Hi,
I was diagnosed on my 39th birthday about a month and a half ago. Up until then, I've been a hardworking guy, somewhat prideful of the fact of having a youthful energy and appearance of being ten years younger. This summer, I noticed a growing lack of energy and a slowing recovery period from injuries. I rarely visit the doctor, so it basically took a near medical emergency to get checked out.
It started with lower back pain that I initially attributed to a recent workout at the gym, but the pain only grew more bothersome. We have a friend of the family that was a chiropractor, and after a couple adjustments, it not only didn't get better, it got far worse. Pretty soon -- over a month period -- I was in constant misery, losing tolerance of being able to stand for very long. My family and co-workers were extremely concerned. Yet I was at least trying to hang on until my newly signed-up employer health insurance plan kicked in.
July 23rd I had an event where I had been doing something very light and menial at work that gave me an intense pain in my back and caused my right flank to seize up. Urgent care at the hospital released me with very little answers, but noted a slight elevation in creatinine, like a 1.8. Following up with my new general practitioner, who could make no sense of my complaints, I was released to limited duty at work after a two week absence. Doing just paperwork and stuff. Still, concerns were vocalized about my viable career future, as I obviously wasn't showing much improvement, and on more physical days, I just couldn't perform.
My doctor had insisted on following up on the elevated kidney numbers, so it was on the last day I worked that I got my blood drawn. That last day, I was a wreck. Eyes bloodshot, back and spine in massive pain. It took everything I had to fight to stay on task and run the shift. I went to bed wondering how the heck was I going to do it again? The next day, my doctor called asking how I felt. I recall saying, "Not so good." She said my creatinine had jumped up in less than a month to 5. She said I needed to go in the hospital immediately; my kidneys were failing.
The urgent care staff seemed taken aback my my GP's frank remarks about "kidney failure" but after testing my blood again ... it had already jumped to 6. Yet ultrasound showed nothing acute, but after conversing with my wife, who seemed a bit less in denial about things as I was, the hospitalist ordered tons of x-ray imaging, showing a skeleton full of lesions. Most notable to me was my skull that looked like the terrain of a golf ball. My T-11 vertebrae was crushed and I rib fractures and whatnot. I couldn't believe I worked for weeks enduring all of that with almost no pain management. So yeah, it really took a lot to shake me from my denial about the seriousness of it all.
In short, my kidneys are now perfectly normal (thank God) and I just started my third cycle of chemo (doc wants to shoot for six) in accordance to standard of care with Seattle Cancer Care Alliance. I'm not entirely up to speed with everything, but all I know is that I am responding well to treatment, and am going to consult in Seattle for a autologous procedure next week. I know I feel better than I have in the past and chemo treatments haven't been laying me out. Good days and bad days.
Still, I miss just being able to go and work is what pretty much all I have known to do. So it had taken a lot for to to relax. Trying to take it one day at a time and stay positive!
Forums
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StandingTall - Who do you know with myeloma?: Me! yay!!
- When were you/they diagnosed?: Sept. 2013
- Age at diagnosis: 39
Re: My multiple myeloma curveball
I am so sorry for your ordeal but I want to thank you for sharing your experience with the rest of us. Your diagnosis makes you a member of a club that nobody really wants to join but I want you to know that there are a lot of us out here pulling for you. My son is also a member of the club and I pray everyday that an ultimate cure will be found. I think you will find this website to be really informative and supportive. It sounds like your treatments are bringing relief and improvement and that's great. Hang in there and know that you are not alone.
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sandy
Re: My multiple myeloma curveball
Thank you for sharing this. . . Myeloma is such an insidious disease! You confronted some of the worst of the beast on your first time out! Keep on learning and working with the docs. Remember that ultimately you are in control and should contribute to decisions. Thankfully you are doing so much better!
