Northern Lights: Traveling While Receiving Treatment For Multiple Myeloma
My husband Dilip and I have always enjoyed traveling. We like to see new places, and since we both have family members who live in different provinces and different countries, travel has allowed us to see many places.
This routine changed suddenly when I was diagnosed with myeloma in the summer of 2009. We did not travel at all while I was undergoing induction therapy and the stem cell transplant.
We slowly resumed our travel routine once I started low-dose therapy with Revlimid (lenalidomide) in 2010. Once I completed my Revlimid treatments in 2011, we were fortunate to be able to travel as we wished. I was in remission and did not have to worry about taking chemotherapy for more than three years. It was a window of opportunity to be carefree that I knew could be partially or fully closed at any time, given the recurrent nature of myeloma.
Last fall, my husband Dilip and I planned a week away to warm Hawaii in December. By this time, I had relapsed and started treatment with Revlimid plus dexamethasone (Decadron).
It was clear to me that this trip would be different from the ones we have taken before because it would be the first time I would be traveling while being on such a strong treatment.
The first thing I did was to contact our travel insurance agency to let them know of my change in medications. This is a requirement from my private travel insurance plan. Even though any myeloma-related claim would probably not be covered (because, with my current plan, I have to be on the same drugs, or no drugs, for a year to get coverage), I nevertheless carry travel insurance to cover other medical emergencies.
When we told my oncologist about the trip at an appointment in early December, he suggested that I take precautions against developing blood clots, a potential side effect of Revlimid. I’m already taking low-dose aspirin, along with the high-dose Revlimid (25 mg), for the prevention of blood clots. However, my doctor recommended that I take four doses of Lovenox (enoxaparin), by injection, to avoid any clots from forming over the course of the direct, seven-hour flight. These doses would be administered on the days of and following the flights. In addition, the oncology nurse advised me to get up and walk around on an hourly basis during the flight, if possible.
When I packed for the flight, I prepared a vanity bag full of medicines of various types. The bag contained the Revlimid, dexamethasone, low-dose aspirin, trazadone (a sleeping pill for dex days), and a laxative. I carefully put this into my carry-on bag, since I wouldn’t want to be without my meds in case my luggage was lost.
In addition to the Lovenox injection, which my husband administered to me before and after our flights, I put on a knee-high pair of compression stockings to help with blood circulation during the flight. The Lycra in them was so tight, it reminded me of a swimsuit with so much elastic in it that it instantly makes a person look 10 pounds slimmer!
Fortunately, all went well with the flight, and we found ourselves in what surely is a paradise on earth, the volcanic isle of Maui.
We rented a vehicle, but I did not sign on as a driver. When I am taking dex, I don’t want to be driving on highways in a different country.
Our condo unit was located in an area of beautiful gardens next to the ocean, which made it easy for us to walk along the beaches, stroll the sea walk pathways by the shore, and splash in the surf.
The condo was also convenient in that I could take a rest any time I needed to without having to give up my hobby of nature watching. I could sit on the patio and rest while simultaneously watching little geckos, birds, and butterflies. This place was just ideal for that.
Despite our intentions, we did not go snorkeling this time. My husband slightly chipped a tooth during one of our meals, and the resulting tooth ache would have made it difficult for him to use the snorkel.
More importantly, it occurred to me that maybe my husband was relieved not to go snorkeling with me in the ocean while I was taking dex. I learned during my induction therapy that dex changes my judgment from what it is normally. The ocean currents and strong waves can be a hazard, and who knows what may have happened to me while snorkeling out there.
On our way home, I had a sore throat, which eventually developed into a cold. There were many people coughing and sneezing on the plane, so I was not surprised about my sore throat. I nevertheless asked myself whether it was a sign that I was developing neutropenia, another common Revlimid-related side effect, which increases the risk of infections. Fortunately, the cold went away within a couple of days, and I have not caught anything since then, so I don’t think I’m neutropenic yet. I will know for sure when I get the results from my next blood test.
We had a wonderful time in Hawaii and brought back lots of photos and memories to think of during the course of our long winter here.
I realize, however, that traveling while taking these strong myeloma drugs is a different kettle of fish than what I experienced during my carefree travel days when I was not receiving treatment.
