Jump to content


Photo

New to board - vacation question


  • Please log in to reply
20 replies to this topic

#1 Happycat

Happycat

    New Member

  • Members
  • Pip
  • 5 posts

Posted 10 April 2011 - 06:23 PM

Hi all,

I was just diagnosed with CML this past Thursday.  I was asymptomatic, but a high WBC (42,000) was picked up in a CBC.  We are scheduled to go on vacation in VA April 16-23rd.  I see the hem/onc for my first followup since starting Gleevec on April 14th, right before we are scheduled to go.  He had indicated before we could probably still go on vacation, but I'm not sure he knew how long we would be gone. Some questions:

1)  Can I get away for that long, or will I need to get more blood tests (weekly) when just starting Gleevec?

2)  Will I feel okay?  Able to walk around, etc?  I've seen lots of posts about bone pain when starting Gleevec.  Hasn't hit me yet, but it's only been 4 days.

Any insight would be appreciated!

Thanks,

Traci



#2 Marnie

Marnie

    Advanced Member

  • Members
  • PipPipPip
  • 396 posts

Posted 10 April 2011 - 06:39 PM

HI, Traci. . .

Sorry you had to join this club.  I was in a similar situation when I was diagnosed almost 2 years ago.  I was scheduled to participate in dirt bike (motorcycle) camp a month or so after diagnosis.  My WBC was WAY higher than yours. . .265,000.  The doc let me do the camp as long as I was able to get my counts down significantly in time, and I was.

You will probably be doing weekly blood tests for awhile, but if you need to, you can probably have those done at a hospital or clinic near your vacation spot if you need to.  It's important to monitor things pretty closely at first. . .especially as the drugs will start to bring your white counts down pretty quickly and you don't want them to go too low. 

CML is a disease that you can certainly live with.  My husband and I still kayak, snowboard, motorcycle (road and trail), etc.  You will probably have some side effects from the TKIs but you'll learn to deal with them.

Talk with your onc and set up a plan for maintaining treatment and monitoring things while you're away from home.  Be sure to get copies of all lab reports and learn how to read them.   You're probably overwhelmed with everything right now, but you'll find that you learn to adjust and life will get back to normal, though a slightly different normal than you were used to.

This forum is a great place to ask questions and get information from people who know what you're going through.

Good luck,

Marnie



#3 GerryL

GerryL

    New Member

  • Members
  • Pip
  • 0 posts

Posted 10 April 2011 - 07:31 PM

Hi Traci,

My initial blood tests were conducted weekly, so if you're away 16-23 you could have one before you go and one when you come back. depending on what your oncologist wants. 

You might be lucky and experience very little side effects, everyone is different, I didn't get any bone pain from the Gleevec.

There are only three things I suggest for your holiday - make sure you eat enough food when you take your Glivec; take some Imodium with you just in case; and have a great time on your holiday.

Gerry



#4 Marnie

Marnie

    Advanced Member

  • Members
  • PipPipPip
  • 396 posts

Posted 10 April 2011 - 08:19 PM

And use sun screen.  Gleevec made my skin really sensitive to the sun.  Sprycel is even worse!!  



#5 Trey

Trey

    Advanced Member

  • PS Beta Group
  • PipPipPip
  • 1,705 posts
  • LocationSan Antonio, Texas

Posted 10 April 2011 - 08:42 PM

You were diagnosed fairly early, so the CML testing is not much of an issue in vacation planning since you do not need aggressive blood count monitoring.  So you could skip a week of tests without any problem.  You may experience some pain from having just started Gleevec, maybe in the upper legs, which could feel like bone pain or muscle pain.  But there is no way to know ahead of time, so if it were me, I would not change vacation plans.  But you may want to have a back-up plan that would allow walking less if it comes to that.



#6 Happycat

Happycat

    New Member

  • Members
  • Pip
  • 5 posts

Posted 11 April 2011 - 11:45 AM

Everyone,

Thanks for your kind replies to my vacation question.  I'm not exactly glad to be here, but I am glad to have all of you fellow travelers as a resource.  It is helpful to talk to others who have BTDT. 

All of which means I need to get my butt in gear, start writing out packing lists, and start getting it all together.  I have 3 kids, and between packing for them and me (hubby is on his own, he's a big boy), I feel like I'm moving an army halfway across the world!

