Traveling with multiple myeloma (Part Two)

 

I closed Monday’s post this way:

“Taking things to the next level, timing is everything for a multiple myeloma patient who is undergoing treatment when they would like to travel.  Whenever possible, I try to anticipate my trips and time my chemotherapy cycles as best I can.”  

Keeping up with one’s supplement and basic medication schedule is important.  But for patients currently undergoing myeloma therapy, things can get a bit more complicated.

Yes, I sometimes take Revlimid while I’m traveling.  If possible, I work with my docs to adjust my treatment cycles so I can enjoy a drug-free holiday when I’m flying around the country, speaking to support groups or promoting my books..  But if the timing doesn’t work-out, so be it!  Need I even remind you that sticking to our treatment protocols is important.  Yet if I need to move a Velcade infusion up or back a day or two in order to accommodate my travel schedule, I do–and I haven’t missed a scheduled treatment by more than a day or two yet!

Let’s face it.  If your myeloma is stable and hopefully in remission–and you are using maintenance–then missing a scheduled dose here or there probably won’t make much difference in the long run.  After all, researchers can’t even tell us with certainty when and how much Revlimid–and whatever else we’re taking–effects our overall survival.

I’m no doctor.  But I do know a lot of people that stay on continual maintenance, while others take extended drug holidays.  Patients in both groups seem to fair equally as well.  And the overall survival (OS) stats among otherwise healthy survivors seem to back that up.

EDITOR’S NOTE:  The key part of Pat’s statement above is “among otherwise healthy survivors.”  There is no question that staying on maintenance therapy can help delay the return of a patient’s active myeloma.  It can also help some patients with co-morbidities avoid fatal complications.  (See Pat’s series about maintenance therapy from last week)

BUT, patients that are in the midst of induction or consolidation therapy–especially if they have relapsed–better not plan on skipping or adjusting their chemotherapy schedules.

My wife, Pattie, is an administrative assistant at a large dialysis clinic here in Florida.

Dialysis isn’t something you mess with!  You can’t just skip a few treatments while you travel around the countryside.  Long distance travel must be carefully planned to allow for patients to be dialysized on time or they can get really, really sick, or worse.  Special accommodations must be made and itineraries kept.

Pattie has a lot of experience with this type of thing.  “Sun birds” that travel up-north for the summer, and return to Florida in the winter all need to have their dialysis schedules adjusted and dutifully timed.

I point all of this out for two reasons.  On one hand, many of us have more flexibility than a dialysis patient as to when and how often we take our anti-myeloma meds.  But on the other hand, it is vitally important that we don’t become too lax (non-compliant) and begin skipping doses and/or missing infusion appointments.

Honestly, sometimes I think that we can get too hung-up and about traveling while taking our meds.  Most patients taking oral maintenance–usually Thalomid or Revlimid, with or without dexamethasone–can continue taking these medications while they travel.

I’m not saying it’s always easy!  But for many of  us, it can be done.

Don’t become a non-compliant patient!  Be honest and forthcoming with your doctors and healthcare team.  Work with them to find a travel compromise you all can agree on.   After all, your life may depend on it!

Friday I will continue my travel series by sharing a number of specific, helpful suggestions that my readers have sent me over the years.

Feel good and keep smiling!  Pat