Hi David- I was diagnosed with Multiple Myeloma (MM) in February 2020, right in the middle of the COVID-19 pandemic. I was stage 3 and it was aggressive myeloma! A year prior I had started having issues with back pain and started seeing a chiropractor 3x per week just to stay functional.
Late October 2019 I bent over in the shower to pump facial wash into my hands and it felt as if a horse had kicked me. I was misdiagnosed with a sprain, but ended up in the ER on December 19, 2019 with severe back pain at which time an x-ray revealed a spinal fracture and Osteopenia.
A follow up bone density test showed severe osteoporosis. At 50 I had the back of a 95 year old!
January 21st, 2020 I had a regular appointment with my endocrinologist – who didn’t like some of the results on my most recent blood test. He ordered more tests, which resulted in a whirlwind of more tests:
- more blood work,
- 24 hour urine test,
- imaging scans,
- bone marrow biopsy and finally
- an appointment with an oncologist.
By the time I met with the oncologist, the aggressive myeloma diagnosis was already made and the only thing the oncologist needed to do was discuss and schedule treatment.
March 13th, 2020 I started to receive Kyprolis via IV once weekly for 3 weeks on, 1 week off. I was supposed to start Revlimid too (also 3 weeks on and 1 week off), but I refused (to my oncologist surprise and frustration).
I tend to react to some drugs so I didn’t want to load my body where I wouldn’t know which one was the culprit, so I eased into treatment.
My proteins were over 9000 when I started and my hemoglobin was critical at 6.6 and I had to receive a blood transfusion on my very first treatment date. But by the end of my first round (3 weeks), I had made a 75% improvement – only taking Kyprolis, along with added supplements I had started. Oh, and they give me Zometa to strengthen my bones.
The last week in March I had spinal surgery to repair multiple spinal fractures – the first one resulted in more, but once I had surgery, got a walker, and gave myself permission to just not worry about stuff I shouldn’t, I am now able to get around better.
Gravity hurts, so I can’t stand or walk longer than 3-5 minutes or I’m in a lot of pain. Originally doctors had me on muscle relaxers, hydrocodone and morphine. I didn’t want to live my life on opiates so I got a medical marijuana license which helps.
I did my 2nd round of treatment without Revlimid as well. I was simply too sick after the Kyprolis to add it in. I started Revlimed at the start of my 3rd round at 25mg, but I had a reaction and the oncologist reduced it down to 15mg.
At the end of my 4th round – what I thought was going to be my last, the oncologist told me my proteins were at .4 – obviously huge improvement from over 9000, but he said he was greedy and wanted to see if I could get to zero. Ugh.
I didn’t take this news well as I’d been complaining of aggressive myeloma symptoms for months – severe and violent chills in which I turned bluish-purple, shook uncontrollably, needed to cover up under 3-4 doubled blankets, while lying on a 2 ft. heating pad set to high and it would take four hours to get my body warmed up.
I’d run a fever of 103 or 104, I’d be nauseated and experience violent projectile vomiting. Then the diarrhea would start and last for 4 or more days (up to 10 – 12 times per day).
I told the oncologist I wasn’t moving forward experiencing that anymore. When I asked him how he determined the Kyprolis dose, he said height and weight. I asked him what the symptoms would be if 10 different women of all the same height and weight were given the same dose and he said it would vary.
Therefore, I said, he must adjust my dose based on how MY body was reacting, not some general dose based on my height and weight. He finally agreed, but I was pretty pissed I had to confront him like that after mentioning those symptoms for months.
Tomorrow, July 10th, 2020 will be the start of my 5th round. I will admit I don’t take the Revlimed regularly as prescribed. The shit comes in a bio-hazard bag and the list of side effects is insane. I simply do not want to take it. On top of that, the price tag is over $20k for 21 pills (insurance pays it, thank God!).
I actually feel pretty good – and at the end of my 4th round, all of my blood work was excellent – I wasn’t high or low in any area.
