It's good to meet you. Multiple myeloma sure is a tough diagnosis, yet offers the chance for worthwhile quality of life. It sounds like bone pain is a major issue for you at present, along with concerns over the amount of damage to your bones and your bad back. My husband was diagnosed about 2 years ago. It's been an up and down journey, including a handful of tough times, more happy days and most are ordinary life. He remains in treatment.
How is the relationship with your doctor? What kind of pain management options has he/she presented? An open and constructive working relationship with your doctor is crucial. Multiple myeloma is complex. It is very important to have a myeloma specialist evaluate your case. If you ARE being seen by a myeloma specialist, a second opinion is a good idea, especially in light of 'performance status' does not make you a stem cell transplant candidate; you are in the intermediate risk category; and you are considering what role, if any, should treatment play in your life.
You have the light chain only form of the disease, found in 20ish % of myeloma patients at time of diagnosis. It is unlikely an M spike shows up on your blood work; the docs rely on the serum free light chain and urine tests to get an accurate read on your disease status. Myeloma specialist centers offer a broad array of services and tremendous expertise. They can advise you whether your bone lesion status requires bone stabilizing procedures and whether radiation is advisable for your pain. They can recommend a local oncologist if you are not geographically close enough to be treated at the center itself. Go to the 'Resources' heading on the top menu bar here, scroll to the bottom. There's a link to a directory of treatment center sites.
Things you can do outside of chemotherapy to manage the disease:
- Given your bad back, ask for a physical therapy prescription and a recommendation, if at all possible, to a therapist with cancer patient experience. Knowing how to do exercise and what kind to do is a helpful part of managing the disease
- Your risk of infection and pneumonia is higher - certainly higher than ONJ. Frequent hand washing, avoiding sick people, buffets, pneumonia vaccine and flu shots, etc. all help you to protect yourself outside of multiple myeloma specific chemotherapy treatment.
- Do you know which kind of symptoms (fevers, rashes, nausea, diarrhea, etc) should trigger a call to the doctor or, if significant enough, an immediate emergency room visit?
- If you haven't already done so, see your dentist re: your concerns about ONJ and to make sure he/she knows to check you for ONJ as you are taking IV biphosphonates.
- Nutrition matters. There are several threads on the forum about nutrition.
One of the Beacon's columnists discussed ONJ in this month's column. Go to the Opinion tab on the top menu bar and look for Andrew Gordon.
Have you found a local support group, ideally for multiple myeloma? Ask where to find the nearest myeloma support group if your doctor's office does not have that information. The support group is a great place to get advice from others who are in your situation, feedback on pain and symptom management and what to consider for next steps, and learn about insurance and copay assistance, and to offer support to others. Your doctor also is a good place to start for a referral to patient counseling resources in your area. The large myeloma centers often have them in house and can be a real godsend when you need to get over a hump and consider next steps.
All the best to you and yours.
Thanks so much, Philatour and JimNY, as well as everyone else responsible for the great info on this site. Very helpful. When I got the diagnosis I felt completely overwhelmed. I now have some direction in helping me get my sea legs back.