Flying on a plane after starting Ibrutinib

[Livingwithcll]

We have plans to meet our kids in Israel at the end of June. If my husband starts Ibrutinib soon, are there any travel restrictions? Has anyone out there been told not to travel?

[zaax]

No but take a letter saying what the pills are for from your doctor & make sure you have plenty just in case you cant get back for a while

[debs24]

Hi

I started taking Ibrutinib over 10 months ago and have since enjoyed return flights from the UK to Florida twice, and from the UK to Spain once.

My docs were happy for me to travel and I have never experienced any issues with carrying my medication through airport security checks.

Have a great trip!☺️

Debs.

[Cllcanada Top Poster CURE Hero]

Original containers from the pharmacy, with the label on them... with your name and the name of the drug and dose.

Pack your pills bottles in one clear plastic bag with nothing else...

I always remove them from the bag for hand checking, rather than putting them through the xray baggage machine...

Be certain to have travel insurance... safe trip... ✈️

~chris

[SouthFloridaLady in reply to Cllcanada]

If you hand carry your meds there is less chance of them getting lost.

[Lola69 in reply to Cllcanada]

Why do u not let them go through the X -Ray machine Chris?

[CLLCalifornia-USA]

I always make sure I am aware of the time zones so I can continue taking my Ibrutinib at the same time each day. I figure it out before I travel thru different time changes. Enjoy your trip. Sally

[AmericanRonin]

In terms of travel to foreign countries, some countries have restrictions on the quantity of prescription drugs you can bring into the country. I am an American living in Tokyo. I am only allowed to bring in a 30-day supply of a prescription drug and need to carry documentation, including the prescription paperwork. It's unlikely my bags would be thoroughly checked when I enter Japan. But you're going to Israel, where they will check them as thoroughly as North Korea would (!). So you might want to check their laws.

[AmericanRonin in reply to AmericanRonin]

* I met Netanyahu once and was VERY thoroughly searched beforehand by his Israeli security!

[Livingwithcll in reply to AmericanRonin]

It must have been fascinating having the opportunity to meet him. The Israeli government doesn’t mess around. I’m sure you were searched on many different levels before being in his presence. You have a fascinating occupation. I’m so glad to see that the CLL hasn’t slowed you down.

[AmericanRonin in reply to Livingwithcll]

The meeting with Netanyahu was before I was diagnosed with CLL. If I had CLL at the time, the security team probably would have discovered my enlarged lymph nodes in my neck and alerted me (after making sure they weren't a concealed weapon)!

[bkoffman CLL CURE Hero]

No problem. I have traveled 100,000s of mile while one ibrutinib. I always take extra just in case there is a delay.

[Livingwithcll in reply to bkoffman]

Thank you for sharing your experience. It gives us a sense of relief knowing that we can still live and enjoy life while he is on Ibrutinib.

[bkoffman CLL CURE Hero in reply to Livingwithcll]

My life was way better one ibrutinib compared to before I was on it.

[Farrpottery in reply to bkoffman]

Amen to that!

It’s been a miracle for my husband!!!

Blessings

Farrpottery

[SouthFloridaLady in reply to bkoffman]

❤️

[MsLockYourPosts Passed Volunteer]

I also take a round of antibiotics along, just in case.

[Livingwithcll in reply to MsLockYourPosts]

That’s a really good idea, thank you

[Farrpottery in reply to MsLockYourPosts]

We always take a couple of rounds of antibiotics also.

My husband takes his Ibrutinib at night... thane his stomach issues occur mostly the next hour or two or early in morning not all day.

Farrpottery

[csellies]

Since you are going to Israel, check out their vaccine which in trial stage as a very high success rate with 90% of cancers including CLL. Still in trials but be good to know how they are going with it in current stage of trials.

[Livingwithcll in reply to csellies]

Do you know anything more about this vaccine?

[8700paul in reply to csellies]

Could you possible give me a little more info the trial vaccine for CLL? Is it like the one MD anderson is starting under dr keating? Thank you in advance...

[csellies in reply to 8700paul]

israelnationalnews.com/News...

[RJR1 in reply to csellies]

Yes please tell us more

[csellies in reply to RJR1]

vxlbio.com/israel-ministry-...

[pinkdeer]

I've been on it for. year, and no travel problems, and we have traveled alot. Not as far as Israel, but not a problem.

Enjoy your trip!!

[starsafta]

I learned from Len to carry the prescription and meds in the plastic bag in which we receive Ibrutinib, with the BIG YELLOW CHEMO printed on it. No one wants to touch it, and they just pass you through.

You might consider wearing a mask, such as amazon.com/3M-1860-Particul.... When I wear it on planes, I don't get a cold - or worse.

