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traveling on ibrance

CalGal56 profile image
31 Replies

Good day everyone!

Yes, that is sent with enthusiasm, because I am still here and savoring every moment! I was diagnosed with advanced breast cancer 4 months ago - this is my third go round - 2000 triple negative, 2017 HR+, HER2 - and a recurrence 6 years later 2023 - a veteran! What a ride. I just agreed to a 15 day walk on the Camino de Santiago - 200 miles in 13 days. I am very fit and athletic, pre-ibrance , and would love some tips from other Ibrance travelers! I am all in…I can opt out on certain days and do 1/2 day hikes if needed but would love to hang in with the group!

Looking forward to life and your feedback!

Mona

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CalGal56 profile image
CalGal56
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31 Replies
Merma profile image
Merma

Sometimes Ibrance affects the hemoglobin. On those days, I just go easy. I'm a swimmer and synchronized swimmer. I just honor my fatigue. Hope this helps. Have fun on your trip!

CalGal56 profile image
CalGal56 in reply to Merma

Thanks Merma! Will do! My Grandfather (a Pacific Coast swim champ) used to announce synchronized swim events in the 40’s and 50’s here in California! Love that sport! I appreciate your taking time to respond. Enjoy the water 🏊🏻‍♀️🏊🏻‍♀️🏊🏻‍♀️

Merma profile image
Merma in reply to CalGal56

He probably knew my former Coach Dawn Pawson Bean. She and her sisters were Synchro swimmers back then. She was one of ones who turned it into a sport.

13plus profile image
13plus in reply to Merma

That's amazing!

Susan1953 profile image
Susan1953

Enjoy your trip! Listen to your body and do not overdo or push yourself. I am 6+ years MBC with Mets to bones on Ibrance and letrozole. I have climbed mountains in Ireland, cruised and climbed lots of steps in Italy, kayak and walk at home in Alabama. Stay hydrated!!!

CalGal56 profile image
CalGal56 in reply to Susan1953

Thanks Susan! Onward and upward!

Eliactida1955 profile image
Eliactida1955

I was on ibrance and stayed in Greece for about 7 weeks-all was well my schedule was as directed three weeks on and one off. If feeling funny or any doubly check the lab. My wbc would lower at times weak. Good luck!🙏🌹

Mimigram profile image
Mimigram in reply to Eliactida1955

I was told with Ibrance that you can get one vacation refill once a year. Is that what you did as seven weeks would be moving into the next 21 days.

Eliactida1955 profile image
Eliactida1955 in reply to Mimigram

no I was told if needed ibrance could be stopped if not working and could be restarted to might work again . I did it but it really didn’t work for me. Read research study from dana farber study.

CalGal56 profile image
CalGal56 in reply to Eliactida1955

Greece ahhhh! Love Greece! Thanks for guidance!

Kahe profile image
Kahe

Hi Mona, I love your enthusiasm and thank you for sharing. Wishing you so much adventures on your Camino walk, you are amazing. I am Er + her - , have been on ibrance plus letroz plus faslo since Sept last, having failed on ribo.....follow up scans showing reductions each time, lung mets. I too am an exercise fan...I spent all day yesterday with friends walking in the woods and off now for my morning swim. Like Merma and Susan, I listen to my body, some days I can get v fatigued but thats fine....I make sure I rest. Generally tho exercise is what keeps my body well and my mind strong...I am sure the Camino will be fab xxx

CalGal56 profile image
CalGal56 in reply to Kahe

Thanks Kahe! Exercise is key! It really helps with the roller coaster ride we are all in! I hope you enjoyed your hike!

Red1246 profile image
Red1246

So happy for you! Afraid I have no tips but my best friend has done the Camino several times and loved it. Says it’s life changing. She says hood boots/walking shoes so important but I’m sure you know that. The Camino has a face book page you may want to look at. Very interesting to read tips and anecdotes from those walking it. Enjoy!

CalGal56 profile image
CalGal56 in reply to Red1246

I checked out the Facebook page - a great resource thanks for the tip!

LibraryGeek profile image
LibraryGeek

Wow Mona, you are such an inspiration and have a great, positive attitude. No advice but just wanted to wish you a great trip.

Jackie x

lovnmycat profile image
lovnmycat

Wow, that 's impressive! I take Ibrance in the evenings because I get joint stiffness so if I plan on being more active then taking at the end of the day or later in the day helps me. Good luck and thanks for being an inspiration.