Do you have any travel experiences to share while receiving treatment?
Aloha!
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The quotation for this month is a Hawaiian saying: "Mohala i ka wai ka maka o ka pua,” which can be translated to "Unfolded by the water are the faces of the flowers."
Nancy Shamanna is a multiple myeloma patient and a columnist at The Myeloma Beacon. You can view a list of her 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 am on a plane to San Francisco right now. I am currently on maintenance Revlimid at 10 mg, 21 days on and 7 off, and have been for 2 years. Just had a PET scan last week and my oncologist described the results as "perfect".
I travel extensively for my job in the music business, and I have slowed down. It simply is not as fun, and my back causes big problems sometimes. The year before diagnosis, I flew 22 weekends after working a full 50 hour plus week. This year, I only flew four times.
The truth is, I got married about 12 days after diagnosis, my wife and I have a nice home, 2 cats and 2 dogs, and I really don't miss the travel. Family and friends are more important then anything now. Myeloma made me realize that. I still work full time and never have missed much work, but coming home to a family that loves me is much more fun then chasing rock stars around the planet ... believe it or not. Done it. Did it!
Glad you had a good trip! Side effects of Revlimid include blood clots. I have to take the Lovenox injections daily. So patients should be extra careful and report any symptoms and side effects of this to their Dr.
Thanks for your comments, Hugh and Deborah.
Deborah, are you taking Lovenox because you did have a blood clot or embolism? I didn't really like having the injections, since they did sting and caused some bruising too. I tried putting ice on the site, which helped, and I appreciated the concern shown by my doctor about flying safely.
Hugh, sounds like you have a wonderful family, and would like to spend most of your time with your wife and your pets too. That's a more fun and healthy lifestyle than always traveling, I would think!
Thanks for your column Nancy. Not many MM patients talk about how they handle travel.
A few years ago, I traveled to California for a conference and vacation. I was on a VRD regimen at that time and, fortunately, my time away fit perfectly during my "downtime". The prime issue for me was needing to take Neupogen injections I'd been prescribed. Since they need to stay refrigerated, I bought a small container designed for diabetics who need to carry insulin syringes. The container was insulated and included a freezer pak. I managed to fly from the east coast to the west and get the syringes into the hotel mini frig before they completely cooled down!
Good for you, Cynthia, being able to handle the Neupogen shots while traveling. I had Neupogen shots for stem cell mobilization and was thankful to be at home then! I also had them in a little insulated container with a freezer pack, as I recall.
Most people who take Revlimid have lower than normal neutrophil counts. Mine are generally between 80-105. They will usually hold your Revlimid if your neutrophils get below 50 or 60. One thing to be cognizant of is that, if you get a fever, to make sure you go to the ER right away, so you don't develop neutropenic fever, which kills 1 in 3. God Bless.
Well ... you are all very brave. My husband is reluctant to travel to the USA from Canada as we have all heard horror stories of huge hospital bills because the insurance company relates the injury or illness back to the pre-existing condition (myeloma) and won't cover it (i.e., pneumonia, fracture due to fall, etc).
We are fortunate to have had many great trips in the past and there are many wonderful travel spots in Canada, so this is not exactly a hardship!
Other advice we have been given is to go to Cuba ... very good inexpensive healthcare if the need arises.
Keep warm, Nancy, and thanks for your columns.
Such an apt article. My husband is currently on thalidomide maintenance. He is not in remission, but his numbers are remaining very low and all other blood work has been good for the last 12 months (don't have the numbers with me at the moment). We would like to travel to the US in July from Australia to drop our son off at university on a scholarship. We are so worried about traveling without insurance. However, it would be so devastating if he was not able to see our son's new home away from home. Torn!
Thanks, George, for the advice abut fevers while neutropenic. I have been advised not to 'mask' a fever of any sort by taking Tylenol. For example, if one does catch some sort of flu and has a fever, best to seek medical advice immediately, for it could be a serious infection. Don't wait for a fever to subside in a couple of days, try to get help for it right away!