Thanks again!

Traci



#7 Happycat

Happycat

    New Member

  • Members
  • Pip
  • 5 posts

Posted 11 April 2011 - 11:48 AM

Okay, haven't figured out how to mark replies as helpful or correct. I'll save that for another day.



#8 Guest_billronm_*

Guest_billronm_*
  • Guests

Posted 11 April 2011 - 05:15 PM

Dear Traci,

Don't worry about how to respond to all of us. Just remember we are here for you. CML affects everybody differently and all the drugs affect everyone differently. The side effects are different for everybody. That is what is so nice about this site, we're all friends . It is very informative, sometimes we goof around (oh boy) do we. It is not a pity party just a group of friends talking. If you experience something weird just hop on the board chances are somebody has had that same thing. Like I said everyone is different. You haven't had time to absorb everything yet.Wherever you go there has to be a computer just type in our site and someone will be there to help you. I'm a nightowl and you never know when these crazy people are up spying on us. What I do because I'm a computer idiot is go to the home page of the computer your on type in  community.lls.org/community/bloodcancer/livingwith/cml when that comes up I just go to Treys blog and the discussion board and site are right there. Just click on that. You can join or just read all our posts but you can't answer them unless you're a member. So it's you're choice.

                      Please enjoy your vacation, don't waste it worrying. We'll help you when you get back. Some people on this site have had cml up to 15 years and you'll live a full life chances are something else will get you when you get old. Take care I have had cml 4 years and I am no young chick I think thats what causes most peoples aches and pains. If you trip or do something stupid just say I have cml gets you out of being embarrased everytime and most people don't even know what it is. I am the worlds biggest klutz gets me out of embarrasing situations every time.

                                                                   Take Care Billie



#9 hannibellemo

hannibellemo

    Advanced Member

  • Members
  • PipPipPip
  • 728 posts
  • LocationNorth Central Iowa

Posted 11 April 2011 - 05:16 PM

We can mark replies? I don't know how I feel about that. It's not like anyone wants to be on this board unless they, too, or a family member has CML. I see that as a way to really stifle participation. No offense intended, Happycat, this isn't directed to you personally. I just didn't know there was a way to "rate" responses.

Pat

Oops, was so distracted I forgot to reply. My WBCs were about 9 times higher than yours and I went to Belize 6 weeks after I started Gleevec.


Pat

 

"You can't change the direction of the wind but you can adjust your sails."

DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>


#10 PaulB

PaulB

    New Member

  • Members
  • Pip
  • 1 posts

Posted 11 April 2011 - 05:26 PM

I was diagnosed at the end of June last year and had a vacation planned the next week.  I decided to go on the vacation and thoroughly enjoyed it.  My oncologist said it would be fine.



#11 hannibellemo

hannibellemo

    Advanced Member

  • Members
  • PipPipPip
  • 728 posts
  • LocationNorth Central Iowa

Posted 11 April 2011 - 09:30 PM

I seem to be half a tick behind today. Were you just referring to marking a question as answered? I need to take a chill pill.

Pat


Pat

 

"You can't change the direction of the wind but you can adjust your sails."

DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>


#12 Guest_billronm_*

Guest_billronm_*
  • Guests

Posted 11 April 2011 - 11:43 PM

Hi Pat,

What does that expression mean? half a tick behind? I like that I'll have to remember that one.

                                                                                     lol Billie



#13 hannibellemo

hannibellemo

    Advanced Member

  • Members
  • PipPipPip
  • 728 posts
  • LocationNorth Central Iowa

Posted 12 April 2011 - 05:49 AM

Here you go, Billie

http://www.urbandict...erm=half a tick

Pat


Pat

 

"You can't change the direction of the wind but you can adjust your sails."

DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>


#14 Happycat

Happycat

    New Member

  • Members
  • Pip
  • 5 posts

Posted 12 April 2011 - 07:13 AM

Danged if I know!  I just thought I'd neaten stuff up and mark the question as answered (it popped up somehow), then it popped up and asked me to somehow or other mark individual answers as "helpful", which I assume is kinda like people on amazon rating product reviews as helpful.  I had no clue even how to do it, so the point is moot.

