Will more of my lymphocytes be normal ones within my first three weeks on Brukinsa?

[davidgrush]

I have had an international trip planned for 3 weeks from now. Should I not go due to potential for side effects or infections?

[AussieNeil Partner Administrator]

That's something you need to discuss with your specialist, though I would suggest that international trips would be best avoided for at least the first few months after starting treatment, so you better know how your body has adjusted. Your ease of access to good, knowledgeable medical care during your travels would be a very important consideration.

Your lymphocyte count can be higher than your treatment starting count for several weeks after starting treatment. It can take a year or more for your CLL tumour load to come down significantly. BTKi treatments, (the 'brutinibs'), work fairly slowly.

Neil

[ArtistBlacksmith]

Aussieneil has it nailed. My experience on Zanu is that first few weeks were fine. Then the side affects started. These were unpleasant and lasted about 4 months. All this time my lymph count increased from 11 to about 140 ( I started treatment for platelet issues not lymph probs) as the Zanu flushed my system out so to speak. It took 6 months before they plateaued and started to fall again. Personally I'd get through the side affects before travelling

[Mango357]

If do decide to travel many members have made very good proactive suggestions. Get Travel Medical Insurance, Emergency Medical Evacuation & Trip Interruption Insurance travel insurance (find one that covers pre-existing). Many posts recommended Allianz annual coverage. A "To Whom It May Concern" letter from the hematologist would also be a good idea in case you do need to see a GP/ go to hospital/ carry or get antibiotics & antivirals, as well as a copy of your most recent blood tests. If a foreign language is spoken at your destination see if you can find a medical center with hematologist who speaks your native tongue prior to traveling in addition to verifying coverage for consultation if needed. Last but not least pack Brukinsa, N95 masks & hand sanitizer plus items for gastric issues. You may also want to consider carrying a COVID-19 protocol on your trip. Nitrile gloves help in sketchy places.

[davidgrush in reply to Mango357]

Great suggestions. Thank you. Just got a covid booster. Will start brukinsa after the trip instead of before. I'm on medicare but will get medical travel insurance also to be sure of coverage. Will be in France and Italy.

[Mango357]

You can verify the links below prior to travel just to be safe. Treatment would not have been suggested unless the hematologist thought it was needed. It would be good to know where you can get help if you have an episode overseas. I wish you the best.

gustaveroussy.fr/https://ww...

newsweek.com/worlds-best-sp...

[davidgrush in reply to Mango357]

Yes. Thank you for the great links. My regular hematologist wants me to start any time. My cll specialist told me that he expected that I would be fine until the end of May, but said that he would not wait longer than that. Since seeing the cll specialist, my numbers have been going down, so the upward acceleration that caused him to say it is time for treatment has stopped for the moment. Since I don't have any other symptoms, others are asking why the doctor wants me to start medication. It was due to the doubling only. No swollen nodes or spleen. No fatigue or night sweats. I'm in a a bit of a gray area, but don't want to cancel my trip. I am at about 200k lymphocytes. I am going with your suggestion about added travel insurance, although my medicare does cover emergency and urgent treatment.

[scryer99 in reply to davidgrush]

I had a doubling rate of 3 months, counts near 200, and some swelling and fatigue symptoms late in treatment. The swelling in my spleen culminated in a US Thanksgiving hospital stay for splenic lacerations and pleurisy, which pushed me into a "treatment starting immediately" mode.

Still, I managed one last international trip before starting treatment.

I had good travel insurance (the aforementioned Allianz product) but did not need a claim.

I've since curtailed air travel and most crowds / indoor venues while on treatment. I've needed to of late, immune system issues have been significant.

My advice would be, if there's not a forcing event making it medically necessary to start treatment immediately, to get your trip in as a "last hurrah" and then stay home and get better.

I'd also discuss it with your oncologist, with an eye towards knowing what issues might lead to requiring immediate hospitalization and what to tell the local docs. Mine gave me some good advice on how to avoid issues during my trip. And my spouse appreciated the doctor's OK (and played good cop to keep me from doing dumb things while traveling).

[Mango357]

Sorry the first 2 URLs posted without a space in between. Other oncology locations are listed in Newsweek.

Italy

ospedaleniguarda.it/EN/hema...

France

gustaveroussy.fr/fr/cancer-...

Newsweek Global Cancer Center List

newsweek.com/worlds-best-sp...

[Journey2028]

Each year I've been going to Europe from Canada for 5 weeks driving all over staying mostly in appartments or sometimes BnBs I do keep my mask on the flights and in stores if it's busy For 5 years and since the beginning of being diagnosed with CLL Most dangerous would be catching something when you are taking immunosupressants like in my case Calquence I was in the hospital for almost 1 month last year in France with a fratured pelvis the care was amazing and luckily I did not need surgery Surgery is what worries me the most since I am now looking to have a knee replacement which is scary Good luck with your travels and be sure to buy a decent travel insurance

[davidgrush in reply to Journey2028]

Thank you for the encouragement. So glad to see what you are doing. You are having a life despite the risks.