Ten Things to Do

2. Find a good doctor.
Find a doctor that you are comfortable with, who understands Multiple Myeloma and who is prepared to treat you in a way you want. If necessary, get a second opinion if you are not happy or confident with your first choice physician.

3. Join an on-line list.
You wouldn’t be reading this if you didn’t have a computer, so use it. Join a discussion group like the ACOR (Association of On Line Cancer Resources) list at: http://www.acor.org/myeloma.html and/or the MMA list at:  http://lists.mmsupport.net/mailman/listinfo/mma Just by reading the emails on these list you will become more familiar with the terminology and treatments available for MM.

4. Learn as much as you can about MM.
Go to the IMF web page at www.myeloma.org They have a free handbook on MM; you can download it or the IMF will post you a hard copy. If you live in the US or Canada, the IMF have a hotline you can ring which will put you in touch with a staff member who can provide information and support (800) 452 CURE. Go to the MMRF home page www.multiplemyeloma.org This is another excellent site for information about MM.
 
5. Find a supportive network.
See if there is a support group close to where you live. If you have trouble, the IMF Hotline; the trained staff will try and answer all your questions and they carry lists of all the support groups. You could also call the Leukaemia and Lymphoma Society to ask for a "First Connection" volunteer; someone who has been trained to talk to (over the phone) newly diagnosed patients with any of the blood cancers.  Maybe get a counsellor.  Having people to talk with is really critical.

6. Look after yourself.
You will need to find ways of dealing with the stress that having a chronic illness can cause. Take more interest in your own well being. Eat well, keep yourself well hydrated. If you want to try vitamins, minerals, dietary supplements, by all means do; just check with your doctor first. Similarly with any alternative therapies you want to try, make sure your doctor knows what you are planning and if necessary discuss it thoroughly beforehand.  Avoid stress as much as possible; if you are spiritual, meditation and prayer often helps to reduce stress, otherwise just relax, get plenty of rest and stay calm.
 
7. Keep good records.
Begin by keeping a good filing system - with lab reports, relevant information from the internet, your medical medical history, etc. Myeloma is a disease that often moves slowly and the best way to track its progress is by keeping good records; you will have multiple doctor’s visits, blood tests, x-rays, biopsies - keep a record of them all. Have a section for relevant information you find on-line about new treatments or other information you want to share with your doctors.

8. Make sure you know what your entitlements are with your insurance company.
Check with your insurance company to be clear of what your benefits are regarding treatment, including coverage for drugs, transplant, ongoing treatment. MM can be very expensive to treat. Similarly, make sure you know what income protection you have.

9. Make a Living Will.
Nowadays everybody should have a Living Will. Make sure your family know and understand your position on this.

10. Be Positive!
The world hasn’t ended just because of your diagnosis. The advances in modern treatment methods mean that patients nowadays live for many many years, decades even with MM. Think a chronic condition rather than a fatal one. Get out and enjoy life as much as you can according to your physical capabilities. A positive attitude helps the body enormously when it comes to healing. Don’t be afraid to try something new - it could lead you to new interests or enjoyment. Above all, take pleasure in life, friends and family!

Ten things to ask your doctor.

1. What is Multiple Myeloma?
You’re completely new to this - and have probably never heard of MM. Get your doctor to explain in as much detail as possible. Be prepared to make notes and ask questions.

2. What type am I?
Multiple Myeloma is typed by the immunoglobulin expressed so you can be IgG, IgA, the two most common, IgM, IgD, IgE all much rarer. Then there is a second marker, the type of light chain being expressed - Kappa or Lambda. So your type of myeloma might be IgG Kappa (one of the more common) or IgA Lambda (not quite as common). You need to know this so that you can follow your blood and laboratory tests.

3. How much experience have YOU had treating this disease?
It is important that you find a doctor that is experienced in treating Multiple Myeloma, preferably a specialist. Treatments are changing all the time and new protocols are emerging. A general oncologist may not have kept up with the latest developments.

4. Are you able to tell me how far advanced my MM is - what stage am I?
This is very important. There is a new international staging system for myeloma and the level of disease you have at diagnosis is critical to your treatment options.

5. How do you propose to treat me - what are your recommendations?
This follows on from the previous two points. Find out what treatment options your doctor is recommending and why. What are the objectives of this treatment? Evaluate this against what you already know. If you are in doubt or confused ask for time to think it over. Go to the online lists; get a second opinion. Above all make sure you fully understand the implications of your proposed treatment programme. Ask the doctor how successful this treatment is, what are it’s side effects and what is the proposed follow-up plan.

6. Are you prepared to work with me if I research my own condition?
Sounds silly, I know, but there are still some old school doctors out there who refuse to be questioned on treatment, or have their decisions doubted. Remember, they are not gods, just as human as you are.

7. What is your opinion of alternative/complimentary treatment?
Nowadays there are many differing opinions on cancer treatment. A doctor who has a closed mind toward anything but mainstream treatment may not be working in your best interest. Somebody who is open to ideas and discussion is demonstrating an interest in YOUR condition.

8. What is your philosophy about MM treatment?
There are many treatment options available to you, but you need to know if your doctor is of the ’Hit it Hard and Hit it Early’ persuasion, or ‘Do the least Damage to Control the Disease’ mindset. A good doctor will take both viewpoints into account.

9. Can I get the best possible treatment here in Smallville?
You need an honest answer to this one. If by travelling two hours to another location you can get better treatment - you want your doctor to tell you. maybe he/she isn’t a myeloma expert, but are they prepared to work WITH a specialist in the next town/city?

10. I want a second opinion. Whom do you recommend?
You are perfectly within your rights to seek a second, third or any opinion. A good doctor will take time to find this out for you. Again, maybe your doctor is prepared to work along side a specialist.