Hi everyone
I'm new here and it's great to read the posts, advice and experiences of others in a similar position. I live in Toronto and am a 59 year-old happily married empty-nester.
My story started in January 2012 with really bad back pain. I decided to go to physio (as that's what you do with back pain, isn't it?). Well, in March I twisted and felt a new pain in my hip/back/thigh/groin area. So off I went to a walk-in clinic to see a doctor. Please note, I don't visit the doctor regularly and it has to be pretty serious for me to go. The doctor was very rude and after a cursory exam, prescribed Naproxen, said I didn't need an x-ray and sent me home.
I gave up the physio and bought a cane.
Walking became more difficult so I registered with a GP 10 days later and limped into her office. She asked me what I thought about back surgery and referred me to an orthopedic specialist. Two weeks later, the specialist diagnosed spondylolisthesis after checking an x-ray report from the previous year. He also gave me a cursory exam concentrating on my back and, along with some other flippant suggestions, told me to take 6 extra-strength Tylenol that would probably rot my liver in the end.
In May, I became a virtual prisoner in my basement as I couldn't climb the 11 steps to get out. To cut a long story short, I saw 9 doctors who wouldn't help me as they all said I was suffering from sciatica. Finally I saw doctor #10 who did an EMG test on me. This was negative, but he realized that I couldn't walk, so he sent me for a hip x-ray. This showed that I had fractured my hip back in March - 4 months before. This wonderful doctor admitted me to hospital where I had total hip replacement surgery. Unfortunately, during the surgery, the doctor found tumors and subsequently I was diagnosed with Multiple Myeloma. I had never heard of this before and of course it was all such a shock.
After a course of Velcade, Dex and other meds, I had a stem cell transplant mid-February 2013. I'm finding it very difficult to have a normal life yet - fatigue seems to be my biggest problem with some good days but more bad days. My cancer doctor said that after the treatment I'd feel like I'd been hit by a bus - not that I know what that feels like- and that one day I'll wake up and feel normal. I have a positive attitude and a very supportive husband and hope that I'll feel better soon.
Thanks for letting me put my story out there.
Take care everyone
Krysia
Forums
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KrysiaR - Name: Krysia
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: July 2012
- Age at diagnosis: 58
Re: Hi everyone in multiple myeloma land!
Hearing your story makes me grateful that when I went into see my GP physician for my first appointment for some back and rib pain, he also looked at my blood work done form my surgery for a deviated septum the previous month, and saw something was not right but did not know exactly what. He ordered a ton of lab work and after ruling out diet, internal bleeding etc, had me sent to Hematology just a few days later where I was diagnosed with multiple myeloma the next week. I am sure this saved me a lot of suffering and severed bone degeneration. I feel improving recognition of multiple myeloma among front line doctors would make a significant step forward in the treatment of this disease. Unfortunately stories like yours are not uncommon.
After my SCT exercise for me was walking to the end of my block and back a few times a day and I had lost about 50 pounds from when I was diagnosed and was underweight. It was not painful but the fatigue is pretty extreme. However I was cycling in just a few months, skiing at about 4 months, hiked to Nevada falls in Yosemite at about 7 months. Hang in there and stay positive, you are through the hardest part.
After my SCT exercise for me was walking to the end of my block and back a few times a day and I had lost about 50 pounds from when I was diagnosed and was underweight. It was not painful but the fatigue is pretty extreme. However I was cycling in just a few months, skiing at about 4 months, hiked to Nevada falls in Yosemite at about 7 months. Hang in there and stay positive, you are through the hardest part.
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: Hi everyone in multiple myeloma land!
Thanks to both of you Krysia and Eric.... Krysia for not giving up on finding the right doctor...and Eric for pressing the exercise factor.
It took 2 Hematology doctors before I found out what was causing my growing anemia. The second doctor suggest a bone marrow biopsy which showed the tumors of multiple myeloma (stage 1) in Nov of 2012...working on treatments.
On one of my chemo treatment days there was a lady in the waiting room that stressed to me to do some type of physical activity every day possible...walk. This along with your reinforcement of this advice will stay with me through SMT..
Many thanks and good days wished to you both!
Andrea in AZ
It took 2 Hematology doctors before I found out what was causing my growing anemia. The second doctor suggest a bone marrow biopsy which showed the tumors of multiple myeloma (stage 1) in Nov of 2012...working on treatments.
On one of my chemo treatment days there was a lady in the waiting room that stressed to me to do some type of physical activity every day possible...walk. This along with your reinforcement of this advice will stay with me through SMT..
Many thanks and good days wished to you both!
Andrea in AZ
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Andreainaz - Name: Andreainaz
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: November 2012
- Age at diagnosis: 66
Re: Hi everyone in multiple myeloma land!
Thank you Eric and Andrea
I understand about the importance of exercise and I'm trying to do some walking around the house and a little leg exercise every day. Hopefully, the weather will be improving soon, so I can start to go outside more (no fun in minus temperatures on slippery sidewalks when you're hobbling around with a cane!)
