“I couldn’t be happier with the results so far and my decision to go with (myeloma specialist) Dr. James Berenson’s regimen. I don’t think I would have made that decision without your help.”
The information posted below is from a newly diagnosed multiple myeloma (MM) patient. The patient is trying to decide between two conventional MM oncologists- one from Kaiser Permanente and the other is Dr. James Berenson, a myeloma specialist.
A diagnosis of MM is devastating primarily because conventional oncology considers MM to be incurable. Yes, there is a long and growing list of conventional (FDA approved) therapies and evidence-based non-conventional therapies. But the main challenge faced by MMers is that their oncologist is telling them that their cancer is incurable.
Living with MM since my diagnosis in early ’94 has taught me that MMers must walk a fine line between toxicity (killing MM) and collateral damage caused by your toxic treatment (side effects). Killing MM is easy. Killing MM while keeping the patient healthy is the challenge.
I mention the above in order to focus newly diagnosed MM patients in what I have learned are the three keys to surviving multiple myeloma. And those 3 keys are:
- manage toxicity and side effects
- long overall survival (OS) aka length of life and
- high quality of life (QOL)
The actual patient experience below the video, is an example of someone who stands to accomplish all three MM goals- a long overall survival with few if any side effects leading to a high quality of life.
Make no mistake, aggressive standard-of-care therapies such as 3-6 rounds of induction therapy and 1 or 2 autologous stem cell transplants will often lead to short, long-term and late stage side effects. They did for me.
Dr. James Berenson famously rejects autologous stem cell transplants for MM. He is a genius, in my opinion, for being able to manage a person’s MM with low doses of chemotherapy. I believe Dr. Berenson has mastered the cure vs. control debate. Meaning, he focuses on controlling MM.
Among MM specialists, one of the “great eight” is Dr. James Berenson. The info below is of a newly diagnosed MMer with a slight m-spike and other diagnostic issues. The patient below had a basic feeling that “standard-of-care” therapies such as RVd and an autologous stem cell transplant were simply too much toxicity for his body to take.
It’s important for all newly diagnosed myeloma patient’s to understand that myeloma specialists as well as those hospitals that treat high volumes of myeloma patients have much better MM overall survival statistics.
Have you been diagnosed with MM? What stage? What symptoms? Please scroll down the page, post a question or comment and I will reply to you ASAP.
- MM Cancer Coach
- MM Cancer Survivor
- Director PeopleBeatingCancer
Hello David- I would like to thank you again for taking the time to speak to me yesterday. The discussion was actually quite comforting. I have read the majority of the multiple myeloma cancer coaching downloads that I received yesterday. What a tremendous amount of information you have acquired. It was extremely informative and reinforces the fact that I have a lot of work to do…
I have an appointment with Dr. Berenson at noon. I’ll share what he has to say afterwards. Additionally, my oncologist wants to begin RVD therapy on Monday. He is unaware of my pending appointment with Dr. Berenson. I just can’t help but believe that I’m heading into RVD too quickly given my current status (but I’m not a doctor). Hopefully Dr. Berenson will help to provide some clarity.
Dr. Berenson says that this is way too much medication and a stem cell transplant is unnecessary. He recommends DVD (Doxil/Velcade/Dexamethasone) induction in accordance with the regimen below followed by maintenance :
Doxil: 5mg/m2 on days 1, 4, 8 and 11 of a 28 day cycle given intravenously.
Velcade: 1.0mg/m2 for days 1, 4, 8 & 11 of a 28 day cycle given subcutaneously.
Dexamethasone: 40mg on days 1, 4, 8 & 11 of a 28 day cycle given intravenously.
Zometa: 4mg every month given intravenously.
- Acyclovir 400 mg orally daily.
- Alpha-lipoic acid 600mg orally daily for PN.
- Calcium 1000mg orally daily.
- Vitamin D 1200IU orally daily.
Hello David- I hope you are well.
Here is an update regarding my treatment:
- I completed my 2nd cycle.
- I completed my 3rd cycle.
- I began my 4th cycle today.
- I still have not had any side effects whatsoever.
- I walk 5 miles every day followed by an hour workout.
My Kaiser doctor ran myeloma labs after the first and third cycles. The results are shown below. My myeloma is IGG / Kappa:
1) IGG Immunoglobulin
Standard Range: 700 – 1,600 mg / dl
Before My First Treatment Cycle: 1,560 mg / dl ( I never was out of range just near the high end. )
After My First Treatment Cycle: 1,100 mg / dl
After My Third Treatment Cycle: 837 mg / dl
2) IGA and IGM also in range.
3) Kappa / Lambda Free Light Chains
Kappa Standard Range: 3-19 mg / l
Before My First Treatment Cycle: 44 mg / l
After My First Treatment Cycle: 10 mg / l
After My Third Treatment Cycle: 6 mg / l
Kappa / Lambda Ratio Standard Range: .3 – 1.7
Ratio Before My First Treatment Cycle: 4.4
Ratio After My First Treatment Cycle: 1.2
Ratio After My Third Treatment Cycle: ..9
Lambda also in range.
4) M-Protein Level
Before My First Treatment Cycle: .70 g / dl
After My First Treatment Cycle: .53 g / dl
After My Third Treatment Cycle: .30 g / dl
I couldn’t be happier with the results so far and my decision to go with Dr. Berenson’s regimen. I don’t think I would have made that decision without your help. Thank you for that.
My wife and I went to listen Dr. Berenson speak. It was great. I find him to be very reassuring. I was able to speak with him afterwards. He said that the fact that my Free Light Chains went to normal range after one cycle was “outstanding” news.
I’ll continue to keep you informed. Thanks again.
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