Dad Of Three, 68, Dismissed Rib & Back Pain As ‘Pulled Muscle,’ But It Was Blood Cancer: ‘I’m On The Path To Living With Myeloma For a Very Long Time’

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Tottoh said he had suffered from pain in his ribs and back for approximately 18 months prior to being diagnosed with blood cancer, something discovered after his pain worsened.

He explained, “It progressed over months to being quite debilitating. It got to a point where it started having a real impact on my life.”

It wasn’t until he underwent blood testing that he received his myeloma in 2021, which he describes as a “complete shock.”

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Tottoh also noted, “When I was diagnosed, I had holey bones in my ribs, thighs, spine and skull.”

After admitting he feared the worst as his dad and two of his brothers all passed away from cancer, Tottoh said he has been in remission since November 2022 after undergoing radiotherapy, chemotherapy, and a stem cell transplant.

As Tottoh shares his story to spread awareness for the disease and the importance of seeking a doctor’s advice when something feels wrong, he credits his family and friends for helping him through this arduous journey.

He advises anyone hearing his story, “Nobody knows your body better than you, so own it.”

Multiple Myeloma: What Precedes the Full-Blown Cancer?

Tottoh, who remains on maintenance therapy to prevent cancer recurrence, explained, “It takes a small army to get you through this ordeal. The most important thing now is having people in your corner, people who care, people who lift you up when you’re down.

“My family and closest friends have done that.”

He concluded, “My mindset is really positive. I will see my grandson go to university and get married – if that’s what he wants to do. I will see my kids fulfill their dreams.

“Right now, I’m in an amazing place and I’m on the path to living with myeloma for a very long time.”

Understanding Multiple Myeloma

Multiple myeloma is a rare and incurable type of blood cancer. When you have this cancer, white blood cells called plasma cells (the cells that make antibodies to fight infections) in your bone marrow grow out of proportion to healthy cells. Those abnormal cells leave less room for the healthy blood cells your body needs to fight infections. They can also spread to other parts of your body and cause problems with organs like your kidneys.

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Sometimes, doctors find multiple myeloma while doing a blood test to look for another condition or when trying to find out what’s causing a patient’s unexplained symptoms.

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Doctors use blood and urine tests and imaging tests, such as X-rays or MRIs, to help diagnose multiple myeloma and to guide treatment options. Ultimately, a bone marrow biopsy will confirm the diagnosis.

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Multiple myeloma symptoms can range from tiredness, nausea and constipation. Other symptoms may include:

• Weakness, dizziness, and shortness of breath, which are signs of a low red blood cell count, are called anemia.
• Bone pain, which could be a sign of a fracture.
• Urinating too much or too little, muscle cramps, nausea, and vomiting are symptoms of kidney failure.
• Confusion is caused by too much calcium in the blood.
• Frequent infections because you have too few white blood cells to fight them.

It’s important to know that these symptoms could be attributed to other conditions. If you experience any of these symptoms or are concerned about any changes to your body, you should address them promptly with your doctor.

Hematologist-oncologist Dr. Adam Cohen lays out your options during the maintenance phase of treatment

If You Have Back Pain, Should You Get an MRI For Multiple Myeloma?

If you have back pain, you most likely do not have multiple myeloma. But it’s important to know that pain in your back, or bones, is a symptom of myeloma.

So, the question is if you have back pain, should you get an MRI for multiple myeloma? Of course, you should get your symptoms checked out by a specialist until you are content with the explanation received.

Multiple myeloma does cause bone conditions. Why is that and how common is it? According to the Multiple Myeloma Research Foundation, 85% of multiple myeloma patients have some kind of bone damage or loss.

“The most commonly affected areas are the spine, pelvis, and rib cage,” the Foundation explains.

The reason for this bone loss or damage is multiple myeloma disrupts the bone remodeling process. The cancerous myeloma cells keep the cells in the bone responsible for removing old bone and rebuilding new bone from working properly.

The disease can also weaken the bone, resulting in fractures. And it can cause thinning of the bones leading to osteoporosis [meaning the bones are more porous and more likely to fracture].

And “in advanced multiple myeloma, a patient may lose inches from his or her height due to compressed vertebrae over the course of their illness.”

So bone conditions can be a symptom of multiple myeloma.

Dr. Jens Hillengass, Chief of Myeloma at Roswell Park Comprehensive Cancer Center, notes that most people who endure some type of back pain are experiencing the symptom due to poor posture or lack of exercise, not because they have multiple myeloma.

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“Multiple Myeloma is very rare. If a patient has back pain and there is no reason for that, or no obvious reason for that, then you should go further and do more sophisticated imaging,” Dr. Hillengass adds.

If after an X-ray and an MRI, your doctor believes that something feels off about your back pain, then you should absolutely think about further testing.

Getting a Diagnosis

Sometimes doctors find multiple myeloma while doing a blood test to look for another condition, or when trying to find out what’s causing a patient’s unexplained symptoms.

According to SurvivorNet’s experts, blood tests are also the way your doctor might learn that you have smoldering multiple myeloma or MGUS, because these conditions don’t usually cause symptoms. Smoldering multiple myeloma and MGUS aren’t cancer, but they can sometimes turn into cancer.

