Medical Alerts??

[210savannah]

Hello I was diagnosed with CLL/SLL in December 2018. I have P deletion of 17th chromosome. I have been on Ibrutinib for 10 days and have seen dramatic results already. Question: Do any of you carry medical alert cards to identify your condition and to inform about the meds you’re on? Just wondering since the risk of bleeding is greater with the Ibrutinib.

[Cllcanada Top Poster CURE Hero]

Its a good idea to put that information on your cellphone lock screen... paramedics will look at them. iPhones have a way to access health data, on Android, you can have a scrolling message or wallpaper with your info.

You can get jewelry devices as well... perhaps a medic alert bracelet.

Anyone who has had Fludarabine or bendamustine is at greater risk for transfusion related graft verses host disease, tGVHD, and cards are available at least in the UK from the NHS... In these cases we need gamma irradiated blood for all transfusions...

The risk of bleeding certainly is elevated on Ibrutinib, so in an emergency it would be important for a surgeon to know this.

I carry a courier type bag all the time and I have 6 months of my medical data, doctor list, medications lists and so on... I never leave home without it... man purse.. actually its a camera bag...

In house, I have a medical chart kept in plain view in a binder... I also have a MY CHART, password to my complete medical files... in my binder.

Paramedics are trained to look for these, at least in my province... and they travel in the ambulance with me to the hospital ER.

~chris 🇨🇦

[Ironj]

I agree with Cllcanada

I have type 2 diabetes as well as SLL. I’m not being treated for my Sll but I list every medical condition and all meds I’m on including mg on my Apple cell phone home screen.

[81ue]

I ordered and now wear a medical bracelet - they make fashionable ones these days.

It has my name, diagnosis, RX Imbruvica, and phone number to a family member printed under the tag part.

[annmcgowan]

Hi I am on the Flair trial, on ibrutinib. The trial provide a medical alert card to carry.

Ann

[Ironj in reply to annmcgowan]

Best wishes with your treatment.

[annmcgowan]

Thank you. Good luck with yours.

[UK-Sparky]

Absolutely, on the FLAIR trial as Ann has said, we are given a card to carry. As that font of wisdom CLLCanada shares please do carry info, plenty of options, I carry a folder with an excel spread based summary of blood tests, biopsies, treatments, medications., key contacts etc. (Specialist said it is best he has seen), 3 weeks ago when my smugness was side swiped by my grandaughters kind gift of a sneeze, A&E were delighted to have the summary, saves time. carry the info, you never know when it may save some time in initial treatment situations.

UK Sparky

[virdieblue]

I wear a dog tag necklace with my info

Virginia

[cook4650]

I am on 10 different other meds, in ADDITION to ibrutinib, for various other issues.

I'm 17p deleted as well. I have always carried a list of my meds in my purse, and my husband knows that. And of course each of my doctors has that list in my chart. I feel having that list on your person is of vital importance. In fact, I've been trying to find a type of medic alert bracelet, pendant, SD card, or other medium to carry my list even closer. Haven't found it yet. And by the way, CONGRATS on your wonderful ibrutinib results!! I had the same reaction when I began treatment, and for me it's been a miracle. I've been on it for over 3 years now, and my hematologist says that he'd never know I had CLL. As for side effects, all I have is brittle nails and a tendency to bruise easily. Onward and upward!