[drosco]

My mother recently diagnosed

by drosco on Tue Mar 23, 2010 12:50 pm

My mother was recently diagnosed with multiple myeloma. She is a cancer survivor. She was diagnosed with ovarian cancer 20 years ago, stage 4, and survived. She is a miracle!! I am very scared and am looking for some answers. She has undergone the pet scan and other tests that her doctor requested and they have not found any lesions. Her protein is very high and the doctor feels like it will not be long before she gets these lesions. I do not have any medical background and am not sure what type of questions I should be asking the doctors. I have read some of the articles but don't understand a lot of it. Any idea where I should start. When I go and talk to the doctor I want to come prepared.

[Julie Shilane]

Re: My mother recently diagnosed

by Julie Shilane on Tue Mar 23, 2010 3:33 pm

Hi drosco, I hope your mother responds as well to her myeloma treatment as she did 20 years ago when fighting ovarian cancer. She truly is inspirational.

Hopefully, several patients or caregivers can also help out by sharing the types of questions they asked soon after diagnosis and the treatment regimens that their physicians recommended.

In the meantime, you may be interested in checking out some of the articles in our Resources section. In particular, the Treatment Overview article may be helpful. Concentrate on information for newly diagnosed patients and first-line therapy options (induction therapy). If your mother is 65 or younger, you'll want to read about stem cell transplants. Otherwise, focus on other treatment options, particularly melphalan and prednisone therapies (often in combination with thalidomide or Velcade).

Since your mother's physician is concerned about bone lesions, you may want to read about bisphosphonates, which can slow or prevent bone disease.

Best wishes to you and your mother! And please let us what other questions you have.

[kaygcromie]

Re: My mother recently diagnosed

by kaygcromie on Thu Mar 25, 2010 12:56 pm

First of all, let me say I am truly sorry that your mom has been diagnosed with this disease, she sounds like a very strong person. Please know that in the past 8 years or so the options available have increased alot, there are so many Clinical Trials going on all the time. One question I would ask is what kind of Myeloma does she have. There are different types and subtypes of Myeloma, once you know that you can do some reading on it. Once they tell you the Treatment Plan, make sure you know what numbers they will be watching and make yourself a spreadsheet and keep track of her labs each time she goes, don't forget to always ask for a copy of the labs. I found when I was going through treatment I couldn't wait to see my labs, I wanted to know if the chemo was working, I would go right home after my appointment and update my spreadsheet. It was a very positive experience for me to see my numbers dropping. Make sure before you leave the doctor's office with your prescriptions in hand, that you have gone over all the possible side-affects, I know you will get a sheet of paper with each prescription, but it is still a good idea to go over them with the doctor. Sometimes the doctor will give you useful tips on handling some of the side affects.
Tell your mom you will be her researcher, you can do all the reading and keep the spreadsheet, and she can save all her energy to fight the beast. The diagnosis of Myeloma can be very scary to say the least, believe me when I say this, she doesn't need to know every detail of this disease in the beginning, way too overwhelming.
Always have pen and paper with you and if possible accompany your mom to all of her appointments. Sometimes at the appointments I would find myself fixating on something the doctor had said and I didn't hear anything else, so my husband or sister would have written down key points or remembered most of the conversation.
I hope this helps in some way...Remember we are all here for you and your mother.

[NStewart]

Re: My mother recently diagnosed

by NStewart on Thu Mar 25, 2010 3:01 pm

In addition to the wonderful suggestions that the other posters have made, I would suggest that she have an oncologist who specializes in the treatment of Multiple Myeloma on her team. Many people are treated by a local oncologist who confers with a Myeloma specialist that they see periodically at a cancer research center. The reason for this is that the protocols for treatment are forever changing and clinical trials are always going on. It is good to have a specialist on board who is up to date with all that is going on in the Myeloma world.

Also, look for a Myeloma support group in your area. The one that I go to in Philadelphia has been a really supportive place for me. I've met people who are living full lives who have been living with Myeloma for 10+ years. This in itself is very uplifting. I also have met people who are about the same place in treatment as I am and we have been able to exchange experiences with the various treatments that each of is getting. The speakers that we have at the meetings have been wonderful. Another place that has been very helpful for me has been the local Wellness Community that has all kinds of programs for people and their caregivers who have been diagnosed with any kind of cancer. You might have a Wellness Community or a Gilda's Club near you. They both are under the same parent organization now and have support groups, exercise classes, art/music/writing classes, meditation groups, etc that are all free.

Don't let the diagnosis of Multiple Myeloma scare you. Although it is a tough diagnosis and is very different from the kinds of cancer that most people know about, it is possible to continue with a fairly normal life for a long period of time. There will be ups and downs, but the more that you talk to others who have this diagnosis the more that you will be less frightened with the diagnosis. Your mother obviously is a trooper and will manage with this disease and do what she needs to do to stay as healthy as she can for a long time.