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Misdiagnosis, Dr. James Berenson, Stage 1 Multiple Myeloma
The single most difficult aspect of multiple myeloma is that it is difficult to diagnose. This is why 95% of all newly diagnosed MM (NDMM) patients are stage II,III.
Fortunately, the NDMM patient below worked at determining what was wrong with her and despite her challenges determined she had multiple myeloma. And her MM was early stage aka Stage I Multiple Myeloma.
The good news/bad news about stage I MM is that the FDA standard-of-care is designed to treat stage II,III NDMM patients. In my opinion anyway, the SOC is way too much toxicity for stage I MM patients.
The MM specialist with the longest five year survival averages is a man named Dr. James Berenson. Dr. Berenson specializes in managing MM, not trying to cure it with high-dose, aggressive therapies.
Make you wonder, doesn’t it?
Even though the early stage MM patient undergoes relatively less chemo than the SOC, she still has to suffer through a host of side effects.
David Emerson
- MM Survivor
- MM Cancer Coach
- Director PeopleBeatingCancer
Recommended Reading:
- Elevated IGG, no M-spike, Dx of MGUS- Thoughts?
- Smoldering Multiple Myeloma- Early Treatment?
- Quercetin- Multiple Myeloma, Heart, Brain, Bone Health
Lynda’s MM Story-
After many months of pain, I was diagnosed with “severe carpal tunnel” in December 2020 and subsequently had double hand surgery in January 2021. Also, during this time I struggled daily/nightly with severe shoulder pain.
My doctor (PCP) wanted to keep throwing one drug after another at it. In a frustrated last ditch effort to figure out the source of the pain, I went outside of my insurance to get an MRI. Sadly and thankfully at the same time, the MRI showed “severe sub-acromial and sub-deltoid bursitis”, but it also showed “abnormal bone marrow signal intensity, which is a concern for cancer.”
If you’re on this website, then more than likely you’ve had a medical professional on the other end of the phone speak the “C” word to you. And you know exactly what happened. Time stopped, the ground fell away, and we went into free fall.
However, this is also exactly where God stepped in and became more real to us than ever before. We started seeing His hand and instruction every where we turned.
I saw my PCP the very next day. The same doctor who had all but dismissed my pain, was now very caring and compassionate as she read the MRI results. She sent the disc to the Radiologist within our insurance to re-read the images for a second opinion and ordered extensive blood work.
The results started coming in and everything was within normal range. The doctor even sent an email that according to the blood work, there were no signs of bone or bone marrow cancer. But then… the doctor called. She had spoken to the Radiologist. The Radiologist had looked at the images and concurred with the first reading by the other Radiologist. “Abnormal bone marrow signal intensity, which is a concern for cancer.”
Both Radiologists said it looks like Multiple Myeloma (MM), a form of bone marrow cancer.
I think everyone here understands the roller coaster of emotions. No cancer in one email… MM in the next phone call. To go from the email of no cancer to the phone call saying it looks like cancer was truly, truly a low point. “But the blood work showed no cancer.” My doctor explained that she had consulted an Oncologist after speaking with the Radiologist. He told her that 20% of MM does not show up in the standard blood tests.
At this point, the Oncologist wanted more blood tests.
This is the point where we found David Emerson and this website. Talk about hope. This community continues to be a ray of light and source of information and encouragement. Thank you.
Fast forward…
- PET/CT scan—negative.
- Bone marrow biopsy—80% plasma.
- Fat pad biopsy—the carpal tunnel was highly suspect as amyloidosis, but was negative.
- Serum Free Light Chain blood test—the smoking gun—
- Lamba light chains=1585. Ugh.
We met with the Oncologist in March 2021 who confirmed stage 1 Multiple Myeloma. He recommended the VRD (Velcade-Revlimid-Dexamethasone) regimen followed by high dose melphalan and Autologous Stem Cell Transplant (ASCT).
Thanks to PeopleBeatingCancer.org, I did not agree to anything, but told my oncologist I would be seeking out a second opinion, to which he had no issue with.
Enter Dr. James Berenson, Institute for Myeloma and Bone Cancer Research, one of the great eight. Highly respected by my Oncologist as well. We did an initial one hour phone consultation where he took the time to learn about me and my numbers. I felt heard, validated, and treated as an individual instead of another cancer patient to just issue the same old “if it’s good for one, it’s good for all” standard of care.
Because I already had severe carpal tunnel (neuropathy), Dr. B recommended a regimen of DVD—Doxil-Velcade-Dex for a minimum of 6 months and maximum of 8 months. We returned to my Oncologist, who shockingly agreed to pursue approval of the new protocol from our insurance (Kaiser Permanente) and got it!
I started treatment in May and have completed four cycles, and I will start the 5th cycle next week. I reached VGPR after the very first cycle and CR after the second cycle.
My lambda light chain numbers continue to fall and all my other numbers are either good for someone with MM or just plain normal. The side effects have been numerous especially since I had no indications of having cancer to begin with.
- Sleeplessness,
- constipation,
- diarrhea,
- styes,
- edema,
- abdominal distention,
- mouth sores,
- mood changes that usually lean towards depression and tears vs. anger and rage, etc.
I pretty much have a handle on everything but the edema and distention, however my Dex dose was cut in half for the 4th cycle and Dr. Berenson will most likely cut it half again for the 5th cycle.
My husband and I are starting to look ahead towards the maintenance phase and what that may look like. Based on past discussions, Dr. Berenson’s recommendation will likely be a Velcade shot every other week, some amount of Dex, and Zometa via IV once a month. My Oncologist will likely recommend Velcade, no Dex, and some form of bone strengthener 1-3x/year. We will research and weigh the options.