It’s been two years since I was diagnosed with multiple myeloma. It has tried to kill me twice. The second time caused my oncologist to parse his words very carefully in front of me, “That was… that was a save. Mucor is usually fatal.”
I should feel lucky. – I do.
I should be happy to be alive. – I am.
Is It Anger Still
Apparently I’m angry. I’ve only just noticed, my wife is astonished I haven’t been aware for quite some time.
Anyway, my biggest problem is that cancer makes me angry. Not just my cancer, and not just cancer the disease, but everything that has anything to do with cancer. I get mad when someone is on TV, “He had stage 73 super cancer, but now he runs marathons for babies.”
Fuck that guy.
I saw a tweet about a useful resource in Conquer Magazine. I’ve never heard of Conquer Magazine, but my first thought was, “Fuck this. They suck.” Then, I judged their covers and decided they were too Journal or McCalls. It’s actually a well done magazine that tries to be a resource for cancer survivors and patients.
(I’m also angry that I’m not technically a cancer survivor since myeloma always comes back. I’m in remission, but it’s only a matter of time. I guess I’m a cancer pauser, or something.)
The resource came from Takeda Oncology. Yeah. I had crummy thoughts about them too, especially when I found out they make Velcade. I blame Velcade for some of my neuropathy.
Then I hated their color-coded chart.
All of these people were just trying to be helpful. (I can’t give full credit to Takeda. They charge obscene prices for their drugs like all companies that make drugs you need to keep living do. — It’s evil, frankly. Pure evil. — But, this chart wasn’t evil.)
I ranted on Twitter.
And then I came here. I might delete this later, but it’s important to know that even when you are in remission there can be negatives. Plus I haven’t updated here in a long time, so… here’s a freebie update.
This article is in progress as I put together resources on the latest multiple myeloma (MM) research for patients. This article represents advanced information about multiple myeloma for patients and care-givers that already understand the basics of multiple myeloma.
If you want to do your own search for real multiple myeloma research use the site operator on your Google searches. The way it works is that you search for your keyword and then add ‘site:gov’ at the end. This tells Google to only return results from websites that have a .gov domain.
You can go a step further and search ‘site:nih.gov’ but you’ll miss some things that way. Generally, just making it .gov filters out a lot of the noise.
Multiple myeloma research studies and papers I am looking at:
It is easy to forget that first and foremost, multiple myeloma is a blood disease. That means that in addition to being a cancer treated by oncologists, it is also right in the wheelhouse of hematologists.
This year, it’s the 62nd ASH Conference. Like most things this year, the conference was converted from a big meeting in San Diego, California to an all-virtual event to avoid issues from the Covid-19 pandemic.
Hematology and Multiple Myeloma
Obviously, not all of the presentations at a hematology conference have anything to do with multiple myeloma, but a lot a research does get presented at the conference. There are numerous Twitter users that do a good job of getting out summaries and notes about various presentations that might be of interest to the myeloma community, and, of course, to me.
One of the topics that keeps coming up is particularly disturbing to me.
An increasing amount of research shows that daratumumab is very effective against myeloma in almost every stage of treatment. Of particular concern to me is this concept.
If you’ve been following along with me, you know that last year, I was put on a dara and 10mg revlimid cocktail for my maintenance regimen post-ASCT.
We stopped the revlimid almost right away. I took four infusions of dara. During that time, my immune system blood numbers went down, and down, and down, until they basically hit zero.
Shortly thereafter I ended up in the hospital where otherwise trivial bacterial and fungal infections forced me into the hospital for pretty much the whole month of June.
My oncologist suspects that I had a rare reaction (Oh goodie, here we go, a rare cancer, and a rare reaction) to Daratumumab in which it affect my immune system, and apparently made me lose my stem cell graph. We had to reinfuse stem cells that were left over from my ASCT to get my immune system back.
So… unless something has changed, dara and me do not go together. This looks increasingly like a bummer as much of the research presented this year at the ASH conference shows how great dara is at treating multiple myeloma, in pretty much all phases of the disease, and how adding it to other standard treatments improves outcomes in myeloma patients.
What Next Myeloma Treatment
If it sounds like there isn’t really a point, and that I’m mostly whining, you are not wrong. Fortunately, there were a lot of other presentations that I haven’t even got to looking at yet. There may be alternatives, and there are definitely new things coming down the pipeline.
It’s hard not to be encouraged by sentiments like this:
No matter what any CBD zealot tells you, CBD oil will not treat or help your actual cancer in any way. However, CBD can help many of the side-effects you get from from cancer.
I have multiple myeloma, a blood cancer. Like many of my fellow myeloma warriors, our cancer causes pain. CBD oil helps pain in some cases, but not all. It’s important to find out if CBD oil will really work for you.
Recommend CBD Oil for Neuropathy
One common reason to for cancer patients needing CBD oil is the pain caused by neuropathy. Neuropathy exists outside of the cancer population as well and has numerous causes. For cancer patients CBD is typically needed after chemotherapy causes neuropathy.
Neuropathy pain is tricky to treat. Some patients respond very well to some treatments, while others don’t respond to similar treatment. I take gabapentin three times a day. I know others who take higher or lower doses. Gabapentin is well tolerated in most people, so oncologists have no problem kicking up the dosage.
Sometimes though, even high doses of gabapentin don’t help. For me, the gabapentin helps quite a bit, but I still have significant pain in my feet. As you can imagine, this is limiting when it comes to being able to walk long distances or stand in line. This is a particular problem for my desired cancer comeback trip to Disneyworld and Universal Studio.
My physical therapist recommended CBD oil, but only after saying check with your doctor first. My oncologist said it was a good idea, and couldn’t hurt.
CBD Oil and Neuropathy
I live in Colorado where CBD oil, and marijuana itself are legal. It’s pretty easy to come by, maybe too easy. Both my PT and my doc warned me that CBD oil is not well regulated, and many oils are mostly just oil.
The solution is to buy CBD oil from a dispensary, instead of Amazon, or the back of the grocery store. The catch is that once I got to a marijuana dispensary, the very knowledgeable, and very honest, sales person informed me that to actually penetrate into the nerves and help with neuropathy, I would need higher concentrations than available as “recreational marijuana.” What I needed was “medical marijuana.”
I didn’t realize there was a difference other than licensing and taxes.
Effective CBD Oil and Neuropathy
The salesperson (excuse me, “budtender”) also recommended a tincture of at least 2,000. (I forgot the units). This got me wondering:
a) is CBD oil really effective for neuropathy?
b) if CBD oil is effective for neuropathy what dose is required?
c) is CBD oil not effective for neuropathy?
d) if CBD oil is not effective for neuropathy what is?
Like most people my first instinct was to Google. The top several results were dubious at best, composed of phony colleges, institutes, and organizations. Fortunately, the NIH was there to save the day.
The NIH, or National Institute of Health is a government organization that offers actual research studies on numerous topics, including legitimate CBD oil research and real CBD for neuropathy research included. Of course, this result is half way down the page, because the NIH does not spend big money and time on using SEO to rank highly for CBD topics.
There are two important things this true research about CBD oil for neuropathy in the feet tells us. The first is that yes, it does help neuropathy pain. Second, it tells us what dose they used. Most published research happens after the scientists involved already put some effort into the parameters. In other words, they already had and idea of what does would work for neuropathy of the feet. The does in the study was 250 mg CBD/3 fl. oz.
This means I’m looking for that dosage of CBD oil to be effective on foot neuropathy. Where do you find CBD oil for neuropathy and what does it cost? Most importantly, does CBD oil work for neuropathy from chemo?