What I wish I knew about Multiple Myeloma treatments 25 years later...

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Your Diagnosis of Multiple Myeloma- A How-To Guide

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“If the doctor ends up making a diagnosis (of MM) in the appointment and you don’t understand what it is or what it means, feel free to ask additional questions…”

The NYT article linked and excerpted below is about a medical diagnosis in general. I am using it to discuss what people should do when diagnosed with my cancer, multiple myeloma (MM).

A diagnosis of multiple myeloma (MM) is one of the greatest challenges you will ever face in your life. While all your appointments with your oncologist are important, your first appointments are the most relevant to your understanding of your multiple myeloma, your prognosis, your therapy plan and your life going forward.

Ask questions. If you are reluctant to speak up to your oncologist, bring a caregiver with you to your first appoitments.

Get a second opinion. The issue may not be myeloma yes or no, the issue may be how aggressively to treat your diagnosis.

Pre-habilitate. Take an active role in your MM care. Studies show that pre-habilitation, getting in shape for your MM treatment will

  1. Help you weather the toxicity of chemo or radiation better
  2. Respond better to your therapies
  3. Heal faster from your chemo/radiation

Diet, exercise, nutritional supplementation, all make a difference.

Have you been diagnosed with cancer? What type? What stage? What symptoms are you experiencing? Scroll down the page, post a question or comment and I will reply to you ASAP.

Thank you,

David Emerson

  • Cancer Survivor
  • Cancer Coach
  • Director PeopleBeatingCancer

Recommended Reading:


Seeing a Medical Professional

Being a patient is stressful. These strategies will keep your mind clearer when you are dealing with a medical diagnosis…

PREPARE FOR YOUR APPOINTMENT

To ensure you have the best possible experience with your doctor, it’s best to come prepared…

ASK QUESTIONS

We’re taught to listen to what the doctor says, and while in most cases that’s a good idea, in order to be our own advocates, we also have to speak up and ask questions. Remember: There is no such thing as a stupid question. If something comes up that you hadn’t considered, ask about it. If you don’t understand something, say so. This includes having the doctor explain any complex medical terminology.

But direct your questions appropriately.

  • Questions about scheduling appointments? Ask the front desk.
  • Getting ready for a hospital stay? Ask the nurse (not the doctor) about what clothes to bring.
  • Have a specific medical questions about your diagnosis or treatment? Ask your doctor. Chances are you’ll come up with additional questions as soon as you leave the appointment. Ask the doctor or nurse for the best way to contact them with these follow-up queries…

KEEP TRACK OF THE ANSWERS

When you’re in the doctor’s office because of a health problem, you may feel anxious or rushed — either way, it’s helpful to record the answers to the questions you ask your medical team, as well as the other information they give you. Bring paper to your appointment (or if you forget it or a pen, just ask the receptionist) to take notes of everything that is said during the appointment. If you’d feel more comfortable having an audio recording of the appointment, ask your doctor if you have their consent to record the office visit. There’s no need to purchase any equipment: most smartphones come with a free recording app, like Voice Memo. Depending on the nature of the appointment, it may be helpful to have a family member, friend or partner either go with you for a second set of ears, or call in on speakerphone so they can hear and take notes on everything being discussed…

MAKE SURE YOU ARE HEARD

A doctor’s appointment should feel like a conversation, and it’s important for both you and your physician that your voice is heard. Asking questions is one thing, but it’s also necessary to speak up when you don’t think you’re being heard or understood. There is no rule saying that the doctor’s opinion is the be-all and end-all. They are capable of making mistakes or, in some cases, simply ignoring patients and their concerns, which can be especially true when the patients are women or people of color. Therefore, it’s very important that you leave the appointment believing that your doctor is taking your pain seriously.

Be as specific about your symptoms as possible. The more information you’re able to provide to your medical team, the better your chances are of getting an accurate diagnosis. If the doctor is still being dismissive, calmly and respectfully express your concerns, and let them know that you don’t feel as though you’re being fully heard. If this doesn’t work, it may be time to change doctors or get a second opinion

MAKE SURE YOU UNDERSTAND

If the doctor ends up making a diagnosis in the appointment and you don’t understand what it is or what it means, feel free to ask additional questions. Don’t hesitate to ask the doctor to refrain from using medical jargon when explaining what is happening to you…

WHEN YOU NEED (OR WANT) A SECOND OPINION

Some medical conditions have routine, straightforward treatment procedures. Other times, there are multiple ways to treat a patient, and it can be difficult to determine which option would be most beneficial. That may mean it’s time to get a second opinion. Moreover, if your doctor recommends a procedure that is invasive or your diagnosis is severe, that’s another good time to get a second opinion…”

 

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