Thanks for this great post!
Personally, I was feeling fine and working as a John Deere tech on large equipment. The year before my diagnosis, I was having some minor back pain (spine area) and a sharp pain once in a while to my skull area. I just thought it was the stress and heavy work that I was doing.
After having an accident at home on a ladder, breaking several ribs, I called our family practitioner, who said I shouldn't have broken the ribs that easily. So x-rays and labs were ordered.
My doctor called me one year ago at 7:00 pm to tell me the news. My wife was taking a catnap before starting her graveyard shift at a local hospital, so I took the call in our bathroom to not wake her. I felt sick to my stomach, worried, and really nervous. He told me that he would suggest seeing an oncologist, and he would recommend several.
I decided that was the first and last time that I would feel sick to my stomach, worried / nervous about this. I decided the next day that I was going to stay positive. I think it was harder on my wife (she went through lung cancer and a brain tumor).
My first tests read:
IgA 3619 (73-347)
IgG 568 (657- 1610)
IgM 31 (46-304)
B2Microglobulin 5.9 (0.97-2.64)
Total protein 10.3 (6.4- 8.3)
Sub type IgA kappa light chain stage 3
I also had multiple lesions.
My first treatment started in February and my lab from April indicated my IgA @ 612, and total protein 6.2. Treatment was Revlimid 25 mg on 21 days, with 7 days off, dex 40 mg once per week, 325 mg aspirin daily and Caltrate 600+D twice per day.
I had a severe rash from the Revlimid and had a change in plans to Velcade on days 1, 4, 8 & 11, with the same dex and Caltrate dose. I'm no longer taking the 325 mg aspirin. I just started Zometa.
So far, the Velcade has taken me to a new level, with no indications of gamma globulin protein spike on my SPEP and no monoclonal protein spike seen by IFE. Knock on wood, I hope it keeps working.
It's been one year since diagnosis. One year since being off work, so I will most likely start my retirement early due to my work requirements (22 years at John Deere and 18 at the previous job doing the same type of work). I guess it's time. I will be looking at something else to do at home to bring in a little cash / fun money.
Thanks for the great post. Good luck and stay positive, Castaway
Forums
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Castaway - Name: George
- Who do you know with myeloma?: just myself
- When were you/they diagnosed?: 1/24/14
- Age at diagnosis: 62
Re: Encouraging stories of long survival or remission
Tom was diagnosed in April, after months of increasingly debilitating pain. He'd had knee surgery in November, and so was sure the various problems were all part of that recovery.
He went into ER with kidney failure, 5 vertebral fractures, a hole in his ilium the size of my fist (which later fractured) and and m-spike of 5.5.
He was in a wheelchair or on crutches. We didn't know how well the pelvic fracture would heal.
He responded well and fast to Velcade / Cytoxan (cyclophosphamide) / dex, but began having breathing problems. In the testing for his transplant, they discovered that he'd had a reaction to the Cytoxan that's left him with lung scarring and only 50% capacity. The transplant was cancelled.
His pelvic fracture healed extremely well. He's in no pain at all. He stopped using crutches in September, turned the walker back in in November, and is now walking for exercise with walking sticks, but normally doesn't need them.
His monoclonal protein levels have been barely detectable since September, and he's on no maintenance although he takes 8 grams a day of curcumin with Bioperine.
The respirologist sent him to respiratory therapy, and his oxygenation is in the upper 90s. He's working on building back his strength and boosting his cardio.
Right now, we're in Maui.
Life is far better than I'd expected it would be when he first was diagnosed. I'm still doing most of the heavy lifting, but we've got a wonderful, rich life.
Lisa
He went into ER with kidney failure, 5 vertebral fractures, a hole in his ilium the size of my fist (which later fractured) and and m-spike of 5.5.
He was in a wheelchair or on crutches. We didn't know how well the pelvic fracture would heal.
He responded well and fast to Velcade / Cytoxan (cyclophosphamide) / dex, but began having breathing problems. In the testing for his transplant, they discovered that he'd had a reaction to the Cytoxan that's left him with lung scarring and only 50% capacity. The transplant was cancelled.
His pelvic fracture healed extremely well. He's in no pain at all. He stopped using crutches in September, turned the walker back in in November, and is now walking for exercise with walking sticks, but normally doesn't need them.
His monoclonal protein levels have been barely detectable since September, and he's on no maintenance although he takes 8 grams a day of curcumin with Bioperine.
The respirologist sent him to respiratory therapy, and his oxygenation is in the upper 90s. He's working on building back his strength and boosting his cardio.
Right now, we're in Maui.
Life is far better than I'd expected it would be when he first was diagnosed. I'm still doing most of the heavy lifting, but we've got a wonderful, rich life.
Lisa
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lelser
Re: Encouraging stories of long survival or remission
Thanks to all your encouraging stories, I am now very optimistic for my sister, who was diagnosed in January 2015. She had back pain since October 2014 and was confined to her room for two months. Then the doctors finally diagnosed her as stage III multiple myeloma.