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NancyStLou - Name: NancyStLou
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: multiple myeloma 1/2012; SMM 5/2005; MGUS 10/2002;
- Age at diagnosis: 47
Re: My multiple myeloma curveball
My creatinine level was what sent me to the hospital in the beginning. That was 4 1/2 years ago and as far as physical recovery goes I felt pretty good after my initial treatment and separation from dialysis. I didn't have the bone damage you have had however so I can't relate my experience to that. I did setback physically quite a bit from The SCT, but I was 71 at the time.
I had already lost some physical ability from lung surgery due to lung cancer, but I feel I returned to my normal after recovering from the transplant.
Don't give up and stay positive, the outcome is not set in stone.
I had already lost some physical ability from lung surgery due to lung cancer, but I feel I returned to my normal after recovering from the transplant.
Don't give up and stay positive, the outcome is not set in stone.
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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: My multiple myeloma curveball
Thanks for the welcome!! Yeah Nancy, I must admit that I am not on top of things as much as I should be in terms of my treatment. I guess I feel like I have nothing to do but trust my doctors (who all have been great by the way) who all seem to report improvement with me across the board. No bad experiences as of yet which I am extremely thankful for, but in the long run I suppose I can't expect that nothing will ever fall in the cracks or go wrong. I am lucky to live in a community with some very good doctors and a terrific cancer center that is a mere eight minutes from home. I admit I am nervous about stem cell treatment in Seattle and being away from home for a long time ... that and the fact that I have been avoiding getting a port which I know is going to happen soon. Ahhhh!
Wayne K - Yeah the bone deterioration is not enjoyable. I would be at work or at home doing normal activity and then suffer fractures, which at the time was inexplicable, so I just toughed it out. I didn't earn any medals. It seemed like I was falling apart all of a sudden, and it was hard for me not to laugh about it, it seemed so comical.
At least I am mobile again (after weeks of being bedridden and struggling with a walker), as I can walk around with ease for a considerable time before spine will complain. Definitely been a decrease in cognitive function, but not sure if it is related to chemo or pain meds, but it sucks not being sharp or as witty as I am accustomed.
Sandy, I have to be honest, I don't think I have even heard of multiple myeloma before my diagnosis, but here I am, open to a whole new universe! Best wishes to your son.
Wayne K - Yeah the bone deterioration is not enjoyable. I would be at work or at home doing normal activity and then suffer fractures, which at the time was inexplicable, so I just toughed it out. I didn't earn any medals. It seemed like I was falling apart all of a sudden, and it was hard for me not to laugh about it, it seemed so comical.
At least I am mobile again (after weeks of being bedridden and struggling with a walker), as I can walk around with ease for a considerable time before spine will complain. Definitely been a decrease in cognitive function, but not sure if it is related to chemo or pain meds, but it sucks not being sharp or as witty as I am accustomed.
Sandy, I have to be honest, I don't think I have even heard of multiple myeloma before my diagnosis, but here I am, open to a whole new universe! Best wishes to your son.
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StandingTall - Who do you know with myeloma?: Me! yay!!
- When were you/they diagnosed?: Sept. 2013
- Age at diagnosis: 39
Re: My multiple myeloma curveball
Unfortunately your experience with how you came about discovering you had myeloma is not that uncommon. It seems to be really difficult for those doctors who are not hematologist-oncologists to recognize the signs of myeloma in a patient and many have never had a patient with myeloma before. I think it only took my oncologist about 30 seconds after looking at my labs to determine I had myeloma. I read somewhere that on average it takes 6 months and three visits to their general doctor before a diagnosis of myeloma is made, and in that time a lot of damage is often being done.
Lucky for me when I went into my GP for back pain and to ask questions about why CBC test results from a surgery I had were a bit off, he was not able to determine what it was I had from the battery of tests he ran himself but know enough to send me to oncology that week. He did not just give me pain killers and have me follow up three months later if I was still having back pain, which is not uncommon.
I have heard many stories of people going into the ER in as bad as shape as you were. I have heard several accounts of how X-rays in the ER or Urgent Care are often the first tip off to myeloma for many people. That was nearly my case as well as I went in to the ER three days after my first bone marrow biopsy to test for myeloma with kidney failure. Knowing I had myeloma helped he ER staff get right to treating the problem and admitting me to the hospital for a week stay.
