I'm a mum from New Zealand and recently diagnosed with multiple myeloma.
I had been having problems with anaemia and hip pain (arthritis) for a few years, but nothing that was unexplained when discussing with doctor. Even lost weight by dieting, which explained symptoms. Did notice that exercise was getting more challenging and my muscle mass was disappearing!
Was fairly shocked when I found out, as I really had no idea. The myeloma was picked up during a routine xray to check increased hip pain. I have lesions in my hip, femurs, pelvis and both arms. Started on chemo within a week of diagnosis.
Had only told my partner, as we thought it would take a couple of weeks to see specialist. Hardest thing is telling people especially children and family.
Plan is for a stem cell transplant in August and see what happens then...
Would like my old life back, it was actually pretty good!
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NZMum - Name: NZMum
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: March2014
- Age at diagnosis: 49
Re: Recently diagnosed (am mother from New Zealand)
It is a lot to take in isn't it? I'm sorry that you have this disease at such a young age.
I was diagnosed in March. The testing started after anemia was discovered on a routine blood test. My doctor hoped that it was just a B12 deficiency and told me to start taking supplements and check again in a couple of weeks. I also developed really bad back pain. One night I realized I couldn't turn over in bed. The doctor thought it was a bad sprain and sent me to physical therapy. At the end of the year we needed to switch insurance companies because my husband is retiring. The last message I had from my doctor was that the B12 wasn't working, so we had to start looking for other causes.
After the holidays, I found a new doctor and had another blood test. It took 2 weeks before he took a look at it, and then sent me straight to the hematologist because now my white cells, red cells and platelets were all low. I still had back pain, so he ordered an X-ray which showed compression fractures in my spine. That led to a bone density scan which showed osteoporosis that was unusually advanced for a 59 year old. The hematologist ordered a bone marrow biopsy which confirmed the diagnosis of multiple myeloma. I had been googling all of my symptoms and kept coming up with that diagnosis myself.
The doctors kept trying to be positive and saying they didn't think that's what I had. I wasn't too surprised when they told me, and all the reading I had done helped prepare me. He put me on Revlimid 25 mg, 21 days on, 7 off, with dexamethasone 10mg once a week. I get monthly infusions of Zometa for my bones and just had a shot of Arenesp for my anemia. So far I am not having any bad side effects.
I stay active by walking with my dog twice a day. I have lambda light chain myeloma. So far my kidneys are Ok, but I do have protein in my urine. We're keeping a watch on them.
I got the final diagnosis 2 weeks before my 60th birthday, which is on April Fools day. Big joke on me. Not how I imagined turning 60. I look younger and generally feel younger. Getting this diagnosis made me feel like 20 years of my life were just robbed from me. I'm getting used to it now though, and try to take each day as it comes.
Just last summer, I was hiking and riding my bike up and down hills for 3 hours with my brother. I felt great. At the end of summer, I did notice that I got tired more easily, and that it was becoming harder to lift heavy things. I thought I was just out of shape and needed to get back to weight training.
I eat pretty healthy, never smoked, hardly ever drink. and don't drink soda. I probably ate too much sugar and not enough green vegetables. That's all changed now. I have pretty much given up sugar, bread, and dairy and eat lots of green vegetables now in an attempt to try to help my body reset itself.
i am a professional violinist, and the hardest part for me is that the fractures in my spine make it hard for me to play a 2.5 hour rehearsal without pain in my ribs and back. I am hoping that I can rebuild some muscle by working out in the pool and with light resistance bands. I haven't been riding my bike, in case I might fall, but I think I am going to ease back into it, just without clip in pedals and I won't be flying down any steep hills anymore.
I know what you mean about wanting your old life back!
I was diagnosed in March. The testing started after anemia was discovered on a routine blood test. My doctor hoped that it was just a B12 deficiency and told me to start taking supplements and check again in a couple of weeks. I also developed really bad back pain. One night I realized I couldn't turn over in bed. The doctor thought it was a bad sprain and sent me to physical therapy. At the end of the year we needed to switch insurance companies because my husband is retiring. The last message I had from my doctor was that the B12 wasn't working, so we had to start looking for other causes.
After the holidays, I found a new doctor and had another blood test. It took 2 weeks before he took a look at it, and then sent me straight to the hematologist because now my white cells, red cells and platelets were all low. I still had back pain, so he ordered an X-ray which showed compression fractures in my spine. That led to a bone density scan which showed osteoporosis that was unusually advanced for a 59 year old. The hematologist ordered a bone marrow biopsy which confirmed the diagnosis of multiple myeloma. I had been googling all of my symptoms and kept coming up with that diagnosis myself.
The doctors kept trying to be positive and saying they didn't think that's what I had. I wasn't too surprised when they told me, and all the reading I had done helped prepare me. He put me on Revlimid 25 mg, 21 days on, 7 off, with dexamethasone 10mg once a week. I get monthly infusions of Zometa for my bones and just had a shot of Arenesp for my anemia. So far I am not having any bad side effects.
I stay active by walking with my dog twice a day. I have lambda light chain myeloma. So far my kidneys are Ok, but I do have protein in my urine. We're keeping a watch on them.
