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Traveling After Stage IV - Questions, Concerns and Conversation

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  • Parrynd1
    Parrynd1 Member Posts: 343
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    Pajim I always run our travel plans by my MO just in case. Found out that depending on my brain mets I may not be advised to fly due to the pressure changes. I was even surprised to find out I needed a note from my MO to get my teeth cleaned at the dentist! So always good to make sure. We just went to San Francisco for our American wedding, then to Canada for our Indian wedding and even with my meningeal mets I was able to fly no problem!

    Philly your pictures look amazing!!! We are looking at booking a honeymoon and those beaches look so convincing :)

    Vancouver, BC this last week

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  • pajim
    pajim Member Posts: 930
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    Wow that's beautiful. I've been to Vancouver but only downtown. Not seen much scenery.

    Sherry, how was the spa?

  • sherry35
    sherry35 Member Posts: 155
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    Pajim- we have to reschedule as my fiancé got called into work mandatory overtime. I still decided to get my hair done. Yesterday I lost 8 inches and left a small animal on the salon floor! I feel much lighter

  • moderators
    moderators Posts: 8,067
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    LovefromPhilly, those beaches look so beautiful! Parry, we saw your wedding photos as well as those above, and WOW!! So pretty and happy!

  • Rosie24
    Rosie24 Member Posts: 1,026
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    I'm newly diagnosed as MBC de novo and have only been taking my meds for 5 days. Hubby and I had booked a 2 week European river cruise for October before we knew any of this was in store. My oncologist said, “Sounds lovely, go," when we asked her thoughts. I amworried about committing to a 2 week trip, but I'd also regret canceling if I turned out to be stable in October. We're leaning toward rebooking a 1 week river cruise instead. Tough decision for me, we have to pay or reschedule by mid February. How did you all do in your first year after diagnosis? Any advice for me?!

  • Parrynd1
    Parrynd1 Member Posts: 343
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    I’m coming up on 1 year stage 4 and 2 as stage 3 being 3 consecutive years. If you feel like you can, even if you need medicine to get you through I say go. Many on here have advised travel insurance so I’d suggest looking into that just to be safe. You never know when trips aren’t going to be an option anymore- that’s my outlook anyways, but you have today and if you have that time next month then why not make the most of it. It may not go how you envisioned 100% and that’s ok too...stuff rarely does. Plus I think it’s good for your mental health to do things like that and it sounds so lovely! Plan time to rest has also been a great suggestion I’ve seen here. 2 weeks is a lot but if you plan it with rest and not sightseeing on your feet all day I think you’ll be glad you went. Another good tip was to start out with smaller trips to gauge how you do & what your limits are...your trip is already booked so this one is more for future reference, but if you are super worried then knock back to a week and plan for another week long trip in the near future! My first year was terrible while on AC chemo (that was only a few months but recovery took over a year & more emotionally tough) but other than that the last 3 were pretty ok physically with the help of meds and knowing how my body is reacting to my chemo. What is your current chemo? When is the trip scheduled for? We try to plan a trip to happen within the 2 months after most recent scans so we know: 1. Is it working/are we continuing this treatment, 2. The infusion schedule & +/- day’s we have for scheduling, 3. SE’s, 4. General health doability 5. This allows us to plan in the space between treatment changes unless something unexpected comes up and changes everything.

    Planning farther is advanced is more stressful and I want to personally avoid it (we just got married & did 2 destination weddings in 2 weeks and had to plan far in advance...it ended up working out wonderfully - we got very blessed!)
  • Parrynd1
    Parrynd1 Member Posts: 343
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    I finally got some mopictures from this venture from friends and family so I thought I’d share it here :)

    San Francisco, CA

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    Vancouver, BC

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  • LoveFromPhilly
    LoveFromPhilly Member Posts: 1,019
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    parrynd1 - I love love love the wedding photos!! And that is about the most amazing henna art I've ever seen!!

    I have had no problem traveling except for my own anxiety about the “what ifs" that may happen when traveling. I have to take a deep breath and trust that if something “happens" to me while I am gone, that I'll be able to get back to the USA in time for me to make it my hospital. So far, nothing like this has happened. All trips have been just wonderful for me.

    The only downfall to Jamaica was that on the flight home I was stuck next to an elderly woman who was coughing and sneezing like crazy. I tried wrapping my nose and mouth in my scarf but I did end up coming down with a little tiny headcold a couple days later. Next time I may bring a face mask on the planes with me just in case!! I really don't want to wear those awful things but I would have been very happy to have had one this time around.