Sue, I do hear you about traveling out of country without adequate insurance coverage! I know it's a chance taken, but sometimes it is tempting to go south in the winter. Luckily, the weather has warmed up here now, plus 7 C (45 F), which is just great for walking outdoors. The ice is melting away from the river banks. Haven't been to Cuba, it's way to the east of here, which would be an even longer journey. I don't know if they would have good care for myeloma patients, really. Thanks for your comments.
Hi Shaznics, I would just start now trying to find some travel insurance that would give you coverage. I am going to try to change my plan so that it is less restrictive that way. Having to pay for health care out of one's own country could be really expensive. I suspect that many of us have the same concerns wherever we live!
I have only traveled to the US from Canada so far. I am on maintenance dex + Cytoxan. We travel by car, so I mark out the hospitals on the way down to Florida, and the ones in Florida, should need arise. As for insurance, mine did not even ask for any "pre-existing" conditions, nor any medical information. Maybe because of my age? (I'm 50.) I'm assuming they would pay? Not sure how they can relate any illness back to the myeloma, i.e. anyone can get pneumonia, the flu etc.
In any case, traveling is definitely worth it when you are feeling decent. God only knows how we will feel next week, next month, next year. So take advantage of it while you can!
Good luck, Roxy, with your travels. It was the air travel that got me into taking the anticoagulants, actually. I have known of people who returned suddenly from out of country if they got injured and needed surgery. It's difficult to know if travel insurance will cover a claim relating to a 'pre-existing condition', that's for sure!
Hi Nancy.
Travel!! I started lenalidomide 25 mg 21/28 days + dex 40 mg once per week in September 2013 for my first recurrence. I am also enrolled in a clinical trial (MLN9708, a protease inhibitor, or placebo) once per week. I have traveled from Vancouver to: New York, Quebec (twice, one month apart), Hawaii, Berlin, Quebec again, Portland, Barcelona, Copenhagen and Hawaii again (!). All in 15 months. We are all different in how we tolerate treatment. I seem to be lucky. I have now achieved a complete response with this, also lucky.
The study med is a challenge, as its needs to be refrigerated. It is quite fun to watch the security agents when I tell them that the ice pack is to keep "chemotherapy" refrigerated. They react as if I just told them that it will burn their hands. They don't touch it, or check my prescriptions. The ice pack lasted all my trips to Europe. And I ensure there is a bar fridge in the room. Newspaper and clothing works for the trunk of the car when you are wine tasting in the summer heat in Oregon, deep in your carry-on.
As for snorkeling, my husband, a non water creature, preferred to watch me from the shore on my dex day, so he did not have to follow! I was not alone, with many other snorkeling around me on a calm day. I need to burn the dex on Thursdays, so heavy exercise is the rule. And it helps my sleep a great deal.
I enjoyed your column. Good luck and happy travel.
I am planning a trip to Norway in May. This article gave much food for thought. I will ask my doctor what he thinks about the Lovenox. It is an 8 hour flight each way. I am only on Revlimid 10 mg and low dose aspirin. Was there any problem being able to take the injections on board?
I love to travel! I went to Utah skiing about 6 weeks after my second SCT. I was treated at UAMS as part of TT3. My doctor told me to do what I could and wanted to do. After my second consolidation and after removal of a blood clot from my superior vena cava, we went on a 2-week motorcycle trip through Europe. I had 2 injections of Lovenox per day. I was a passenger on my husband's BMW. 4 years after my diagnosis, I was able to go to Peru and spend 4 days hiking the Inca Trail to Machu Picu. I have been very fortunate! Four years ago I took my two oldest grandsons on a six-day rafting trip down the Middle Fork of the Salmon River in Idaho.
I want to continue to travel as long as I can possibly do so. It does take a little extra effort and work, but it is so worth it!
Thanks for all of the travel tips, Nicole, Janice and Linda!
Nicole - With the length of time you have been on the same treatment and dosage, i.e. more than a year, I would actually be covered for myeloma by my travel insurance plan. I have never had to make a claim, though, so this info is just from talking to them when I report on what meds I am taking. I hope that the MLN9708 drug works out well, for it is an oral version of Velcade, nest-ce pas? Oral chemo is so convenient, lenalidomide is convenient too.
