Any suggestions on how to travel safely with CLL?

Posted by kegraves @kegraves, Jul 14, 2022

Husband diagnosed 3 mos ago with CLL. No treatments at this time, we’re planning a weekend in Vegas to see a couple of shows, we don’t gamble, but like to see shows, however, not sure with all the different viruses going around, this is not a good idea with his condition.. anyone have suggestions that have CLL on traveling???

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I had AML and a stem cell transplant six years ago. I’m on immunosuppressants, so travel and being in crowded places is challenging since COVID is on the rise again. I always wear N95 mask when I attend events etc, and would recommend that both you and your husband wear one. I would recommend eating outside, if possible, but I know Vegas is very hot this time of the year. I was there three weeks ago and was very pleased that I didn’t catch Covid, seeing how crowded everything was.

You should also check with your husband’s oncologist and see what they recommend.

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@alive

I had AML and a stem cell transplant six years ago. I’m on immunosuppressants, so travel and being in crowded places is challenging since COVID is on the rise again. I always wear N95 mask when I attend events etc, and would recommend that both you and your husband wear one. I would recommend eating outside, if possible, but I know Vegas is very hot this time of the year. I was there three weeks ago and was very pleased that I didn’t catch Covid, seeing how crowded everything was.

You should also check with your husband’s oncologist and see what they recommend.

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Thank you for your reply,his Dr said to be aware that there more viruses out there not just COVID… Vegas is always so crowded, got the opinion he didn’t think it was a great idea 💕

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Hi @kegraves, Traveling right now is certainly stressful, all the more so with someone who is immunocompromised. You may find some of the tips in this thread about traveling during COVID helpful: https://connect.mayoclinic.org/discussion/your-tips-traveling-and-getting-medical-care-safely-during-covid-19/

Do you have access to COVID-19 tests while you travel? Perhaps continual testing will help reassure you alongside proper PPE, distancing when possible, and good sanitation practices.

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I have had CLL for about six years now with no treatments. My wife and I just got back from a two-and-a-half-week river cruise in Europe, and I have had no problems whatsoever so go enjoy your trip and have a good time.

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I was diagnosed with CLL in early 2017. Still in Stage 0 with no treatment. My wife and I reduced our travel substantially in 2020 after Covid hit but after being vaccinated for the first time in early 2021 we started travelling again, being very conscientious about wearing high quality masks. I took several blood tests at LabCorp (SARS-CoV-2 Semi-Quant Total Ab) to determine to what extent I was producing antibodies in response to the vaccine and the numbers were pretty good.
In January 2022 the Omicron variant broke through my 5-month-old booster while travelling in California. I'm careful to always have home test kits available. After testing positive following the development of a cough I called my doctor who instructed me to try to find a source for Paxlovid. We found Paxlovid at a CVS that same day and my doctor called in a prescription.
It took 7 days to test negative and I never developed anything other than a bad cough.
My experience says get all the available vaccinations and don't be embarrassed to be the only person wearing a mask in a store or public indoor space but don't be afraid to travel.

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Thank you for your messages,
we are ordering KN95 masks,
so if we decide to travel, we will have some protection against the viruses that are
out there besides 😂COVID 🙏

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I think it depends largely on what his oncologist thinks. I have had CLL for 15 years. Last year was the first time I needed treatment. I had 4 infusions of Rituximab and it seemed to work well. My 2.5cm ca did not appear in the pet scan post treatment. That’s a little history. Now, about travel, I’ve been traveling out of the US for the past 5 years. I go to the Virgin Islands for business and a break. I take along antibiotics for things like a possible urinary tract infections, and also, those needed for infections from cuts or similar injuries. In addition, I bring regular meds (mine are few, just my BP pills and a prescription Iron supplement). I do carry OTC meds in my luggage (to avoid looking for an alka seltzer or Tylenol etc. at 3:am or some other inconvenient hour). I am very cautious and mask in appropriate situations. To spite this, somehow, I managed to catch Covid-19 appearing just days after my last trip. I am on my 3rd day of Paxlovid. It began with a dry cough, extreme tiredness, then a constant cough, very bad sore throat (unlike others I’ve had), headache, difficulty sleeping, joint pain and so on. I am still going through a tremendous amount of discomfort. My point in telling you all of this is to remind you that CLL means a COMPROMISED IMMUNE SYSTEM. Travel is fine as long as you are prepared and think ahead. Where you travel to is another issue entirely. If it was me, I’d avoid having to sit next to a stranger if not necessary. The plane trip is usually the unavoidable place, but I’d mask in the airport as well as on the plane. I’d also request early boarding. Just ask at the terminal desk where you will board. It’s never been a problem. Early boarding just keeps me out of the crowded
isles and the push in general boarding. I am seated with luggage placed above before the onslaught of passengers. You can accompany your husband on the early boarding call. I also am last to leave the plane unless we are seated very close to the front. Make it a point to avoid crowed restaurants and general areas of entertainment. Prior to Covid, this extreme caution wasn’t an issue (except in flu season etc.). Check with restaurants for their least crowded hours. You don’t have to give up travel because of CLL. You just have to accept the limitations put on us by Covid, flu season etc. Normally, I would not be so wordy, however CLL is a depressing and life changing diagnosis. To be able to continue to travel and have enjoyment makes it far easier to deal with. I believe I became overconfident and relaxed my cautions on this last trip. I am very tired, hurting and really uncomfortable, thus, I’m actually dictating this to my masked husband 10’ away. I felt it was important to share all this and pay it forward. Someone did it for me. Good luck and stay positive as hard as it may seem at times. He may never need any treatment, he just needs to be aware of his limitations. That is a rough one as people are stubborn when challenged by a quiet illness. The temptation is to ignore it, but Don’t.

