two failed rounds of Revlimid 25mg / dex 20 mg and 3.5 successful rounds of RVD (Revlimid, Velcade, dex). My UCSF doc says two more rounds of RVD to see if we can get normal numbers.
Then a new super sensitive bone marrow test that can detect as little as 1 cancer cell per million (or something like that). He was pretty excited about it. Then we'll see about SCT (stem cell transplant). I hope I won't need one, but I've read enough here to be prepared.
I wonder if there is anything I can do to help me ace the test in two months? Diet? Exercise? Attitude? Couldn't hurt! I am 60 years old. I have 3 adult kids, a husband, and a two-month old granddaughter.
I plan on being around for at least 10 more years, but really hope for 20 or even 30 ( without pain or immobility).
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7 posts
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PeggyB - Name: Peggy B
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: March 2014
- Age at diagnosis: 60
Re: It's not so bad
Love your positive vibes! That should keep you going strong!
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gardengirl - Name: gardengirl
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Nov. 2013
- Age at diagnosis: 47
Re: It's not so bad
It is very important to keep a positive mental attitude. Expect to live a long and healthy life.
I was diagnosed 7 years ago, and I feel better now than anytime in my life. At age 69, I golf 4 days a week. I have loads of energy and face life with a positive attitude.
After two stem cell transplants in 2008, I have been on Velcade / dex since then. For me, knock on wood, the meds have been working. I expect to live 20 more years and die from a cause other than multiple myeloma.
My advice to you is keep active and don't make multiple myeloma the focus of your life. Don't be afraid to make long term plans. My best wishes to you.
I was diagnosed 7 years ago, and I feel better now than anytime in my life. At age 69, I golf 4 days a week. I have loads of energy and face life with a positive attitude.
After two stem cell transplants in 2008, I have been on Velcade / dex since then. For me, knock on wood, the meds have been working. I expect to live 20 more years and die from a cause other than multiple myeloma.
My advice to you is keep active and don't make multiple myeloma the focus of your life. Don't be afraid to make long term plans. My best wishes to you.
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LarryG
Re: It's not so bad
Hello Peggy, and welcome to the Beacon Family. You are correct that diet, exercise and attitude couldn't hurt, however I have my doubts that any of that will impact the outcome of your upcoming bone marrow biopsy. Your outlook and attitude are positive, and a good diet and exercise program will keep you strong to continue the fight and tolerate the drugs. Your excellent response to RVD will have the greatest impact on your BMB.
I have learned that attitude and acceptance are the first steps in dealing with the diagnosis. You seem to have done that already. I wish you the best and hope you "ace" your BMB.
I have learned that attitude and acceptance are the first steps in dealing with the diagnosis. You seem to have done that already. I wish you the best and hope you "ace" your BMB.
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Dano - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Jan 2014
- Age at diagnosis: 65
Re: It's not so bad
Hi Peggy.
I am following a "diabetic diet" at the suggestion of my oncologist, and my numbers have been improving each month since I started.
I also started doing moderate weight lifting with a barbell a couple months ago - it has really helped me get stronger but if you have painful spinal fractures, I would not do anything that hurts.
Glad you can enjoy riding your bicycle!
I am following a "diabetic diet" at the suggestion of my oncologist, and my numbers have been improving each month since I started.
I also started doing moderate weight lifting with a barbell a couple months ago - it has really helped me get stronger but if you have painful spinal fractures, I would not do anything that hurts.
Glad you can enjoy riding your bicycle!
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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: It's not so bad
Having a good attitude and taking care of yourself is so important. A positive attitude may not necessarily increase your life span (although who is to say it won't?!), but it will make the time you do have a lot more joyous. No sense wasting it!
I, too, was afraid I had to give up everything. But my life did not change very much. I'm only taking a hiatus right now from running because I just had an SCT last month. I will be back!
I, too, was afraid I had to give up everything. But my life did not change very much. I'm only taking a hiatus right now from running because I just had an SCT last month. I will be back!
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KimT - Name: Kim Tank
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: July 2013
- Age at diagnosis: 53
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