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CLL Support Association
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Travelling with CLL

Does anyone know if your a relapsed patient Of CLL and will be taking Ibrutinib or other drug is it possible to travel ?

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if your feeling ok with the ibrutinib i don't see why not. Just don't forget them

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Thank you . I’ll find out by early July if I will need it . Waiting for results and my next appointment is early July

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The question would be whether to can find affordable travel insurance, and what might be available will vary from country. You would want to know whether preexisting conditions are covered. Also whether your health insurance is recognized wherever you are going.

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Hi regarding overseas travel and insurance. I’m W & W 11yrs now and no treatment. I got a quote not declaring my CLL and it was $197.00. The quote from same company declaring CLL shot up to $1452.00. God knows what it would be if I was having or had treatment.

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I take ibrutinib and travel all the time. I’m headed to Cabo next week, Norway in June and NY in July. Lol. I started doing my bucket list trips after my diagnosis. It’s the one good side effect of Cll for me. I’m trying to get the most out of every day, grateful for just getting up and feeling okay. And there is a good chance I may have another twenty years to do bucket list stuff with all these new meds. Who knows?

I wouldn’t plan a trip the month you start ibrutinib. It’s a little nerve wracking wondering if every little thing that’s off is some side effect. After a month or so for me, all ibrutinb was is another pill I take in the morning. I adjusted to it in just a few weeks.

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What deletions do you have Cajunjeff?

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Norway is amazing!

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Norway is where I’m going.

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Same here Jeff. Florida, North Carolina, Portugal and Belize this year. Bucket list trips a great ‘side effect’. Great advice about first month - had same worries to start but adjusted soon. Safe travels and enjoy.

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Thanks, Jeff. Have you had any issues with expensive travel insurance on Ibrutinib?

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I don’t even know if they get insurance for me, I am embarrassed to say. I’ll have to check. My office assistant books for me, she’s mighty thorough so I guess I have insurance, at least for my Norway trip.

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Thanks Jeff. Get up to Lofoten if you can. It is worth the trip.

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Better check if your insured .

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Hey man, don’t put the gris-gris on my trip. :)

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Sorry. You’ll do fine .

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I did not travel for some 17 years whilst on various treatments (FCR, Bendamustine, etc). However in the last year have been abroad on short breaks some 4 times. Currently been on Ibrutinib for the last 2 years and now due to go away in the next 5 weeks to Poland.

I always use a 3M's 1863 face mask whilst on the plane (the best I have found).

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Face mask is an interesting idea. Is it not too uncomfortable on a long trip?

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I have only done 3 hour flights and have no issues with the comfort of the mask. I do change them twice on these short haul flights to prevent them becoming saturated with moisture.

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My husband is on ibrutinib, and he has still been able to travel. To get the travel insurance I went on to the website that macmillan recommended, and we have to pay extra insurance, but it's worth it for a peace of mind.x

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Do you mind telling me which company insured you . Are you in the U.S because I am in canada so it's different. I don't think I could buy insurance with a U.S provider when I live in Canada. Last time I asked my insurance provider they just said I had to be 6 months stable and never said if I pay more they would insure me for CLL. Actually when I checked other company they refuse to ever insure anyone with CLL or any cancer. Stable or not stable. When the time comes if I need new treatments I will do investigation to other insurance companies I didn't know about last time.

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I took a trip to Sardinia last July. When sorting out travel insurance nobody would quote me until I was 30 days into treatment (Ibrutinib) which I started in June. Squeaked it by 2 days and got an annual policy covering Europe for £70. Certainly pays to shop around and seek out specialist insurers. Good luck.

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That’s interesting. Who are you insured with?

No insurance company I have spoken to is interested in which treatment I’m having. The question for CLL is always the same. Are you having treatment or is any planned? Answer yes or no.

It could be chemo, pills or any treatment. When ive queried it telling them they need to update their questions they say the questions are set by a medical team.

Benny

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Try World First.

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Thank you.

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I checked and this is a British company .I can't use them if I live in Canada. I can try later my present insurer which is Blue Cross.

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Thanks. Just tried them but they won’t insure me.

Age/& or other conditions probably affect it.

Benny

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I travelled to Denmark last summer, I had been on a clinical trial of Ibrutinib for 2 years, which I informed the insurance company and was not an issue. I also had a letter from my consultant agreeing that that I was well enough to travel and with a brief description of my medical status. I checked which hospitals in the area I was staying, had haematology departments with consultants with CLL knowledge, along with carrying, with my passport, key statements about my health issues, in Danish.

If there is a notable time difference between your home and where you are travelling, I would check with a medical professional what time would be best to take your medication.

Not sure where you are going but I am sure all will be fine so enjoy.

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I have travelled extensively in the last 7 years touring more than 40 countries which I started about 2 years after being diagnosed in 2010, the same year as my husband died. I decided to think positively & to put CLL from my mind as much as possible.

