Myeloma In Paradise: Thinking Outside The Box
During our recent holiday extravaganzas, I was able to spend time with lots of folks who I only see once or twice a year. Along with the frequent “you look good” greetings, I received lots of advice on how to take care of myself. This advice ran the gamut of new cures, the latest supplements I can’t live without, how “somebody’s uncle” changed his life by eating only black beans and brown rice (really!), to simple dietary suggestions.
I have long ago come to grips with the fact that this advice is well meaning. I try hard to avoid getting into an argument over what double-blind testing is all about and why I think it is important. Most people don’t want to hear about science anyway; they mostly just want to help me in their own way.
Unfortunately, I think this sometimes causes me to throw out the baby with the bathwater, so to speak. I wonder if some of this advice is worthwhile and my predilection to tune out much of the advice I receive may be causing me to miss something important.
One of my weaknesses – which at the same time is also one of my strengths – is that I can be overwhelmingly logical.
Yet, as my wife is fond of pointing out to me, the shortest, most direct way to a destination is not always the best. What about the beautiful flowers along the less direct route? Do we really want to miss the great fruit stands on the longest route?
Left to my own devices, it won’t even occur to me to consider those factors. I will go the quickest, most logical way.
When it comes to the treatment of myeloma, I also can get pretty myopic. I have decided on the path I want to follow, and I stay on this path at all costs.
But I wonder: Is this the right way to go? I am currently at a stage of my cancer where I have no debilitating symptoms of myeloma. I have no lesions in my bones, nor do I have organ failure. However, a very high percentage of my bone marrow is unfortunately affected by myeloma, and I also have a high light chain count. Other than fatigue and symptoms caused by my Revlimid (lenalidomide) and steroid treatment, I feel pretty good. I am just waiting for the other shoe to drop.
My current plan is to continue the Revlimid and steroid therapy as long as I respond to it and then get an autologous stem cell transplant when the regimen fails. All pretty logical, by-the-book treatment.
But what am I missing? Is there something we are all missing?
Should I try the gluten-free diet? What about the carb-free diet? How about oxygen saturation treatment in a hyperbaric tank? Getting stung by lots of bees?
Are my free radicals at the right level? Should I be eating only superfoods? Maybe a pure açai berry juice cleanse will help. Is fasting the way to go? Maybe a pure, organic vegan juice enema will make a difference. Acupuncture? Cupping? Chakra adjustment?
This doesn’t even scratch the surface of non-traditional treatments, which include food supplements, non-GMO diets, and Chinese herbs.
I don’t know about you, but I find this all pretty overwhelming. No wonder I have to consciously keep my eyeballs from rolling back into my head every time somebody suggests something new. It’s not that I don’t think most of these things would be good for me in one way or another. I just don’t believe they will cure my myeloma.
But what if they are right? How far out of the box should I be thinking?
A program our family supports is a group called “Tabitha Cambodia.” One of Tabitha’s initiatives is to drill wells so that villages in Cambodia have access to water in order to grow food crops. Wells, though, are sometimes not enough to solve the problem. Tabitha’s director recently wrote that some families don’t have enough land to grow sufficient food to feed themselves.
This problem was going unresolved until one of the organization’s local managers suggested that these families try a non-traditional crop – crickets! It turns out that crickets are a delicacy in Cambodia, and the space under a typical family’s house is perfect for raising them. By thinking outside the box, Tabitha helped a number of families make enough money to provide for themselves, and those families even taught some of their neighbors how to raise crickets.
This was very motivational for me. Maybe I need to think outside of my box.
This can go beyond just my myeloma treatment. My “box” includes the way I approach my work, my family, our family finances, and my hobbies. All of these items affect my health.
What’s interesting is that, for many years before my myeloma diagnosis, I always considered myself a medical non-traditionalist. I believed in my body’s inherent ability to heal itself, and I eschewed most antibiotics and other “normal” medical treatments.
In fact, in my search for an explanation for my recurring colitis, I found that “normal” treatments were quite ineffective. All that really worked to alleviate my symptoms was to completely stop eating – the epitome of a clean diet.
Once I received my diagnosis of incurable cancer, though, any thoughts of non-traditional treatment went quickly out the window. I needed to live long enough to see my children through to adulthood, and traditional western medicine seemed to have a way to achieve that. My logical mind took over and I decided on the path that made the most sense given what I want to accomplish. I’ve focused on that path ever since.
I also continue to believe I made the right decision.
