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Re: ~*~Can you please share your story~*~
Hi JBarnes. You most definitely have a great team of doctors. Some doctors don't work as quickly. I wish you the best.
Re: ~*~Can you please share your story~*~
I was tired at least 2 years prior to my diagnosis. When walking I would be breathless and winded going up and down stairs, and I walked slowly. Initially I thought it was just aging and being overweight/out of shape. I increased exercise and changed my diet and lost 15 lbs. And I was still tired. That's when I began to suspect it could be cardiac disease. So, in Aug of 2010 I decided it was time for an annual physical, as my mom had had quadruple CABG I figured I should get cardiac evaluation. When I went for the physical, all cardiac tests, EKG, Echogram, stress were normal. Yet, I was tired, and the CBC indicated low normal anemia so I asked the doctor to order a C-RP test given the familial heart disease. She declined and said all the other tests were normal and given those results she felt it was unecessary, I acquiesed to her advice. However, it bothered me the rest of 2010 and all of 2011, so I resolved that when I had my physical in 2011 I would insist on the C-RP test at my Aug 2011 annual physical.
When I went for the 2011 physical that Aug, I requested the test and she ordered it. The next day she called as there were other proteins, like B-2 microglobulin which is on the panel for the C-RP tests that I had insisted on. My doctor told me she was referring me to a hematologist. She did not know that I knew that the vast majority of hematologists are oncologists. And I inhaled deeply when I hung up the phone, since there was far more cancer than cardiac disease in my family on both sides, I was surprised but not shocked. Lots of anxiety ensued.
Sure enough, the next week I walked in the bldg with my husband that said Cancer Center over the door, and just felt my stomach roil with anxiety and fear. The doctors were shocked because I really had no symptoms, and the diagnosis was basically serendipitous. Had I not insisted on CRP test, it would not likely have been found. The oncologists ordered full body x-rays that afternoon, 24 hour urine collection, and bone marrow biopsy/aspiration for the following day. The x-rays came back and my skull was full of lesions. It looked like a lace doily I had the B in CRAB.
When the biopsy/aspiration tests came back the following day, the doctor called late Friday afternoon of Labor day weekend 2011 and told me I had multiple myeloma.
When I went for the 2011 physical that Aug, I requested the test and she ordered it. The next day she called as there were other proteins, like B-2 microglobulin which is on the panel for the C-RP tests that I had insisted on. My doctor told me she was referring me to a hematologist. She did not know that I knew that the vast majority of hematologists are oncologists. And I inhaled deeply when I hung up the phone, since there was far more cancer than cardiac disease in my family on both sides, I was surprised but not shocked. Lots of anxiety ensued.
Sure enough, the next week I walked in the bldg with my husband that said Cancer Center over the door, and just felt my stomach roil with anxiety and fear. The doctors were shocked because I really had no symptoms, and the diagnosis was basically serendipitous. Had I not insisted on CRP test, it would not likely have been found. The oncologists ordered full body x-rays that afternoon, 24 hour urine collection, and bone marrow biopsy/aspiration for the following day. The x-rays came back and my skull was full of lesions. It looked like a lace doily I had the B in CRAB.
When the biopsy/aspiration tests came back the following day, the doctor called late Friday afternoon of Labor day weekend 2011 and told me I had multiple myeloma.
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suzierose - Name: suzierose
- When were you/they diagnosed?: 2 sept 2011
Re: ~*~Can you please share your story~*~
Hi Suzierose. Thanks for sharing your story. When you were describing feeling tired all the time, it reminded me of me. I'm so exhausted all the time I can't go out there to walk for exercise. I do housecleaning and have to stop in between to take breaks because I get tired so easy. No energy. However, I have MGUS and Anemia. It was your persistence that actually got you diagnosed when you did. Although you could've been diagnosed a lot sooner if that doctor hadn't ignored you. I wish you well. Keep that persistence always. 
Re: ~*~Can you please share your story~*~
Dear Mr Coop,
congrats on your recovery. Wish you long and healthy life. My fater is 60 and is recently detected with multiple myeloma. He has similar symptoms to you except the anemia was not there, only protein in his urine. His doc has started with V-T-D treatment, only 1.5 months has passes. He has a manifestation on swollen feet and legs. The swelling is still as before, did not reduce. His albumin is very low 1.3-1.6 (3-5 being the norml range). Did you face any such swelling problems? How much time does it take to control the protein by V-T-D? Doc suggested he has to indergo autologus transplant subsequent to the chemo cycles.
Please share your experiences so that we can fight my father's disease as well.
Take care,
Anindita
coop223 wrote:
> Nope, no pain, no sickness no nothing. Felt fine. The urine tests with
> protein and the anemia plus other lab results are what convinced my general
> physician i had multiple myeloma.
congrats on your recovery. Wish you long and healthy life. My fater is 60 and is recently detected with multiple myeloma. He has similar symptoms to you except the anemia was not there, only protein in his urine. His doc has started with V-T-D treatment, only 1.5 months has passes. He has a manifestation on swollen feet and legs. The swelling is still as before, did not reduce. His albumin is very low 1.3-1.6 (3-5 being the norml range). Did you face any such swelling problems? How much time does it take to control the protein by V-T-D? Doc suggested he has to indergo autologus transplant subsequent to the chemo cycles.
Please share your experiences so that we can fight my father's disease as well.
Take care,
Anindita
coop223 wrote:
> Nope, no pain, no sickness no nothing. Felt fine. The urine tests with
> protein and the anemia plus other lab results are what convinced my general
> physician i had multiple myeloma.