My only real complaint is my bones: they are weak, thin, and full of lesions. But I’m concerned about what happens after my 5th round of treatment. I do not want to be on a “maintenance dose” of Revlimed. I’d rather not take it at all.
I’ve found a place about an hour from me that does IV Vitamin C (as well as other IV nutrition) but the cost is not cheap!
This eating style is definitely void of sugar, but it does contain meat and dairy and I have never felt better! I love it because I’m never bloated and I have plenty of energy.
But a lot of what I read says MM patients should eat mostly vegetarian. I rarely eat red meat or pork. Most of the meat I eat is chicken, fish, salmon, shrimp, etc. I like my meat and I don’t want to give it up.
In fact, I couldn’t eat a lot of what vegetarians eat as it would raise my blood sugar (breads, pastas, potatoes, rice, oats, etc). I eat a wide variety of veggies every day, drink several cups of green tea daily on top of lots of fresh filtered water.
I take a lot of supplements, from milk thistle, artichoke, turmeric, vitamin D, several B vitamins, calcium, magnesium, and more, plus I take some potent pro and pre-biotics.
I’m not striving for perfection, but I know with no current cure, I have to stay on top of the MM. I’d love to see an integrative medical doctor and get their IV vitamin C and other therapies, but again, the cost is not cheap.
How do people afford this?!?! And until I can afford it, am I doing enough? Did you do any maintenance drugs, and if so, for how long? Or were targeted drugs available when you were being treated?
I’ve read your body can build up a tolerance to these targeted drugs – so why bother?
I believe I read that you did a stem cell transplant, is that correct? My oncologist says it requires a very high blast of toxic chemo – which is different than the targeted therapies I’m receiving now. I apparently can’t get the stem cell transplant without the high dose of chemo, so I won’t be getting a stem cell transplant as I won’t do that type of chemo. Ever.
Anyway, I’m very inspired by your story and am trying to read something on your site each day. I’m considering the coaching, simply to soak up as much knowledge as I can. I’ve read no less than 20 books or so since being diagnosed trying to educate myself on cancer, how it works, and how we can heal our bodies to fight/ward off cancer naturally.
Most books cover cancer in general or lean towards cancers like breast, prostate, lung, brain, etc. Finding your site that is focused on aggressive myeloma is a blessing and I thank you for sharing and offering your help to others with it.
God Bless and I’ll be tuning in regularly!
Toni
Hi Toni-
You have faced an advanced diagnosis of MM with all of the associated symptoms and come out smiling! Let me offer some specifics:
- Mis-diagnosis of aggressive myeloma leading to an emergency. I can’t tell you how many people tell me they had been experiencing bone pain for months, were mis-diagnosed and then wham.
- It sounds as though you are managing your oncologist as well as can be expected. I agree with your decision not to have an autologous stem cell transplant. ASCT does not offer longer life. Only a longer first remission on average. Plus lots of short, long-term and late stage side effects.
- Mind-body Therapies- it sounds as though you have wrapped your brain around “the new normal.”
- Kyprolis, Revlimid, Zometa- I’m a “less is more” person. My experience is that once MM patients reach remission and are stable, they should stop all toxicity. Yes, I had induction therapy, an ASCT and lots of radiation- I wish I knew then what I know now…
- Yes, according to research aggressive myeloma patients should eat anti-angiogenic fruits and veggies- I eat a little red meat but as little animal fat as possible.
- Yes, I underwent lots of conventional MM therapy though none of it did much beyond short, long-term and late stage side effects.
- I don’t do any conventional therapies but I live an anti-MM lifestyle through nutrition, supplementation, exercise, detox, many others.
- While I encourage you to read and learn as much as you can about cancer (knowledge is power), you are correct- MM is much different than the common cancers such as breast, prostate, lung, etc.
Ask me any and all questions about any/all things MM. This is what I do.
Good luck and hang in there.
David Emerson
- MM Survivor
- MM Cancer Coach
- Director PeopleBeatingCancer