I wish the best for you and I think you will find this forum a good source of information of what may be ahead of you in your fight against myeloma.
Lucky for me when I went into my GP for back pain and to ask questions about why CBC test results from a surgery I had were a bit off, he was not able to determine what it was I had from the battery of tests he ran himself but know enough to send me to oncology that week. He did not just give me pain killers and have me follow up three months later if I was still having back pain, which is not uncommon.
I have heard many stories of people going into the ER in as bad as shape as you were. I have heard several accounts of how X-rays in the ER or Urgent Care are often the first tip off to myeloma for many people. That was nearly my case as well as I went in to the ER three days after my first bone marrow biopsy to test for myeloma with kidney failure. Knowing I had myeloma helped he ER staff get right to treating the problem and admitting me to the hospital for a week stay.
I wish the best for you and I think you will find this forum a good source of information of what may be ahead of you in your fight against myeloma.
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: My multiple myeloma curveball
My heart goes out to you. I believe it will give you hope to hear about all of the other people who have been where you are now, and who today are doing so well.
My husband was ill for a full two years before he finally and abruptly was diagnosed with multiple myeloma exactly a year ago. During those two years he had recurring lower back pain and rib pain and rib fractures, while doctors insisted that it was just muscular pain or bad luck and that nothing was wrong with him and that he just needed to be patient. During those two years our children were just babies, and he couldn't lift them or bend down and assist them with shoes or clothes or play with them without tremendous pain. When he was laying on the sofa or in the bed I had to keep the children away from him because it hurt so much when they leaned into him or jumped around and accidentally bumped into him.
A week after his diagnosis he was hospitalized because he was in so much pain, and his spine had collapsed. It was a shocking experience.
I read about multiple myeloma on the Internet and the first information I found was just frightening. I thought I was going to lose him in a matter of a year or two. But then induction therapy started very soon after the diagnosis, and the pain in my husband's ribs subsided very quickly. The autologous stem cell transplant was an ordeal for sure, but after a few weeks he was on his feet again and started working out and got great advice on how to keep the pain in the lower back at bay. It was amazing to see how quickly his muscles came back in a matter of weeks.
Now, one year after the diagnosis, he is in remission and is doing really well. We are a normal family now, with a father that can lift and play with his children, participate in housework, go hiking and what not. Of course, we don't know how long this period of remission will last. But having this opportunity to enjoy life together again after having scraped bottom, is a gift. It is impossible not to be happy.
You too will get there. Stay focused on that. Good luck!
My husband was ill for a full two years before he finally and abruptly was diagnosed with multiple myeloma exactly a year ago. During those two years he had recurring lower back pain and rib pain and rib fractures, while doctors insisted that it was just muscular pain or bad luck and that nothing was wrong with him and that he just needed to be patient. During those two years our children were just babies, and he couldn't lift them or bend down and assist them with shoes or clothes or play with them without tremendous pain. When he was laying on the sofa or in the bed I had to keep the children away from him because it hurt so much when they leaned into him or jumped around and accidentally bumped into him.
A week after his diagnosis he was hospitalized because he was in so much pain, and his spine had collapsed. It was a shocking experience.
I read about multiple myeloma on the Internet and the first information I found was just frightening. I thought I was going to lose him in a matter of a year or two. But then induction therapy started very soon after the diagnosis, and the pain in my husband's ribs subsided very quickly. The autologous stem cell transplant was an ordeal for sure, but after a few weeks he was on his feet again and started working out and got great advice on how to keep the pain in the lower back at bay. It was amazing to see how quickly his muscles came back in a matter of weeks.
Now, one year after the diagnosis, he is in remission and is doing really well. We are a normal family now, with a father that can lift and play with his children, participate in housework, go hiking and what not. Of course, we don't know how long this period of remission will last. But having this opportunity to enjoy life together again after having scraped bottom, is a gift. It is impossible not to be happy.
You too will get there. Stay focused on that. Good luck!
