Letters From Cancerland: Reefer Madness
I have a good friend who’s been bugging me lately about my health. Call him Bob (which is, in fact, his real name). Bob and I have been friends for almost 30 years, despite the fact that we have not seen one another for almost a quarter century. Bob and his wife have lived in Alaska for the last 22 years, so all of our contact is by phone or email.
Bob is a “fixer.” Bob is a lot of things, to be honest, but high on his list of personal attributes is that of fixer. You have a problem? He wants to fix it. The nation or the world has a problem? He wants to fix those, too. A lot of his fixes are more talk than anything, but his heart is in the right place.
For the last year or so, Bob has been trying to fix my myeloma. So I am often the recipient of email links (“April, you need to read this!”) and lengthy phone calls about whether I have tried or would consider trying or would at least talk to my oncologist about this supplement, vitamin, injection, whatever.
By the way, Bob is not a doctor. His wife is a doctor, a recently retired internist with the Veterans Administration system, but she is not the man behind the curtain directing these phone calls. It’s all Bob.
I put up with his calls and suggestions, which range from laughable to annoying, to a degree far beyond my usual tolerance for unsolicited and unwelcome medical advice. Why? Because it’s Bob. That 30-year history is pretty strong.
Bob’s latest call was all about marijuana, now that it’s legal in Colorado and Washington. He’s been researching marijuana. There are two strains of it. Some of it has no euphoric effects. He may be going to Colorado soon to get some for his own medical problems. He knows what strain he should get for himself. He has some ideas about what I should get. He could get me some. It would make me feel better. He’s not saying it would cure the myeloma (a tack he took in one phone call months ago) but I should try it. He knows all this because of his extensive research.
Bob, Bob, Bob.
Some basic facts about me. One, I never inhaled. Two, I work for a court in a state in which marijuana is ILLEGAL. Three, I’m not interested, even if it were legal here in Ohio.
I related this to Bob, and he came back with “I know! I know! But this might just help you! Consider it! Do some investigation!”
It was like being stuck in a bad Cheech and Chong skit, only they had funnier lines. (At least it seemed that way when I was in my twenties.)
My day job is that of a mediator with our local juvenile court. Recently I mediated a delinquency where the young offender took the very bad legal advice (“You don’t have to tell the cops your name!”) of another teenager with her and ended up with multiple charges as a result. I asked her where and when her 15-year old co-defendant went to law school. She looked at me in a puzzled way, and I pressed the point. “Well, you felt you could rely on his legal advice, so I figure he must have gone to law school somewhere.”
I told this to Bob and, to his credit, he roared with laughter.
“I know! I know! I’m not a doctor! But I’ve done my research!”
My oncologist and I think (believe, hope) that my myeloma is flat-lined at present. I’m waiting on one more set of lab tests later this month before I feel it as strongly as he does, but the evidence is certainly pointing that way. That’s the good news.
The flip side of that coin is that, after 10 years of the disease and almost 10 years of off and on treatment, the physical toll of treatment and disease on me has been significant. My current companions are fatigue and a rolling sick feeling that I can only describe as being hung over without any nausea or aches.
We (the medical “we”) are coming to the conclusion that these things are just the cumulative effect of the last decade. As the late Arnie Goodman wrote in one of his columns for the Beacon, “Multiple myeloma takes its toll. A physician once told me that, between the disease itself and the treatments, it wears you down.”
And that’s where I probably am now: worn down.
But back to my well-meaning friend Bob. He might as well be quoting the 1936 movie, Reefer Madness: “Bring me some reefers!”
And I’m shouting back with Tommy Chong’s line from Up in Smoke: “HEY! MELLOW OUT, MAN!”
April Nelson is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of her previously published columns here.
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
Hi April, Thanks for the interesting column. I am so glad to hear that your myeloma seems to be better controlled now, and will pray that it continues that way too!