I got the final diagnosis 2 weeks before my 60th birthday, which is on April Fools day. Big joke on me. Not how I imagined turning 60. I look younger and generally feel younger. Getting this diagnosis made me feel like 20 years of my life were just robbed from me. I'm getting used to it now though, and try to take each day as it comes.
Just last summer, I was hiking and riding my bike up and down hills for 3 hours with my brother. I felt great. At the end of summer, I did notice that I got tired more easily, and that it was becoming harder to lift heavy things. I thought I was just out of shape and needed to get back to weight training.
I eat pretty healthy, never smoked, hardly ever drink. and don't drink soda. I probably ate too much sugar and not enough green vegetables. That's all changed now. I have pretty much given up sugar, bread, and dairy and eat lots of green vegetables now in an attempt to try to help my body reset itself.
i am a professional violinist, and the hardest part for me is that the fractures in my spine make it hard for me to play a 2.5 hour rehearsal without pain in my ribs and back. I am hoping that I can rebuild some muscle by working out in the pool and with light resistance bands. I haven't been riding my bike, in case I might fall, but I think I am going to ease back into it, just without clip in pedals and I won't be flying down any steep hills anymore.
I know what you mean about wanting your old life back!
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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: Recently diagnosed (am mother from New Zealand)
Hi NZMum,
I was diagnosed Jan 2013, and the first few months were the hardest to deal with emotionally (so far). I found it difficult deciding who to tell and when, but it got easier. It's hard going from a strong copying person to "oh jez, I don't know how to fix this" and to all of a sudden taking a bunch of drugs.
I'm 4 months post first autologous stem cell transplant and disease is no longer measurable, and 2 weeks away from an allogeneic (donor) transplant. The periods off drugs are the best ones. Life will never be the exactly the same again, but it is good!
Good luck,
Laura
I was diagnosed Jan 2013, and the first few months were the hardest to deal with emotionally (so far). I found it difficult deciding who to tell and when, but it got easier. It's hard going from a strong copying person to "oh jez, I don't know how to fix this" and to all of a sudden taking a bunch of drugs.
I'm 4 months post first autologous stem cell transplant and disease is no longer measurable, and 2 weeks away from an allogeneic (donor) transplant. The periods off drugs are the best ones. Life will never be the exactly the same again, but it is good!
Good luck,
Laura
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LauraScot - Name: Laura
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2013
- Age at diagnosis: 47
Re: Recently diagnosed (am mother from New Zealand)
Thanks for your replies!
Have my first visit with specialist tomorrow that should give us some idea of how levels are coming down since starting chemo. Actually feel great at the moment and frustrated that I am unable to exercise due to risk of path fracture to pelvis. Bought some hand weights last week and got to work on arms. Gotta be better than nothing! Had changed to gluten dairy free diet 6 months ago and have now become sugar free. Hasn't been as hard as I thought it would be, but watching weight as lost 10kg [22 pounds] so far.
Really missing work as off until at least December due to no light duties as a nurse. At least I am getting to spend extra time with kids each day.
Have my first visit with specialist tomorrow that should give us some idea of how levels are coming down since starting chemo. Actually feel great at the moment and frustrated that I am unable to exercise due to risk of path fracture to pelvis. Bought some hand weights last week and got to work on arms. Gotta be better than nothing! Had changed to gluten dairy free diet 6 months ago and have now become sugar free. Hasn't been as hard as I thought it would be, but watching weight as lost 10kg [22 pounds] so far.
Really missing work as off until at least December due to no light duties as a nurse. At least I am getting to spend extra time with kids each day.
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NZMum - Name: NZMum
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: March2014
- Age at diagnosis: 49
Re: Recently diagnosed (am mother from New Zealand)
NZ mum I am sorry to hijack your spot. But I have a question for Laura Scot.
Why are you getting an allo transplant when you said the disease is not measurable after an auto transplant?
I am 1 month post auto transplant myself and have not been given any results yet as to how successful or not my BMT has been. I am just curious as to the logic behind doing both.
Also how did you feel after first transplant? Recovery time etc.
Yours Vicki
Why are you getting an allo transplant when you said the disease is not measurable after an auto transplant?
I am 1 month post auto transplant myself and have not been given any results yet as to how successful or not my BMT has been. I am just curious as to the logic behind doing both.
Also how did you feel after first transplant? Recovery time etc.
Yours Vicki
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vicstir - Name: Vic
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: October 2013
- Age at diagnosis: 39
Re: Recently diagnosed (am mother from New Zealand)
Hi Vicki,
I decided to do allo (as part of a clinical trial) due to it's potential to give long term remission and the possibility of cure. I am in my 40's so relapse would happen for me post autoSCT. Data suggests that allo is effective for younger patients and it's most effective done up front in first CR.
I recovered well from first auto, slow process, but I got a good level of fitness back after a couple of months and no nausea or other issues.
I'm D+10 post allo at home and so far doing well. Early days for allo though.
Laura
I decided to do allo (as part of a clinical trial) due to it's potential to give long term remission and the possibility of cure. I am in my 40's so relapse would happen for me post autoSCT. Data suggests that allo is effective for younger patients and it's most effective done up front in first CR.
I recovered well from first auto, slow process, but I got a good level of fitness back after a couple of months and no nausea or other issues.
I'm D+10 post allo at home and so far doing well. Early days for allo though.
Laura
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LauraScot - Name: Laura
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2013
- Age at diagnosis: 47
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