Re: My multiple myeloma curveball
Eric - Yeah I was in pretty bad shape when I got diagnosed. Even now it is hard to appreciate what a miserable state I had reached. But all I have to recall is the weeks where I couldn't move an inch without my back seizing up in horrific pain. So I can only be grateful for the gains that I made.
Olso, your husband's story is encouraging, as I want to be able to live normally again (whatever that means, now). I am sure it was heartbreaking for the season he was unable to interact with the kids. Thank you for sharing that!
Olso, your husband's story is encouraging, as I want to be able to live normally again (whatever that means, now). I am sure it was heartbreaking for the season he was unable to interact with the kids. Thank you for sharing that!
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StandingTall - Who do you know with myeloma?: Me! yay!!
- When were you/they diagnosed?: Sept. 2013
- Age at diagnosis: 39
Re: My multiple myeloma curveball
Hi StandingTall,
Sorry to hear that you have joined the club and on your birthday too. Its a pity you can't ask for a refund on that present
. This website is a fantastic resource, it is helpful with so many contributors sharing their different experiences with this disease. So although myeloma is such a diverse disease there usually is someone who has experienced similar symptoms.
I was diagnosed when my GP ordered a CT scan of my spine for a suspected prolapsed disc. I dont think I will ever forget seeing the image of all those holes and the fracture (no wonder I had been in pain). I was put in hospital the next day and treatment started (this included Zometa infusions) ........ The thing is I felt so much better after treatment, I felt I could do lots of things that I was used to doing. Gave myself two more fractures - one trying to do a pilates move (I had been very active prior to myeloma) and the other digging in the potato patch. It may be frustrating as you work out what you can and can not do but take care of your back.
All the best,
Libby
Sorry to hear that you have joined the club and on your birthday too. Its a pity you can't ask for a refund on that present
. This website is a fantastic resource, it is helpful with so many contributors sharing their different experiences with this disease. So although myeloma is such a diverse disease there usually is someone who has experienced similar symptoms. I was diagnosed when my GP ordered a CT scan of my spine for a suspected prolapsed disc. I dont think I will ever forget seeing the image of all those holes and the fracture (no wonder I had been in pain). I was put in hospital the next day and treatment started (this included Zometa infusions) ........ The thing is I felt so much better after treatment, I felt I could do lots of things that I was used to doing. Gave myself two more fractures - one trying to do a pilates move (I had been very active prior to myeloma) and the other digging in the potato patch. It may be frustrating as you work out what you can and can not do but take care of your back.
All the best,
Libby
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LibbyC - Name: LibbyC
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2009
- Age at diagnosis: 43
Re: My multiple myeloma curveball
Standing Tall,
I can tell that despite your situation, you are maintaining a positive outlook and am glad that you are responding well to treatment.
My diagnosis went much like yours, except that even my hematologist failed to recognize the symptoms of myeloma until I had a spinal compression fracture two years ago. Before that it was gnawing back and hip pain. One doctor even laughed at me when I told her that I thought I had cracked a rib turning over in bed. When the bone survey was completed, it indicated 5 rib fractures and numerous bone lesions. The bone pain is the worst part of myeloma for me. After tandem stem cell transplants, I just found out this week that I'm finally in remission!
Wishing you all the best. God works in the good times and the bad times of our lives and holds our hand when the path gets rough.
Debbie
I can tell that despite your situation, you are maintaining a positive outlook and am glad that you are responding well to treatment.
My diagnosis went much like yours, except that even my hematologist failed to recognize the symptoms of myeloma until I had a spinal compression fracture two years ago. Before that it was gnawing back and hip pain. One doctor even laughed at me when I told her that I thought I had cracked a rib turning over in bed. When the bone survey was completed, it indicated 5 rib fractures and numerous bone lesions. The bone pain is the worst part of myeloma for me. After tandem stem cell transplants, I just found out this week that I'm finally in remission!
Wishing you all the best. God works in the good times and the bad times of our lives and holds our hand when the path gets rough.
Debbie
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DebitCPA
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