We were shocked and feeling down beyond words, wondering how many months she had left to live, but now i know she will get through this and will be in complete remission like you all. She's 42 years old and going through chemotherapy once a week, which will continue for three months, after which a stem cell transplant will be performed.
She took her first chemo last week, and she's feeling nauseous all the time, causing her to take little or no food sometimes. That has weakened her a lot. We would give her coconut water and some juices and sometimes those would be her only intake for the day.
Should we be worried? Any advice would help.
We were shocked and feeling down beyond words, wondering how many months she had left to live, but now i know she will get through this and will be in complete remission like you all. She's 42 years old and going through chemotherapy once a week, which will continue for three months, after which a stem cell transplant will be performed.
She took her first chemo last week, and she's feeling nauseous all the time, causing her to take little or no food sometimes. That has weakened her a lot. We would give her coconut water and some juices and sometimes those would be her only intake for the day.
Should we be worried? Any advice would help.
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Amy Vee
Re: Encouraging stories of long survival or remission
Amy, sorry to hear about your sister's myeloma.
Is she taking her nausea medication? We had prescriptions for 2 different nausea medications. If one type didn't work, you take the other. I also made sure my husband eat before chemo,(which was Velcade and Cytoxan). And the infusion nurses gave nausea meds before they started the chemo infusion.
Because of other health issues, he already had a pretty good relationship with Ensure. This has been a life saver for him over the years. So I'd say your goal at this point is to get some nutrition in her before the next round of chemo. It can be really hard sometimes, but generally, once you can get things started, you can work thru it. If not, you need to let the oncologist know that she's not eating and drinking well.
Best wishes to you all. Keep us posted on her progress. Cindy
Is she taking her nausea medication? We had prescriptions for 2 different nausea medications. If one type didn't work, you take the other. I also made sure my husband eat before chemo,(which was Velcade and Cytoxan). And the infusion nurses gave nausea meds before they started the chemo infusion.
Because of other health issues, he already had a pretty good relationship with Ensure. This has been a life saver for him over the years. So I'd say your goal at this point is to get some nutrition in her before the next round of chemo. It can be really hard sometimes, but generally, once you can get things started, you can work thru it. If not, you need to let the oncologist know that she's not eating and drinking well.
Best wishes to you all. Keep us posted on her progress. Cindy
Re: Encouraging stories of long survival or remission
Zofran (ondansetron) works well for my daughter's nausea. She has pills but, on the chemo days, they give her IV Zofran. She has Ensure shakes with ice cream and protein powder sometimes. Mashed potatoes are also something that doesn't upset her stomach.
Re: Encouraging stories of long survival or remission
Hi,
I was diagnosed with multiple myeloma from blood tests during an annual check-up in August 2012, unfortunately just 6 months after my wife of 30 years had died at home of renal cancer at 50, so initially thought I was about to go through the same untreatable process.
Having myeloma is not pleasant, of course, but it is manageable, sometimes for many years (like Dan in an earlier post), and I can't help comparing it positively to my wife's and others' situations, where, unfortunately, there is really nowhere to go.
I've had the standard chemo treatment over 6 months, then an auto SCT last October, when I had about 6 weeks off work to recover, before returning to work full-time (am still here full-time). Two weeks ago I was told I am in full remission and am starting 4 cycles of maintenance chemo, including thalidomide, this week that should hopefully bed everything in and give me time (unknown, but hopefully years) in remission before any further treatment is needed.
We have a local myeloma support group here (about 40 of us) who get together for lunch every month, and many of the group have survived (with a good standard of life) for over 10 years - several for significantly longer.
While we are all different and respond differently to treatment, there is plenty of evidence out there to show, with a little luck, that we can hope for a reasonable quality of life for some time.
I was diagnosed with multiple myeloma from blood tests during an annual check-up in August 2012, unfortunately just 6 months after my wife of 30 years had died at home of renal cancer at 50, so initially thought I was about to go through the same untreatable process.
Having myeloma is not pleasant, of course, but it is manageable, sometimes for many years (like Dan in an earlier post), and I can't help comparing it positively to my wife's and others' situations, where, unfortunately, there is really nowhere to go.
I've had the standard chemo treatment over 6 months, then an auto SCT last October, when I had about 6 weeks off work to recover, before returning to work full-time (am still here full-time). Two weeks ago I was told I am in full remission and am starting 4 cycles of maintenance chemo, including thalidomide, this week that should hopefully bed everything in and give me time (unknown, but hopefully years) in remission before any further treatment is needed.
We have a local myeloma support group here (about 40 of us) who get together for lunch every month, and many of the group have survived (with a good standard of life) for over 10 years - several for significantly longer.
While we are all different and respond differently to treatment, there is plenty of evidence out there to show, with a little luck, that we can hope for a reasonable quality of life for some time.
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Wainui - Name: Wainui
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2013
- Age at diagnosis: 56
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