My multiple myeloma diagnosis is new – I begin induction with Revlimid, Velcade, and dexamethasone (RVD) on Wednesday – and, as I wrap my brain around what this means in my life, invariably it shifts to travel.
My love of, and desire for, travel is huge, and I had several big trips planned when this hit. I am accepting I need to stay put while I go through 8 cycles (current plan, if well-tolerated), and while my questions aren't yet relevant, it would help to know hypothetical possibilities.
If I respond well to treatment, and go on maintenance at the end of the 8 cycles, would it be possible to take the occasional trip of a couple of months?
The first would be domestic, then foreign. The foreign is probably dicier. Understanding nobody can answer specifics, but am curious the experience of others.
I realize I could travel if I'm off maintenance, but if I want to stay on would that pose problems?
Forums
Re: Traveling with multiple myeloma
I had a stem cell transplant September, 2011. Wasn't on maintenance. Traveled to Europe for 30 days, the next year Panama Canal Cruise 16 days, then another trip to Europe for 30 days.
We live in Florida and always travel for a couple of months each year and haven't had a problem until this past Xmas when I traveled to Michigan. I have been on and off treatment for the past 4 years. I always stopped treatment for a couple of months while we were traveling and I think that is why I never got sick. This past trip I was on Pomalyst for 21 days on and 7 days off plus dex once a week, and I think my immune system was weak.
I suggest being off treatment, especially if you travel overseas. Just a thought,
Best of luck. Mary
We live in Florida and always travel for a couple of months each year and haven't had a problem until this past Xmas when I traveled to Michigan. I have been on and off treatment for the past 4 years. I always stopped treatment for a couple of months while we were traveling and I think that is why I never got sick. This past trip I was on Pomalyst for 21 days on and 7 days off plus dex once a week, and I think my immune system was weak.
I suggest being off treatment, especially if you travel overseas. Just a thought,
Best of luck. Mary
Re: Traveling with multiple myeloma
We spent a little over a week in Rome end of November celebrating my husband's birthday and his 7 months post transplant. He was on maintenance of 10 mg Revlimid 21 days on / 7 days off - and his week off was the week before we left. He stayed off Revlimid for the week we were in Rome and had no issues. He did take a Zpak with him in case of feeling like he was catching a cold. I was the one who caught it - and he did just fine! He went back on Revlimid when we returned.
Travel - as our doctor said to us - this is why you are having treatment.
We are planning our next trip as I type this!
Travel - as our doctor said to us - this is why you are having treatment.
We are planning our next trip as I type this!
-
Nanjeanne - Name: Nanjeanne
- Who do you know with myeloma?: My Husband
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 66
Re: Traveling with multiple myeloma
I went through the same type of induction treatment you did back in 2009. I have been on continuous treatment. I work, travel, and bike ride. I have been to Europe twice and to Dubai. The bottom line is a fear of getting sick should not stop you from traveling once your induction is complete and you are on maintenance. You need to inform your doctor and take reasonable precautions.
Travel throughout the US, Canada, and Western Europe or Australia should not be an issue. Any travel outside of those areas has a higher risk of infection from a variety of sources and should probably be considered very carefully. For example, just an average person going to India has to be vaccinated quite heavily. If where you go requires a vaccination, then that location should probably come off your list.
Travel throughout the US, Canada, and Western Europe or Australia should not be an issue. Any travel outside of those areas has a higher risk of infection from a variety of sources and should probably be considered very carefully. For example, just an average person going to India has to be vaccinated quite heavily. If where you go requires a vaccination, then that location should probably come off your list.
-
Ron Harvot - Name: Ron Harvot
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb 2009
- Age at diagnosis: 56
Re: Traveling with multiple myeloma
I, too, have traveled quite a bit since my diagnosis. During the 8 months that I was on induction (Revlimid and dexamethasone), I didn't go anywhere. For the 8 months following my stem cell transplant, the only place I traveled was 50 miles from my home and from my oncologist. During the first year post stem cell transplant, I had several severe respiratory infections and also developed shingles. But, once I got past those, I was fine. So, I started traveling.
My first big trip was to Scotland for a week. My oncologist gave me a Z-pak to take with me and advised me to just be religious about washing my hands frequently and taking rests when I started to feel tired. I had no problems.
After that, I didn't think anything about driving or flying off somewhere when I wanted to. I do check with my oncologist before I take a trip to make sure that I don't have to worry about anything. When I went to Eastern Europe last year, he just said, "Go and have fun." Because I was gone for a month, I scheduled it around my Revlimid cycle. I also stopped taking dex for the month because of the annoying side effects that could have made the trip miserable.
So, once you are on a maintenance schedule, it is pretty easy to travel depending on what your drug regimen is. If you will be taking Revlimid, you usually can arrange to have it delivered to a local pharmacy if you are traveling in this country. Outside of this country is a bit more difficult, unless your specialty pharmacy and your prescription plan approve giving you a 2 month supply at once. Or, your oncologist approves you taking a break from your drugs for a month.
Always pass your travel plans by your oncologist so that you can get his/her input and ask questions about any precautions you might need to take. Going any place that requires lots of vaccinations prior could be a problem if any of them are live vaccines.
Live your life, travel and enjoy,
Nancy in Phila
My first big trip was to Scotland for a week. My oncologist gave me a Z-pak to take with me and advised me to just be religious about washing my hands frequently and taking rests when I started to feel tired. I had no problems.
