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A Patient's Blog: The Side Effect That Dares Not Speak Its Name

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Novel therapy agents are a mixed blessing. Yes, they are helping me and a number of my fellow multiple myeloma patients to live longer. And compared to the harsher cytotoxic agents that many patients with other types of cancer are forced to take, the side effects for most of us aren't so bad.

But with more of us using maintenance chemotherapy for longer periods of time, the side effects can become harder to manage. This is especially true for those of us who have had a stem cell transplant. I seem so much more sensitive to most any drug I take now.

Just because a side effect isn't life threatening doesn't mean it can't negatively affect our quality of life. Last week I focused on nausea. This week I would like to share some tips for how to control another common therapy side effect--constipation.

Isn't it funny how the same drug can have such a different effect on different people? For example, I know several patients who get diarrhea from using Revlimid®, Thalomid® or Velcade®.

But in my experience, it is much more common for patients who are using these chemo drugs to experience constipation. Mix in a variety of other medications--especially pain killers like oxycodone--and chronic constipation is almost guaranteed.

Let me share how I overcome my day-to-day constipation challenges.

Regular exercise can help. So can drinking lots of water. Yet as many of you may have already experienced, simply staying active and changing one's diet may not be enough. But it is the beginning to a long-term solution.

I start my day with a vegetable smoothie that includes spinach, tomatoes, carrots, celery, cucumbers, kale and milled flax seed. And I eat two or more vegetables at every meal.

Since I'm on a low carbohydrate diet, eating a lot of sugary fruit isn't practical for me. But blueberries, strawberries, raisins and a few prunes can also help.

But modifying what you eat by adding a wide variety of fiber-rich foods is only a start. I quickly learned that no matter how many vegetables I ate, it sometimes wasn't enough.

I never liked the idea of using a product like Metamucil or over-the-counter stool softeners for an extended period of time. Instead, I use a safe and simple substitute--magnesium.

Magnesium is the number one ingredient in a number of laxatives. It is inexpensive and has the added bonus of helping prevent cramping caused by taking Thalomid or Revlimid.

You can experiment with how many magnesium tablets to take and when. I'm not a physician, but I believe the worst that can happen to you if you take too much magnesium is a case of the "runs."

For me, a 100-mg tablet or two with each meal--along with my high fiber diet--is enough to keep me close to regular.
I already mentioned how I add milled flax seed to my morning smoothie. Flax seed is an amazing food, full of omega 3's and fiber. So is wheat germ. Sprinkling one or both of these concentrated super foods on your cereal is both good for you and can be a "constipation buster."

Over the years I have received a number of suggestions from readers about ways to overcome constipation. I would like to share a few of those with you now. Because what works for me may not work for you:

    • Drink a large hot glass of water with lemon slice every morning
    • 2 or 3 tablespoons of mineral oil daily
    • 2 or 3 tablespoons of coconut oil as needed. They also agreed adding flaxseed can help
    • Probiotics help prevent the problem before it occurs. Eating yogurt with natural cultures daily is the most common way to build up the live microbial organisms that should be active and present in everyone's digestive tract. I have been told that Kefir, sauerkraut and Asian foods like kimchee, natto, tempeh and miso can all be incorporated into your diet to help build up the natural digestive process
    • Using herbal teas containing rhubarb, aloe, senna or buckthorn
Try to remember that overusing laxatives and/or stool softeners can make the problem worse. This also applies to the herbal teas I mentioned above.

Also remember, multiple myeloma patients tend to take a lot of calcium, which can cause your muscles to contract and make constipation worse. Again, magnesium helps counteract this problem.

All set? Next week, I will suggest ways to deal with side effects caused by "demon dex," or dexamethasone.

Until then, feel good and keep smiling! 
 
Pat

15 Comments

My husband of 40 years was diagnosed with MM in Feb of 2011. We were told that they do not measure the life span of myeloma patients in months, but in years. He had excellent care at Mass General in Boston, but as luck was not on his side, developed gastrointestinal amyloid and within 35 days died. The myeloma at the time, after one round of chemo was in remission. I would like to hear from anyone who is familiar with amyloid as related to multiple myeloma. Thank you. Katy

Katy, that sounds so hard. I can't say I'm exactly familiar with amyloidosis as it relates to multiple myeloma but one of my friends in the local myeloma support group developed it, and so a couple of us started going to the quarterly amyloidosis support groups with her, to help advocate for her.

