Possible Mm, Seeing Onc Today

Hi,

I was scheduled for unrelated surgery 7 weeks ago, it was canceled due to high WBC & platelets. Have seen 2 Drs, had many tests since then. Had high SPEP, but also some fibromyagia symptoms. I'm seeing the hemetolgist/oncologist this afternoon to see if this is MM or MGUS or something else. Have read extensively. I'm 50, my mom had lupus + lymphoma, sis has fibro.

How do you deal with all the uncertainty?

Bev 

 

It helps me to remember that uncertainty is a part of every day living.

We take our chances every time we go out, get into a car, or cross the street.  There is always some probability of success or failure, life or death.  Most of us deal with the uncertainty by focusing on the positive, while being pepared for the negative.

Cherish every day.

 

Dear Bev -- Try not to focus on the worst!  You're doing the right thing by finding out as much as you can before confronted with a diagnosis -- basically one jump up on most of us!!  Use your knowledge to ask the right questions when you see the doctor.  Be sure to take someone with you, for you probably won't hear all of what is said and having a second pair of ears really helps!  Our thoughts and prayers are with you -- there are many friends on this message board just waiting to help!!  Best wishes, Cath

 

On 11/19/2007 bever wrote:

Hi,

I was scheduled for unrelated surgery 7 weeks ago, it was canceled due to high WBC & platelets. Have seen 2 Drs, had many tests since then. Had high SPEP, but also some fibromyagia symptoms. I'm seeing the hemetolgist/oncologist this afternoon to see if this is MM or MGUS or something else. Have read extensively. I'm 50, my mom had lupus + lymphoma, sis has fibro.

How do you deal with all the uncertainty?

Bev 

 

Hi Bev:

A year and a half ago I too had surgery halted due to my WBC count, high SED rate (99), and I was referred to an oncologist for possible MM.  My father died of MM.

Now a year later and many tests later I have been diagnosed with MGUS, Polmyalgia Rheumatica, and Fibromyalgia.  Two Rhumatologist tell me I have cancer according to what they see on my test results and my oncologist should be doing a PET scan but my oncologist says I do not.  I am caught in the middle and hate it.

I have read a lot about MGUS and I think talking, sharing, and researching helps keep me from going nuts.  I am 56 and get to retire in 17 months and I am so afraid of being like my father and dying before I ever get to have a retirement.

Currently I am doing great thanks to prednisone and tramadol.  Without it my SED rate zooms and my body becomes so sore and inflamed I can barely move.

Try to be positive and just keep on moving.  I am determined this is not going to get me down.

Thanks for your reply. Dr. didn't even mention MGUS, but is working to rule out Multple Myeloma and Non Hodgkins lymphoma. Says something else is happening also to cause certain other symptoms and blood abnormalities. I'm scheduled for a bone marrow biopsy and aspiration from both hips on this Thursday. I'm hoping to know what I'm facing. I'm working to set up a 2nd opinion already to confirm whatever the 1st dr says - was referred by a friend of my daughters who is an infusion nurse at an Oncology Alliance near by. She's given rave reviews of certain Drs. Also have an acquaintence at Church who has beaten 9 reoccurrences of cancer. She, her fam and Drs were on the news when she beat #7. She has an awesome attitude.

Hi this is fiesty again.

I visited my family doctor yesterday and he has referred me for a PET scan.  He just shook his head when he heard the oncologist wouldn't recommend one, even after 3 medical doctor's (not oncologist) and the Health Sciences Center here in Oregon suggested I have one.

My SED rate is still high, my lymphoktes are not normal and my WBC is high. 

I will be searching for a new oncologist, pending the results of the PET scan.  I have found you have to be your own advocate because most doctors are too busy to spend the time on research.

;-)