Note: This is a part of a series of posts about DrG’s parents, who both suffered from and ultimately passed away from serious health conditions – his mom from multiple myeloma, and his dad from complications from a severe stroke. Over the course of their illnesses, he put up these posts. DrG thought about removing them, but ultimately decided to leave them up in the hopes that they would help other people.
As those of you who’ve been part of this community know, my mother has been struggling with cancer over the past few years. In the past couple of months things have spiraled downward. As, unfortunately, cancer is becoming more and more common, and more people will face the same situation I’m in, I thought I’d share some of the details of what is going on in the hopes that it might be helpful to other people.
My intention is to update this ‘series’ as things continue – for better and for worse
Here is the current situation with my mother:
How it started
About 3-ish years ago my mom began having leg pain. At first she thought it was from overuse or that she’d sprained or strained something. She took NSAIDs (tylenol, advil, etc) for a few weeks but things didn’t improve, so she went to see her MD. The MD prescribed more NSAIDs, rest, and physical therapy for a few weeks to see if it would help. It didn’t. So the MD ordered an X-ray of the hip. This showed suspicious lesions of the bone.
Further workup revealed multiple myleoma (MM). MM is a type of immune cell cancer, so it is a blood cancer meaning it is spread all over the body. By the time they find it, it will have spread and there is no surgery possible to remove it. It primarily ‘lives’ in the bone marrow, the spongy soft center of bones that produces both our blood and our immune cells. The problem with multiple myleoma is 3 fold:
Your family never listens to you
My recommendation to my mother was to get hooked up with a good integrative practitioner (NOT ME!) and come at this thing with all guns blazing.
Her choice…of course…was no natural or alternative medicine, she would just do what the oncologist recommended.
<commence banging head on table> But of course your family never listens to you.
My mom begins treatment
My mom was connected to a really great oncologist, a really nice guy, empathetic, warm and kind. I’ve talked with him multiple times and I really like him.
Initially she was put on Revlimid (a thalidomide derivative, yes thalidomide that caused all those birth defects in children back in the day. Who knew it worked against MM?) which was hideously expensive but worked very well. For each month of treatment, her oncologist had to write a letter to the insurance company to justify the continuing expense. Even still the co-pay was really rough.
She was also put on Boniva (a bisphosphonate) to help prevent bone fractures. I am not a particular fan of this drug in otherwise healthy osteopenic or osteoporotic women, but remember, context matters. And things change when you have advanced cancer.
She also received a series of radiation treatments to the spine and hips to treat MM lesions.
This first line therapy was fiddled with a bit, but worked well for about 18-20 months, with my mom in remission and feeling good.
Over this time she still refused to see an integrated practitioner but was open to letting me start a few supplements. We were able to begin:
The first complication sets in
About 2 years ago, my mom was turning over on the couch, heard a pop and felt excruciating pain. She had fractured her femur (the big bone that runs from your hip to your knee). This is VERY difficult to do when healthy, but the MM had weakened the bone enough that rolling over was enough to break it.
She was admitted to the hospital and had a hip replacement done. She recovered quickly and was back on her feet after a few weeks.
I particularly hate the terminology of conventional cancer care that a patient fails the drug, rather than the other way around. So after about a year and a half, the MM escaped control of the Revlimid and began to grow again. Thus the conventional system would say my mother failed Revlimid. Ridiculous, Revlimid failed my mother.
The oncologist, brought out the second line drugs and over the next couple of months used various combinations and doses of Velcade. Unfortunately this was completely ineffective in treating the MM but did give my mom a significant case of peripheral neuropathy (the Velcade damaged the nerves leading to the feet causing numbness and pain).
Third times a charm
Dismayed the oncologist went on to his third choice, with the odds of success much reduced. He began varying schedules and doses of Melphalan (a nitrogen mustard derivative; yes, a descendant of the poison mustard gases used in WWI) and prednisone. We also bumped up her supplement protocol though she began to have problems with taking things and began complaining about the amount of stuff she was taking.
NOTE: Cancer treatment especially of advanced cancer requires powerful medicine. It’s not uncommon for a comprehensive cancer protocol to require dosing of 100 – 150 pills daily. Yes that’s a lot. And it can get quite expensive too.
To her oncologists surprise the third line therapy put her back into remission with a minimum of side effects. It’s my personal belief that it was the synergy of the supplements and medications that gave us the unexpected good results.
This lasted approximately a year or so, until about 3 months ago, when the oncologist and I saw signs that the MM was on the move again and escaping control. A candid discussion with the oncologist revealed that there were no other good treatment options left. Bad news.
About 6 months ago, my mom began to complain about increasing leg pain in the same leg as the hip replacement. Xrays showed nothing new. The pain persisted. Over the course of about 12 weeks the pain continued and we waded through bureaucracy of the conventional system. The next time someone makes the argument of rationing health care, I want to slap them. My mom has good health insurance and competent doctors, but she had to wait WEEKS for the appropriate scans and appointments, all the while suffering chronic pain. Could it have been worse? Of course. I also know that she would not be rapidly depleting all of her savings on medical care, and in danger of losing her house in other countries with ‘socialized’ medicine.
MRIs were negative, but finally a PET scan showed a fracture in the leg below the hip replacement.
3 months ago she was admitted to the hospital and the femur was wired and pinned back together. Over the course of 6 weeks or so she recovered and rehabed and finally was able to come home.
She began more radiation treatments.
We crossed our fingers and hoped we would make it through Christmas.
About 2 weeks ago, my mom began complaining of increasing pain in the same leg. We got her back quickly in for further scans and learned that the implants had failed. The femur is so weak now that essentially the screws pulled out of the ‘rotten’ bone.
She was given 3 options by the orthopedist:
My mom elected to try option 1, hoping to just get through Christmas at home instead of the hospital and then see how things were going.
At the beginning of this week, she complained of dramatically increased pain and we got her checked into the hospital. More scans revealed another fracture in the femur.
I spoke with the oncologist yesterday about her condition.
The prognosis is 6 months.
The major and more effective surgery has a recovery time of 9 months. Not good math. So in the next couple of days they’re going to repeat the previous surgery and cross their fingers. Odds, not great.
I broached the subject of a more aggressive integrated treatment plan with the hope of improving her quality of life and possibly extending her lifespan, maybe 9 months, maybe 12 months? Maybe a little more? But only if quality of life is reasonable. To his credit he was very open and said at this point he’s willing to support anything that’s not obviously dangerous.
So, I’m currently in talks with several integrative docs I really trust to see what type of treatment plan we can set up for her, because I’m not going to be the point man on this one. Your family won’t listen to you, and you should never treat them (for anything serious).
Where we’re going
Hopefully, if all goes well, my mom will be out of the hospital in a week or so and back in rehab, her oncologist has agreed to prescribe whatever natural regimen we come up with for her while she’s in rehabilitation so she can start right away.
We’ll see what happens
My plan is to update this series and let you know how it goes. If my mom chooses to really do the integrative treatment plan I’m happy to share the details with you so you can get an idea of what an integrative cancer treatment plan looks like and what it can do.
Other things to think about with sick family:
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Photo attribution – https://bit.ly/2Hx690c
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