Traveling with early stage CLL

[KYOTOLOVER]

My husband (77) was recently diagnosed with early CLL. So treatment is not needed. He feels mostly fine and is not getting sick more than a healthy person. We planned to go to Japan next month for 3 months long stay but I wonder if the long journey, and jetleg could harm him. Is it too risky? He would really love to go as it is his second home but I am very worried that it could be dangerous for him.

[That1Guy]

There are others here with actual experience with this, but I can tell you that I was also very recently diagnosed, and my blood work shows that my immune system should mostly be working. Like your husband I have rarely gotten ill. If I had the opportunity to visit Japan, I absolutely would. I would just take some precautions (mask up on the plane. etc.). I'll let the more experienced folks go into more detail, but I certainly wouldn't think you should cancel the trip.

[KYOTOLOVER in reply to That1Guy]

Thank you for your kind reply. I am mostly worried about the plane journey but hopefully wearing a mask should be ok. Also, one needs to be very careful about the food. I think no raw fish or salads...I also think one should enjoy life as much and as long as possible, but I must say, I am very worried that something could happen to my husband. Emotionally it would mean so much to him after a week of total despair upon receiving the diagnosis.

[Newdawn Administrator]

Obviously be guided by his specialist but I certainly travelled normally when I was on W&W. Our emotional needs are equally important and this trip sounds important to your husband. I’d say take all the precautions you can and go for it! I loved my visit to Japan.

Best wishes,

Newdawn

[KYOTOLOVER in reply to Newdawn]

Thank you, I think you are right. I just need to overcome my fear. Of course, we will consult the doctor.

[rcusher]

I travelled to Thailand for one month, 2 years in a row. Once on W&W and the other while on Ibrutinib. Had no problems but these dates were just before covid. I also just returned from a river boat cruise in Europe and I am currently in a clinical trial but my Dr. said I was stable and I had no problems at all. BTW, I'm 76

Jack

[KYOTOLOVER in reply to rcusher]

Thank you Jack! This sounds very incouraging. I am very glad for you. Life is there to be lived and enjoyed. If we let fear govern our life, there will be not much left.

[rcusher in reply to KYOTOLOVER]

That's my philosophy but one still has to take all precautions you think you need.

[CycleWonder]

Before you go, it would be prudent to get any vaccinations he may not have had yet, such as for Shingles, pneumonia, flu, tetanus, and Covid. His immune system is likely working better now than it will in the future.

[KYOTOLOVER in reply to CycleWonder]

Thank you. We will get vaccinated for sure. O think we should go.

[Sanders9 in reply to KYOTOLOVER]

Declare his CLL on your travel insurance. Get a letter from his consultant to say fit for travel and take it with you. Also get a copy of his CLL file from the consultant and take it with you. Enjoy your trip

[KYOTOLOVER in reply to Sanders9]

Thank you so much.

[MrMidnight]

My biggest worry when I went to NY six months after being diagnosed in 2013 was health insurance cover. Here in NZ, I couldn't find anyone to insure me for any health complications related to CLL. My doc recommended I travel while I could and the trip was fine (and I'm very glad I went) but I was anxious about any medical treatment I might have needed in the US.

[KYOTOLOVER in reply to MrMidnight]

Luckiky, my husband has health coverage. So that should not be a problem. Thank you anyways for your kind comment.

[RZ8983DV]

I have travelled extensively while on W and W but with COVID I have become wary of crowds in airports and on planes. On initial diagnosis your immune system is normally not that different to some one without CLL. I liked Japan and I would go for it, though it is over 30 years since I went there

[KYOTOLOVER in reply to RZ8983DV]

Yes, the airports and planes are problematic, but we will be extra careful. Japan will make him very happy as it is the place where he grew up. And that is most important. Thank you very much for your kind response.

[thb4747]

Hi,

I agree with some of the other respondents. I say “Go for it”!

I’m 76, have had CLL for 22 years with many treatments and am currently being treated with Venetoclax (200mg daily). I live in NZ and have been overseas more than 50 times since diagnosis.

While on Venetoclax I’ve been to South Africa 2x, Australia 3x,

Kenya, Japan, Cook Islands, Netherlands and Germany — and I missed out on 2 years during Covid! Looking at travel options for 2024 now.

Have a great time in Japan.

[KYOTOLOVER in reply to thb4747]

Hi! I was so happy and relieved to read your reply. And astonished!! You have been to so many places. Well done. It shows the right attitude. Thank you for sharing it with us. I read your comment to my husband and he said, well... we will go too!!

[kitchengardener2]

I would check with his team. I was diagnosed in 2018 but didn't need treatment until 2021. We travelled widely without problems but my consultant said not to go where access to good medical care/hospitals wasn't available. I think we would only go as far east as Singapore now and then only as a stopover to Australia/New Zealand. We have a European only travel insurance, an annual policy. To add cruise cover or worldwide would have added another £800. We are currently in Spain with Portugal, France and Spain again planned, hopefully over the winter. I am being treated with Acalabrutinib which I have tolerated well, although I shall never have full remission, my consultant gave me a letter stating that I was safe to fly and had good partial remission. Just a word of warning, don't ask for special assistance at airports. This caused untold problems with Jet2 which has still not been sorted. All we actually wanted was Fast Track but our travel agent got mixed up. They now need extensive forms, letters etc from doctors which cost over £80 per trip.

[KYOTOLOVER in reply to kitchengardener2]

Thanks for your incouraging message.

[KYOTOLOVER]

Thank you. We will.

[PaulaRichmond]

I am wait and watch over 5 years. Went to Ecuador six months after diagnosis for a wedding. Get doc approval and enjoy.

[KYOTOLOVER in reply to PaulaRichmond]

Thank you Paula.