Traci



#15 Guest_billronm_*

Guest_billronm_*
  • Guests

Posted 12 April 2011 - 07:29 PM

Oh Pat,

You are so bad I love it. That is hysterical. I'll probably get in a lot of trouble, but what the hell I got cml. Hey I just said a new slogan. I have to study that. How on earth did you find that site? I can't wait to start using those new terms. So much for Prim Proper Irish Catholic Girl, Look out world here comes granny with a few new ticks (get it) up her sleeve or wherever. O Lord I'm corrupted already!   You are definitely in my will! You want my croceting hooks? I'm gonna be busy learning a whole new language so I wont need them anymore.                                                  LOL BILLIE



#16 hannibellemo

hannibellemo

    Advanced Member

  • Members
  • PipPipPip
  • 728 posts
  • LocationNorth Central Iowa

Posted 13 April 2011 - 06:42 AM

Oh, Billie, I hate to burst your bubble about 'dangerous' little ole me! "Half a tick" is as old as the hills, I just wasn't sure how to define it so I googled it and found that urban definitions site. Some of them are pretty amazing aren't they?

Pat


Pat

 

"You can't change the direction of the wind but you can adjust your sails."

DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>


#17 jrsboo

jrsboo

    New Member

  • Members
  • Pip
  • 0 posts

Posted 13 April 2011 - 11:31 AM

Dear Traci,

I see most of your questions have been answered, but I also had a vacation set up a couple of weeks after diagnosis.  Here is my insight. 

TAKE EXTRA DRUGS.     I miscounted my pills, and then had to ration my Sprycel.  I also had a bunch of pain, and if you are out of state, your onc cannot prescribe pain medicine for you.  So ask for some strong stuff before you go and have it filled.  I now travel with all of my daily drugs and extra dilaudid and morphine, just in case.  I ended up taking my mother-in-law's vicodin, which made me sick to my stomach.  But the pain was gone.

Also, if you are flying; call ahead and ask for a wheelchair.  I know, I know, you don't want to.  But once you are on the wheelchair list, they hold the plane for you, and if you have a tight connection this can save your butt.  Also, it is amazing how far the gates can be.  Things I never thought about before, and I had been flying my entire life (Dad worked for TWA). 

On our trip to Vegas just 2 months after diagnosis, I ended up using the hotel wheelchair for the whole visit to get from one venue to the other (we had rented a car and just popped it in the trunk). 

What does the wheelchair do?  it saves your energy for things you WANT to do instead of using up the energy for things you NEED to do.

Don't stop doing the things that make you happy, and limit the things that don't.

Caroline



#18 Susan61

Susan61

    Advanced Member

  • Members
  • PipPipPip
  • 43 posts
  • LocationNew Jersey

Posted 13 April 2011 - 06:08 PM

Enjoy your vacation.  Your only going away for a week, but just check with your Oncologist for any questions you might have.  If you are going to be taking your Gleevec well your away, just be sure to eat something to fill you before you take your pill.  The food in the stomach really helps you with absorbing the Gleevec without nausea or other side effects.  Your doctor will probably tell you to get your blood tested when you return.

Welcome to a club that nobody wants to join, but who is glad to have so many great supporters.  Please ask us anything you want at anytime.  We have all gone through different things and can certainly help you.  We have some new people, and others who have been living with CML for a long time.

I have CML since 1998, and been on Gleevec for 10 years now.

Hope we hear from you when you get back.  Have a great time with your family.

Susan 61



#19 Guest_billronm_*

Guest_billronm_*
  • Guests

Posted 13 April 2011 - 11:30 PM

Dear Traci,

Let us know how you make out at the onc tomorrow.I have 1 little piece of advice if you get nauseated peppermint hard candy is the only thing that helped me.

                                                               Have a wonderful vacation,and take it easy, I'm sure you're family will help you as much as they can.!

                                                                              Catch ya later Billie



#20 Guest_billronm_*

Guest_billronm_*
  • Guests

Posted 14 April 2011 - 12:20 AM

Dear Caroline'

How are you feeling, you were in pretty bad shape then we didn't hear from you. I was afraid the big Pneumonia got you. You're probably still pretty weak so rest a lot but check in with us once in a while just so we know you're okay.   Love Billie






1 user(s) are reading this topic

0 members, 1 guests, 0 anonymous users