18 replies to this topic

[Dina36]

I'm about to buy a plane ticket to go and see my dad who is really sick,

he lives in Europe and I'm here in the States. This would be my very first trip anywhere post

diognosis and I'm really nervous about it. My latest PCR  Test Results were 0.006. I'm nervous

what if myTasigna get lost or something, what if I get sick, get a fever or a cold while I'm overthere??

I haven't even ask my dr. yet if he thinks I can travel with CML.

I just dont know what to do but really want to see my father.

Dina

[Susan61]

Hi Dina:  The hardest part for me would be to fly.  I have always had a fear of flying.  I think you should go see your father, so you have no regrets later.  I am sure you can carry your Tasigna in your carryon even if you had to carry a letter from your doctor.  I just say this, because I have  no idea what these strict rules are now for airports.

If you get sick well your there, just treat it like you normally would.  Don't try to place all your concerns on your CML.

I am sure you will be fine.  Just calm down and make your arrangements and go.  See what everyone else thinks, but its your decision to make.  I think you already know that you have to go.

      Have a good trip, and you will be glad you saw your father if he is so sick.  My father died the day before I got to see him, and it always bothered me.  God Will Bless You With a Good Trip.

Susan

[Happycat]

Dina,

I agree with Susan that you should go rather than stay home and have regrets. Call your doctor and find out what you should do if....  He has run into this before I'm sure and can certainly give you some peace of mind about your ability to travel.

Best of luck to you and him,

Traci

[Johnc]

Diana36

I went through the same thing my first two months into treatment. Ask your doctor, bring your pills on your carry on.  Bring a few extra with you longer than your stay.  Also. Have a back up plan to have them sent out from your home to your new destination should something happen with your supply. Bring purell with you and if you need to bring a mask while on your plane do so.  Position yourself toward the front of the plane in an asile seat. I think there may be better circulated air.

You will be fine, but most important ask your doc.

Johnc

[super99]

Dina,

I was diagnosed with CML on 6/8/12. But I had already bought the tickets to go see my family in South East Asia back in February. I will be leaving the country next Wednesday. I asked my doctor about my trip and he said the drugs can go across the border and it was okay to travel.  At first, I wasn't sure if I should travel because of the side effects, but I agree with Susan and Traci that you should go see your father.  My father passed away before I got to see him (right before I had an outpatient surgery). And it always bothered me like Susan's comment.

But before you go, talk to your doctor and get all the meds you think you would need before you leave. This way, you don't have to worry about seeing the doctor while you will be there.  Maybe you should take history of your CML diagnosis and lab results with you. Let someone close to you know where these documents and your mdes are in case you become sick. Good luck and have a safe trip should you decide to go see your father.

Sup

[CallMeLucky]

You should definitely go.  There is no reason not to.  If your pills get lost, you will work it out and get replacements FedEx'd to you or something like that.  Worst case you miss a few and start again when you get them.  Plenty of people take breaks for various reasons and it does not impact the long term outcome.  I just got back from a trip, granted it was in US, but I have gone out of the country post dx and have not had any issues.  The only thing I do is carry my Gleevec with me in my carry on, I don't put it in my checked baggage.  As long as it is in proper packaging no one has ever said anything.

As far as getting a cold or something like that, you would be fine.  CML is not an obscure disease and if you got sick it would likely have nothing to do with CML.  There are brilliant doctors in Europe.  I can understand not wanting to get into that situation for overall lack of comfort, but it is highly unlikely and you would be fine if on the off chance it did happen.  Go see your dad, live your life in spite of CML.

[tranier]

Hi!  I just wanted to encourage you to take that trip!  My son, BJ had transplant for blast crisis CML and we have flown many times over the last few years.  Get a letter from your doc..you will be able to preboard with babies and wheelchairs..Also...keep your meds with you...with your letter you will be allowed...If you have any extra you could mail them to your dad's or a relatives....The first time was so scary...BJ is 21 but I acted like he was an infant...Bottom line is to NOT allow CML to prevent you from living...Don't let worries of tom keep you from living today...Seeing your dad is probably just what you need...PS we have learned to always buy the travel insurance....Our faith must be bigger than our fear!

[Tedsey]

No worries.  We just got back from Japan.  I was dx Nov. 2009 and my PCR is much higher than yours.  I carried my pills in my purse and brought some extra.  I had my doctor write me a letter explaining my dx and what drug I was on and how much (but I forgot to bring it).  But you could have your doc do the same if there is ever an emergency.  Bring your onc's email or number with you.  We brought our iPhones and had the Internet and telephone whenever we needed.  I also bought a Powerstick to charge my phone when there is no electricity (you can also use it to charge a camera or computer).  Our trip was uneventful healthwise for me as I expect it will be for you too.  But it doesn't hurt to have these checks and balances in place.   

I wish you well and safe travel.  I also wish the best for your father.

Tedsey

[LLsurfer5@gmail.com]

Dina:

Go on the trip. I have had CML for three years and just got back from Northern Europe. I can say, like Tedsey take extra pills. Keep them with you EVERYWHERE YOU GO. I WAS warned about hotel staff or other persons possibly taking pills out of your room. You know how much these drugs cost.