Janice - I didn't inject Lovenox on board the plane, just in the mornings before and after the flight. I suppose you could take it on a long flight, since the type I had was in a pre-loaded syringe with a retractable needle. That was also very convenient, and it did not need to be refrigerated.
Linda - Glad you are doing well too. I have another question too. If you are in the U.S. getting treatment, would your travel insurance cover any problems you have with getting that? Or would the institution you attended, such as UAMS, cover all of the medical problems? (I am just curious.)
Oh well, I think that my next trip will be to British Columbia, to Comox, to visit my mother and sister! That's only a one hour flight and just one province over. Maybe the daffodils will be blooming there soon! It's always a treat to visit the west coast in the early spring.
Hubby is just out of his 6 month window post tandem transplants and we're looking forward to getting back on the road again. He's on a Velcade + Revlimid maintenance regimen, and that's proving to be an issue. Carrying the Revlimid is no problem, but the Velcade injections? Our insurance company will only cover injections by a nurse trained in administering them. Since it's not out in an oral form yet, we're trying to figure out what to do? His doctor says it's not an issue to miss a week, but we're booked on a 35-day European cruise this summer to celebrate his 1 year anniversary. Any ideas / suggestions?
Hi Nancy,
Thanks for this informative column. I've already taken some trips while being on Revlimid maintenance, but I didn't think to take some of the precautions you mentioned. I will be referring back to your tips here when I get ready for trips in the future.
Glad you and Dilip had a lot of fun in Maui! It's been many years since I was in Hawaii, and your column made me eager to go back.
Mike
Hi Vicki - When I took Velcade injections almost six years ago, there was a saline flush involved, and also the Velcade was prepared by the oncology nurses. The type I had would not have been very portable. I think that someone on the Forum does their own infusions, but that isn't the norm. Could you split your cruise into two fourteen day trips, maybe one in the summer and one later? That way, you would only miss one Velcade injection, but maybe others could advise you if you post your question over to the forum.
Mike - I agree that Hawaii, in particular Maui, is an awesome place to visit, and Dilip and I would like to go back there again next winter.
Nancy
To help keep your neutrophils up, talk to your doctor about taking extra folic acid. Works for me. I am on 25 mg Revlimid, 20 mg dex and take 2 mg of folic acid extra per day.
Thanks Eric, we are on the same treatment protocol. I will ask at my next checkup about the folic acid. Currently, I am also taking a multivitamin and a vitamin D3 tablet, since we don't get enough direct sunshine here, and probably most people are a bit deficient for vitamin D.
This was my first time talking to anyone about my multiple myeloma. I had one round of Velcade chemo and did O.K, now doctor wants me to do another round. I was off for a year, had peripheral neuropathy. I am 80 years young and not good on the computer, but was so happy to just hear others speaking of their experiences. I felt so alone in this. My faith gets me thru spiritually, but when I ask doctor questions, he says it just gets worse ,and they would give me meds for pain. That isn't much comfort. But hearing about all the others seeming to still be normal or as much so as we can. THANK YOU, SOOO MUCH.
Headed to Turkey in Aug for 18 days. Glad to know about Lovenox. I take Xarelto already. Had a DVT last June, but it resolved. Will also take Cipro, a broad spectrum antibiotic. A bit concerned about energy level, but I'll adjust (currently on Revlimid maintenance).
Happy travels to all.
Hi Marilyn - Good to know that you are reading the Beacon. It's a source of information and support online that many of us tap into also! Are you being seen by a hematological oncologist or a myeloma specialist? There are other treatments besides Velcade, e.g. Revlimid, that might be of help to you. I wouldn't give up on treatments. Good luck and, if you need any advice, please get back to us either here or by posting questions on the Forum.
Happy trails, Wesley. Sounds like you are well organized for traveling. The insurance can be a concern, but hopefully one can manage side effects of the chemo drugs and ward off DVTs!
For those traveling out of USA to Asia after having SCT did any of you have to wait the year from transplant to be able to receive immunizations again or were you able to travel without? How soon can one reasonably travel after a SCT?