    Rosie - sorry you have joined us :( I was diagnosed de novo as well. I was diagnosed in April 2017 and went to Trinidad and Tobago for 2 weeks in May of 2017. I had an amazing time and the trip helped me feel like myself again after such a shocking diagnosis. I have been traveling quite a bit ever since my diagnosis and have zero regrets! Lots of great advice on this thread if you read the prior comments people have written.

    Sending you a hug - we are here to support you and help answer any questions you may have! We are all on the cruise together that no one bought a ticket for :-/ at least you’ll get to go on one that you had planned and are looking forward to! I say: Listen to your MO! Enjoy your cruise!!!

  • pajim
    pajim Member Posts: 930
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    Rosie, welcome! I would say it depends on what drugs you are on. If you're on Femara and Ibrance, don't worry about the trip. You'll be fine. The worst that might happen is you stop taking Ibrance whilst you are gone. Or take an extra week off of it.

    If you're on something heavier than hormonals it may be more difficult. I just started Halaven but I'm still planning to go to Cuba in March. My onc and I are going to have to negotiate. Not whether I go, but how we schedule the chemo around my trip.

    I've been everywhere for lots of weeks at a time. The most bad thing that happened to me was the day I had blisters from Xeloda and could not see Copenhagen on my one free day there. Man was I annoyed. I stopped taking the drug two days early and within three days I was fine trotting around France. A cruise is much more relaxing -- you can do it even with fatigue.

    This will give you something to look forward to! That's always important in this business.

  • Rosie24
    Rosie24 Member Posts: 1,026
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    pajim, yes, I’m on Ibrance and femara. I’m glad to hear it was no problem for you and that you’ve taken longer trips. I agree that a cruise can be relaxing, with a chance to take it easy if needed.

    Lovefromphilly, Great too, thatyour travel has gone well. It seems ages ago that we booked this trip, even though it was only July. We were blissfully unaware of what was coming.

    Parrynd, Your photos are beautiful! I’m sure it was a fabulous time for you all. I understand your plan for scheduling after your scans. I’d feel better doing that too, but the cruises we’re looking into (if we shorten to one week) are usually sold out by that time. Even now, the moderate priced cabins are a bit hard to find. My husband really wanted to try a river cruise so this is partly for him. Is it common to have scans every three months?

    I’m so thankful that all of you are here and willing to share your experiences. It’s given me a sense that life can still be somewhat normal with some adjustments.

  • Parrynd1
    Parrynd1 Member Posts: 343
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    I think everyone MO plans scans on an individual basis. I have a very aggressive cancer and the areas of mets are concerning so we do them often anywhere from 1-3 months apart except for bone scans.

    Can you get travel insurance for the river cruise just in case? Maybe you can call them and explain the situation and see what options they have

  • Rosie24
    Rosie24 Member Posts: 1,026
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    Thanks Parrynd, for the tip about travel insurance. We did buy it for our 2 previous cruises just for unforeseen circumstances or illness on the trip. I’m not sure if pre-existing conditions are covered by most plans. I’ll have to do some research

  • Rosie24
    Rosie24 Member Posts: 1,026
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    I wanted to report back that we, really I, decided to go ahead with our two week river cruise in October. So now we just pay our balance and hope for all to go smoothly. Thanks for sharing your experiences to help me decide! (Hubby was very supportive either way, he wanted me to feel comfortable with the plan, and I do.

  • illimae
    illimae Member Posts: 5,607
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    Parry, WOW 😲 those Henna arms are Epic!

  • vlnrph
    vlnrph Member Posts: 490
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    imageAt the pool in Florida - flying back to snow tomorrow. Invested in a package of disposable undergarments due to Verzenio providing unpredictable intestinal activity. Will put one on after getting through airport security (don't want to invite a TSA pat down!)

    Didn’t need it on the way here but you never know...

  • Parrynd1
    Parrynd1 Member Posts: 343
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    Rosie Ill be looking forward to pictures from your trip! Positive vibes that everything will go as planned and be a great time!

    Thanks Mae! It was really cool to have done :)

    Vlnrph that pool looks great!!! Boo for the return to snow.

  • Peanutsjapan
    Peanutsjapan Member Posts: 13
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    Hello Everyone, this is the first time to post. It is very encouraging to see everyone's beautiful travel photos!
    I have liver mets after Fasolodex failed, and switched to Xeloda recently. Im on my 3rd cycle and it effectively started killing mets (my CA 15 was shockingly 9000 high and on my 2nd cycle it dropped to 5000. It is still super high, but In general i still feel pretty good and work full time) so I want to stick to this med as long as i can.
    Me and my husband are planning a trip to Bora Bora island in Tahiti next month. This will be our honeymoon since we got married last year but we couldn't go last year since i used up all my vacation time for my lymph node resection surgery.

