Travel with CLL

[CCgroup]

I am 81 years old, diagnosed with CLL in April 2019. I have been on ibrutinib since February 2020. I was getting a number of side effects, so cut my intake from three to two 140 mg pills per day last October. This all but eliminated the side effects, with no change in my blood numbers.

My wife and I are just back to a trip to Europe - three days in Landau on Lake Constance, then an 8 day cruise down the Danube from Deggendorf Germany to Budapest Hungary. Before leaving I had a very complete analysis of my blood done. The operator of the boat, Avalon, required that all passengers be at least double vaccinated. (I have had four)

We chose to pay the price for business class so we had no risk of someone sitting close to us. In all the cities we were in almost no one was wearing a mask. We did not take the tours of the boat, so were able to maintain distance from others on shore, and where we were in close contact we put on our masks. We met some fun people on the boat, and I would have to confess to having exceeded my normal alcohol intake during after dinner social sessions.

Three days after I returned an appointment with my oncologist showed all was fine. My blood work had no significant changes at all. Now that we have taken that trip there will be more in the future.

[gardening-girl]

CCgroup, wonderful to hear about your European trip. Glad that you had a good time and terrific that you were able to avoid Covid!

[LeoPa]

Lucky you! There was a post yesterday about a new omicron variant of concern (ba4 and ba5) that seems to be spreading fast. Hopefully it will not force you to remake your travel plans.

[CCgroup in reply to LeoPa]

I hope so too. It will be Canada in the summer months and Aruba in December.

[AnneHill in reply to LeoPa]

I wondered if that was a reason the uk were taking their time giving Evusheld the go ahead.I signed an online petition and got an e mail back.

The explanation was convincing and I didnt feel fobbed off.

Members in the US are getting covid even though they have had evusheld. New variants are escaping it.

I am starting to do more with care. I cant stop living but I am nervous. It would help if I didnt have terrible fatigue.

[JEEA]

Well done. I too, had an excellent Covid -free trip in April but this time from the UK to the US and Canada. I think staying Covid free also depends on our luck with timing. When we left the UK, a rise in Covid cases was beginning. When we arrived in America, this rise had not yet happened, but did happen after we left. When we returned to the UK 3 weeks later, the rise had started to fall, but sadly there is now a new variant rising here now.

I've had my 5th vaccine now.

[BgChiLL]

My husband and I like to travel too but it has been curtailed by COVID. I am w&w since January 2021 but oncologist appointment next week will include a person talking about my joining a clinical trial. Just yesterday, we signed up to hike across England in August and have a months in Tasmania in November. I have been very hesitant about signing up for travel, wondering what that will mean if I begin a treatment. Your post made me feel hopeful.

[CCgroup in reply to BgChiLL]

The clinical trial will be interesting, but it will likely cause problems with the travel plans. you are very active, which is great. The hike sounds great, but I have trouble getting up a flight of stairs even, so no more hiking. Tasmania is great, I'm sure you will enjoy your trip there. Travel is great for building happy memories - go for it!!

[Davidcara]

I’m a so happy you had a fun and safe time. Just remember, each excursion may be different from the previous one. Hoping you realize you probably have poor protection from the vaccines due to your immune system. This is especially true if you had the vaccines while on ibrutinib. Anyways not meaning to be a downer. Just hoping you realize risk are still present. You take care.

[CCgroup in reply to Davidcara]

Thanks for the warning, but i am aware of the potential downsides. Before CLL I was tied for the 4th most travelled person in the world, so have experienced pretty much of all the problems adventure travel can throw at you - my travel now is quite tame. Travel needn't be dangerous of sensible precautions are taken, and I'd sooner be building memories than sitting around waiting for the next thing to go wrong.Cheers - Dan

[AnneHill]

I am glad your holiday went well. I am trying to do more but am very tired. We have booked to have a few nights away in the UK soon and my son has arranged a family holiday in Italy next year. Like you I will be careful but we have to live.Good luck with your travels, Anne uk

[CCgroup in reply to AnneHill]

Hi Ann. Fatigue can really slow you down. I had it, but it was one of the things that became much better after reducing my daily intake of ibrutinib. I wish you great success and enjoyment on your coming trips. Just getting out and about may help reduce the fatigue.Cheers - Dan

[AnneHill in reply to CCgroup]

Thankyou, I have had cll for 21 years and had fcr in 2010. I was a lot fitter then and the fatigue didnt start until the remission stopped in 2016. I take 280 mg Ibrutinib now.I am trying to build up my strength and you are doing the right thing. Anne uk

[CCgroup in reply to AnneHill]

Thanks very much, Anne. You must hold the record at 21 years with CLL!! Medicine has come a long way in that time. I hope you beat the fatigue - I've experienced it, and it really slows life down badly.

I've always been both a traveller and a risk taker, so I couldn't see any good reason to stop now. We are on the same level of ibrutinib, so I'm really hoping it works for you to beat back the fatigue as it did for me.

The very best wishes - Dan

[AnneHill in reply to CCgroup]

Treatments have turned up just as I needed them. They have worked quickly so some luck involved.

[CCgroup in reply to AnneHill]

May the luck hold out!!

[Yalokin]

Hello, Costa Rica.

You had a great time.

I'm not surprised that most don't wear masks.

In this case, it is more important that you wear a quality mask in case of inevitable closer contact.

You are the second person to enter my rankings. For me you are a classic. I laughed heartily.

I quote you: "It had undesirable side effects, so I changed doctors."

You have lived to a decent age and I hope everything is still with you.

Greetings from distant Bulgaria!

🙃

[CCgroup in reply to Yalokin]

Hi Yolokin:

It has been some time since I visited your beautiful country. My wife & I do indeed use masks af lot, but not possible when imbibing or eating. We are planning more trips for later this year, and of course will do so with due consideration to not only covid but other diseases.

Thanks for your note.

Best wishes - Dan

[Yalokin in reply to CCgroup]

I wish you to enjoy the opportunity to visit other countries, as well as have a great time!