But what am I missing out on?
As I see it, I don’t have the option of experimenting. I owe it to my family to go the double-blind tested, “normal” way. My chances of living five to ten years seem promising even if I am in a bit of a chemo fog. If I was older or childless, however, I think I might be more inclined to roll the dice and go for a cure without the fog.
What about you? Any chance of some bee stings or hot cups in your treatment future?
As for me, I will continue to try to get past my box - if not in my medical treatment, at least in the path I take to get home from work.
Aloha and Carpe Diem!
Tom Shell is a multiple myeloma patient and columnist here at The Myeloma Beacon. His column is published once a month. You can view a list of his columns here.
If you are interested in writing a regular column to be published by The Myeloma Beacon, please contact the Beacon team at .
I went thru this same argument with myself 20 months ago. So, like you, a logical scientific oriented person, I began my research. I learned that many people choose many different types of treatment options. I also learned it didn't make a whole lot of difference in a positive way. The dent it made in the negative was astounding. Especially when it came to morbidity rate. From what I've read, one of the biggest reasons we are now moving into a longer life span with multiple myeloma is due to professional treatment with a specialist in a well accredited center. That, combined with research subjects becoming more available, we are moving in leaps and bounds in a very positive way.
I'm not saying the other options out there are better or worse for the person who took them. Or that this option is any better or worse. But one point they do tend to harp on repeatedly is our outlook and our attitude as a patient and how it can effect our treatment choices so drastically. I believe what we have to do is educate ourselves thoroughly and make the right decision for us on an individual basis. We will be more likely to stay with it, have positive results, and live longer.
And that's always good.
Thanks for the interesting column, Tom. I have also received many 'helpful' suggestions as to how best to recover from cancer, over the last few years. I just tell people that the myeloma treatments now available are what is keeping me going, and that is what I will stick with for treatment. Since my recent relapse, the 'Rev/dex' combo is keeping my myeloma under control, and that is my goal as a patient. Having experienced some of the worst that the disease has to offer, in the form of compression vertebral fractures, I am highly motivated to keep the myeloma at bay.
In Hawaii, you have such wonderful fresh tropical fruits and vegetables, which I think are very healthy! It is awesome to see guavas, bananas, mangos, lychees, and coffee beans growing there. When you mentioned stopping at a road side fruit stand, it reminded me of how my husband and I stopped at such a stand in Maui recently. We drank the coconut water right from the coconut, and then took back the 'meat' of the coconut to eat later. Apparently coconut water is very healthy, and contains the right balance of nutrients to prevent dehydration. The 'water' is not the same as 'coconut milk', which is made from the meat and contains saturated fat, and should be used in moderation.
http://www.bbcgoodfood.com/howto/guide/ingredient-focus-coconut-milk
I hope you find the article to be interesting, and I don't think that eating in a healthy way is 'alternative' medicine, and it may make one feel better! Aloha!
Thanks Tom for your column. I hear your thoughts as they are mine as well.
As far as I know, the new opinion is that foods are less important for battling any cancer as was expected in past years. In case of multiple myeloma, you have to keep your bones as healthy as possible, meaning vitamin D3 levels and calcium should be sufficient, but be aware that when your mm is active you should take no calcium because it will be already too much in your system from breaking down your bones. If you are in remission, than you should start calcium again. As for vitamin D3, I take daily 6000 international units. It is proven that, without D3, a healthy bone recovery process will not work. The only other thing I really use is turmeric. For now, it is not really proven to work, but they have high expectations from its benefits, antioxidant wise. To strengthen my bones, I also have every 4 weeks an IV with zoledronic acid (Zometa).
Unfortunately we are depending on chemos, steroids and special target pills as Revlimid to fight the mm cells. Good food, though, is helpful for our overall condition. My goal is to die as healthy as possible so I can be as active as possible as long as possible.
Take care, greetings from rural Wisconsin.
What we are doing is simply trying to live a stress free life and laughing alot.
Another column that could have been written about me. I guess it should be no surprise that a lot of us go through similar experiences and have similar thoughts about our strategy to fight myeloma. I also wonder at times if I am missing something, but I do not believe I am.
My thinking is that, if any of these non-traditional cures were really that effective at fighting myeloma, it would be known by now. The majority of these non-traditional cures and therapies have been around for several to many decades, and many who have come before us have tried them.