Here is some contact information for you:

Muriel Finkel/Amyloidosis Support Groups Inc / ASG / 501 ( c ) 3 Charity / 232 Orchard Drive/Wood Dale IL 60191 / www.amyloidosissupport.com / Toll Free 866-404-7539 / www.amyloidosisonline.com

Kim

Thank you very much for your blog ... amid the scientific research stuff, I very much need your basic personal comments. Diagnosed in Oct 2010 with very early stage 1 and no bone damage or pain. Spent 12 months on velcade before it lost effectiveness. Now on 10 mg Revlimid and 1 mg dex per day. I know that compared to many I am a fortunate MM patient, however, the variety of side effects are less than enjoyable:fatigue, PN,face rash from Revlimid

Hi Pat. Got your book on SCT - thanks so much. I am relatively new to this journey, but have found (through the help and suggestion of my father) that psyllium husk helps to add a great deal of fiber to one's daily intake. I am on Rev/Dex/Aredia plus Hydro and was having some issues trying to work out how much and often to take miralax and senokot. Since starting the psyllium husk (which I take mixed in 10oz of "Plum Smart" juice) I have had no real problems staying regular. I realize that may change as my time on this regimen progresses, but it seems to be a good enough start. I'll take it.

On an unrelated note, your blog has been a Godsend in the couple of months since my diagnosis. Thanks so much for all of the wonderful information.

Is there a difference between a Magnesium supplement and Magnesium Oxide in terms of the constipation benefit? My neurologist recommended 400-500 mg of Magnesium Oxide per day to help with visual migraines. I have not yet started on that regimen, but am curious about the dual benefit of these two side effects.

I am currently taking Colase which seems to be helping with the constipation, but did not know that overuse could make the problem worse! As all of you, I am eating a very high fiber diet...and never had any of this constipation problem before Velcade/Dex.

Thanks for this wonderful article!

Hi Pat and Mary Lou:

I am a patient at Arkansas. My oncologists there recommend Slow-Mag as a means of obtaining magnesium.

I take 4 pills/day: 2 in the morning, 2 before bed.

Slow-mag is magnesium in magnesium chloride form. The marketing material (you know what that means) at the slow-mag site says the body takes up magnesium better in this form.

I've been taking this since Mar 2011 and it helps ease but does not eliminate (pun intended) constipation.

It's pricy. A jar of 60 tables (a 15 day supply at my rate of consumption) is $9.99 at Walmart and about $5 more at Walgreens.

Pete N

Hi Pat and Mary Lou:

I am a patient at Arkansas. My oncologist there recommend Slow-Mag as a means of obtaining magnesium.

I take 4 pills/day: 2 in the morning, 2 before bed.

Slow-mag is magnesium in magnesium chloride form. The marketing material (you know what that means) at the slow-mag site says the body takes up magnesium better in this form.

I've been taking this since Mar 2011 and it helps ease but does not eliminate (pun intended) constipation.

It's pricy. A jar of 60 tables (a 15 day supply at my rate of consumption) is $9.99 at Walmart and about $5 more at Walgreens.

Just my 2 cents.

Pete N

Constipation has sent me to the hospital three times in recent years, so now I am careful to take Metamucil before every meal (i.e. three times a day) and four stool softeners with Sennosides every evening. (I am on a 5 MG daily dose of Revlimid.) I am reluctant to shift to the various foods and other practices that Pat recommends because it would take considerable time and effort to locate all of them and use them as he recommends, and I find any break in taking my usual regimen is risky. If over time the products I am now taking become less effective I may have to try Pat's ideas. Let me add that my doctors recommend Miralax if I find it necessary, but I take it rarely, when my regular regimen has been disrupted for some reason.

what great information! i am a stem cell transplant patient (6 yrs) and i am about to start Revlimid. constipation is more than i can manage sometime, but you gave great advice....thank you.

Looking forward to your comments on "demon dex". The drug you love to hate.
I agree with you on the issue of constipation you have to exercise regularly and change your eating habits. Eating more greens has done it for me.I'm lucky I don't need stool softeners anymore. I also found out that cutting back on spicy food helped me maintain a calm stomach. I cheat a little now and then, spicy Mexican or wasabi with sushi. My diet isn't boring I'm just using common sense.

Barry Paul

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