Macrobiotics has come to mean more than just a way of eating and includes increased emphasis on physical activity; minimized exposure to pesticides, other chemicals, and electromagnetic radiation; and stress reduction
Hi David- I am happy to tell you all the details of my living with Multiple Myeloma. I live in Israel. I will turn 70 this coming February, so I was 41 when diagnosed in 1992.
I received two oral doses of melphalan-prednisone in Israel in July and early September, and then managed to connect with Bart Barlogie in Arkansas.
I switched to VAD,achieved full remission, was harvested ( both bone marrow and peripheral blood) in February 1993 after priming with cyclophophamide, had one more round of cisplatin in March 1993 after the harvest, and received a dual transplant (from the peripheral blood only) in April and then late August or early September, several months later.
Altogether I made at least four trips from Israel to Arkansas, for the initial visit, the harvest, and the two transplants. I received the chemo in Israel. (The month of July I traveled to California with my wife and four boys, and we had the time of our lives. It was fantastic.)
An MRI showed that I had a 0.9 cm lesion in one vertebrae, maybe another as well. My bone marrow plasma count was 13 percent, which is high, but not too high.
I repeated the MRI 1 and 1/2 years later, and it was still 0.9 cm, so I figured it was growing slowly. My kappa to lambda ratio was a bit high, but less than 10, and hematologists and immunologists.assured me it could get as high as 50 or 100 before I had to worry about immune malfunction.
I rechecked the kappa to lambda ratio several years ago and the free kappa to lambda had crept up to 18. I figured that going only up to 18 in over 10 years was a slow pace, so, although it was of concern, I still left everything alone.
Last year I had a bad cough in June, so the doctors rechecked my MM and the monoclonal component had actually gone down, so I was encouraged. I refused to do a CAT scan or PET scan, fearing the radiation. I was willing to do an MRI, but the waiting time for that was so long that the hematologist told me to forget it for now unless I could get an appointment for a whole body. So I forgot about it.
He also told me that the bone marrow plasma cell count was about 20 percent, but I’m not sure I trust him on that.
This past July, I felt a back pain that came on pretty suddenly. I was able to get a spinal MRI and then a whole body MRI pretty quickly, maybe because people afraid of Covid-19 were cancelling their appointments, and they revealed that the T1 vertebra was somewhat collapsed and at the verge of exploding.
I got radiation for 10 days over 2 weeks in late July-early August. I then decided to get further treatment in Jerusalem where an eventual transplant was an option.
Eventually, a bone marrow biopsy revealed that my plasma cell count was 80 percent cancerous, and that the previous year had been 50 percent, not 20 percent! This was told to me in Jerusalem but not in Beer Sheva. So I have been living in Jerusalem for the past two months, where I have undergone 8 weekly infusions of DARA and dexamethasone, with lenalidomide.
The doctor (Moshe Gat) considered velcade, but I had terrible neuropathy in my arms even before velcade, so he agreed to drop the velcade. (I suggested carfilzomib, but he said it is hard to get in Israel, and has other side effects.)
My response has been good. My free kappa decreased from 50 to 30 very quickly, but has been stuck at 30. (maximum normal range 23). My free lambda went from nearly 16 down to 8, at the low end of normal range. The doctor told me that DARA antibodies can masquerade as free kappa, and that it may appear high because of that. I hope that is true.
After next week, the treatment becomes biweekly. Bone marrow biopsy planned after 4 months, and maybe a harvest for a transplant.
I am finding the present treatment very rough. Although I can walk briskly and even run with stamina, I am having a lot of trouble with the on again – off again high dose dexamethasone, which leaves me feeling a lot of muscle soreness two days later getting the infusion (originally 20 mg, now reduced to 10). Any suggestions?
Now for the possibly most important part: Back in 1993, I decided to go macrobiotic, and, after learning the ropes, have kept a strict macrobiotic diet for the last 27 years. This may have kept the MM growing slowly.
But you did even better. You went into complete remission a couple of years after getting treated. I would love to know the details of how you did it. Someone in the group said something about ANP, but I can’t decipher the initials.
It is so comforting to hear from you. I feel better already, and look forward to hearing more. I am at your group’s disposal if my experience can be of help to anyone in it. You have my permission to post any part or all of the above. It might be too long to post the whole thing.
Thanks very much for the details of your MM survival since your diagnosis in 1992. I too will discuss my MM journey.
I was diagnosed with MM in early ’94. I began the same induction therapy (five rounds of VAD) and two rounds of cytoxan “priming” as you put it, when I harvested stem cells followed it with an autologous stem cell transplant in 12/95.
I was 34 at diagnosis and you were 41. We each underwent VAD induction and high-dose cytoxan.
You responded well to your tandem SCT (8 year remission with a slow relapse) and I relapsed in less than a year after my ASCT.
The most interesting aspect of your MM experience, in my view, is that you and your oncologist were comfortable with you living with a small amount of MM slowly growing inside you for, what, at least 4 years (aredia has been shown to be a bit cytotoxic to MM) but probably about 19 years.
Which brings me to your current chemotherapy combo, Daratumumab, Revlimid (Lenalidomide) and Dexamethasone.
If you have a history of
- living with a small amount of MM living inside you and
- slow growing MM
I would consider undergoing your current triplet until you and your oncologist believe your MM has stabilized (does not have to be complete remission) and then continuing on as you did from 2001- 2020.
My reasoning is as follows:
- You have established the fact that your MM was slow growing
- You have established that you can live with MM inside you
- You are comfortable getting regular testing should you relapse
All to say that I think the reason you have lived with MM this long is because you have not undergone much therapy and they you are comfortable living with a small amount of MM in you.
That and your macrobiotic diet may be the keys to your long MM survival. Keep it up!
MM Cancer Coach
Macrobiotics has come to mean more than just a way of eating and includes increased emphasis on physical activity; minimized exposure to pesticides, other chemicals, and electromagnetic radiation; and stress reduction.
The diet consists: whole cereal grains, vegetables, beans, sea vegetables, fruit, white fish, seeds, and nuts.
According to the 1997 report produced by the American Institute for Cancer Research and the World Cancer Research Fund, increasing daily consumption of vegetables and fruit from 250g to 400g may lead to 20% fewer cases of cancer worldwide.