But, to keep an open mind and think out of the box, I wonder if the some of them may be a somewhat effective or possibly work well in combination with novel agents drugs, much like many of the new drugs being developed do not necessarily show good single agent effectiveness, but do in combination with other drugs. I would be cautious to experiment with this on myself not knowing what the possible interactions would be. It is entirely possible that combining a non-traditional with traditional may do more harm than good.
For example, when I was first diagnosed and my friends and family learned of my condition, I had more than one person tell me that I should drink green tea and take green tea supplements to fight my myeloma. Many were surprised and a bit dumbfounded when I told them that that would completely render the Velcade I was taking ineffective. Many people drink green tea and take green tea supplements to ward off or fight cancer, and I have to wonder how many people with myeloma were on Velcade and taking green tea, rendering their Velcade treatment completely ineffective before the neutralizing effect of green tea on Velcade was discovered. I suspect a lot and it is a bit disheartening to think about what the possible consequences were for their outcome.
Another consideration when thinking about “non-traditional” treatments or therapies is a Beacon reader who was looking into clinical trials was told that, for some trials, if they were also pursuing non-traditional medicine or had ever had some type of non-traditional or unconventional treatments, they would be excluded from the trial.
Tom,
Even though I have been through the same, and am currently in remission, I still get suggestions on various "cures" I need to try or diets I should use! They mean well, and I love them all. But, with my current situation of being in remission, I am thinking "out of the box" for the near future! I study and read about all the new treatments that are being studied for relapsed MM Warriors. I keep a notebook for things I've heard, read about, or was told about, for that inevitable day when the beast rears its head! Which hospital or clinic is doing this or that in multiple myeloma.
This way, I'm well read, versed, and knowledgeable of the fight I may (if a cure is found) have ahead. This is my way of dealing with "terminal" cancer. And let's not forget, I'm still waiting to find out if I have breast cancer on top of it all!
Never fear, I plan on fighting that as I have with MM, head on and logically. I got one opinion and it was " off with her breasts". So I sought another opinion, and it is better! So many more options and hopefully no more cutting!
Keep strong! I send you strength and well wishes!
Mary
Tom - Great thought provoking column as usual!
Until these non traditional remedies have valid data to support their claims, I will "stay in the box" with traditional treatments that do have valid data to justify their use. This was reinforced to me when I met with the nurse practitioner on my medical team this morning to discuss maintenance therapy. I have been contemplating delaying any treatment since my stem cell transplant this past June until my numbers start spiking again. The fact that she was able to cite data that shows maintenance therapy post transplant delays relapse on average by 30 months convinced me that maintenance therapy was the route to go. The fact that my medical center is a major cancer research center gives me every reason to trust that data.
Some may label that dumb, blind trust. Until that blind trust gets broken, I'll stick with years of data, clinical trials, peer reviews, and individuals whose entire lives are dedicated to treating this disease and finding a cure.
Steve
Traditional medicine evolves in time: medical trials, new discoveries, progress. From what I understand, instead, homeopathy, acupuncture and other alternative cures have remained the same for centuries. The fact that life expectancy for MM patients is higher than a decade ago is due to newly found medicines, and the hope for a cure can only come from traditional doctors.
But you are right, Tom, a lot of people don’t want to hear about science, they just want to help in their own way. For instance, a couple of friends of mine just go "I know that you will be alright, I FEEL that, trust me!" Am I supposed to stop worrying after hearing that?
Aloha Steve,
I agree that I want to listen to those who devote their lives to getting this right. What's hard is taking a heavy duty drug like Revlimid when we seem pretty healthy.
Unfortunately, that is what the data says to do, and data is unemotional, with no opinion, and no axe to grind. This is the reason I, too, give it my "dumb, blind trust".
For now, I want to enjoy 2015 to the best of my ability!
Aloha,
Tom
Thomas
Read the two part Myeloma Beacon guide to nutrition for myeloma patients. Nutrition, exercise – both physical and spiritual – are all immense in their abilities to enhance our survival with style. Personally, I use alternative and natural approaches to healing, all with the Revlimid, dex, Velcade. All this makes life more normal. I had one cold in the last two years, no flu or other infections, no neuropathy, neutropenia, or other blood irregularities. I do all the activities I used to do, albeit a little slower, but life is good. I credit all the forms of healthcare for making it that way.
Dearest Tom,
What a seemingly timely article. With all I have been through with your dad, we live with constant remedies for making his M.S. better or curing my arthritis. It is the way of loving and well meaning family and friends. Just take in the love and throw out the rest.
Love,
Mom