Side effects and Traveling.

[Franklin2016]

Just started taking IBRANCE. How long does it take the side effects to happen and how much traveling can I do.

[Barbteeth]

Hi there

When I first started Ibrance I had bloods taken after 2 weeks to check neutrophils...mine had plummeted in that short time ( though I felt ok) I was immediately changed to 100 mg which I’m still taking

Other side effects like fatigue hair thinning anaemia etc in my experience took a few months to be obvious but then I just got used to it

People respond so differently to Ibrance there are ladies on here who have taken the high dose for years and are fine...don’t think about it too much as you’ll most likely be absolutely ok

As for travelling...just do what you always do....life’s for living....I’ve flown several times with no issues...I mix with people go to the cinema/theatre go on buses...no worries

I think reading about the side effects can make you think you have them!!

All the best

Barb xx

[Franklin2016 in reply to Barbteeth]

Thank you for taking the time to reply and ease my fears. There is so much negative information on aIbrance. I feel much better after your response and good luck to you on your journey.

[Red1246 in reply to Franklin2016]

I agree with Barbteeth. There is no normal with these drugs as we all metabolize them differently.

I began ibrance 9/6/19 and went from 125mg to 100 in one cycle due to low white blood count. I’ve been on 100 for the last 2 cycles and will continue per my onco for another couple of months. Typically I have more than a week off to Allie wbc count to elevate.

Hair thinning and I take naps but other than that and the low wbc count, I’ve no ill side effects. I remember reading the Pfizer info re side effects included with meds and was so scared. I’m delighted to be doing ok with it.

Have some dizziness but I think that’s caused by the Femara.

Hope you do well!

[Hidden]

I'll echo Barbteeth's wise (as always) words...I think you can reasonably assume you'll feel fine, except for likely fatigue, especially the last week "on" and week "off". The degree of my fatigue varies, so I just don't overcommit and stop -- literally in my tracks -- if needed. I find that, especially when I'm traveling/doing something fun, I don't notice the fatigue until all of a sudden I hit a wall. So pay attention to your body and if you feel the fatigue, just stop and rest.

Wishing you happy/safe travels! Enjoy!

[Franklin2016 in reply to Hidden]

Thank you, great advise.

[Franklin2016 in reply to Hidden]

Thank you

[Hidden]

I’ve been on Ibrance for 14 months and haven’t limited my travel at all. We bring little alcohol wipes on the plane, and wipe down our seat belt and buckle, arm rests, tray table and tv screen. Basic hygiene practices should be enough. Hasn’t been an issue for me anyway. Embrace the opportunity to travel any time you’re up for it. We went to Tuscany with friends in April and it was terrific! Don’t put it off until you feel “perfect” — an impossible standard for anyone. Enjoy. La dolce vita!

[Franklin2016 in reply to Hidden]

Hank you great advise on traveling. Good lunch on your journey.

[Pbsoup]

I have been on it since July. Not too many side effects other than low neutrophils, but they came back up now that I am on the 100mg dose. I also have low red blood cell counts, but nothing too bad. Went to the UK to drop my daughter off for her year abroad right after I started taking it. Just got back from India... We have three dogs, a cat and horses so even if I was germ phobic, it wouldn't matter. So far, so good...

[Geulah]

The time i was on Ibrance did not experience major side effects. Some fatigue towards evening

It does lower WBC,so you need to be monitered. If it goes to low they adjust the dosage. Doubtful if that could happen in the beginning. Ask your doctor about travelling. Mine allowed it as long as medical care was good asbd short distance from where I was staying.

Also w hen WBC goes down, one's resistance goes down. How long do you want to go for. Perhaps ask about travelling during week off when WBC levels go up again. Much success with this treatment,good news ,well being, for you and everyone,complete cure

[Franklin2016 in reply to Geulah]

Thank you so much for your reply. Good luck on your journey.

[Geulah in reply to Franklin2016]

I also started a new treatment,for me a big hurdle,challenge to keep positive...when we think good it actually brings good...according to kabalah sources etc. Good news

[Franklin2016 in reply to Geulah]

A great attitude is so important, thank you.

[Geulah in reply to Franklin2016]

And work...effort. looking forward to good news from u and everyone

[Hidden]

Some side effects are instant. Some go away after a few months and some stay. Honestly depends on the person and how it affects your neutrophils and platelets

[Franklin2016 in reply to Hidden]

Thank you for taking the time to ease my fears.

[ALYogaGirl]

I traveled internationally on Ibrance, no problems! Personally, I just keep making the same plans and buy travel insurance in case I might cancel at the last minute.

[Franklin2016 in reply to ALYogaGirl]

Great advice, thank you.

[ALYogaGirl]

Hey, are you in Franklin TN by chance?

[Franklin2016 in reply to ALYogaGirl]

Yes I am and you?

[ALYogaGirl in reply to Franklin2016]

No but I travel to Nashville to be treated at Vanderbilt. See private message.

[Gwennie123]

I’ve been on Ibrance for 15 months now. 125 occasionally reduced to 100 or 75. But mainly on 125. The first few months I felt pretty. Stayed in bed a lot. since then I feel almost normal. Occasional fatigue in the afternoons.

Just returned from a month trip to Europe. No problems. I did get food poisoning on the plane on the way back which took a week or so to recover from but no problems at all traveling. And ditto on theTravel insurance. It’s also necessary to get travel insurance within two weeks of booking any kind of large trip. Pre-existing conditions etc. Enjoy yourself and if you feel fatigue take a rest.

[Franklin2016 in reply to Gwennie123]

Thanks great advise, good luck on your journey

[Gwennie123]

I also took CBD oil when I had a lot of pain in the beginning. It helped Enormously. I tried the stronger drugs that I was given but they just made me nauseous. CBD oil did the trick. A few drops under the tongue and I felt “floaty. Just relief. Took it for a couple months. No side effects.

[Franklin2016 in reply to Gwennie123]

Great advise I have some on hand. Thank you

[illini9]

I don't want to be too repetitive to others advice ( lots of great tips) - I've been on Ibrance since April 2016 and am finishing cycle 47. I found that early on my side effects were a little different every month though now I've settled into fatigue, joint pain, and insomnia along with low white blood cells. Thankfully I've not gotten sick - my onc says she hasn't really seen a correlation with Ibrance WBC counts and illness - knock on wood.

And I've traveled quite a bit - for work as I worked for two years after diagnosis and for fun. I wear a mask on planes (my nurse said it's like 300 people blowing on you) and do all the things like wiping down and I try not to touch door knobs or handrails. Even wipe the remote control in hotels and phones.

Also when I travel I build in breaks - so internationally I might fly a day early to have a rest day or build in a break in the middle. Your body will tell you what you need.

I definitely pace myself differently than I did before but I haven't stopped traveling. Thankfully "pills travel" as I was told another fab nurse.

I consult with my onc if a trip calls for vaccinations or things like that - recently I went somewhere that needed some vaccinations and my onc worked with me on what I should and shouldn't have and other tips for that travel.

And as for side effects - I tell my medical team every month what's going on - even if it sounds small I share. That way they know and can track it and it also tends to generate some interesting conversations and sometimes they give me ideas for how to mitigate.

[Franklin2016]

Thank you for your response. The common theme with most of the responses was listen to your body and communicate with your doctor. Very sound and wise advise from all, thank you and safe travels.