'Medical marijuana' is legal in Canada, although I am not interested in it either. But once I was at a support group meeting and someone was telling me about how he could get that cheaper in Montana! I realized that maybe he had issues with pain or nausea that I don't and thus found it helpful to take the medical variety. Beyond that, I don't know much about it, but if it helps some people, I am OK with that too!
You're lucky to have a Bob in your life. Many of us have nobody.
Well, imho, a day without cannabis is like a day without ... a day without ... wait, just a minute, it will come to me ... like a day without ...
You know, short term memory is HIGHLY overrated anyway!
Now where did I leave those Doritos!?
Steve: best column response ever.
April,
First, glad to hear your mm is stable. Especially good news at ten years in! In January I'll be 12 years from official diagnosis and I say this not as a boast but like you, April, as evidence that the new treatments carry tremendous hope for all of us. Sure there have been very tough spots during the treatment, but no matter how sick we might get, the key has been to just make it to the other side.
From my experience, 90% of us men think we have to be 'fixers'. It was a big topic during my marriage counselling some years back. I never figured out whether it was the fixer thing or the never say 'should' element that I failed at. Anyway, I am good at being solo.
Funny, I don't drink alcohol but when they open the medicinal maryjane depots here in Boston, I'll be trying it out. I do hope they offer the 'euphoric' brand.
Best to you April ...
Hi April,
Congratulations on 10 years and good luck with your next blood tests!
How do you say no to these helpful people! I have a big sister who was really upset when I was diagnosed and has taken it upon herself to find a cure for me. She is constantly giving me books and anything that people give her that is the 'new' answer. Trouble is, she doesn't use a computer and has no idea whether the info is good or bad. Then she hounds me, asking what I think, and after researching her latest find I have to break the news to her that it's not really a go.
I tried to explain last time we spoke on the phone and she agreed it could be difficult to be in my position (after she told me I shouldn't be taking all these drugs), and the conversation ended with her telling me water is the answer and she is going to send me a book ...
She's a psychiatric nurse and cannot see she is driving me crazy!!
But I love her so much I just don't want to hurt her. You are amazing coping with 10 years of it. I haven't made my first year yet.
And some days it makes me laugh just thinking about it!!
Jen
Hi April,
I agree with most of the people posting here. Glad you are doing well as these things go with MM, but mostly I agree with Stephen. Men tend to be fixers, including myself – 40 + years fixing airplanes. I also fixed a situation where a young fellow worker who had a daughter with cancer was being displaced to another station. I approached the regional manager with his assistant and explained that we had a senior mechanic who could probably be talked into changing places with the junior mechanic. The ASSISTANT immediately chimed in that company policy did not allow that. Fortunately for the younger mechanic, the regional manager had more compassion and, after I explained how I thought it could be accomplished, he agreed and said he would see what he could do. Within two weeks, the senior mechanic took the move, leaving the junior mechanic and his sick daughter at our station with her current oncologist! The regional manager's ass---tant never forgave me for my suggestion. But I could care less!
I am more open to suggestions and do research. If I think it's prudent, if it won't hurt me, and I think it might do some good, I give it a try. I am in your same range as far as survival (about 10 years). 3 things I have tried and found favor with are: black cherry juice, vitamin D3 (2000 IUs) and resveratrol. Are they doing any good? Don't know for sure about the vitamin d3 or the resveratrol, but I can guarantee you that the black cherry juice is helping my back and other arthritic conditions.
Give Bob a big hug for me next time you see him. He cares! N.G.
As for Steve :::: Ya gotta let that bong cool down at least once a day and go outside and get some real air. Also, there are other ways of using that stuff for those people who are in medical need of it, rather that tarring your lungs to the point of failure ... drops, cookies, etc.
I've never used the stuff but I can guarantee you if I get hurting bad enough I'll probably give her a shot. It has less bad side effects than most of the opioid products on the market. They had me on morphine for about 2 months and no thanks to that dope. N.G.
