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Back from Vacation

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#1 CallMeLucky


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Posted 01 August 2011 - 09:12 AM

Last week I gave a big F.U. to CML, packed up the car and took the family on vacation.  Eight hour road trip to Virginia.  We did eight days of amusement park, water park, swimming, walking around in 95+temp and had a great time.  I found myself not thinking about CML that much.  I was fine most days as long as I didn't stop and sit for too long.  The water park day was the hardest, 10+ hours wave pool, water slides, walking around etc. but I had a blast and so did my family!  I was wiped that night, but who wouldn't be?  The worst part was that day I had walked around for a while with nothing on my feet and the hot ground burned the soles of my feet.  My skin has been real sensitive and this was the only real mistake I think I made.  I was careful all week with sun block and wore SPF shirts and did not burn at all.

The amusement park was really great.  If you ever consider going to Busch Gardens they have an amazing program for people in our situation.  I try not to play the CML card too often, but I knew standing in line all day long in the sun was going to seriously hamper my experience.  I went to guest services when I got to the park and explained I had a medical issue that made it difficult for me to stand for long periods of time, especially in the sun.  They said "no problem", entered some basic information in their system and gave me a blue bracelet.  I didn't have to wait on any lines.  Most rides had a "Quick Que" line that let me walk right up to the front of the line with up to three other people.  This worked really well.  We flew through the lines and it gave me time to rest in between.  At the end of the day I didn't ride any more than I would have but it gave me the ability to take it slow and take breaks in between each ride which meant less overall time standing.  No one gave me a hard time or dirty looks (or pathetic looks).  It just was what it was.  The park attendants were all really cool and polite about it.  In fact one ride I did wait on line because it didn't have a Quick Que.  When I got to the front of the line the attendant saw my blue bracelet and said to me quietly "sir, you do not have to wait on any lines, just come through the exit and we will get your going".  It was nice at the end of the day to be able to get right on the tram and exit the park.  I also paid an extra $5 for "preferred parking", which lets you park near the front gate, it was totally worth it.  So if you ever go, be sure to take advantage of this great program.  For my kids I just told them I bought special passes (i.e. "Quick Que") so they were fine with it, as they get older I'll have to come clean, but I figure by then they'll know and I'll have enough time under my belt to assure them that while I have a medical issue, I am ok and not going anywhere.  I'm going to have to watch with my little one, he's very observant.  The older one just took what I said and was content with it, the little one always has follow up questions.  He saw the bracelet and asked what it was for, I told him "Quick Que", he looked at it and asked "why does it have a picture of a wheel chair on it?" I paused for a second and then said, "because they use the same bracelet for people with special needs".  He smiled and said "that's cool".

I have another two days off before returning to work.  And there is still some more things lined up for this summer.

CML is certainly a prevalent issue in my life but I'm trying my best to not let it hold me back.  I enjoyed myself very much in spite of CML and I plan to keep doing so for many years to come!

I hope everyone is feeling well.  Peace!!!

Date  -  Lab  -  Scale  -  Drug  -  Dosage MG  - PCR
2010/Jul -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 1.2%
2010/Oct -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.25%
2010/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.367%
2011/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.0081%
2011/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2011/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.00084%
2011/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.004%
2012/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Dec -  MSKCC  -  Non-IS  -  Sprycel  - 100 - 0%
2013/Jan -  Quest  -  IS  -  Sprycel  -  50-60-70  - 0%
2013/Mar -  Quest  -  IS  -  Sprycel  -  60-70  - 0%
2013/Apr -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.036%
2013/May -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.046%
2013/Jun -  Genoptix  -  IS  -  Sprycel  - 50 - 0.0239%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0192%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0034%
2013/Oct -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0054%
2014/Jan -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0093%
2014/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.013%
2014/Apr -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0048%
2014/Jul -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2014/Nov -  Genoptix  -  IS  -  Sprycel  - 100 - 0.047%
2014/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0228%
2016/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Dec - Genoptix  -  IS  -  Sprycel  -  100 - 0%


#2 lala


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Posted 01 August 2011 - 09:49 AM

Hi...where is the FB like button?  ;). Sounds like you all had a great time!  I need a nap after reading about all your adventures in that heat...yikes!  My oldest child, Greg, is visiting this week and just last night asked about our trips when he was young....they really do remember everything!  :) Happy to hear you had a great time.  Lala

#3 grannyd


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Posted 01 August 2011 - 11:23 AM

Hi Lucky. so glad you had a great time with the family, that is what life is all about!!! My son & family live in Virginia, Busch Gardens is a wonderful place, have gone with them a couple of times & I really enjoyed it! I am going to Virginia for my grandsons 2nd birthday next week & they have mentioned going there again. Thank you for the "TIP" on going to guest relations. So glad you was able to do all the things with your boys, there is alot of walking there & it had to be tiring on you. I was there last year before diagnosis, I was worn out but figured it was just my old age--58--but I think it was the start of my CML creeping in. Enjoy you next few days off, making memories with the family is priceless!!!! Prayers to all, granny d

#4 SunNsand



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Posted 01 August 2011 - 11:29 AM

Sounds like a wonderful time and thanks for the Quick Que tip!