After that, I didn't think anything about driving or flying off somewhere when I wanted to. I do check with my oncologist before I take a trip to make sure that I don't have to worry about anything. When I went to Eastern Europe last year, he just said, "Go and have fun." Because I was gone for a month, I scheduled it around my Revlimid cycle. I also stopped taking dex for the month because of the annoying side effects that could have made the trip miserable.
So, once you are on a maintenance schedule, it is pretty easy to travel depending on what your drug regimen is. If you will be taking Revlimid, you usually can arrange to have it delivered to a local pharmacy if you are traveling in this country. Outside of this country is a bit more difficult, unless your specialty pharmacy and your prescription plan approve giving you a 2 month supply at once. Or, your oncologist approves you taking a break from your drugs for a month.
Always pass your travel plans by your oncologist so that you can get his/her input and ask questions about any precautions you might need to take. Going any place that requires lots of vaccinations prior could be a problem if any of them are live vaccines.
Live your life, travel and enjoy,
Nancy in Phila
-
NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: Traveling with multiple myeloma
I've traveled quite a bit since starting treatment. We've had to adjust things here or there, but by no means do I intend to stop traveling. I love to travel – it's one of my joys in life. In fact, we are going to Rome in two weeks!!
After all, most people with myeloma are on some kind of treatment for the rest of their lives. What's the point of that, if we stop doing the things that make life meaningful?
After all, most people with myeloma are on some kind of treatment for the rest of their lives. What's the point of that, if we stop doing the things that make life meaningful?
-
Tracy J - Name: Tracy Jalbuena
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2014
- Age at diagnosis: 42
Re: Traveling with multiple myeloma
We have a motorhome and we usually leave every year for a four to five month trip. We were planning a trip to Nova Scotia this year. Oncologist does not want me traveling at this time. I am on Revlimid and dex plus pain pills, no Velcade.
We are a little bummed, but will stay to fight the good fight.
Tom74
We are a little bummed, but will stay to fight the good fight.
Tom74
-
Tom74 - Name: Tom Meredith
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 9/5/15
- Age at diagnosis: 73
Re: Traveling with multiple myeloma
According to my current hematologists (Mayo, home town, and main travel location in India), what I had thirty years ago was not due to autoimmune disease but MGUS.
Anyway, on February 16, 2015 I was declared to be Stage IIA IgG kappa multiple myeloma. I started my Revlimid plus dex treatment in March and next day after starting treatment traveled to Hong Kong and India. I go back to Mayo every three months. I get my Zometa every three months. My oncologists helped me to get a Revlimid supply for three months before I leave the USA.
My Mayo hematologist advised me to have a hematologist in my home town as well as at travel location in India. Have a blood test at the end of every cycle. I follow that regimen.
I finished my ninth cycle couple of days ago.
Confusion came in blood test report. India lab said my M spike to be zero after sixth and seventh cycle. Mayo result has me at 0.7. India suggested to go on maintenance. Mayo on the other hand suggested four more cycles of normal Revlimid plus dex. Mayo prevailed.
I will be between India, Hong Kong, Philippines, Tokyo before I return to Mayo after four and hopefully final cycle.
Anyway, on February 16, 2015 I was declared to be Stage IIA IgG kappa multiple myeloma. I started my Revlimid plus dex treatment in March and next day after starting treatment traveled to Hong Kong and India. I go back to Mayo every three months. I get my Zometa every three months. My oncologists helped me to get a Revlimid supply for three months before I leave the USA.
My Mayo hematologist advised me to have a hematologist in my home town as well as at travel location in India. Have a blood test at the end of every cycle. I follow that regimen.
I finished my ninth cycle couple of days ago.
Confusion came in blood test report. India lab said my M spike to be zero after sixth and seventh cycle. Mayo result has me at 0.7. India suggested to go on maintenance. Mayo on the other hand suggested four more cycles of normal Revlimid plus dex. Mayo prevailed.
I will be between India, Hong Kong, Philippines, Tokyo before I return to Mayo after four and hopefully final cycle.
-
MMFeb16,15 - Who do you know with myeloma?: Self
- When were you/they diagnosed?: February 16, 2015
- Age at diagnosis: 66
Re: Traveling with multiple myeloma
Husband diagnosed in July 2015. Had 5 cruises planned. Canceled one in October. Went on a river cruise in Germany in December in the middle of his 6th cycle of chemo. Was a little too early for him. Tired easily and bathroom issues.
Canceled 2 more for March and April of this year as he is currently at Day +5 of his autologous stem cell transplant.
We have a big trip scheduled for May 2017 to go to the Galápagos and Machu Pichu which, God willing, we'll be able to do.
Canceled 2 more for March and April of this year as he is currently at Day +5 of his autologous stem cell transplant.
We have a big trip scheduled for May 2017 to go to the Galápagos and Machu Pichu which, God willing, we'll be able to do.
-
Halches - Name: Carol S
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: 7/15
- Age at diagnosis: 73
Re: Traveling with multiple myeloma
My pain is getting progressively worse. No way to travel with this kind of pain.
Tom74
Tom74
-
Tom74 - Name: Tom Meredith
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 9/5/15
- Age at diagnosis: 73
12 posts
• Page 1 of 2 • 1, 2