I have good intentions, but often by the time I get dressed and put my boots on, I've exhausted myself completely. I'm finding the fatigue the most frustrating thing, but I'm sure this will pass eventually.
Good luck to both of you.
Krysia
I understand about the importance of exercise and I'm trying to do some walking around the house and a little leg exercise every day. Hopefully, the weather will be improving soon, so I can start to go outside more (no fun in minus temperatures on slippery sidewalks when you're hobbling around with a cane!)
I have good intentions, but often by the time I get dressed and put my boots on, I've exhausted myself completely. I'm finding the fatigue the most frustrating thing, but I'm sure this will pass eventually.
Good luck to both of you.
Krysia
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KrysiaR - Name: Krysia
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: July 2012
- Age at diagnosis: 58
Re: Hi everyone in multiple myeloma land!
Hi KrysiaR, Sorry to hear that you have multiple myeloma and have had medical care that didn't help to find it sooner also. Hope that your tiredness gets better, but in the meantime, are you being checked regularly for your blood levels, in order to know that the levels are improving since the transplant? I was also very exhausted after the auto transplant, and it took a few weeks to be able to walk very far again.
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Hi everyone in multiple myeloma land!
Hi Nancy
How lovely to hear from you.
I've been a few times to hospital and they've checked my blood levels. Everything seems to be going the right way and my next appointment isn't for about two months when they'll probably put me on Revlimid.
I'm very lucky that in Toronto we have some of the best cancer specialists with a lot of experience with Multiple Myeloma, but one of the most important things I've learned through this journey is that there is always someone worse off.
I'm wondering how you are doing, as I see you were the same age as myself when diagnosed. Please tell me about your ups and downs if you feel you can.
Thanks
Krysia
How lovely to hear from you.
I've been a few times to hospital and they've checked my blood levels. Everything seems to be going the right way and my next appointment isn't for about two months when they'll probably put me on Revlimid.
I'm very lucky that in Toronto we have some of the best cancer specialists with a lot of experience with Multiple Myeloma, but one of the most important things I've learned through this journey is that there is always someone worse off.
I'm wondering how you are doing, as I see you were the same age as myself when diagnosed. Please tell me about your ups and downs if you feel you can.
Thanks
Krysia
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KrysiaR - Name: Krysia
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: July 2012
- Age at diagnosis: 58
Re: Hi everyone in multiple myeloma land!
Thanks Krysia... I know that the Princess Margaret Hospital in Toronto has a special interest in myeloma and I have heard some of the oncologists from there speak at patient conferences here in Calgary also. So I hope that you are in the good hands of some of those specialists who are also world leaders in myeloma research. It seems that getting the diagnosis is often really difficult, and it would be nice if more family doctors were aware of this rare disease.
The Myeloma Beacon is kind enough to have published my story in the form of columns! So i have put my story in print here to share experiences and stimulate discussion too. Just go over to the 'comments' section and click on one of my columns there...they are all on links. Best wishes on the recovery...please keep us posted on that! Take good care of yourself if the sidewalks are icy...maybe a ski pole in one hand would help to prevent falls....Nancy S
The Myeloma Beacon is kind enough to have published my story in the form of columns! So i have put my story in print here to share experiences and stimulate discussion too. Just go over to the 'comments' section and click on one of my columns there...they are all on links. Best wishes on the recovery...please keep us posted on that! Take good care of yourself if the sidewalks are icy...maybe a ski pole in one hand would help to prevent falls....Nancy S
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Hi everyone in multiple myeloma land!
Krysia,
Like everything else with this wonderful disease, it seems recovery from SCT is unique to each person. Like you, I had stem cells infused in mid-Feb 2013. I was very fortunate that my white counts recovered in about a week and within two weeks hematocrit was climbing toward normal. I was able to comfortably walk 5 miles and even did a 5K (at a walk run pace) three weeks after stem cell transplant.
Soon thereafter... SPLAT... Lost all energy. Could barely make it the stairs in the house. Blood counts were all still good so doc ordered some respiration tests and turns out lungs were inflamed from the chemo pre transplant. I was at half my ability to transfer oxygen. Now on prednisone (steroid) to reduce swelling. Have much more energy, but will be a minute or so before anymore 5ks at any real pace.
Anyway... yes, healing process does seem incredibly tedious, doesn't it. Good luck with your recovery. I hope that by time Toronto spring arrives, you will be ready to be out and about.
Andy
Like everything else with this wonderful disease, it seems recovery from SCT is unique to each person. Like you, I had stem cells infused in mid-Feb 2013. I was very fortunate that my white counts recovered in about a week and within two weeks hematocrit was climbing toward normal. I was able to comfortably walk 5 miles and even did a 5K (at a walk run pace) three weeks after stem cell transplant.
Soon thereafter... SPLAT... Lost all energy. Could barely make it the stairs in the house. Blood counts were all still good so doc ordered some respiration tests and turns out lungs were inflamed from the chemo pre transplant. I was at half my ability to transfer oxygen. Now on prednisone (steroid) to reduce swelling. Have much more energy, but will be a minute or so before anymore 5ks at any real pace.