I have gone through the whole you-should-try-marijuana rodeo too with people I know. I had lost nearly all my appetite and had stopped eating. I was losing weight fast. Then somebody told me about Marinol (dronabinol), which are synthetic THC pills you can get a federally recognized prescription for. When I first heard this, I did not believe it. I had never heard of it before. I thought the FDA and DEA were opposed to any medical use of marijuana or marijuana compounds and grown cannabis was the only way to get it. I would have heard about this if it were true. THC is known to be appetite stimulant, so I thought this might be worth asking my GP about. I was starting to get skinny.
I asked him at my next appointment and he said yes, he could prescribe that and I could pick it up at my HMO's pharmacy, which I did right down the hall after the appointment. I work for the federal government and have a security clearance, for which I am subject to random drug testing. I asked what would happen if I tested positive and explained what dronabinol was. I was told that as long as I had a valid, federally recognized prescription, not one just recognized by the state, I was good. I had that prescription, so I tried it.
I had not had any THC before, so I did not know what to expect. I can say I did not notice anything, but my GF said that I seemed a bit more relaxed. I was already adapted to opiates at this time, so maybe the THC effects where just a small blip to me. It did not do much, if anything, to increase my appetite. I eventually lost 55 lbs (25 kg) and my weigh dropped to 156 lbs (71 kg) and I am 6’ 1” (1.85 m).
I'd like to clear up some misconceptions about cannabis. There are many different cannabinoids, the active chemical components in cannabis. The most well know is THC, which is what is actually regulated with cannabis. THC is psychoactive and is what gets you"high". CBD, cannabidiol, is probably the cannabinoid that your friend Bob is referring to. CBD is not psychoactive and will not get you high. Recently research from Italy in a peer reviewed medical journal describes the benefit of CBD with and without chemotherapy to kill multiple myeloma cells. I'll include the abstract below. To get the most benefits, you also do not smoke you. You ingest it as an oil. CBD is not technically regulated and you can purchase it in any state. Just go on to Amazon and type in CBD oil and you will find several products you can purchase. However, these products probably do not contain the concentrations of CBD necessary to treat cancer. You would probably have to go to a state that has medical marijuana to get the proper concentrations of CBD, and even then, it is difficult to find high CBD strains of cannabis. The demand is high and the supply is short for high CBD strains because of the many medicinal benefits of CBD. For example, CBD has been found to be the only effective medicine for some seizure disorders in children. Google "Charlotte's Web Oil" to learn more. I'm hoping with more education, people will be more open minded about the use of cannabis for multiple myeloma treatment.
Int J Cancer. 2014 Jun 1;134(11):2534-46. doi: 10.1002/ijc.28591. Epub 2013 Dec 2.
The effects of cannabidiol and its synergism with bortezomib in multiple myeloma cell lines. A role for transient receptor potential vanilloid type-2.
Morelli MB1, Offidani M, Alesiani F, Discepoli G, Liberati S, Olivieri A, Santoni M, Santoni G, Leoni P, Nabissi M.
Multiple myeloma (MM) is a plasma cell (PC) malignancy characterised by the accumulation of a monoclonal PC population in the bone marrow (BM). Cannabidiol (CBD) is a non-psychoactive cannabinoid with antitumoural activities, and the transient receptor potential vanilloid type-2 (TRPV2) channel has been reported as a potential CBD receptor. TRPV2 activation by CBD decreases proliferation and increases susceptibility to drug-induced cell death in human cancer cells. However, no functional role has been ascribed to CBD and TRPV2 in MM. In this study, we identified the presence of heterogeneous CD138+TRPV2+ and CD138+TRPV2- PC populations in MM patients, whereas only the CD138+ TRPV2- population was present in RPMI8226 and U266 MM cell lines. Because bortezomib (BORT) is commonly used in MM treatment, we investigated the effects of CBD and BORT in CD138+TRPV2- MM cells and in MM cell lines transfected with TRPV2 (CD138+TRPV2+). These results showed that CBD by itself or in synergy with BORT strongly inhibited growth, arrested cell cycle progression and induced MM cells death by regulating the ERK, AKT and NF-κB pathways with major effects in TRPV2+ cells. These data provide a rationale for using CBD to increase the activity of proteasome inhibitors in MM.
