A Bright Note & Travelling with Besremi

[hunter5582]

This is just a bit of a bright note. I just finished a bit of a holiday prior to a 5-day conference in Brussels, Belgium. I had to fly with the Besremi then store it for 6 days once in Brussels. The Besremi stayed in the Yeti cooler bag with 2 ice-gel packs for over 12 hours with no problem. TSA security was no problem doing the visual inspection since it cannot go through x-ray. They did not ask for the signed doctor's note. There was no refrigerator in the room, so hotel staff stored it in the hotel fridge with no problem. For all those planning travel with one of the interferons, know that with a bit of planning it is no problem at all.

The holiday was terrific. I have been all over Brussels and did a day trip to Luxembourg. Lots of interesting sights, good food, great chocolates, and excellent beer.

The next five days will be at a Neurofibromatosis conference, another rare disease I am involved in advocacy and work with. When I get home, I will be off to the Summer Camp for youth with NF and other chronic diseases. We will be doing more work this year helping youth transition into adult care. It is a huge challenge for young adults to learn how to manage their own care. In truth, it can be a challenge for older adults too.

For any of you in the Mid-Atlantic in the USA, there is a Patient Conference in Asheville, NC in August. mpnadvocacy.com/event/ashev... I am attending and hope to see some of you there. I still plan to try to make it to one of the MPN Voice Patient Forums in the UK someday. Hope to see some of you there too.

Happy travels and all the best to all of you all!

[DiveGoddess]

Hunter,

So glad you are enjoying your time across the pond! Thanks for the update! Christy

[PhysAssist]

Hi Hunter,

Thanks for both the practical and the uplifting information!

Best,

PA

[Mostew]

Good to hear about your summer so far . Enjoy the camp .

[MaggieSylvie]

That's a happy, happy post, Hunter. I'm glad you enjoyed Belgium. I have only had a couple of little visits to Bruges and Brussels, but then I didn't have to travel so far as you did. I am impressed with your planning for flying with the meds. It's good to hear from you. I am enjoying the summer here, in the UK, which started just before the solstice. When I say enjoying, I am not getting out much, just hospital visiting every other day and doing lots of adminny type stuff on my days off. Sadly, my partner's diabetes is very brittle but it would seem that the hospital are keeping him against his will. I'm hoping he will come home soon and be back to his normal independent self.

[hunter5582 in reply to MaggieSylvie]

I hope your partner is soon recovered and free from the confines of medical care. Advances in home-care can make many conditions manageable outside of a hospital setting. Hope that becomes available for your partner.

[MaggieSylvie in reply to hunter5582]

Thanks Hunter, we have several carers, with increasing visits when he comes home, which should be soon - once a space is cleared for downstairs living (don't believe this is necessary but we are being bullied).

[Poppy6060]

Have a great time nice photo

[JAB6]

So very happy you are enjoying a well deserved holiday before the conference. Wanted to thank you again the knowledge and help you share with all of that are not well versed in MPNs.

Best to you,

Janet

[Mishie14]

Wow, what an inspirational update. Very happy you have had some personal time mixed in with the business of MPN and NF. Thank you for devoting time and energy to these topics. Your experience and expertise is appreciated.

[gilded]

Thanks for your newsy piece and thanks for your tremendous contribution to this forum.

[Bariton]

Hi Hunter, glad you liked our little country. There is more to visit, so if ever you come back to Belgium give me a sign and I will give you some suggestions!

[hunter5582 in reply to Bariton]

I will take you up on that if I get back to Belgium. I have had a great time in the days I was in Brussels. I would like to see Antwerp, Bruges, and a few other places. So much to see. so little time.

[Jennytheb]

You are having a great time, good. It is good you are able to help these organisations, they will certainly benefit from the vast range of info and help you will be able to give them!

[william-Indo]

Happy for you and smooth travel to Brussel.

Cheers

[lizzziep]

Enjoy and safe journey home 😁

[RoundTheWorld]

Thanks for the lovely positive post, great photo and tips re.travelling with meds; it’s very reassuring to read that these things are still do-able. Great way to start your summer!

[hunter5582 in reply to RoundTheWorld]

Traveling is still very doable and highly recommended. I am more actively traveling these days than ever. Planning to keep it up.

[SoledadBarcelona]

Thanks, very interesting and useful information. Change your knowledge, please.

[Kormoran]

Thank you Hunter, your comments on this forum have been of great help to me . I wish you all the very best on your travels.

[Strumin210]

I am here in the southern part of Alabama. It sure looks beautiful there. I know going places and seeing the beauty of them does wonders for the healing process. Glad you are able to do and go. Peace from myself and family.

[Cookiewoman]

Beautiful picture! Safe travels

[Hidden]

Hi Hunter - super to hear all went so well and you had a good time. Enjoy the rest of your summer! Keep well!

[Gaithersburg]

Great photo and you timed it well as summer seems to have finally arrived! Enjoy your trip and conference and thanks as ever for your positive and encouraging comments about travelling abroad.

[LIGEBA]

Sounds like an amazing journey. Thanks for sharing the details of your travels. When I read a post like this I find it very encouraging because in my mind, my days of traveling overseas are over. The fear of blood clots, the sheer exhaustion of it all, and just being that far away from home, has all been very daunting for me since diagnosis. You are such an inspiration Hunter, and I admire your energy. You give us all such hope with your genuine, informative, positive posts. Thank you for all you do. Enjoy the rest of your trip.

[Tipsy2023]

Thanks Hunter lovely to hear of your travels and Joy L

[nightshadow]

Sounds like a great time. Thanks for the advice on traveling with medications that need that extra bit of care.

[BeOutside]

Glad you are having a good trip! And thanks for the information about traveling with Besremi. I will be traveling with Pegasus in a month and I’ve worried about how to execute that part of the travel. Just curious, why can’t it go through the X-ray? Thanks again!

[hunter5582 in reply to BeOutside]

PharmaEssentia recommends that Besremi not go through x-ray/ The concern would be for potential compromise to the stability/efficacy of the medication by exposure to x-rays. While I have never seen the same recommendation for Pegasys, I would assume that there would be a similar concern. It is not a big deal to request a visual inspection. In some countries, having a signed note from a doctor can help if there are any questions.

[BeOutside in reply to hunter5582]

Thanks Hunter!!

[lakeview65]

Beautiful picture in the Grand Place, I was an expat in Brussels many years ago, fond memories. Thank you for all the information you provide, I signed up for the MPN patient day in Asheville this summer. I don't live that far away and it will be nice to meet others with this disease we live with, it can be a bit lonely.

[Ccsintx]

nice to hear your time away

It was good for me to read your post because I plan to travel soon with Besremi and I was wondering about the X-ray, etc. Thank you for the practical info.

Did you have a doctor’s note with you just in case they asked for it ?

[hunter5582 in reply to Ccsintx]

I always take the signed travel letter when flying with Besremi. I have never needed it for domestic travel or for flying out of the USA internationally; however, I did need it when flying out of Vienna, Austria. PharmaEssentia provides a travel letter along with the recommendation that it not go through x-ray that can be pre-filled in for your doctor's signature. besremi.com/pdf/BESREMI-tra...

[Laluna5683]

thank you for this great travel information.

[Exeter21]

Brilliant 🤩👍

[Kelly2]

You are a blessing for all of us! So happy to have you here!