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Multiple Myeloma an incurable disease, but I have spent the last 25 years in remission using a blend of conventional oncology and evidence-based nutrition, supplementation, and lifestyle therapies from peer-reviewed studies that your oncologist probably hasn't told you about.

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Multiple Myeloma Treatment- No CRAB, Increased Freelight Chains?

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The article linked and excerpted below talks about a relapse in MM to be about the damage or risk of damage caused by disease to be the guiding factor when consider whether or not to actively treat you MM.

Hello David- as usual I trust you are well. I just had telemedicine conference with my oncologist and we discussed my latest bloodwork testing results that showed a return to normal (complete remission?) meaning no CRAB symptoms, and considering I’ve been living with MM since my diagnosis in 2013, I am feeling pretty good overall.

 

Specifically : normal

  • liver function,
  • good kidney function, and
  • no m-spike

which i have not had since 2013.

Our concern now is

  • low platelets,
  • low red and white blood counts

so he wants to do another bone marrow biopsy to confirm there is nothing else going on.

The FreeLight Chain numbers are stable in that the ebb and flow incrementally – no normal – but never a significant spike up or down….he now things its no longer giving us a true indication of what going on with the bone marrow.

As I say, my concern is that something is not allowing normal red, white, and platelets.

I will keep you posted. Also have you heard of situation like this?

Also, I do notice a slight – never constant – ache in my throat and I have thoughts of a second monster lurking like lymphoma. I still ride my bike but notice a drop- not significantly – in my stamina.

Overall David I feel great – really do. Charlie


Hi Charlie-

I am well, thanks. I will excerpt your questions, comments and reply below-

1) “I just had telemedicine conference with my oncologist and we discussed my last bloodwork result that showed a return to normal liver function, good kidney function, and no m-spike which i have not had since 2013.”
You are the first MM survivor I’ve talked to about telemedicine, telehealth, appointments. It sounds like it went well, meaning you were satisfied that you asked and answered all of your questions, you are a satisfied customer?
More importantly, your numbers all sound great. Liver, kidney function, no m-spike all sounds great. I’ve forgotten. Are you saying that you were first diagnosed in 2013? You have been living with MM for seven years? Excellent. And you are in (almost) complete remission.
2) “Our concern now is low platelets, low red and white blood counts so he wants to do another biopsy to confirm there is nothing else going on…” 
Both MM as well as chemotherapy cause myelosuppression (abnormal RBC, WBC, platelets). My money is on your chemotherapy causing myelosuppression but it makes sense for your oncologist to try to figure out what is going on.
3) “The Freelight Chain numbers are stable in that the ebb and flow incrementally – no normal – but never a significant spike up or down….he now things its no longer giving us a true indication of what going on with the bone marrow; something is not allowing normal red, white, and platelets.”
It is usual to see your freelight chains go up and down. I just wrote a blog post about this issue. Your challenge is that myelosuppression is BOTH a MM symptom and a MM side effect. I will link the post below to explain my thinking and the research.
The important thing is that you will exercise, supplement, eat, etc. your way back to normal freelight chains levels. Not all MM survivors heal their myelosuppression. Your lifestyle will make the difference, I think. Not too much Scotch now :-)…
4) “I will keep you posted. Also have you heard of situation like this?”
When you say “a situation like this” I take you to mean have I seen normal CRAB, normal m-spike, yet with abnormal freelight chains? Yes, I have written about this and posted about this issue on Beating Myeloma. It is called a “biochemical relapse.” There are MM survivors who live for years with FLC out of the “normal” range.
I don’t want to minimize the importance of freelight chains but they are only one of many diagnostic issues. There are many MM patients who live with a small m-spike for years as well. I compare it to older men living with a small amount of cancer in their prostates. It happens.
5) “I do notice a slight – never constant – ache in my throat and i have thoughts of a second monster lurking like lymphoma.”
 
My guess is that any sore throat is a result of a reduced immune function (low platelets) but let’s take one thing at a time. Work on healing overall now that you are in remission.
6) “I still ride my bike but notice a drop- not significantly – in my stamina. “
 
Considering I have to work at walking slowly up and down the block each morning (lockdown…no gym), I am impressed, jealous, envious.., you get the idea. The importance of physical exercise is that this is an important healing activity. Work out, eat nutritiously, supplement, get plenty of sleep, etc.
7) “Overall David I feel great – really do”.
This is more important that all of the diagnostic testing you undergo.
Let me know if you have any other questions.
Hang in there Charlie.
David Emerson
  • MM Survivor
  • MM Coach
  • Director PeopleBeatingCancer

Recommended Reading:


Biochemical Relapse in Multiple Myeloma- To Treat or Not To Treat?

“…While the excerpt below by Ajai Chari, MD, doesn’t really give a specific definition of “biochemical relapse,” I interpret the doctor’s explanation to be directed at two things. First, is the MMer asymptomatic or not and second, has the MM’s freelight chains increased out of the “normal” range. You seem to fall into both categories. No symptoms with increased kappa freelight chains.

The article linked and excerpted below talks about a relapse in MM to be about the damage or risk of damage caused by disease to be the guiding factor when consider whether or not to actively treat you MM.

Meaning you must consider your past treatment history and combine this with a determination if your disease is high risk or standard-risk MM.

Multiple Myeloma Treatment- Long-term Bone Marrow Injury

“…Chemotherapy and radiation can cause a short, long-term and late stage damage to the patient’s bone marrow. That much is clear. As much as I would like to say otherwise, chemotherapy is sometimes the only choice for MM patients with multiple myeloma growing in their bones causing blood, bone and kidney damage.

The two possible solutions? According to the two studies linked below, nutritional anti-oxidant supplementation. The articles specifically cite N-acetyl-cysteine to prevent long-term bone marrow injury. In addition, the article clearly states that chemotherapy causes bone marrow damage in a time and dose dependent manner. Translation? Less is more…”

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