I have ET w Jak2 and grade 1 fibrosis. Just put on Jakafi.
One month cruise traveling on Jakafi. Any issues... - MPN Voice
One month cruise traveling on Jakafi. Any issues since we are immune compromised? My MPN Dr said it should be fine. Enjoy your life!!
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Foostra
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that’s a short post with limited info but if your MPN doc is fine with, fair chance it’s not a issue
This was my first post and it only let me use 140 characters! Not sure why.
Welcome
strange about the 140 characters , I have never heard of that.
I am on Rux 22.5+20 for PV, I use a fully sealed FFP3 mask on flights, clinics, enclosed airless spaces, I get some odd looks these post Covid days but who cares, I have never had Covid despite my partner having it, no Flue in over 10 years+, maybe one cold a year.
I asked my expert haem re if we are immune compromised on Rux , he said that for some unexplainable reason some people are not immune compromised but some are.
I hear unfortunately MF patients need to be more careful than PV/ET more so if on any potentially immune supressing meds.
Enjoy the trip, I am in Scotland where it can be colder and damper but it doesnt affect my health.
Thank you Ainslie, I just started Jakafi 10mg BID this week for my ET w grade 1 fibrosis. So far no issues. We love traveling so I want to continue safely. We actually were on the last Zaandam Holland America cruise to South America in February 2020 before the next one that had all those people die from COVID back in March of 2020 and was left at sea for months. I'm so glad my MPN Md says we must keep JOY in our lives. So for us that is traveling, but with caution!!
Do you have any fibrosis?
i dont have fibrosis, but for what its worth my expert haem at Mount Sinai told me recently that fibrosis is not important at all , they used to think it was but they no longer thing its important, I dont know the science behind that statement but his word is good I think
Here in the USA most insuances don't cover Rux unless you have at least grade 1 fibrosis I believe. It's a better drug for us with PV and ET but those are insurance rules here!! Not sure why your Dr doesn't feel fibrosis isn't important. Myleofiborosis is grade 2 and 3 fibrosis, and that is important to know if it's progressing. Next after that is AML. Yikes!
Take care
I didnt ask my doc for more science on why fibrosis is no longer perceived to be so important , mainly because its not currently relevant to me and when I see him its dime time so I focus on what I need to know. It took me long time to chose him and he is one of the best out there.
I think saying AML is next after grade 2 and 3 fibrosis is not necessarily accurate.
I know plenty long term PV and ET patients with fibrosis who dont seem to be progressing and plenty MF patients that have had it in some cases for decades that have not and may never progress to AML. There are plenty stats out there that verify that.
I say this to try and re assure any less informed patients reading this post.
I am sure you didnt mean to be some people can get a bit frightened so its good to try and keep it as accurate as poss.
Good health to you.
Rux is approved as 2nd line treatment for PV. It requires failure on HU. More recently with my Medicare it also requires failure on Besremi. But there are plenty of gray areas here that Drs can help with. I failed Bes in a worst way so I'm on Rux.
There is no fibrosis restriction that I have seen. Possibly you're thinking of its indication for MF, including post PV MF. In MF there is no pre-failure requirement.
There has been a study looking at Rux for 1st line, one example
ashpublications.org/blood/a...
This is one of few Rux studies that did not require the tough audience of HU resist/intol pts. It's not clear whether this is leading to an actual FDA application for first line. Incyte's main patents for Rux expire in 2028. But getting 1st line indication might allow them to extend it, if so they have incentive to follow up the study linked here.
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MF and AML are separate risk paths from reports I and others have posted on. AML risk has been associated with certain non-driver mutations, ASXL1 being one. But that doesn't mean ASXL pts all get AML. Other reports in various posts match ainslie's note that fibrosis is more recognized as not a strong prognostic within ET and PV. More relevant lately has been achieving reductions in mutation levels (VAF) for Jak2 PV in particular.
I experience mild lymphopenia and borderline neutropenia with Besremi. While the numbers of these leukocytes are a bit low there is still sufficient immune response. I am not more prone to infection nor unable to fight off an infection. I do not need to take any special precautions when traveling other than using common sense. I heed the sage advice my granddaughter gave when they were taught about avoiding COVID in elementary school. "Do not lick people."
Seriously though, you can have an accurate view of your immune system by looking at the leukocyte levels on your CBC. That is what your hematologist would do to answer the question about infection risk. Suggest that you work with your hematologist to set acceptable targets for the WBCs. My goals include LYMPH > 0.50 and NEUT > 1.00. Your hematologist can do the best job of explaining the goals you should set.
Happy travels.
Thank you Hunter for your reply! My last LYMPH was 32.0% and NEUT was 3.4. I will ask my hematologist next visit. I am so blessed to have Catriona Jamieson, MD from UCSD. She is so vital in this war against blood CA's. Look her up. She is even sending blood samples from her patients to space on Spacex to study new therapies.
Our cruise is in August so I hope I have no problems with Jakafi which I just started this week. No problems so far. We cruise alot and it's crazy how so many people when on these cruises get on the buses for excursions and are sick as dogs. I will keep a mask with me but I worked in the OR so know that only N95 masks really work. This is our first 28 day cruise to England, Ireland, Scotland, Norway and Iceland. Not sure the temps and others getting sick with damper cooler weather. I usually stay healthy but I'm a born germ a phobe and try to wash my hands, use my wonderful homemade sanitizer and never touch my face. Thanks again for your insights on this website. You are a gift to all of us who have a MPN.
I asked my MPN Dr about Rux, T cells and WBC counts. He said the quantity of WBCs may be fine but the function of T cell lymphocytes can be affected. Details of how remain vague. I think the Jak1 inhibition added to Jak2 is a signif part of this effect.
This older report on Rux offers specific indicators that were affected:
pubmed.ncbi.nlm.nih.gov/258...
This report had an early proposal to use Jak-i's for autoimmunes based on the findings. Jak-i's are now widely used for A-I.
In the case of IFN it seems simpler, WBC quantity is informative.
Your medical centre is travelling with you! I have been on a few cruises since my MF 2 diagnosis. Once I needed the medical centre, after having a vomiting bug with a temperature. I was seen quickly and given antibiotics and monitored. Short of surgery, the centre can cope with many illnesses. However 24 cabin isolation…..
I think a mask on a plane is a good idea. Most people who are healthy seem to come back from a flight with a bug, as many viruses around.
Enjoy your cruise!
Hi, I went on a cruise while taking Rux, at the beginning of 2023. I was extra careful with hand sanitizer etc, & I wore my mask in the theatre. I did check with my consultants first. I was absolutely fine. Enjoy your trip & try not to worry too much.
The 140 character limit is just for the title. You can write more in the body