    My doctor saids as long as i feel good in general, we can go and he can work around the schedule.
    My concern is my foot and hand syndrome- My feet started getting lot of peeling and blisters and if i walk long distance, i start getting burning sensation on my feet.

    Does anyone have any tip on traveling to tropical island while on xeloda? Ive been using foot cream religiously but it is not helping with blister.

  • illimae
    illimae Member Posts: 5,607
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    peanuts, I have no advice for xeloda but I love this cream for skin issues.

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  • Parrynd1
    Parrynd1 Member Posts: 343
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    My hands used to crack and bleed at just grasping a door knob due to a form of Excema I developed at work. Anyways I found this balm for your hands called Working Hands. It cleared up the sores and cracked skin as long as I kept away from the chemicals and other things that caused it to flare up. This was years ago and now the brand seems to have grown a ton. They only had the balm in my day and now they have lotion bottles plus more. Picture is what I used to use.


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  • Peanutsjapan
    Peanutsjapan Member Posts: 13
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    Wow thank you very much for quick response illimae! Ordering on amazon now!

  • sadiesservant
    sadiesservant Member Posts: 1,875
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    Hi Peanut. There is a thread for Xeloda, I think it’s called ‘All about Xeloda’, where you will find tons of helpful advice on dealing with HFS. I used “Udderly Cream’ religiously which kept things at bay. But the reality is, you will probably have to watch how much time you spend on your feet. Avoid baths or hot tubs which can worsen things.

    I’m sure you can have a wonderful holiday with a bit of care. Enjoy!

  • Peanutsjapan
    Peanutsjapan Member Posts: 13
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    HI Sadiesservant, Thank you for pointing me to the thread, I will check out!

  • Partyoffive
    Partyoffive Member Posts: 53
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    hi

    I’m the almost 6 years since diagnosis my family and I have traveled domestically and internationally. It does take some planning(around appts,scans,etc) and we always get travel insurance. When flying I usually wear a wrap on the arm I had my lymph nodes removed it’s debabable whether it helps or not but it makes me feel better and since I’m on Tamoxifen I always make sure to get up and walk to the bathroom and a couple times to help with the prevention of clots. Everything was worth the effort to get away and recharge amd enjoy time with my family. We are currently planning a short trip to the Cayman Islands in June. Good luck

  • Parrynd1
    Parrynd1 Member Posts: 343
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    Partyoffive A trip to the Cayman Islands sounds heavenly ~

    I think I’d like to plan a trip to Yellowstone Park. See some geysers and nature and do some fun activities.

  • Peanutsjapan
    Peanutsjapan Member Posts: 13
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    HI Partrynd1, thank you for the link! Actually i've been using this cream for hand, and my hands have been ok. they got discoloration, but

    not getting cracking or skin peeling. On the other hand, my feet are not doing so great, even after i've been using the foot cream by the same brand.
    i will give it a try to Aveeno cream and see how it goes. Today was my scan day and im really nervous about the result, since my MD is considering maybe i need to switch to iv chemo depending on the result. But it is very nice to see so many people still traveling!

  • Peanutsjapan
    Peanutsjapan Member Posts: 13
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    HI Partyoffive, Thank you! 6 years on Tamoxifen ?! Amazing! Using wrap around the arm sounds good idea. Last year we camped at Yosemite

    but that was only 3 weeks after the lymph node removal surgery so my arm flared up pretty bad. Cayman Islands sounds great destination!

  • pajim
    pajim Member Posts: 930
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    Am I allowed to brag? Just back from a week in Cuba. Really fascinating place. One of the best parts was I didn't take any kind of pill the entire week I was there! We skipped chemo for that week and it was like a free week off. . .

    I'll figure out how to post a picture or two once I get them off my phone.

  • Rosie24
    Rosie24 Member Posts: 1,026
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    That’s great, pajim! The travel and the week off of pills 😊. Looking forward to some pictures

  • Parrynd1
    Parrynd1 Member Posts: 343
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    Pictures 😊😊😊 and what a real vacation without taking any meds! That is awesome and definitely brag-worthy if you ask me...

    What was there to do while you were there

  • dorimak
    dorimak Member Posts: 89
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    Peanutsjapan there is a pretty active xeloda thread you might like to check out. I’m just started xeloda so can’t offer much yet. https://community.breastcancer.org/forum/8/topics/772113?page=321#idx_9616