How were you diagnosed with multiple ... - Myeloma America S...
How were you diagnosed with multiple myeloma? Feel free to reply to expand on your diagnosis experience.
tclementi9 VotersPlease select all that apply:
I had severe back pain and had lost weight and height, was diagnosed with anemia. The best my PCP could do was to send me to an orthopedist whose assistant, on reviewing my X-rays, prescribed a week's worth of muscle relaxants.
My diagnosis was obvious to the rheumatologist whom I sought out. Even my chiropractor had a better handle on "something going on" than did my PCP.
Once I was referred to an oncologist, he looked at those same X-rays and said, these X-rays of a 63-year-old man look like those of an 80-year-old woman.
It has taken 5 years of treatment, but I am in remission at last. I hope it's a good long time before I relapse.
The damage done to my spine is irreversible, and I take 200 mg of Oxy each day to tolerate the pain.
My recommendation is that the symptoms of Myeloma be taught to chiropractric students, as they are the final refuge of suffering, undiagnosed Myeloma patients.
The PCP did put me on steroids at one point, to his credit.
Wow! Thanks for your response! It is pretty crazy that it took all those people to figure out what was wrong but glad he did put you on steroids for some treatment/relief. Even happier that you are in remission and are doing ok! Great recommendation- my cousin is studying to be a chiropractor so I will pass that info along to her- every bit counts, right?!
Believe it or not, through a routine eye exam at the optometrists office. It took two years before it was diagnosed (had to go through routine blood tests ordered by PCP, then auto immune blood tests ordered by rheumatologist, and finally hematology blood tests and bone marrow biopsy). I think it took that long because I am smoldering (or asymptomatic). No telling how long I've been smoldering. So far, no treatment done.
That is super interesting! How are you feeling now?
Still feeling pretty good although I am a little more fatigued than last year. I chalk it up to not working out as regularly like I used to and that I may be pre menopausal (I'm 44). Just had bloodwork done and the numbers are still really high but stable, so nothing has changed which is good. My MM specialist thinks my body is trying to keep the MM in check somehow.
I was having preop labs done for surgical repair of herniated disc, the surgeon didn't want to operate because my CBC was so abnormal, but after calling my General Practitioner he agreed to do the surgery. After that I was set up to see a hematologist who diagnosed smoldering myeloma, along with a second opinion at Mayo Clinic.
I was followed closely with quarterly labs and in May 2015 became active with High Risk Myeloma. I chose the Myeloma Institute at UAMS for treatment: 5 rounds of chemo and 2 stem cell transplants over 7 1/2 months. Highly recommend UAMS!!! Had been on maintenance for 2 months with Revlimid and Ninlaro, but was having issues with chronic neutropenia and low platelets. End of March I got a stem cell boost of 4.5 million stem cells and now am on "drug holiday" for two months while those little suckers find a good home and grow.
The best news is that I'm feeling GREAT along with being in remission! Am hoping the boost does the trick and that the myeloma keeps a low profile until I go back on maintenance.
Hi Nancy! Thanks for your post and sharing your story! UAMS is great- we are actually having an event with them in July so will keep you posted; we'd love for you to attend! Congrats on your remission and we are so glad you're feeling good! What advice do you have for those who are newly diagnosed or are struggling?
My advice is to see a myeloma specialist, even if you have to travel away from home to do it. I met many people who had been treated by their local oncologist first, and after trying first one thing, then adding another drug, then another (you get the picture!) they finally came to UAMS and got treated appropriately. With a rare cancer like this you deserve to get treated by a specialist who has seen 100's of patients, not 2 or 3. Do the research on which institution is best for you and go. You won't be sorry.
I had a flu shot that the emergency room
Doctors though had gotten in my bursa on the first visit-had 9+ pain for another week on
"Vacation"-only Tylenol for pain because local
(Los Angeles-we live near San Francisco) would
not accept my insurance
Went to emergency room and found my arm had
broken off near the shoulder-got Oxycodone &
Norco for 90 days for pain-new Titanium arm-tests showed MM-radiation on tumor first-
Velcade/Dex for 5 mo-neuropathy in thighs-
fell and cracked L-4-got ecoili-DVT---started
Revlidmiidid/Dex 5 mo later-got body rash
5 mo later-started Ninlaro today Dec 14 20016
ABove story from Oct 2015-Dec 14 2016
M-Spike varied over the year but went from
1.8 to .7 in Nov-other tests also are "in the
right direction" - Dr quote-not refractory-
Going to support group tomorrow-expect
40 fellow MM's- but No 90yr olds No 80yr
olds and a few 70 yr olds-do not get much
sympathy-ha
Bought new ski equipment in Feb 2015
For sale-cheap
But fun!!!
Was complaining of back pain. After repeated MRI's and X-rays a neurologist said I need surgery. Stenosis and a fusion (2 surgeries). 4 months later the pain did not subside. Went back and radiologist noted a dark spot on one of my X rays at bottom of film. Went back in for more x rays this time of my pelvis and saw a 11cm x 5 cm hole where my acetabulum should have been. After a biopsy of of mass, concluded it was multiple myeloma. Got away from that Neurologist as fast as I could. Ended up seeking medical help in the lower 48 and got a transplant. Am still monitored from Seattle, but have found an oncologist here in Alaska that is very sharp with SCT's and MM. Its working out well now.