Re: ~*~Can you please share your story~*~
Thank you aninita. I went through three cycles of Velcade, Revlimid and dex which took three months. I then had high dose cytoxin and after that had my stem cell transplant. From diognosis to post sct was approx 5 months. Too many things done in between the cytoxin and sct. I didn't have swelling problems, but did have neuropthy in my feet after all the drugs and transplant. I solved that by trying cymbalta which has helped my feet and taken away most of the pain. I came through the whole thing pretty well. Tell you dad to hang in there, it will get better.
Derek cooper
Derek cooper
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coop223 - Name: derek cooper
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: November 2011
- Age at diagnosis: 57
Re: ~*~Can you please share your story~*~
Dear Mr Cooper,
I have no words to thank you for your reply and encouragement. I can feel what hardship you went through.
Did you know about such low Albumin problem associated with multiple myeloma? My father does not have any other issue other than protein discharge and low albumin in serum. As a manifestation, not only pedal edema, sometimes his scrotal also become swollen.
Kindly shed some light on this, if possible.
With best regards,
Anindita
I have no words to thank you for your reply and encouragement. I can feel what hardship you went through.
Did you know about such low Albumin problem associated with multiple myeloma? My father does not have any other issue other than protein discharge and low albumin in serum. As a manifestation, not only pedal edema, sometimes his scrotal also become swollen.
Kindly shed some light on this, if possible.
With best regards,
Anindita
Re: ~*~Can you please share your story~*~
In 2004 during the middle of the winter I started having sever lower back pain ( I've had this sort of problem since I was in my late 30's) I tried every trick I knew to straighten out this problem but the hot showers & my wife machine massaging my lower back did not help , I actially lay down on an ottoman for her to work on my back and was then unable to get up -I eventially pushed myself off the ottoman and onto the floor,"breathing problems" - my wife called Kaiser & they finally suggested calling an ambulance -they came but my local kaiser was not excepting ambulances??? so I was warehoused at Providence hospital for 4 hours in their emergency room ? absolutely no medical treatment of any kind. finally got to kaiser and they realeased me with pain killers ?? I went home and proceeded to get worse ,I saw my primary care Doc & he had blood tests done and readmitted me they then did a bone marow bio and concluded that I had multiple myeloma - in the mean time they had me on Heavy Doses of MORPHINE due to back spazms that were actually pulling me over backwords ,pain levels of 10+, the morphine caused me to start seeing really weird creatures (but no pain) I was put on Thalodimide & Dex for about 10 months along with 4 months of ***MORPHINE*** really spookie stuff can't under why those druggies like that stuff I couldn't wait to get off of it. after 10 months, my Initial Oncologist a really great fellow ( died of multiple myeloma about 2 yrs into my treatment) took me off all drugs and just started monitoring me evey month /then 3 mo./ then 4 mo. which is the program I am on now , just had a blood test & visit with my current Oncologist & he says I am still stable which is outstanding considering I have had no treatment since 2004 (I am doing things at home such as taking hi levels of certain vitimines -vit "D" being one of those ) I am also using Resveratrol among other things, my thoughts are if its not harmful & might help ,why not ! - he says my condition with my cancer is really great its the rest of my body that is in disrepair,kidneys, back , hands,feet etc. N.G.
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Nipon Ginko - Name: Nipon Ginko
- Who do you know with myeloma?: ME
- When were you/they diagnosed?: 2004
- Age at diagnosis: 66
Re: ~*~Can you please share your story~*~
To me anindita it was not that much of a hardship. I just did what the doctor said and went with the flow. Not saying it was a pleasant experience but it wasn't that bad. I just accepted the fact that I have multiple myeloma and that my Dr. Would do her best to treat me. I took the treatments in stride and just let her do her thing and followed her instructions. The only hardship is that its a 300 mile round trip to USC where I'm being treated. As for the questions you have about the other stuff, I have no clue. I only ask the Dr. How I'm doing and do what she says. I'm just living my life too the best of my ability. I also have a excellent caregiver in my wife which helps a lot. I also retired this past June so I can go enjoy life while I'm still feeling good.
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coop223 - Name: derek cooper
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: November 2011
- Age at diagnosis: 57
Re: ~*~Can you please share your story~*~
One thing and one thing only: Pain in the upper left arm. My husband has extremely high pain threshold (maybe not such a good thing sometimes), so he assumed he had pulled a muscle, went to his doc after 2 weeks, did a little phys therapy. He was on a business trip, in a hotel, lifted his arm to comb his hair and heard a popping noise, took next flight home and was diagnosed the next day. He had what was described as an "impressive lesion" in his arm. Surgery to insert titanium plate was done following week. This was six and one half years ago He is still working, running his business and he is 80 years old. Each Day is a Gift.
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PrairiePal
Re: ~*~Can you please share your story~*~
I had back problems for years, but I had worked in the yard in November with my husband. I could not move in three days, so ended up in the emergency room at the military hospital. Referrals to neurological Dr. And then I fell just before Christmas. I was scheduled for a ct scan anyway because I was seeing a new Dr. He told me I had fractured my T9, tests were done and then a biopsy, was done and on valentines day I was told I had multiple myeloma. Whirlwind year and time to think, I realize I was getting more and more exhausted easily and faster. I had no desire to do things I loved to do. I still have a hard time doing, but I am a bit better since transplant. But now a new broken L2, and now more radiation and more issues to deal with, nausea,tired, have to drive 45 min to get 5 min of treatmen, the 45 min back, and then back to work.
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Mary Degenkolb - Name: Mary Degenkolb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2011
- Age at diagnosis: 54