By Jennifer Ahlstrom | Posted - Mar 4th, 2020

 

 

 

 

Why all Multiple Myeloma Patients Need a Myeloma Specialist

As the founder of the Myeloma Crowd, I have the opportunity to talk with myeloma patients several times per week and I love the chance to provide them with advice to help ease their myeloma journey.

If there were a single piece of advice I could give to all myeloma patients, it would be to have a myeloma specialist on your team!

Why? Because seeing a myeloma specialist can add years to your life.

What Usually Happens When We're Diagnosed

The majority (80%) of multiple myeloma patients are diagnosed in community oncology centers where they meet with an oncologist (cancer doctor) or a hematologist (blood cancer doctor) who are usually kind, caring and smart. After doing some kind of basic testing to verify that you have myeloma, they put together a treatment protocol and start you on treatment. As a patient, you are likely to follow their advice and not ask questions.

This would be fantastic if multiple myeloma were an easy, cookie-cutter cancer to treat, but it's not. These talented doctors are also treating patients with lung cancer, breast cancer, kidney cancer, head and neck cancer, etc. or lymphoma and leukemia. It is likely they are treating fewer than 5 myeloma patients annually.

Many do not perform adequate genetic, imaging or even blood testing at diagnosis - and this information is absolutely essential in selecting a treatment protocol. For example, if you have higher risk genetic features, you should receive more aggressive treatment from the start. Once you begin treatment, this genetic information can be lost until relapse. According to Dr. Guido Tricot, "If you want to win the war, you must know your enemy."

Myeloma is Complicated... And So are Your Treatment Options

Because the doctors are treating more than one type of cancer, they are less likely to know about the latest advances in myeloma. Ola C. Landgren, MD, PhD, Chair of the Myeloma Service at Memorial Sloan Kettering Cancer Center said:

"I used to be able to go to myeloma conferences every two years and get up-to-speed on myeloma therapies. No more. Now, every six months isn't close to enough."

Dr. Betsy O'Donnell of Massachusetts General Hospital noted on OncLive.

"I always liken the treatment of multiple myeloma to a chess game where you have a certain number of pieces. Those pieces or players operate a little bit differently. You have to be strategic about how you use them. There's only a certain number of them. Thinking carefully about how we employ therapies that we have until we are curing myeloma is very important."

There are over 15 approved myeloma therapies and they are commonly used in doublet, triplet or quad combinations. Knowing what to apply, when and for which patient in an optimal way takes deep skill and experience. Each myeloma patient has on average 5 unique genetic myeloma clones at diagnosis and the genetics can change over time with treatment. Personalizing care for each patient is complex!

I was diagnosed by a general oncologist who was seeing fewer than 5 myeloma patients per year. The myeloma specialist up the street at the academic cancer center (who my first doctor told me NOT to see) was treating 600 myeloma patients per year. The pattern recognition alone from the larger patient set was enough to convince me that seeing a specialist was essential. My initial decision to switch care providers to the myeloma expert is one I have never regretted.

Your First Treatment Will Provide Your Longest Remission

The challenge in myeloma is that what you do as your first treatment really matters. Your first "line of therapy" (which could include several treatments like your induction treatment, a stem cell transplant and maintenance therapy) will provide your longest remission.

To Dr. O'Donnell's point, if we start with a weak myeloma therapy (pawns), our myeloma is more likely to relapse more quickly, making it harder to treat over time.

There is clear data from the Mayo Clinic and the University of North Carolina showing that you live longer if you see a myeloma specialist.

You Can Consult with a Specialist and Get Treatment Near Home

Many myeloma patients think that if they have a myeloma specialist on their team then they have to receive their weekly care or infusions at the academic center too. This is not true.

You can consult with a myeloma specialist when you are newly diagnosed and then receive care from a local facility. The myeloma expert can work with your local doctor to administer the protocol defined by the myeloma specialist. Your local hospital can provide the infusions (chemo, bortezomib, carfilzomib, daratumumab, isatuximab, etc.) If you are considering stem cell transplant, make sure the transplant center is experienced at stem cell transplant.

It's also a good idea to visit with the myeloma specialist anytime you need to make a change in your treatment.

We believe that it is so important to consult with a myeloma specialist that we created an online directory of the top myeloma specialists at academic centers across the world. Doctors in this directory both treat myeloma patients and perform academic research. To be included they must treat over 50 myeloma patients per year.

We hope that you add a myeloma specialist to your team to help you best navigate your myeloma, help you understand the best treatment and your clinical trial options.

Find a Myeloma Specialist today on the Myeloma Crowd website!

Myeloma Crowd Doctor Directory

 
Jennifer Ahlstrom
About the Author

Jennifer Ahlstrom - Jenny A - Myeloma survivor, patient advocate, wife, mom of 6. Believer that patients can help accelerate a cure by weighing in and participating in clinical trials. Founder of Myeloma Crowd, Myeloma Crowd Radio, HealthTree and the CrowdCare Foundation.

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DEBRA - hi my dad is receiving treatment for Myeloma cancer he has a confirmed fracture T12 and 2 other ares showing signs. He has received very good care but i think there is more that could be achieved? He is 82 on paper an old man, but until just a few months ago was still decorating the house, driving, playing cribbage twice a week with best friends and enjoying life. Granted this is a horrible cancer and i know he is not going to get "better" but i really think he could feel better than he does right now? He is on lenolidomide 15mg (21 days 7 day break) and dexamethosone 10mg every weekend pregablin 75mg morning and evening, oxycodeone 20mg morning and evening (modified 12 hour release). I understand he needs all of this as a treatment package for his condition, however he is just so poorly and frail! He was diagnosed in late November had a dreadful time while the levels of medication for pai were sorted but then seemed a little more settled. We have had a terrible time of bowel incontinence issues but they now seem a little more stable after a spell in Hinchingbrooke was discovered a bowel blockage. Now in last 2/3 weeks he is suffering from total mental confusion to a degree that is just so shocking as has happened so quickly? Short term memory mostly but also a complete confusion on his illness what is going on around him generally unable to hold conversation or retain any information. We have been under care of Woodlands at Hinchingbrooke hospital but do not feel they are taking on board our grave concerns over his mental health state right now. Dr Chengal? is not the most helpful or easiest of people to deal with although i have to say the rest of Drs have been very caring. May be this is his lot but i really feel they see 82 on paper and this is it? He was such a bright well man yes bit forgetful at times but i just need to know we have done everything we can at this point to help him have the best few months or years we have him here with us. Any help or advice would be so welcome. If we can go privately for a consultation this would be most welcome. We live near Huntingdon so somewhere within 20 or 30 mile radius as he is not well enough to travel too far. Thank you.

Reply from Jennifer - Debra, while Rev/dex is a common treatment for more elderly patients, there are other drugs that can be used to treat myeloma that may have fewer side effects. He needs to be seen by a myeloma specialist. You can find one here https://www.myelomacrowd.org/myeloma-directory/ and if you need more info, please email me at info@crowdcare.org and I'm happy to help!

 

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