First I will tell you there is a big difference between a Multiple Myeloma Specialist, a Hematologist and an Oncologist.
My experience is that their knowledge for the most part goin this order as well with the Specialists having the most knowledge, followed by the Hematologist as this is a Blood Cancer and then the Oncologist who’s primary function is to kill cancer.

An Oncologist will send you back to your general to deal with side effects despite them having even less knowledge about this cancer..
An Oncologist will scare patients by telling them directly that they will only survive X amount of years which in my opinion is them giving up on you where an MM specialist will tell you statistics but know that there is no way to predict how long you will survive with this cancer.
People are living longer now than ever thanks to treatments that many Oncologist don’t even know exist.

As for why can’t the doctor give you easy to understand answers in layman terms?
Because unfortunately the first word in the cancer is Multiple!
It isn’t defined by just one test but by multiple tests and most patients just trust their doctors because they don’t understand and they don’t attempt to because it frankly is a lot of research and work.

I am a strong believer in advocating for yourself and in order to do so you. Need to understand this cancer as well as your doctor does or better.
This is what helped me survive 12 years even though I did not always follow the recommendations of my doctors.

Healtree is one of your best resources for learning and understanding, but you have to match what applies specifically to you and your cancer as the information is based on averages and not individuals.
Multiple Myeloma is a heterogeneous cancer meaning that it is very individual.
Two people can present at the same stage with the same cytogenetics and each will respond to the same treatment differently.

Educating yourself is your best defense and will help you understand what your doctor is telling you and allow you to participate in your own treatment and decide if a plan is working for you or not.

The anxiety that people feel when they get their test results before they see their doctor proves that they lack understanding. This just adds to your stress and can be counterproductive.
Either don’t look at your results until the day before you see your doctor so that you can form your questions, or learn what each value means and where it fits into the puzzle so that you don’t have undue anxiety because one value is not where you think it should be.
ie. Kappa or Lambda by themselves with move around due to other factors not related to Cancer, but your doctor is looking at the ratio. Again, this is only one part of the puzzle so you cannot get too caught up on this either.

I hope this helps others.

My oncologist/hematologist is based out of the Greenabaum Cancer Center at UMMC Baltimore. The hospital/medical school has a portal where updated notes are completed after each visit or infusion. Generally the updates are clear and offer much information. If I have any questions, I can message him through the portal and get prompt answers. Check and see if your oncologist’s affiliation has a portal that you can have access to communicate and ask questions. If you can’t get answers , I would find a new oncologist. Being left in the dark can be scarier than the disease. Best of luck in your fight

@A MyMyelomaTeam Member thank u for sharing so much of ur MM knowledge I am going to read this again and again until it sinks into my mm bones, thanks for the hope…I need to get more vertical on MM, so far it’s just been overwhelming and horizontal but I’m leaorng more every day thaks to mm survivors like u, this is most helpful and hopeful!

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A MyMyelo...

There's a Lot of Old News about MM. Even in 2021, when I did my Second Opinion with my John Hopkins Onc, he said that plenty of the Published Info is from many years prior and without collective results from newer MM Meds.

A perfect example of this is in 2021, I was told by Hopkins to get DarzFasPro, saying it was a Game Changer, Resulting in Faster and Deeper Initial Response.

In 2021, DarzFasPro was not the FDA Standard of Care and my First Onc refused to offer it to me. Fortunately, a block away, I found another Onc, where DarzFasPro was just being offered by his Practice. There were 4 of us on it around the same time and we all responded very well.

Now in July 2024, DarzFasPro is Now the FDA Standard of Care. My point is the Info we're told Is Old News that they are slow to update.

In 2021, I was told my IgA Kappa and my high Risk of t4;14 were indicators of a Poor Prognosis. Being Stage 2 and 80+% bad Plasma, they promoted that Old News as why I would require a SCT.

I did not get a SCT or collect my Stem Cells - I have no need to do so and never will.

I responded instantly to my Treatment and found Case Studies, like Dr Costa's Masters Trial, that Concluded - Getting to MRD Negative at 10 -6 (none per million tested) was very deep and durable Remission, regardless of having 1 or 2 High Risk Factors. It's Arriving at the Destination that determines the Outcome, not how you get there and not any of the side-line noise.

After I became MRD Negative at 10 -6, my Hopkins Onc suggested a future BMB would most likely not even find my t4;14. That was June of 2022. Sure thing, my BMB of Aug 2023 found no Abnormalities and no trace of the t4;14.

Learn to Trust your Labs, a good Plant Based Diet, Supplements, and your MRD Status of 10 -6 and No MSpike. Everything else is just Old News that often amounts to unnecessary angst.

I've spent countless hours of reading and learning to gain the knowledge I needed to my own Judgement, supported by the Continued Labs and blood sample clonoSEQ MRD Testing. I can easily assure you, had I done everything they asked me to do, which is straight Text Book Standard of Care Guidelines, I would definitely be far less healthy than I am. I must have their MM Meds when I'm Active but Not when I'm Negative.

DarzFasPro often provides an almost Instant Recovery but Long term use of DarzFasPro has it's own consequences. I've Posted Case Study Info related to these concerns.

Yeah it’s hard to get a straight answer from them but I get copies of my blood work and GOOGLE what I don’t understand and so far it’s never been wrong. My GP. doesn’t like it to much when I do that but I told her well then give me the answers when I ask for them then I won’t have to do that. My Oncologist is really great about answering my questions but in order to get to access my medical records from the hospital I had to sign a consent form before they would release them to me.