Being new to CLL, is it generally safe to travel (visit friends and family and vacation) with CLL considering our compromised immune symptoms? Also when treatment begins and B-cells are destroyed is okay to travel then also? Thank you!
Post COVID Travel with CLL: Being new to CLL, is... - CLL Support
I was diagnosed 10 years ago and have had treatment, before Covid I travelled the world although the last couple of years it has been cruise holidays. After treatment travel insurance can be more expensive.
Thank you for that advise! What vaccines are recommended for CLL? I got my flu, tetanus and pneumonia shots. Did I miss any?
Sorry somehow my post disappeared but check the area you are going to visit to see what is required but don't forget no ' live' vaccines'
Before I knew I had CLL we went on a safari and we got a required vaccines. We we're considering getting yellow fever shots (which is live), but the doctor felt it wasn't necessary for the areas we went. If CLL was in me at that time it could have been a disaster.
This is how my husband got diagnosed. We were booked on a safari the time last yr and my husband got the yellow fever vaccine. Five days later, his whole neck swelled up (huge) A trip to the ER revealed a blood cancer and a week later a CLL diagnosis (followed by a CLL that progressed to a PLL diagnosis) I thought the yellow fever vaccine gave him CLL but now I understand he could have got yellow fever which is why you don't get a live vaccine. He didn't get it and he's almost finished a yr treatment of O&V. Also, my 21yr old brought COVId into the house from college just before Thanksgiving and lets just say we were all living, touching and breathing the same air. My 17yr old then got it, followed by my 14yr old and 12yr old. Guess what...not only did I and 3 of our older kids not get it but my husband didn't either.
You're really fortunate that you all didn't get the dreaded COVID. It's amazing that you didn't since it's so contagious. How did your husband do on O&V? Was it well tolerated? How were the side effects? Thank you1
It is amazing. They all had their hands in the same cutlery drawer, my husband was drinking out of their left over cups (he only told me that after the fact) and we had the non symptomatic ones who came down with it one by one after Thanksgiving at the Thanksgiving table (at that point you can't just banish everyone to their rooms).....and he got a negative test back! I have a son in the seminary (where it came from) and I know he felt awful about bringing it in so I put it down to the power of prayer!! He had an awful reaction to the first O infusion (we were very naive and had not done any research on possible reactions). After a half hr in he felt very nauseous, sweating profusely, and lost consciousness. The rapid response team was called, the infusion stopped. The following day he got severe abdominal cramps that landed him in the hosp for a week (and they never let up) The dr said the infusion had nothing to do with it because he only got a little of the infusion but they never did find out what was causing them and I'm not convinced. So, as he had swollen lymphs throughout, the dr said they would do V and return to O. He did the dose up in hosp and no problems. Returning to the O was very scary but after the 3 days of prescribed steroids, no problems and he's finished that now. The V upsets his stomach most days (average 4hrs a day) He finds if he takes it without food, its not as bad. He gets diarrhea and is still very tired. He was mentally ready to be finished in Feb and now the dr says they want him on it for at least another yr. His numbers are all in the normal range and they said if it was CLL he would be off it in Feb but as his is more aggressive they don't want to take him off. There is a part of me that would like to see him come off and hope for a long remission, and they said that might happen but if it comes back, it may not be as effective, they wouldn't start him back on it until he was 50% worse, and he may have to go back to the infusions. If only we had a crystal ball..........
My local hematologist told me that he thinks I'll need meds within a year. The options we discussed were O&V or R&I. I told him preferred the O&V because it was limited duration, however the side effects are a definite concern. I'm going to get a second opinion from a CLL specialist in Boston. Although my local doc seems competent, he's not a true specialist.
I can't speak on the R&I but my husband got great results from O&V. If you feel a bit upset on it, its only for a year and honestly, it amazing and your numbers will be in normal range very fast. I'm still not sure why his progressed to PLL but his markers seem all over the place. People seem to have one or two but he has type 2 13q deletion (it took out the RB1 gene), 7p (still can't find any info about how this pertains to CLL) trisomy 12 and BCOR and BIRC3 abnormalities. As I haven't been in to his dr app since last March, I have a lot of questions as I gain more knowledge (hubby happy to just roll along) But as it is more aggressive, O&V got everything under control and I would highly recommend it based on the results. Good luck with your journey.
And regarding your travel question, the CLL specialist told us to go on the safari and she would treat him when he got home! so we did get to go!!
Sorry to belabor this, but was your husband able to continue working during treatment? We’re not quite ready to retire yet.
No its fine. He was a pilot and once you are on V they take your license away. I should add that he turned 65 this yr so he would have had to retire anyway. Its a bummer about his license because he is teaching our boys to fly and he can't sign them off or fly a small plane. He tried to get his license back but the FAA have decided that you can't fly a plane while on V which doesn't make sense to us. I think he definitely would have been able to do the job while on it. And he does everything here at home like he always has.