I’ve had 3 separate episodes of chemo & I’m on my 3rd week of Ibrutinib. I’ve not had many problems travelling & it is exciting!

I’m off to Greece next week & have trips planned to Oman & Malaysia.

The only problem is that being on Ibrutinib has more than doubled my travel insurance & a slight concern about side effects at the moment.

Good luck in your travels.

Benny

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I have insurance for travelling . After I finished treatment if FCR back in 2013 for 6 months I didn’t travel because of being nutropens but 6 months later my Iberian ended said if I was 6 months stable I would be inspired for CLL. Now it’s just over 5 years stable but recently showing signs from last blood tests I may require treatment again but my hematologist said it would be pills so I have to wait for results from the latest blood tests . Genetic testing, molecular and whatever else they are testing .

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5 years diagnosed and 3 years on Imbruvica and we’ve never stopped traveling. Two trips annually to Mexico ( from US) plus Canada and routinely all over the USA as well as 2 cruises in last two years and 2 more planned in 2020.

I’m wondering if this “ extra travel insurance “ is more of a European / Canadian issue than a US issue. We do buy insurance for our cruises. As for those I’ve yet to be asked if I have any serious illness

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If you are feeling up to traveling, enjoy your trip.

The travel insurance I acquired for a planned June trip to Tuscany, my gift to myself for my 80th birthday, asked only if I was receiving treatment for an illness, and if the medication had changed in the last few months. I didn't have to share my diagnosis or the names of drugs I'm taking.

Because we need to be prepared for unforeseen circumstances, it is important to have a few weeks extra of the medication, in case travel is extended for some reason beyond your control. If you don't have enough, you can call the specialty pharmacy you use and request extra pills for travel. If they can't make all the arrangements, you may also have to contact your insurance company to have them allow the dispensing of the extra pills in the time period allowed.

I will also pass on helpful advice previously shared by Len. I save the bright yellow "hazardous chemo drug" bags in which my Ibrutinib comes, and put all my drugs and supplements in the bags when traveling. When the monitors at bag check see the warnings, they immediately push them through, not wanting to even touch them. Saves a lot of time and explanation. You've likely already considered that meds should be in carry-on, and not checked -- just in case your luggage winds up at a different destination.

Because I am now more susceptible to bleeding, overreaction to bug bites that sometimes become infected (no, I do not scratch), etc., I also carry blood stop products, bandaids, antibiotic ointment, portable netti pot (for use after being in crowds), and sterile wipes for sanitizing things like armrests, handles, etc. In fact, I'm glad I accompanied my grandson to the Registry of Motor Vehicles on his 21st birthday, to get his adult drivers license. When I saw him have to put his face up to the eye test machine, I realized that I need to have wipes with me this month when I have to renew my license.

Enjoy your trip.

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Thanks you for your information . It’s very well appreciated.

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Great advice!

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I agree that you can and must travel. BUT you shouldn't the first month or so that you're on Ibrutinib. There are potential side effects, especially at the beginning. Most are absolutely easy to treat, I've been on Ibrutinib for 3 1/2 years and have had nearly every side effect and here to tell you that you can still enjoy life.

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Thank you for the encouragement

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I am about to start treatment and the travel issue is a biggie for me. I have been travelling extensively in developing countries for 8 years on watch and wait, no problems. I rely on my credit card insurance (which I have, unfortunately had to use several times) but have never bothered to declare the CLL.

I will retire soon and want to continue travelling in remote and underdeveloped places. The comments here about travel insurance are a bit alarming. Does anyone know if treatment on Ibrutinib would result in long-term issues with travel insurance?

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I don’t know where you are situated but in the UK you need to declare all medical conditions.

Ie if I don’t declare CLL & I make a claim for another medical condition & the insurers ask for my medical records they wouldn’t pay out because I had failed to declare it whether it had any relevance to CLL or not.

Also they might try to argue that your claim condition was actually a result of having CLL.

It wasn’t an issue when not having treatment but it is very expensive declaring Ibrutinib & not many travel companies will issue an annual policy.

Happy Travelling

Benny

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I was recently advised that I needed treatment, but asked to delay because of a planned trip to Namibia. Also planning a trip to the US and another one to Brittany in the summer, before treatment. My oncologist said it was fine, I just had to be careful about infections. He gave me a bunch of antibiotics to take with me. Apparently no issues with malaria prophylaxis.

Travelling to countries where you might need a yellow fever vaccination might be problematic. It is a live vaccine, so we cannot get it. However, WHO recently revised their guidelines and a booster every 10 years is no longer needed. So if you got the vaccine before CLL you should be fine.

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Good news about the yellow fever vaccine- I had to stop traveling to Congo when I got sick. However, you need to do your paperwork before you go because in some places (including DR Congo) they insist on vaccinating you at the airport (and collecting money for it). Best of all, get someone local to pick you up at the airport and argue for you!!!

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I also have doubts about flying and cll and heart

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