Sounds like a great trip!

Shalom, leah

[MsLockYourPosts Passed Volunteer]

Make sure any mask is NIOSH approved. Amazon has a lot of cute, decorative masks that aren't N95 or N99 - many pharmacies carry them. The VOG mask (more permanent) is also approved. The masks (other than VOG) should be changed every couple of hours. Masks also need to fit properly to be effective (learned more than I wanted to during the Thomas Fire).

[Cllcanada Top Poster CURE Hero in reply to MsLockYourPosts]

Many viruses are small enough to pass right through an N95/99 particulate mask...so they offer some protection... mainly bacteria and fungi, and viruses that have been vapourized.. riding on sneezes, coughs etc...

Those thin paper masks... do NOT protect the wearer, they limit the travel distance of viral laden sneezes.. which by the way is about 200 feet...

wonderopolis.org/wonder/how...

sciencealert.com/bacteria-i...

~chris

[MsLockYourPosts Passed Volunteer in reply to Cllcanada]

At the post fire workshops the medical advisor said that N95 masks are to keep particles out as much as possible while the "surgical masks" - thin acordian folded type - are to keep them in. Not very exact science, but maybe we should take N95 masks for ourselves and a stack of the other type to hand out to the people around us.

[Irishcll]

Hi Livingwithcll

Before Ibrutinib we couldn't travel , but Ibrutinib meant we could live a more normal life.

Good luck with the treatment and enjoy the holiday.

[pkpayne]

Livingwithcll, I take both Ibrutinib and Venetoclax and I specifically asked about an upcoming trip I wanted to take and my doctor asked me 'why not'? He told me to go. Enjoy yourself!

Paula

[roszika]

Hi My advice to you is as above but may I suggest your doctor or you contact a medical facility in Israel in case for some unknown reason you have a problem.As you know Israel is at the forefront of medical advancements in many areas including cancers and if you were to have a problem it is a good country to be in. My own second cousin is a practicing oncologist in one of the hospitals in Israel. It would be good to have a contact in case you need it. Of course all drugs should be labelled and if you can get a photocopy of your script to take. Shalom- Roszika -pharmacist retired

[Livingwithcll in reply to roszika]

That is an excellent idea to be in contact with a doctor or hospital in Israel. What hospital does your cousin work at? Could he recommend somebody? We feel very confident about traveling to Israel with CLL because it is a country that has advanced medical facilities. Thank you for your suggestions 🙏

[Hoffy]

I use the N95 Mask from 3M.

Funny- I am going to visit kids in Israel as well!!

Birthright for your kids?

Someone needs to figure out the Jewish genetic connection with CLL !

Be Well,

Hoffy

[MsLockYourPosts Passed Volunteer in reply to Hoffy]

They have, at least in part. From Brian Koffman on the CLL Society page, though I've seen this many other places.

"CLL is more common in men and in Ashkenazi Jews and less common in Asians for reasons that are not well understood."

[Livingwithcll in reply to MsLockYourPosts]

Ashkenazi Jews have a genetic disposition for several cancers 😥

[RitaBa in reply to MsLockYourPosts]

Well I am Asian, female and was 50 when diagnosed.

[Livingwithcll in reply to Hoffy]

Yes, Birthright for my boys for 15 days. I’m so excited for them. I wish Birthright was around when I was young. You’re right, there is a definite Jewish connection to CLL. In my husband’s case, I think his connection is in farming and being around Roundup as well. We live in Southern California but we also have a farm in Nebraska and he has a lot of exposure to Roundup 😥 on our farm.

[Hoffy in reply to Livingwithcll]

Wow a lot of connections. I am from the Midwest but now live in San Diego . Swim in lakes a lot during the summer which I think had run off from farmland . At certain times I think you can smell the round up in the air and it’s probably in the water too.

My father had autoimmune hemolytic anemia after swimming a lot in the same lake at the end of the summer.

There is probably some connection with weak B cells that are susceptible two mutations in Ashkenazi Jews .

Be well,

Hoffy

[MsLockYourPosts Passed Volunteer]

I'm also on a farm (in Southern California) with exposure to Roundup and other chemicals, taught in inner city LA right where the 10 and 110 meet, went to SC in the days when the smog was so thick that I didn't realize that the Hollywood Hills were right there until my Junior year, have multiple blood cancers (and others) in my extended family, and I'm sure there is more. When diagnosed I thought some about the possible causes, then gave it up. What is, is. Looking back won't change anything. We have developed a medical history for this generation and those that follow, so they and their doctors are aware of what to look for, but beyond that we don't focus on it.

[roszika]

I am not sure which hospital my cousin is at. But in any case its better you get your doctor to find somewhere- ask your haaematologist- good luck