My name is Theresa Conklin and my husband Tim was diagnosed with MM in Aug 2007 and this is his story.
Where were you born and raised?
Elmwood Park, NJ
Where do you currently live?
Fair Lawn, NJ
When were you diagnosed and how old were you?
August 2007, 2 months after my 40th birthday, Stage III, Protien 8000, 50% of plasma cells in marrow.
Did you know what MM was prior to diagnosis?
Is there anyone else your in family with MM?
No or any other cancer
What led to your diagnosis?
Lower back pain, had tumor and compression fracture on L3
How many times were you referred before actually being diagnosed?
Was diagnosed pretty quickly. Orthopaedic called our primary doc with the results of the MRI who in turn called my husband to come in immediately for blood work and went for BMB the next day and to the oncologist 2 days later.
Where have you received treatment?
Hackensack University Medical Center, Myeloma Division under the care of Dr. David Siegel.
The Valley Hospital in Ridgewood, NJ
Explain your treatment history
Aug 07 thal/dex
Sept 07 12 rounds of radiation
Nov 07 Kyphoplasty to repair fracture
Dec 07 finished last cycle of Thal/dex
March 08 auto stem cell transplant
Aug 08 auto stem cell transplant
Every 3 months IV Zometa
Aug 09 started receiving vaccinations again
No maintenance drugs and have been off all meds since just after 2nd transplant
Why did you or your doctor choose a specific treatment (For example, to have a transplant or not have a transplant, etc.)?
Given Tim's age and how well he responded on thal/dex we thought it was the best chance for remission. Originally our doc gave us the option to do an allo for the 2nd transplant but he said he thought the auto would be better and we decided that we didn't want to take the risk with an allo anyway.
What has been the side effects of the different treatments?
Surprisingly my husband has a rock iron stomach and the only side effect was heartburn and neuropathy in his feet. Even through both transplants his only complaint was heartburn. Doctors would come in and laugh when Tim said he felt fine except maybe a little tired and only complaint was heartburn and that was it. All the other patients had a long list of ailments and they could barely eat and Tim ate all his meals.
What has been the hardest thing about your MM journey?
Telling our kids. We have 2 children ages 15 and 10. At the time our son was 13 so we told him once we knew what was going on but in the simpliest of terms and did not go into detail. Our daughter was only 8 and she knows that he has something wrong with his blood and had to get it fixed.
What are the top lessons learned that you would want a newly diagnosed MM patient to know about?
Do your research and don't settle for just any doctor. We were lucky enough to find great doctors right from the start who truly cared and were there for us with any and all questions. Also don't be afraid to ask questions, make a list and bring it with you to your doctor appts.
How have you been able to stay positive and encouraged in your MM journey?
Through the support of family and friends. By reading other people's stories. My husband and I are and have always been the kind of people to joke around and we continued that through this journey.
After being diagnosed... What perspective was changed the most?
Don't sweat the little things, spend as much time with family and friends as possible, the laundry and cleaning can wait.
Did you or a parent work in a field with or were exposed to toxic chemicals prior to diagnosis?
My husband is a plumber
What MM sites or blogs had you found good information from after diagnosis?