[DebbiC]

Diagnosed two days before Christmas, 2013

by DebbiC on Thu Oct 30, 2014 6:46 pm

Hi Everyone,

I was diagnosed with multiple myeloma on December 23, 2013, with Bence Jones, lambda light chains. This came after being diagnosed with severe osteoporosis in my late 30's. For many years I suffered from pain all over my body, including migraine headaches. In addition, I had skin rashes that itched horribly.

For the past three years, I experienced severe pain in my ribs and back. As a result, I went to multiple doctors, including two neurologists, an endocrinologist, a rheumatologist, cardiologist, 4 dermatologists, 2 chiropractors, a naturopathic doctor and a dietician. I had multiple tests: X-rays, cat scans, MRI's, blood work, biopsies, etc. Results were always normal.

I couldn't understand why I was always tired and never felt well, so I would just push myself harder and harder, thinking I had to build my endurance and strength. I went to school full time to get my master's degree, while working full time and raising a family. I worked out several times a week and was very careful to eat an excellent diet and live a healthy lifestyle.

Finally on December 23rd last year I went to a Walk-In Clinic at the urging of my physical therapist because of a huge lump in my left rib area that was very painful. I had an X-ray and the doctor saw a lesion on my arm and ordered a full body X-ray. It turned out my bones were filled with lesions and fractures. And after lab work and a bone marrow biopsy it was determined I had multiple myeloma. Although my husband and family were devastated, I was relieved to finally have an answer to years of unexplained illnesses that most doctors told me was stress.

On December 26th I contacted Dana Farber in Boston and found the best team of medical providers I could hope for. After 8 cycles of RVD I am in complete remission!

This past year was very difficult. At one point I fractured my pelvis in two places rolling over in bed. For a long time I was in a wheel chair, and there were many days I couldn't get out of bed. I experienced many side effects to all the medications I was taking and haven't been able to work. Slowly but surely, I am getting stronger everyday and I don't even need a cane to walk anymore.

I have been reading the posts on this forum for quite a while and have found it very informative. I am particularly interested in posts on alternative treatments. Personally, I believe in an integrated approach. I would love to hear from others about what has worked for them, especially in regards to managing side effects and pain, as these are my greatest challenges.

Thank you so much for being here and reading my post. I am so grateful to have a community such as this to join!

[Joe]

Re: Diagnosed two days before Christmas, 2013

by Joe on Thu Oct 30, 2014 8:33 pm

I also was given the gift of myeloma two days before xmas, December 23, 2012. I'm on a trial of panabinostat, Revlimid, and dex. Hoping it works. Good luck to you.

[DebbiC]

Re: Diagnosed two days before Christmas, 2013

by DebbiC on Thu Oct 30, 2014 9:06 pm

Hi Joe,

So you have had it for almost two years. How are you doing in terms of your bones, kidneys and overall daily functioning? What has worked for you so far?

Thanks for your reply. I wish you the best of luck with your new treatments.

Debbi

[Cindy K]

Re: Diagnosed two days before Christmas, 2013

by Cindy K on Thu Nov 20, 2014 11:03 pm

Hi, Debbi,
I am a caregiver but my husband was diagnosed in July of this year. His multiple myeloma was very aggressive and he was in pain for about 4 months before diagnosis. The similarities to your story were back and rib pain, being diagnosed by healthcare professionals that did not normally see him (ER in our case) and the relief that came from knowing (The fear came later). I wish there was a banner over the door to every med school that says "weird rib pain may mean multiple myeloma". So many myeloma patients seem to present with rib pain if they have bone disease. Instead, he had physical therapy and our insurance kept denying his PCP's request for an MRI.

I'm curious if you care to share about which specialist takes care of your bone disease. My husband had many pathological fractures that were of course discovered after diagnosis. He sees a local oncologist, an multiple myeloma specialist, an orthopedic surgeon and a neurologist. The bone disease probably has the most impact on quality of life. And, now, of course, the fatigue that goes along with treatment yet he still works and remains active with his hobbies.

I also spend hours reading the columns and forums on this site. I find it very comforting. I'm happy to hear your bones are mending.

As for alternative therapies, I'm not that far yet although I have been studying Cathy's Keto-genic diet post and I think people have alluded to other therapies in the replies. I agree that an integrated approach will probably yield the best quality of life in the long run.

Good luck to you.

Cindy