Just to give you some comfort, I’ve done about 70 overseas trips since my diagnosis in 2001. I started taking Venetoclax in 2018 and have done 7 overseas trips since — including giving myself G-CSF injections and having blood tests in Johannesburg, Arusha and Zanzibar. I cancelled 4 overseas trips this year because of COVID and I’m currently shifting trips from 2021 to 2022 for the same reason. Go well and travel safely. PS: I live in New Zealand so overseas travel means a minimum 3-hour flight.
Thank you. We're in the US so New Zealand is an all day flight for us. It is on our bucket list. Curiously - what are G-CSF injections?
In short, they’re injections for people whose neutrophils are dangerously low. my.clevelandclinic.org/heal...
Also, G-CSF drugs typically need to be kept in a temperature controlled environment of between 2 and 8C (36 to 46F). That's particularly challenging on international flights, though I've always been able to arrange storage in an aircraft cabin refrigerator. Even worse, not all domestic aircraft have refrigeration storage on board, including some of the commonly used Boeing 373s. You can use G-CSF drugs within 72 hours that have not been kept cool enough, but you really don't want the extra concern that your G-CSF shots may not be all that effective when you are at increased risk of infections from travel related exposure. You can take recognisable ice packs on board to keep your G-CSF cool, but expect to take longer to get through security, as your ice packs are further tested. You also must make sure your ice packs are just beginning to melt as you pack them around your G-CSF, or you risk freezing your G-CSF!
Never check your G-CSF into hold storage. Not all hold storage is temperature controlled and you don't want your G-CSF sitting out on the tarmac in 40C+ conditions during transfer.
Neil, it’s a particular challenge when flying from Wellington to Johannesburg via Sydney. I bought one of these:lunchboxinc.co.nz/collectio...
Worked a charm!
Try Australia to Europe via Dubai, when it was nearly 40C at 5:30 in the morning on arrival at Dubai after ~14 hours in the air. For that trip I only had to keep my IgG below 25C and I wasn't aware that I could negotiate to take the extra bag on board. I packed a data logger into the bag and during the 2 hour transfer wait at Dubai, the data logger recorded an increase from 10 to 19C.
I think we should write a combined post on how to travel when we have medication requiring temperature control. I received very little helpful support from the airline help desk prior to travelling, but excellent support from airport personnel.
Happy to do that. Qantas wouldn’t let me use their fridge but they would give me ice. Had some challenges transferring from one safari lodge to another and also transferring from South Africa to Botswana but my neutrophils improved while I was away.
I never realized that you can self administer IGG. I thought it had to administered in a medical facility.
A growing number of us are switching to subcutaneous IgG infusions. There were many advantages over IVIG even before the coronavirus pandemic. Typically administered weekly, you get far better maintenance of your IgG serum levels, not only because of the more regular top-ups, but because the IgG gradually diffuses from the subcutaneous delivery site into your blood stream.
"Post COVID..." I'd say give it another year or so!
Travel can be very safe, as long as you use your own transport, avoiding all contact with other people, the air they exhale and the trail of virus particles some will have left behind.
Visiting friends and family is another story, and here you have to question yourself. What have they been doing to keep Covid out of their lives and how do they propose to keep you safe? What is the disease prevalence where you're going? What is the trend? How vulnerable do you feel (CLL may be less a factor than age and other medical conditions) and how do you feel about passing Covid to friends and family? Are you prepared to delay travel until the vaccines have done their work?
Before Covid I traveled 100,000 to 200,000 miles a year to 6 continents. I was careful wearing a mask on planes, hand sanitizing and be choosy about food, but I'd didn't let CLL stop me from an African safari or mule rides to the bottom of the Grand Canyon or diving the Great Barrier Reef or climbing to Machu Pichu or enjoying crowded museums in NYC or Paris or Berlin and much more. Post COVID, I will keep my mask on even more and use even more hand sanitizer. There will be a new normal for us, but it won't be lock down or back to the way it was before.
The Boston group is great with Judy and Jim and Larry. Yes. my wife and I founded the CLL Society. Miss being "out there"
The coronavirus pandemic has had a devastating impact on the airline industry and travel in general, and I felt very terrible when I couldn't travel. While the whole world is getting out of the global lockdown, there is nothing more important than the rules of hygiene and safety. For example, my sister decided that she would not pay attention to the pandemic and became very ill. I decided to postpone my trips and a couple of weeks ago my wife and I went on a small trip. We took this trip very responsibly and carefully planned it. He helped us with this dbfahrplanauskunft.com/de and we were able to have a very cool weekend together.
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