[mowgli18]

Newly diagnosed -- have question

by mowgli18 on Sun Apr 03, 2011 8:23 am

Hi,
I am a 51 yr old woman, newly diagnosed with multiple myeloma just last week after 4 mos. with severe shortness of breath only when exerting and chest wall pain.

I am due to start chemo on April 11 and I believe I am stage III for what its worth. I did ask the docs what stage they thought I was at after the bone marrow biopsy and they said there was 85% in my blood and another count was 1100 which should have been a double-digit number. Also because of the mutiple bones lesions found on my ribs and back I would be at that stage.

I guess what I am interested in tracking is my blood work to see specifically if the chemo/medication regimen (dexamethasone/ Velcade/ Revlimid/ zometa) is effective. Does anyone out there know what I should be looking for in my blood work? I guess I will have the baseline bloodwork done just before the first chemo and I'll see a doc so this would be a good time to get knowledgeable and ask.

It is not that the docs are good but unless you prompt them they tend to let you live in oblivion. I don't want that.

thanks in advance,

Peri

[Sarah]

Re: Newly diagnosed -- have question

by Sarah on Sun Apr 03, 2011 4:14 pm

Peri: First and foremost, I'm so sorry you've become a member of this elite "club". You'll find lots of good information here, and you'll soon learn that you have friends - that you may never meet.

Having said all that; the next visit with your Oncologist - ask him to tell you which lab numbers he regularly checks. I also check my hubby's M-Spike (they don't run this every time). I look at the WBC, RBC, HGB, HCT and Platelets.

Always ask for copies of your lab results, and keep them in a binder. I also created a spreadsheet, and record the numbers, each week.

You will probably also find that you'll begin to need other drugs, that you've not had to take before multiple myeloma. I keep an updated Medication list, for my hubby, with the date the drug was prescribed, dosage amount and frequency. This list will be important, to keep other doctors as well as the hospital, informed.

Good luck!!

Sarah

[Arch395]

Re: Newly diagnosed -- have question

by Arch395 on Mon Apr 04, 2011 9:01 pm

Recommend these 2 books.
Our doctor gave us the first one and it will answer your immediate questions.
"100 questions and answers about Myeloma" By Bashey and Huston
"Multiple Myeloma The plain English handbook for patients and caregivers" by R J Heller

These will give you a good start on the basics

Good Luck
PS Advise: Don't go to the internet for all your information. Most of it will scare the hell out of you and may be old and out of date. I screen internet information to supply my wife. She concentrates on her doctor's information.

good luck!

[Dr. Edward Libby]

Re: Newly diagnosed -- have question

by Dr. Edward Libby on Tue Apr 05, 2011 1:48 am

Hello,
I generally recommend that newly diagnosed patients take advantage of the excellent information available on the internet from the Leukemia & Lymphoma Society (LLS), the Multiple Myeloma Research Foundation (MMRF) or the International Myeloma Foundation (IMF). For example, you will find many valuable informational booklets available to download at no cost from the LLS website. You might begin by downloading "The Myeloma Guide: Information for Patients and Caregivers" and "Understanding Lab and Imaging Tests" from the LLS site. These publications will have the answers to many of your questions regarding testing.
Ed Libby MD