Hello Nancy, greetings from Eugene! I am glad to hear you were able to enjoy your trip to Maui. Couple of ideas came to me regarding DVT prophylaxis with lenalidomide (Revlimid). One, the highest risk patients are those with an inherited coagulopathy. The most common of these is Factor V Leiden deficiency, which is easy to test for serologically. If that is negative, and you have no other risk factors for thrombosis (clots), 81 mg ASA (aspirin) daily, with frequent walking and calf massage, should certainly be an adequate DVT prophylaxis. Also, I would avoid very tight compression stockings. Just some ideas you can run by your oncologist (and your physician husband, Dilip).
I hope you received good results with your CBC and myeloma markers, and that all is well with your family. Our daughter Lenka (from Canmore) is now on Mt. Kilimanjaro, leading a climb, and is now engaged. Her twin Natalie and her husband love living in Revelstoke. We are also excited to be grandparents in April, to be born in San Francisco with our son Erik and daughter-in-law.
Best wishes for a healthy, happy 2015! Jan
Hi Laurel, I think that your question is about just how immunocompromised would one be without retaking the vaccinations?
I looked at my 'Adult Immunization Card' from Alberta Health Services and noted that I received the following: One year after transplant, non live vaccines, dTAP (diphtheria, tetanus, polio). meningococcal, pneumococcal, hepatitis B, influenza, and HipB. I had 'booster' shots later for some of these. Then, two years after transplant, 'live vaccines', had MMR (measles, mumps, rubella), and varicella (chickenpox), with 'boosters' on those also!. So it actually took me two years to get caught up on vaccinations! I still take the 'flu' shot every year.
I suppose that another consideration also is just how immunocompromised is a person at the time of the vaccinations, for I have been told that they may not 'take' .
So, for traveling, I guess it's wise to take all possible precautions against getting sick, wherever one is travelling to, as well as guarding against side effects such as DVT's and having adequate travel insurance.
It could be that if you post your question to the Forum, others can tell you their experiences too! There's even a new thread in the forum, which was started after my column was published, about "Traveling experiences or advice". It might be a great place for your questions.
Thanks Jan, for your comments as a physician! Don't you think that having myeloma itself leads to a hazard of coagulopathy? I didn't mind taking the Lovenox injections, since I am scared of having DVT's. Some of my friends in my support group here have had them. I will ask about the Factor V Leiden deficiency, though, at my next check up in February. The dose of Revlimid that I am on, 25 mg, can lead to having blood clots, according to my doctor and also the pharmacist at the cancer centre.
Yes, next time on a long air trip I will get a pair of compression stockings that fit me better. I think that my family doctor can prescribe me some, actually, for no cost. The ones I tried were a bit too tight, actually.
Congratulations on your good family news, and hope that your health is really improved too.
Hi Nancy - Yes, both MM itself and Revlimid are risk factors for DVD, but, as far as I understand, experts do not recommend low molecular weight heparin or other injectables for travel, in lieu of baby aspirin, and frequent mobilization. That is, unless other risk factors are present, such as factor V deficiency, an inheritable predisposition present in about 5% of the population (according to obstetric data).
I traveled to Ireland and the Czech Republic while on Revlimid without Lovenox or similar meds. These meds are not without their own risks (hemorrhage), especially with thrombocytopenia (low platelets). But do seek expert opinion. Best wishes on grandparenthood soon!
I looked up the published research about lenalidomide (Revlimid) and risk of DVT. Unless you are on high dose dexamethasone or have other risk factors, only ASA is recommended as prophylaxis. See IMWG guidelines (Leukemia, 2008) for a thorough list of risk factors (other than myeloma). But thrombophilia (genetic predisposition for clots, with Factor V [five] Leiden deficiency being most common) is an indication for low molecular weight heparin. Hope that helps. Best wishes!
Thanks Jan. I am also taking dexamethasone, 20 mg once a week, and now I do remember that the combination of dex plus Rev is considered to be of higher risk for thrombosis, hence the anticoagulants that I took. Fortunately, I had no harm done on the trip, aside from the discomfort of taking the injections. For anyone else traveling, of course check with your oncologist about any of this. I am not a doctor. I think that I wrote the column with the realization that I had considerations with my health that I had not had to worry about for more than 3 years previously, when I was not taking any myeloma meds. It was a real 'sea change' and a bit startling for me and Dilip too! I appreciate your concern!
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