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@lannisolochek

Hi @kegraves, Traveling right now is certainly stressful, all the more so with someone who is immunocompromised. You may find some of the tips in this thread about traveling during COVID helpful: https://connect.mayoclinic.org/discussion/your-tips-traveling-and-getting-medical-care-safely-during-covid-19/

Do you have access to COVID-19 tests while you travel? Perhaps continual testing will help reassure you alongside proper PPE, distancing when possible, and good sanitation practices.

Jump to this post

Thank you for your reply, we did cancel Vegas, but are thinking of doing a cruise next year,
with American Cruise Lines, will stay in the USA, hopefully we have new vaccines for COVID>

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@suez3

I think it depends largely on what his oncologist thinks. I have had CLL for 15 years. Last year was the first time I needed treatment. I had 4 infusions of Rituximab and it seemed to work well. My 2.5cm ca did not appear in the pet scan post treatment. That’s a little history. Now, about travel, I’ve been traveling out of the US for the past 5 years. I go to the Virgin Islands for business and a break. I take along antibiotics for things like a possible urinary tract infections, and also, those needed for infections from cuts or similar injuries. In addition, I bring regular meds (mine are few, just my BP pills and a prescription Iron supplement). I do carry OTC meds in my luggage (to avoid looking for an alka seltzer or Tylenol etc. at 3:am or some other inconvenient hour). I am very cautious and mask in appropriate situations. To spite this, somehow, I managed to catch Covid-19 appearing just days after my last trip. I am on my 3rd day of Paxlovid. It began with a dry cough, extreme tiredness, then a constant cough, very bad sore throat (unlike others I’ve had), headache, difficulty sleeping, joint pain and so on. I am still going through a tremendous amount of discomfort. My point in telling you all of this is to remind you that CLL means a COMPROMISED IMMUNE SYSTEM. Travel is fine as long as you are prepared and think ahead. Where you travel to is another issue entirely. If it was me, I’d avoid having to sit next to a stranger if not necessary. The plane trip is usually the unavoidable place, but I’d mask in the airport as well as on the plane. I’d also request early boarding. Just ask at the terminal desk where you will board. It’s never been a problem. Early boarding just keeps me out of the crowded
isles and the push in general boarding. I am seated with luggage placed above before the onslaught of passengers. You can accompany your husband on the early boarding call. I also am last to leave the plane unless we are seated very close to the front. Make it a point to avoid crowed restaurants and general areas of entertainment. Prior to Covid, this extreme caution wasn’t an issue (except in flu season etc.). Check with restaurants for their least crowded hours. You don’t have to give up travel because of CLL. You just have to accept the limitations put on us by Covid, flu season etc. Normally, I would not be so wordy, however CLL is a depressing and life changing diagnosis. To be able to continue to travel and have enjoyment makes it far easier to deal with. I believe I became overconfident and relaxed my cautions on this last trip. I am very tired, hurting and really uncomfortable, thus, I’m actually dictating this to my masked husband 10’ away. I felt it was important to share all this and pay it forward. Someone did it for me. Good luck and stay positive as hard as it may seem at times. He may never need any treatment, he just needs to be aware of his limitations. That is a rough one as people are stubborn when challenged by a quiet illness. The temptation is to ignore it, but Don’t.

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Thank you so much for this information. It really is helpful, and if we decide to go on a cruise
in 2023, hopefully, American Cruise Lines and stay within the USA and take precautions, we
can make plans and hope for the best. I am more concerned about this CLL than my husband
is, and is the one who has it???

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@hababeck

I have had CLL for about six years now with no treatments. My wife and I just got back from a two-and-a-half-week river cruise in Europe, and I have had no problems whatsoever so go enjoy your trip and have a good time.

Jump to this post

Thank you for encouragement regarding traveling. We did cancel our Vegas trip, but hope to
plan a cruise for 2023, on American Cruise Lines, within the USA. My husband isn't concerned about his diagnosis of CLL as I am more concerned and cautious regarding traveling. But your
information has helped us realize you can't just stay home and be a hermit, just be cautious and
start to enjoy life..

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