The odds that either condition will become cancer are very small, but to be safe, your doctor will probably check you more closely with blood and urine tests, and sometimes a bone marrow biopsy–removing and testing a small sample of the spongy material inside your bones. These tests can help monitor you for changes that signal you’ve switched over to multiple myeloma, and that you need to start treatment for this cancer. You may also need a bone marrow biopsy to help your doctor make the initial diagnosis.

Doctors use blood and urine tests and imaging tests such as X-ray or MRI to help diagnose multiple myeloma and to guide treatment options. Ultimately, a bone marrow biopsy will confirm the diagnosis.

Monitoring your bone strength and health over time will help your doctors understand how, or if, your disease is progressing.

Treatment Options For Multiple Myeloma

Not everyone with multiple myeloma needs treatment right away. If you have smoldering multiple myeloma, your doctor might simply monitor you regularly, to see if your disease progresses.

If you develop symptoms or your doctor thinks you need treatment, there are many options.  Which of these treatments you receive, and how they are sequenced, depend on several factors, and on whether your treatment team thinks you are a good candidate for a bone marrow transplant.

Bone Marrow (Stem Cell) Transplant

This is also known as a stem cell transplant. It is a procedure to replace diseased bone marrow with healthy bone marrow without myeloma cells. Based on multiple factors, your doctor may decide that a stem cell transplant is best for you. The transplant process can be involved and requires multiple steps. Be sure to discuss this with your treating team to understand what is involved and what options are available.

If you’re not a good candidate for chemotherapy, your treatment options include targeted therapies, biologics, and steroids.

Targeted Therapy

Targeted therapy is now available for patients with multiple myeloma, and targets abnormalities in myeloma cells that allow the cancer to survive. Examples of targeted agents your doctor may use include bortezomib (Velcade), carfilzomib (Kyprolis), and ixazomib (Sarclisa). These drugs are either given in a pill or through an IV, and cause myeloma cells to die by preventing the breakdown of certain proteins in myeloma cells. You doctor may also use other targeted agents in the class of medications known as monoclonal antibodies.

Biologic Therapy

Biologic therapy is another class of medication your treatment team may use to treat your myeloma. These medications use your bodys immune system to help fight and kill myeloma cells. This class of medication is most often given in pill form and include medications such as thalidomide (Thalidomid), lenalidomide (Revlimid), and pomalidomide (Pomalyst).

Chemotherapy

Sometimes your treatment team may recommend chemotherapy to treat your myeloma. Chemotherapy uses strong medicine to target cancer cells throughout your body. If your doctor recommends a bone marrow transplant high doses of chemotherapy are used for this purpose.

Steroids

Occasionally, doctors may use corticosteroids such as dexamethasone or prednisone as part of your treatment. Steroids are different from chemotherapy, targeted therapy, and biologic therapy. They work to reduce inflammation throughout your body. Steroids are given as a pill, and are also active against myeloma cells.

Radiation

Radiation uses high-dose X-rays to stop cancer cells from dividing. It is sometimes used to target myeloma in specific areas that may be causing you issues or pain. It is also used if there are tumors or deposits of myeloma cells that need to be treated, such as a plasmacytoma — a tumor made of abnormal plasma cells — of the bone.

Sometimes the cancer can return, or relapse after treatment. If this happens, your doctor can put you on one of the treatments you’ve already tried again, try a new treatment, or recommend that you enroll in a clinical trial.

Any of these treatments can cause side effects, which may include nerve pain and fatigue. Your doctor can adjust your medication if you do have side effects. In general, you should start to feel better once your treatment starts to work.

Extending Your Lifespan With Multiple Myeloma

Then you’ll ultimately reach the maintenance phase of treatment. Now that your doctor has gotten your cancer under control, from here the goal is to keep your disease stable and to maintain your quality of life. Which type of maintenance therapy you get, and what prognosis you can expect, will depend on whether your doctor determines that your multiple myeloma is standard risk or high risk.

One of SurvivorNet’s experts describes the maintenance process for this disease as similar to lawn care. Once you care for your lawn and it’s no longer overgrown (that’s the initial treatment), it will need some tending but with that attention (such as low doses of maintenance drugs), it can remain healthy.

Why the many phases of multiple myeloma are like caring for your lawn, says hematologic cancer specialist, Dr. Sid Ganguly

Sometimes this disease will return, even when you’re on maintenance therapies. You’ll still have treatments available if this happens.

Though it can be daunting to choose treatments for relapsed multiple myeloma, the medical experts at SurvivorNet are here to help you make sense of them. Remember that you do have options, and that the goal which becomes more achievable with each new treatment that’s introduced is to preserve your quality of life and extend your lifespan.

Questions for Your Doctor

If you are facing a multiple myeloma diagnosis, here are some questions to help you begin the conversation with your doctor:

• What stage is my multiple myeloma?
• What are my treatment options?
• What are the possible side effects of your recommended treatment?
• Who will be part of my healthcare team, and what does each member do?
• Can you refer me to a social worker or psychologist who can help me cope with my diagnosis?

Contributing: SurvivorNet Staff

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