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What to know when newly diagnosed

What to know when newly diagnosed

If you or someone you love has just learned that multiple myeloma, the diagnosis can be astonishing. You may know very little about this type (if anything) cancerSo you are likely to have a lot of questions with your doctor when you start taking the news and making decisions about your treatment.

“Most patients have never heard of it multiple myeloma“Says Krina Patel, MD, MD anderson specialist at the Anderson Cancer Center.” Everyone has heard melanoma [skin cancer]. The first thing we tell them is multiple myeloma blood cancer. “

This lack of knowledge often makes it more difficult to diagnose multiple myeloma emotionally than other cancers. “Cancer is rare and most patients have not been aware of it before the diagnosis was made,” says Urvi Shah, MD, a myeloma specialist at Memorial Sloan Kettering Cancer Center. “It simply came to our notice then anxiety and stress because you don’t know what to expect. “

It is a different type of cancer

“Patients come in and ask me, ‘What’s my stage?’ They want to know sooner or later and what’s going on, ”Shah said. “But it’s different with a lot of myeloma and blood cancers. It’s not like solid tumors, which causes confusion in patients. “

Because myeloma is a cancer of the blood, doctors don’t treat it like they do with solid breast or similar cancers. prostate cancer. There are blood cancers blood and so they are everywhere in the body. But that doesn’t necessarily mean that cancer is worse or harder to treat. In the case of multiple myeloma, Patel says, “there isn’t really a metastatic version.”

Doctors use a scenario system based on the results of blood tests and other things to find out if they are at high risk for cancer. These test results can help you and your doctor understand what to expect and how to treat myeloma well. Regardless of the stage, multiple myeloma is a permanent (chronic) condition.

“Multiple myeloma is considered an incurable and long-term problem,” Shah said. “Now with the latest therapies, we’re healing a small subset, but not the majority. We’re still telling patients it’s probably incurable. I hope that will change in the near future. We’re getting closer, but we’re not there yet.”

Progress of treatment

Although multiple myeloma has almost always been a lifelong condition, there has been a lot of progress in recent years in treating multiple myeloma. A person diagnosed with multiple myeloma will have many good treatment options.

“Sometimes, patients know it’s not curable and they have depression,” Patel said. “At the moment they don’t realize that it’s very treatable. We cannot cure the majority. But we can extend the decade for many years with acceptable life therapy. They will continue to do therapy throughout their lives, but the treatment doesn’t just prolong life. Quality [of life] it’s just as important. “

Treatment for myeloma usually involves a combination drugs. Patients who have recently been diagnosed with multiple myeloma are often present mine and tired as a result of this anemia, bone injuries or other complications of the disease. The treatment not only fights cancer, but often makes you feel better.

“Most people, when they think about it chemotherapy, think hair loss, nausea, if you sleep in bed, “Patel said. In multiple myeloma this is not the case.” Treatment is really a way to improve your quality of life. “

When people come in for the first time, Shah says, “They may have a delayed diagnosis. They may get in a wheelchair.” When treatment begins and the cancer responds as usual, the same patients often walk again.

Find a Myeloma Specialist

When you have a new diagnosis of multiple myeloma, it’s a good idea to see a specialist early, says Jason Valent, MD, a myeloma specialist at the Cleveland Clinic.

“It’s easier for someone like me because I only care for myeloma patients,” Valent said.

There have been numerous treatment options, acceptance of new drugs, and ongoing clinical trials, being a specialist in new developments helps. A community doctor can only see a few myeloma patients a year compared to hundreds more cancer center with myeloma specialists. While a doctor close to your home supervises your day care when a larger center is not near, a specialist in your team can help guide your treatment and consider all options remotely, including new treatments.

“Even if you can’t see a specialist every month, it’s a good idea to keep it in the background, especially at treatment decision points,” Patel said.

‘Marathon from’

Although myeloma is multiple, it is somewhat similar to other cancers. When there is a new one cancer diagnosis, a lot to take, learn and consider. In addition to decisions about cancer and its treatment, you will need to make personal choices about who and when you want to tell them about your diagnosis. There will also be practical considerations, including your learning insurance it will cover and what not.

“Every diagnosis of cancer is a life-changing experience,” Valent said. “The emotions that come with it can be the hardest thing to deal with.”

Ask your support team if they can meet or recommend counselors, psychologists, social workers, pain specialists, or others who can help you with various aspects of your illness and care. Faced with a new diagnosis of multiple myeloma, Shah recommends finding other things to focus on outside of cancer and treatment.

“Those who keep a job or hobby and don’t let illness define them seem to be better managed,” Shah says. “It ‘s a marathon. Those who fix and manage the disease can have a lot of anxiety stress“.

“You’re going to have a treatment for the rest of your life,” Valent said. Compared to many other cancers, “we treat myeloma in some way diabetes. You can take a pill or a shot for life, but it’s reasonable to expect to keep the disease under control, let’s hope for a long time. “

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