JKMS profile image
JKMS

I’m currently travelling around India and as a fair amount of ‘healthy’ people get sick here, my oncology team said there could be safer places! However, so far so good. They did suggest I stop taking lbrance a few days before and for the duration of the trip but as my bloods tend to be OK they said it was my call. So I have decided just to continue with the meds. Hope you have an amazing time!

CalGal56 profile image
CalGal56 in reply to JKMS

Amazing! Have a fabulous journey!

Mimigram profile image
Mimigram in reply to JKMS

How were you able to get a refill on your Ibrance while traveling? I know they will allow one extra month of Ibrance if you are going to be traveling. Is that what you did?

JKMS profile image
JKMS in reply to Mimigram

Ah no I wasn’t travelling for over a month so that wasn’t an issue. They won’t allow this unless I get blood tests wherever I am so I do find this limiting as ideally I would stay overseas rather than keep on having to come back! My next thing is wanting to travel to the Middle East but I have my three monthly scan a month before travel and I don’t fancy travelling if there is progression but will have to book not knowing whether there is or not🙄

AvidBooklover profile image
AvidBooklover

Not sure what round of Ibrance you are on or what dosage. Early on on 125 in the 3rd or 4th cycle I got Mouth sores. Ask abt a script to have on hand or what to if you get those far away from home! End of cycle. Dropped to 100 and not an issue again except mild maybe twice at end of cycle.

CalGal56 profile image
CalGal56 in reply to AvidBooklover

Great advice thanks! I am on a low dose 75 mg.

Totheriver profile image
Totheriver

Wishing you a wonderful trip💕

NPmary profile image
NPmary

I couldn't do it Cal, but it sure sounds like you ca and will. Believing in you.

SushiLife profile image
SushiLife

Excited for your trip! So glad you have the perspective to go out and live a full life despite the challenges. I’ve been on ibrance for 4 yrs and know the fatigue is real, but I’ve learned to chart my expected dips of energy based on where I am in the month. I’m super tired toward the middle and end of the third week, but a perk up right after the beginning of the fourth week when there’s a break. On those low days, I still get out and go, but I start later, go a bit slower, drink extra fluids, pay attention to protein, and take a break when needed. Otherwise the next days I’m completely stuck to the couch and can’t do much. I can go for miles that way. And it helps tremendously that you’re already fit. Prayers for you!

13plus profile image
13plus

That's great! I am also a big believer in exercise - I teach it! lol. I had 8 weeks on a couch earlier this year becasue I broke a bone in my foot and got covid. It was so hard to miss my routine and it's taking me a while to get back after so much time off. Anyway - go girl! Hydrtae extra well and rest when you need to, otherwise you'll be fine. Might be good to read the tips. on htat FB group though. I recall a friend years ago did it and had trouble dealing with blisters, but they may have done a longer route

R7777 profile image
R7777

hello Mona! I travelled everywhere!!!

Thr only advise is keep the dugs in your personal bag not check in luggage. And don’t pay these greedy insirance companies their money…. For nothing.

TeddyChowChow profile image
TeddyChowChow

Oh this is so encouraging. Since my diagnosis, and subsequently shielding through lockdowns due to COVID, I have become horribly out od shape and honestly intimidated about doing some of these big activities. I love reading about all the travel, climbing, etc everyone has done! I just need to get going again. I miss my former active self!

CalGal56 profile image
CalGal56 in reply to TeddyChowChow

Go for it Teddychowchow! When I hit a low I get up and just do a brisk 20 minute walk and once I am out there I get charged up and find myself walking back in the door an hour and a half later - LOL. The best thing I have done is get a dog that I have to walk morning and evening 🦮 before and after work! You can get back into it!

Best521 profile image
Best521

Seize the day! Go for it while you are still able, fit, healthy and your Oncologist approves. I was triple negative early stage, mutated to ER+/Her 2- advanced stage. I travelled to the Middle East this past February and March without any incidents. However three people on my trip became ill with "Flu Like Symptoms". My oncologist had me come off Ibrance 3 days before I left, pack Covid Test Kits and bring Paxlovid with me. I stayed on Letrozole throughout the trip. I wore a mask indoors, except to eat, and in large crowds. However outdoors, in uncrowded space, I felt free and back to my old self. It was the best medicine. Considering travel options now for the summer and next year.

CalGal56 profile image
CalGal56 in reply to Best521

Great advice thanks!

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