Hi April, thanks for your thoughtfull columns. Well, I am also a male fixer and I am hoping I can fix my MM and get to 10 years also. So maybe you can help us all by listing for us the kinds of treatments you have had, the kind of MM you have, and any other lifestyle habits and or special diet plan you have that maybe you believe has been helpful. I wish you the best as I do for all MM survivors.
Paul
April,
Thanks for another great column. Congratulations on your first 10 years with MM. And here's to the next 10. And the next 30 years in your friendship with fixer Bob.
Ralph,
I saw your comment yesterday, and it stuck with me all night. You're right - not everyone has somebody like Bob that April described. Everybody needs someone they can talk with. If you want to talk, feel free to private message me in the forum and I'll give you my phone number (if you're a forum member, this link will take you to my forum profile, where you can click on the private message link). One of the most important things about the Myeloma Beacon to me was helping me discover that I am not alone in dealing with this disease.
Paul asked what treatment I have done for the last 10 years. It's not an extensive list.
Out of the gate, I went into a trial studying whether myeloma patients got better results with tandem stem cell transplants than a single. Prep for the stem cell transplants involved high-dosage thalidomide--I was taking 400 mg in 21-day cycles, along with lots of dexamethasone (and I do not remember the dosage cycle on it). Thalidomide started in January 2005; my first SCT was June 2005, the second in August. Thalidomide resumed 60 or 90 days afterwards. Had less than stunning results--90 days afterwards a bone marrow biopsy showed renewed activity. (And the study results were that tandem SCTs are no more effective than single.)
I started to have a lot of neuropathy with the thalidomide, so my oncologist gradually cut the dosage back. First to 200 mg, then 100 mg. I no longer remember if I dropped below 100 mg; I think I may have. I continued on thalidomide/dex until sometime in 2007 or possibly early 2008. My labs stayed steady in that they showed some mm activity (IgG drifting upwards slowly, for example).
Once I stopped the thalidomide (due to neuropathy and stable lab results--yes, there was myeloma but it wasn't doing anything), I had no further treatment until late 2012, when my oncologist started me on Velcade injections. Labs had been very slowly drifting in the wrong direction, my overall well-being (energy, weight, quality of life) started failing faster. I did about 6 cycles of Velcade (with a dex chaser)--Velcade made no significant impact on my labs and was making me physically ill, so we discontinued that.
I went through the rest of 2013 (April 2013 on) with no treatment. Labs continued slow drift, physical well-being took a steep slide in late 2013--rapid weight loss, decreased muscle mass, no energy. I was restaged in January 2014 and began Revlimid in February 2014. Initial treatment was 25 mg daily over 21 days, 20 mg dex days 1, 8, 15, one week off. I did not handle the Revlimid well (lots of side effects) so my oncologist cut me to 15 mg daily over 21 days, dex stayed the same, 2 weeks off between cycles.
That has worked. Labs have improved significantly. It took a lot longer for my overall physical well-being to catch up and improve--a work in progress. Many of the worst Revlimid side effects have subsided, other than increasing neuropathy (and the neuropathy never fully resolved from the massive doses of thaliomide). That's my treatment history.
I did not change my diet and follow no special diets. I am not a vegetarian, but I don't eat huge quantities of meat either. I have no food allergies and am lactose and gluten tolerant. My main form of exercise is walking; I used to swim, but gave it up in 2012 when my overall health went downhill and have never returned to it.
That's my story. Kind of plain and ordinary. I have a good friend who is 13 years out and basically having his first treatment in 12 years: a short cycle of Revlimid (although the oncologist may add Velcade to his regimen) and looking at possibly a second SCT 12 years after the first one. The Revlimid is to bring down his M-spike and other labs before the transplant.
Myeloma is a highly individualized cancer. What works for myeloma patient A has no effect on myeloma patient B and patient C has entirely different reactions. The phrase that always come to my mind when thinking/talking about myeloma is sui generis. Myeloma and its treatment are the epitome of that concept!