[wizzard166]

Hey Kyoto

I'm 76 and have been on Watch and Wait for five and a half years. We love travelling, and even through COVID I never stopped once. We've done multiple International trips, in addition to many trips annually to Boston and New York and North Carolina.

A year ago we went to my Daughter's wedding in Jerusalem. In February of this year we went for a six week trip to the Philippines to visit my Son and his soon to be five year old Daughter. This past May we went to New York City to attend the Graduation of my Granddaughter at Columbia University. Last Month we spend a week in Ashville NC.

My point is: What are you worrying about? Go and enjoy life.

Carl

[KYOTOLOVER in reply to wizzard166]

Yes, absolutely true..I think we stil did not process the initial shock upon receiving the diagnose. Fear is our second worst enemy. But we will get better with time. I am glad receiving so many positive messages that gradually give us another prospective of the situation. So thank you Carl!

[wizzard166 in reply to KYOTOLOVER]

Aside from the travelling, which I wouldn't worry about at all, I'd also like to mention that our illness isn't the worst one to be dealing with. When my diagnosis came I had actually been waiting for it to arrive for quite a while. So it wasn't a shock to me; more, just shrugged my shoulders and thought its about time. Before me my Father, his Mother, and his Mother's Father all had it. My Grandmother went to age 93 with it. Too hard to remember my Great Grandfather but he seemed to be really old to my little self. My Father unfortunately went early at 71, but I really blame that on the damn Medicare HMO that he had. I truly completely believe he'd have gone as long as his Mother if not for horrible coverage. With today's improved treatment we have even better odds.

Carl

[KYOTOLOVER in reply to wizzard166]

That is very incouraging to read. In my husband's family nobody had it and the only worry he had so far was the rather fast worsening of his eyesight. Now we found out that that is also one of the manifestations of CLL. It attacks the retina and in his case fast. He lost 50% of his vision so far. But, enough of lamenting..let's hope and work for the best. Thank you so much Carl

[wizzard166]

Kyoto

I forgot to add one thing to my comment about travelling without fear. I was able to get my doctor to write a script for Paxlovid, just prior to my trip to the Philippines in February and March. Fortunately I never needed it, but I think it was smart to bring along. I also had a script filled for a Z Pak, just in case I had a bacterial infection.

Carl

[KYOTOLOVER in reply to wizzard166]

Sure, we will take medicine with us...just in case...

[KirbyBH]

I was diagnosed with CLL in 2005 and am still W&W. I am 81 years old and my husband and I have taken many trips to Europe over the years with no adverse reactions. In fact I do not remember catching anything from the many trips we have taken except a small cold one time. One thing we do is take Zicam with and take one each night before bed. It is not available in Europe so we bring it from home. Maybe just a coincidence but I think it helps kill germs and has kept us well.

[KYOTOLOVER in reply to KirbyBH]

That is really great. So glad for you. I will see if there is something similar to Zicam in Europe. Thank you letting us know about it.

[larrymarion]

I've travelled around the world--China, Tibet, Turkey, Tanzania, Eastern Europe, Peru, Florida--with CLL for 17+ years. Part of the time in W&W, part of the time during and after chemo, followed by ibrutinib, acala, and Venetoclax. Only time i was ill came after a 12 hour delayed plane ride without a mask. Really bad case of pneumonia. Others have already given you great advice for your husband's safety, so i'll add a few ideas for your piece of mind:

1) make an appointment at the travel clinic attached to the hospital/medical center where your CLl doc is affiliated. Typically infectious disease department will be able to review his records and determine what immunizations, etc. he needs. Also write Rx for Paxlovid and Z pack, as others have mentioned. Also ask them about quality of medical care, pharmaceuticals, etc. there. My impression is that the quality of Japanese meds and medical care are quite high, which may also reassure him/you. Among the tests he/she should order are blood work to analyze three parts of your immune system: IgA, IgM and IgG. The immunologist can then explain your husband's level of immune system strength, which may give you some reassurance about risk tolerance.

2) Wear an N95 mask and a face shield when on the plane (s). That's a big lesson learned!

3) Read this article for more ideas, like what type of OTC meds to take with. Zicam is a great idea. cllsociety.org/2023/02/trav...

4) My original hemoc advised against eating raw fish after chemotherapy destroyed my immune system. I love sushi and began to eat it about a year after the chemo. Never had a problem. It would be a shame to visit Japan and not have real sushi.

Bon voyage!

[KYOTOLOVER in reply to larrymarion]

Such a wonderful kind message. Thank you so much.I am so glad you traveled to so many wonderful places without much problem. I wish you have many more in the future. The shield and the mask N 95 absolutely! And everything else you mentioned. Good you mentioned Ig tests.. we will do it for sure. As for sushi, yes it would be a shame not to eat it, but we will have to be careful where to eat.

[larrymarion in reply to KYOTOLOVER]

You're welcome. Funny story about eating in a foreign country. When we went to Tanzania my cousin went with, as a fellow amateur photographer. My wife and I were extremely careful about what we ate--nothing fresh, only well cooked, etc. My cousin ate everything offered. After three days of no problems, i couldn't resist salads, etc. Never had a problem. so maybe you can be your husband's guinea pig, testing everything first?

[KYOTOLOVER]

That is a good idea! Also, once we know his Ig values, we could find out more how his immune system works. He absolutely adores sushi! We were in Japan last spring, before he was diagnosed with CLL ate everything you can imagine, including some cheap, street food, took many train rides, ....and he was absolutely fine. Let's hope this time he will be fine too. But he is loosing weight a lot and is very worried about his situation so it is understandable that he is worried about traveling again. Thank you so much for your kind messages.