#5 Susan61


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Posted 01 August 2011 - 12:49 PM

HI:  So glad you got away with family to relax and enjoy the time together.  Yes, this weather has been brutal.  You should have had something on your feet.

I have never been to Busch Gardens, but I have been to Virginia for vacation.  My husband loves to shoot pool since he was a kid, and they hold the big tournament every year in Virginia.  He likes to go watch the tournaments, and just spend the week there going out to do different things and try new restaurants.  We found it so relaxing.  The people there were wonderful too.  We have not gone now for a few years, but its somehing to think about again.

Everyone needs to get away from your regular routine and stress of life once in awhile.  Also, glad your back with us.


#6 janner25


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Posted 01 August 2011 - 06:43 PM

Awesome vacation Lucky!  We used a pass somewhat similar when we were in Disney - although it was not for me (didn't even occur to me), it was for my autistic nephew.  Wonderful programs they have and I'm so glad you investigated and were able to enjoy the vacation to the fullest!  We are in Delaware so Busch Gardens is on our 'list of places' to visit since not too far from here.

Rest up the next few days .

#7 dee145


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Posted 01 August 2011 - 09:14 PM

I just got back from Ocean City, MD for a week.  It was VERY hot but I lasted on the beach a couple of hours, no burn.  Next day we went to a waterpark for 7 hours and I did fine, actually got a tan.  We stayed by the pool one day and 1 bad day of rain but I was so relaxed and did't have to use my xanax as often.  It was so nice.  It was 4 women and 5 kids, you would think I would of been eating the xanax but I wasn't.  I walked the boardwalk, not the whole thing like I use to but quite a good bit.  I amazed myself!!!  But now I am home and back to the way I was.  I got put on Buspar in between the xanax to help with the tenseness and tightness of my body, don't always shake.  Their not addicting but also don't seem to help, maybe need more time to work.

Next year we are doing a big family vacation to Williamsburg, VA.  Were there when my grown kids were little.  We went to Busch gardens and Water Country USA Park and they loved it.  I hope I can still be in remission and get to go, thanks for the tip about waiting in line. I got a handicapp plague for my car cause the Gleevec affects my legs so bad but don't use it to often unless a hill is involved.  Don't do hills very well.

It was very hot at the beach but I got a tan out of it!!!!  Shoulders and face were red one day then tanned and I am a blonde with blue eyes that burn easy.  I did use a lotion with small amount of sunscreen.  Had to get something out of the trip!!!

My major complaints right now are achy legs and the tightness and my body getting tense on me.  I can handle the fatigue, I just sit down for a bit, but then I get stiff when I get back up.  Legs and knee's ache alot and the charlie horse things.  Im still PCRU so I guess that's good.

But you CML"ers you can tan just be careful about it.  I did. I am not one to lay on beach all day anyway,never was.  Couple hours then we go back to the house to the pool.

  I wish I was still down there cause I was so relaxed.  We had a very good time and I was all worked up about going but it worked out.


#8 acb


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Posted 01 August 2011 - 10:34 PM

Glad you had a great vacation!! We went to Disney World in early June, and I didn't even think about getting a pass. Luckily, I did fine the whole time (way, way better than I even expected), but this is good to know in case there is a time when I might need it. I did make the mistake of getting a little sunburn on my face the very first day -- that made me a tadbit miserable and mad at myself for letting it happen.

My husband's family has a cabin "on" a lake (you have to go down this huge, wooded, ravine to get to the lake -- which means you have to come back up the ravine when you are finished and tired) -- now if only I could get a pass or bracelet for that! By the time I get to the top, I am huffing and puffing as if I smoked 4 packs a day or something (and I have never smoked my entire life). Part of it is the CML/TKI effects and part of it is that I am seriously out of shape!

#9 carrie


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Posted 19 December 2012 - 04:47 PM

Dee ,

I too have the stiffness in my legs after I have been sitting awhile and then I get up to walk. I almost feel like my legs don't work. It is not painful but stiff. I have been on Gleevec for 5 years. I always thought it was the Leukemia but I have heard that Gleevec can cause the leg discomfort and stiffness. When I drive for many hours, I have an extremely difficult time getting out of the car. I look strange walking. I am overweight and I think that doesn't help but yes my legs get stiff.

I wish there was something to help this.


Diagnosed   2007

On Gleevec for 10 years

Results from 2007-2012 not shown below

International Scale from 2012 until now

Never went to 0























14.109   Changing to Tasigna 7/7/17


7/28/17  800 mgs Tasigna

10/5/17  600 mgs Tasigna (Lots of bad side effects)

10/16/2017    PCR down to 0.141  

1/15/18          PCR down to  0.066   Dose reduction again. Now 400 mgs daily.

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