Anyway... yes, healing process does seem incredibly tedious, doesn't it. Good luck with your recovery. I hope that by time Toronto spring arrives, you will be ready to be out and about.
Andy
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Andy D - Name: Andy D
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2010
- Age at diagnosis: 51
Re: Hi everyone in multiple myeloma land!
Hi Andy
Thanks for the reply.
I guess we're all unique and that's why everyone's experience through this process is different, but it's also very interesting to read how people have reacted to the treatment. I have a "Myeloma Buddy" who went in for the stem cell transplant a day after me, and stayed in the hospital for over four weeks due to pneumonia and other infections, whereas I came home after two weeks.
In my case, I have some back issues and had the hip replacement surgery, so my walking and strength have not been normal for a long time. I have a lot of ground to make up, but I'm determined to be dancing on my birthday in June - last year I couldn't put one leg in front of the other due to the hip fracture.
Today the sun is shining in Toronto and I managed to get into the garden for a stroll twice and to make some phone calls. Everything is better when you can get out in the fresh air.
I'm sorry you had the loss of energy after such a promising start and I hope you're feeling better. My daughter has organized a team to participate in the 5km walk for Multiple Myeloma on June 23rd in Toronto. Although I have no aspirations to be walking that far, I will be at the finish line supporting "Krysia's Militia" (team name!) I so admire you for doing a 5km walk/run so quickly and I'm sure you'll get to do it again - just don't push yourself too much too soon.
Take care
Krysia
Thanks for the reply.
I guess we're all unique and that's why everyone's experience through this process is different, but it's also very interesting to read how people have reacted to the treatment. I have a "Myeloma Buddy" who went in for the stem cell transplant a day after me, and stayed in the hospital for over four weeks due to pneumonia and other infections, whereas I came home after two weeks.
In my case, I have some back issues and had the hip replacement surgery, so my walking and strength have not been normal for a long time. I have a lot of ground to make up, but I'm determined to be dancing on my birthday in June - last year I couldn't put one leg in front of the other due to the hip fracture.
Today the sun is shining in Toronto and I managed to get into the garden for a stroll twice and to make some phone calls. Everything is better when you can get out in the fresh air.
I'm sorry you had the loss of energy after such a promising start and I hope you're feeling better. My daughter has organized a team to participate in the 5km walk for Multiple Myeloma on June 23rd in Toronto. Although I have no aspirations to be walking that far, I will be at the finish line supporting "Krysia's Militia" (team name!) I so admire you for doing a 5km walk/run so quickly and I'm sure you'll get to do it again - just don't push yourself too much too soon.
Take care
Krysia
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KrysiaR - Name: Krysia
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: July 2012
- Age at diagnosis: 58
Re: Hi everyone in multiple myeloma land!
Hi Krysia,
In my case it was exercise that helped me in my recovery after my stem cell transplant, Nov. 2008. I was 61 at transplant, but due to being in construction, was in fairly good shape. I started with short walks, then over each day set a goal to walk a little farther. At discharge from the hospital, 12 days after transplant, I was walking 3 miles. But, like others have said, each of us handle transplants, and multiple myeloma treatments differently.
Fortunately I did not experience any bone fractures until May 2010. My iliac had a 1 3/4" x 5/8" lesion that extended into my sacroiliac. Basically a broken hip. I was given Zometa, bone strengthening medication, and after 2 treatments (30 days apart) all my pain was gone. I was given the option of radiation, but elected to not have any. Obviously I was not as disabled as you, but being the stubborn man I am, I walked around in lots of pain for 2 months before I finally ask for a MRI and CT scan, so I recommend to everyone to make sure you report any pain to your doctor and not try to tough it out. Myeloma will Not get better unless treated! Guess I had been living in a fog concerning my multiple myeloma until then.
Wishing you nothing but success through your journey! Stay positive, exercise as much as possible, stay hydrated, and know that we are all here for you!
In my case it was exercise that helped me in my recovery after my stem cell transplant, Nov. 2008. I was 61 at transplant, but due to being in construction, was in fairly good shape. I started with short walks, then over each day set a goal to walk a little farther. At discharge from the hospital, 12 days after transplant, I was walking 3 miles. But, like others have said, each of us handle transplants, and multiple myeloma treatments differently.
Fortunately I did not experience any bone fractures until May 2010. My iliac had a 1 3/4" x 5/8" lesion that extended into my sacroiliac. Basically a broken hip. I was given Zometa, bone strengthening medication, and after 2 treatments (30 days apart) all my pain was gone. I was given the option of radiation, but elected to not have any. Obviously I was not as disabled as you, but being the stubborn man I am, I walked around in lots of pain for 2 months before I finally ask for a MRI and CT scan, so I recommend to everyone to make sure you report any pain to your doctor and not try to tough it out. Myeloma will Not get better unless treated! Guess I had been living in a fog concerning my multiple myeloma until then.
Wishing you nothing but success through your journey! Stay positive, exercise as much as possible, stay hydrated, and know that we are all here for you!
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bbrown687782 - Name: Bill
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Nov. 2003
- Age at diagnosis: 56
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