I got one bit of advise I was told by my dad:

Live to fight this cancer; don't let the cancer fight with you. Sure you will have to take extra precautions on the plane, face masks hand sanitizer ALL the time, but go see your family. Don't let your cancer be the excuse not to see them; you may regret that later.

You take gingersnaps for the nausea and get a prescription of Tramadol for headaches. Have your doctor prescribe and fill a Z Pack or another antibiotics and take it with you. Itls like camping.......just be prepared for everything.

Stay strong

Laurie

[Dina36]

Thank you everybody for your responses and support and I agree with you guys that I should definitely go.

I was just done talking to my doctor and he said the same thing that I should go because my blood looks good NOW

What does he mean when he said  it looks good NOW, does he suspect sometime in the future it wont? Ahh doctors!!!

Also, he said that I can take any pain medicine with Tasigna but from what I was reading here and hearing from you guys I think that

Tylenol would be hard on my liver if I can remember it correctly. What about Motrin? What I need from you guys is to tell me what medicine is SAFE

to take with me on my trip just in a case if I need it for a headache or even if I get a fever or something?

Oh one more thing my doctor thinks I don't need any letters to take with me.... just to take my Tasigna and GO.

Hi Tedsey,

Where did you buy Powerstick? I just got my new Samsung Galaxy phone and was thinking to take it with me.

HI Laurie,

How can I get a hold of Z-Pack or another antibiotics? I don't think my doctor would

prescribe them to me since I don't need them right now.

Man my head is going to explode with all of this, maybe I'm taking it harder than I should plus I HATE to fly, I've been always afraid of flying

and its at least 14-15 hour journey. So Susan you are not alone on this one lol.

Dina

[Tedsey]

Hate to say it, but your doc does not seem to have much experience with CML.  Don't worry about that ignorant comment he made about "now".  Like someone dear said to me once, "Who is he?  Karnak the Magnificent?"  I don't think an M.D. qualifies one to foresee the future.   

Anyway, I bought my Powerstick online. 

I like it because I am always forgetting to recharge my phone.  The powerstick has attachments for all phone brands.

Best of luck,

Teds

Message was edited by:Abena

[LLsurfer5@gmail.com]

Dina:

Just ask him to give you a prescription.  I asked mine and any oncologist would think it was a good idea since Dr. visits will be limited.  He prescribed my a Z pack incase I got a cold or flu.  It was cold, sleet and snow where I went and we were outside alot.

Or you can ask him if he would like to prescribe any "precautionary" medicines to take and see what he says. Tell him you will fill it and if you don't need it you can give it back to him. 

In response to what elseto take on the trip; a medial alert bracelt or necklace is always good; that helps if TSA has to look at all the pill bottles in your carry on.

Enjoy your trip

Laurie

[LLsurfer5@gmail.com]

TEDS and Dina:

That is funny TEDS; "Karnak the Magnificent"  maybe the doctors "Crystal Ball" was in the shop for repairs. Dina, like TEDS said I would not worry too much about the commnet. I too don't think he has had too much experience with CML either.

Laurie

[GerryL]

HI Dina,

I was flying to the states 4 months after diagnosis and my original Hematologist wanted me to use Heparin injections to prevent DVT. I switched doctors just prior to going and my new doctor said that since my blood work was in the normal range I didn't need the heparin injections anymore than someone without CML.

[CallMeLucky]

Dina,

Your CML is under control, it's only been 8 mo and you obviously have a lot going on.  It is easy to latch onto words when most likely the Dr did not have any other thought in his head.  When he said your counts look good now, that was a factual statement in proper context.  They look good now, perhaps that is in contrast to how they looked 8 months ago and not a premonition of what he thinks they will be in the future.

If you were going to Africa you might want to stock up on supplies, but as I understand it you are going to Europe, you haven't said where but I am assuming it is most likely a civilized and modern society that will have doctors and pharmacies that you can visit if something were to go wrong.  You don't need preemptive anti-biotics for your trip.  You wouldn't want to take an anti-biotic for a viral infection anyway.  If you get sick you will be able to see a doctor and get an antibiotic there.  The good news is that unlike in the US, you will find that you probably won't have to pay to be treated.

Life is hard and it is scary; our minds can be our best asset and worst enemy at the same time.  Live your life!

[Dina36]

Thank You everybody,

Thank You Lucky, I agree with you I really do.

I think after my dx I have become more sensitive and pay way to much attention

to every single word that comes out of my doctors mouth.

It's funny how we remember every single detail form our conversations with our doctors

whereas they leave everything behind themselves the moment they leave that room.

Dina

[sandimartini47]

Hi Dina,

Everyone has had some good ideas so far.  I ask my oncologist to give me a perscription for an antibiotic to take with me whenever I go away before I leave and she has no problem giving it  to me.  She tells me not to take it unless I need it.  Also when I get there, I find out the phone number of a local pharmacist and if I have a problem, I call my doctor back home and ask her to call me something in at the new pharmacy.  So far, it has not been a problem.  Life would be very boring if we did not go anywhere.  My oncologist always, says, "Live you life" and that is what you have to do-- particularly with CML.  Have a great time. sandi

[Dina36]

Thank you Billie and Sandi for your advice,

thankfully my father has gotten a little better but I still want to go to see him and I will be traveling at the end of August,

his kidneys has stopped working and he was put on dialysis, he is 78 years old.

I do miss him and haven't see him in 6 years.

Dina