[KitKat225]

My Introduction

by KitKat225 on Mon Jul 21, 2014 4:02 pm

I, like many others, have been reading the Beacon and Forum for quite awhile. I decided I would introduce myself today.
In 2010, I had a pathological break of my collarbone. They suspected metastatic bone cancer because I had thyroid cancer in 2005. After a CT guided biopsy of the lesion, they diagnosed a plasmasytoma. I had surgery to remove the cancer and cement the bone, followed by radiation. I also had a skeletal survey and MRI as well as extensive blood work and 24 hour urine tests. They determined this was a single plasmasytoma, but warned me it would likely recur as Multiple Myeloma.
I was seeing a hemotoligst every 3, then 6 months and repeating the MRI and skeletal surveys yearly and bloodwork. I started to show lesions on my skull and a suspected lesion on a rib near my spine. But since I showed no M-spike, my Dr. Said we would watch and wait. I switched to a Myeloma specialist who ordered more testing along with a PET scan and BMB.
Based on the results, I was diagnosed with Multiple Myeloma last November and started Velcade, Dex and Cytoxan. I responded well and was able to harvest stem cells, enough for 2 transplants in March. I elected to wait to transplant and am now on 10mg Revlimid- 3 weeks on, one week off.
Since I an nonsecretory, we repeat PET scans every 6 months and blood and urinalysis every 6 to 8 weeks. I am on monthly Zometa to strengthen my bones.
I am really glad I have a place like this forum to keep up on others with this awful disease.

[Multibilly]

Re: My Introduction

by Multibilly on Mon Jul 21, 2014 6:37 pm

KitKat,

Glad to see you are on this forum and welcome!

I find it pretty amazing that you presented with lesions and your original hematologist just told you to watch and wait. I would think that ANY hematologist would be able to realize the implications of multiple myeloma lesions from a treatment perspective and/or to look for nonsecretory disease?

I guess this is yet another example of why it pays to seek out multiple myeloma specialists.

Anyway, I'm happy things worked out for you.

Last edited by Multibilly on Mon Jul 21, 2014 9:09 pm, edited 1 time in total.

[Ellen Harris]

Re: My Introduction

by Ellen Harris on Mon Jul 21, 2014 7:23 pm

Welcome to the forum. Sorry you have to join us but glad we are here for you. Sounds like you did an extemely smart thing by finding a myeloma specialist for treatment. Your original oncologist was putting your health in danger. I hope you are feeling well. It sounds as though your treatment plan has been effective. Please keep us posted on your progress. Ellen

[Toni]

Re: My Introduction

by Toni on Mon Jul 21, 2014 10:23 pm

Welcome, KitKat. You have truly found a good forum here for valuable information and support as we try to learn about this disease and constantly evolving newer treatment approaches.

Thankfully you sought out a specialist. I cannot even imagine a doctor saying wait and see when you already have lesions. Whew. Glad you are now under the care of a skilled and knowledgeable physician.