As a five-year multiple myeloma survivor, I have come to realize that most of my life will be spent taking what I call "perpetual chemotherapy."
Researchers and drug companies call this "maintenance therapy." But I like the term perpetual chemotherapy better, because it can include induction, consolidation and whatever else our docs want to calls the pills and infusions that we are forced to take in order to stay alive.
And I'm OK with that. Better than the alternative, right?
But it doesn't get any easier the longer we stick around. Most myeloma specialists agree that it's too risky to take extended drug holidays once a patient has relapsed (me!). The good news is that when I combine my personal therapy do's and don'ts with other tips I've gotten from reader comments and emails, I have banked a wealth of knowledge on how to minimize chemotherapy and radiation side effects.
So what do you say I open my "vault" and share some of these tips with you today?
- Try to schedule your doctor's visits and infusions at the same time and on the same day. For example, I have a standing appointment at my local oncology center on Wednesdays at 3 p.m. I get my blood levels checked, and four out of every six weeks, a Velcade sub-q shot. I also get hooked up for a monthly Aredia infusion and see my medical oncologist as needed.
But that's only the start. Wednesday evening I take my 10-mg Revlimid capsule, then 40 -mg dex right before I go to bed. That way I still get a good night's sleep, putting-off insomnia until the next few nights.
By taking my meds on the same time and same day, I'm able to anticipate how I will feel over the next three days. I'm also convinced that my body adjusts to my schedule, too.
- I have developed some pretty serious peripheral neuropathy (PN) over five years. My guess is some of you have, too. If so, you may already be using Neurontin (trade name gabapentin) to help minimize your symptoms.
Here's an insider's tip for those of us who use gabapentin. A good friend and researcher who works with the drug shared how important it is to not take your capsules all at once--or even just in the morning and at night. "Add a capsule or two mid-day," he recommended.
What a difference! I understand that gabapentin doesn't work for everyone with PN. But part of the problem may be that you aren't taking enough, or that your dosing schedule is off. Experiment a bit and hopefully you will be as surprised as I was about what a difference it can make.
- Exercise. You have got to exercise! Walk daily. Take your wheelchair out to the corner and back. Swim, lift light weights. JUST MOVE! Regular exercise can really help your appetite and energy level. DO IT! PLEASE!
- Don't put off other medical procedures just because you have multiple myeloma. I should follow my own advice! I need my right hip replaced due to several large lesions in the area and some serious acute arthritis that has developed in the joint. It accounts for more than half of the pain I experience when I exercise, shop or just try to move about the house. Don't make the same mistake!
- Ask your nurses for help! I have found working closely with oncology nurses can assist you in a number of ways. They can give you tips to help manage side effects directly, as well as having your doctor's ear when it comes time to use drugs to help.
- Try to remember why you are experiencing side effects: TO KILL YOUR CANCER! A fellow stem-cell transplant patient once told me that she felt a lot better just knowing that her ills were caused by drugs that were saving her life. But remember, that doesn't mean you should "tough-it-out" or not ask for help.
- Try to stay positive. Exercise should help. So should see a therapist, meditating, practicing yoga and/or eating a wide variety of healthy food. And don't forget that making time to help others often helps you feel better, too!
Let's stop here. I can just see my editor scowling about how this week's post is too long!
I will share some more specific tips next week. Until then, don't forget to try and feel good and keep smiling!