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#1 Marnie

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Posted 26 October 2012 - 06:25 PM

Sprycel seems to have done the trick (yea!).  Went PCRU 6 months ago, but then bounced back up into detectible the next go-round.  This month's result was back into PCRU.  Hopefully will stay with this lab. . .long saga the past year with results that couldn't really be compared.  Doc was furious this last appt that the results weren't in, even though the lab is just across town, but the nurse called and got them. . .the lab doesn't do things electronically, I guess (hmm. . .maybe they should move into the computer era???).  Been through insurance run-arounds for awhile. . .and work has been so awful that I actually hoped for bad results so that I could use it as an excuse to quit the job.  Now that's just not a good thing! 

Been a very rough couple of months with work, family emergency in MN, work, and other stressors. . .but PCRU is a good thing.



#2 Trey

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Posted 26 October 2012 - 09:11 PM

Best news since the moose episode. 



#3 hannibellemo

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Posted 26 October 2012 - 10:28 PM

The moose episode was very good, but, PCRU, Marnie, now that's great! Congratulations!

Pat


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"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>


#4 Tedsey

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Posted 27 October 2012 - 12:18 AM

Great news Marnie!  Hurrah!  I feel bad about the whole mess you have been through.  I can totally relate.  When I was first dx, it was like dealing with the three stooges.  Glad things are working out and your results are excellent.  May they continue to be that way until you are old and gray.

Hugs,

Tedsey



#5 TeddyB

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Posted 27 October 2012 - 04:19 AM

Hurray!!

Great news Marnie

Teddy



#6 Marnie

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Posted 27 October 2012 - 06:18 PM

Already turning gray, Tedsey.  And old seems to be just around the corner, too. 

Trey. . .the other day in my classroom, I was telling the kids about an adventure where we flew our canoe into the Canadian wilderness and got socked in by weather before the rest of our crew could fly in. . . .long story, no maps, no satellite radio, no tarp, 1 meal of chicken curry for 8 people.  Stranded for 3 days in the rain and mosquitos until the rest of the people could fly in. . .anyway. . .a moose came into that story, which is why I was telling the kids.  And all that kept running thru my head was "Why did the moose cross the road?  To get away from the angry buffalo!"  And THAT PICTURE!!!  Try teaching a naughty group of 6th graders with that picture running through your mind.  THANKS A LOT!

Marnie



#7 Marnie

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Posted 27 October 2012 - 06:27 PM

Speaking of animal stories. . .have I ever mentioned the bat story?



#8 hannibellemo

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Posted 27 October 2012 - 10:17 PM

Do tell, Marnie, do tell!


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>


#9 Guest_billronm_*

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Posted 28 October 2012 - 12:45 AM

Marnie,

  So happy for your pcru. Maybe if you can finally stay with the same onc (if you like him) and the same lab your tests will finally be consistant. Can't wait for the bat story.  I can't look at a moose,buffalo,or kayak,without picturing you in one of your situations. Hows the remodeling going? I bet your floors will be beautiful. When Ron was tearing out walls and replacing floors this past spring I was afraid that some kind of enormus bug or bird or bat would come out.  But if you tangled with a bat that's gotta be a good one. As much as I hate them, I almost feel sorry for the bat. We want details!

                                                                                       Billie



#10 Pin

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Posted 28 October 2012 - 05:22 AM

Haha - moose :) I think that was right around when I first showed up here - I had no idea what I was joining!

Seriously though Marnie that's really great news and we would love to hear the story about the bat :)


Diagnosed 9 June 2011, Glivec 400mg June 2011-July 2017, Tasigna 600mg July 2017-present (switched due to intolerable side effects, and desire for future cessation attempt).

Commenced monthly testing when MR4.0 lost during 2012.

 

2017: <0.01, <0.01, 0.005 (200mg Glivec, Adelaide) <0.01, 0.001 (new test sensitivity)

2016: <0.01, <0.01, PCRU, 0.002 (Adelaide)

2015: <0.01, <0.01, <0.01, 0.013

2014: PCRU, <0.01, <0.01, <0.01, <0.01

2013: 0.01, 0.014, 0.016, 0.026, 0.041, <0.01, <0.01 

2012: <0.01, <0.01, 0.013, 0.032, 0.021

2011: 38.00, 12.00, 0.14


#11 Guest_billronm_*

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Posted 28 October 2012 - 12:53 PM

Hey Pin,

  I think she should have her own reality show, Instead of Wild Kingdom, It could be called Wild Marnie. Definitely Emmy Award material.



#12 Marnie

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Posted 28 October 2012 - 03:56 PM

O.k. . .the bat story.  I will try to keep this short. . .or as short as I can.  Quite a few years ago, hubby and I decided that it would be nice to do a wilderness canoe trip with just the two of us.  Up until then, we'd always done trips in groups. . .even our canoe honeymoon was me and 6 other guys, plus one couple from Nebraska that we hadn't met before.  Funny story there, too.  At one point on that trip, all the guys were sitting in a circle talking animatedly, so I walked on up and plopped down on the ground with them before i realized they all had their pants off and were showing off their vasectomy scars to one another!  Back then I was still young, shy, and prim and proper.  I was mortified and didn't know how to politely extricate myself from the situation.  Yikes!  But I digress. . . .

So later, when I was no longer young, shy, or prim and proper, hubby and I did a canoe trip on (I think) Labyrinth Canyon, which is near Moab.  It's a very slow, easy, desert river.  No rapids to speak of.. .hotter than blazes. . .in fact we spent some time floating in the river beside the canoe rather than paddling.  We made camp one afternoon on a big sand bar.  Not many of them around with all of the tamarisk that has invaded the river banks.  That night after we went to bed a huge and terrifying lightning/wind/rain storm hit.  The winds were so violent that we had to lay spread-eagle inside the tent to keep it from blowing away. . .and even with both of us doing that, I was afraid it would blow us, tent and all, into the river, where we'd be trapped inside and drown.  Anyway, after the storm ended. . .it was probably around midnight. . .we had about 3 inches of sand inside the tent.  Our self-support tent is mostly mesh with a rainfly.  So we got everything out of the tent, dumped the tent out. . I'm not kidding about all of the sand.  It was incredible!  We had both been sandblasted, so we needed a bath.  So we each took a dip in the river with the other person on shore keeping the light from a headlamp on the person in the river, so we wouldn't get washed downstream and die. . .but finally we got back to bed. 

Before I start episode 2, some info about our tent. . .it is mesh, and it also has 2 doors (hubby and I don't share very well. . we each have our own kayaks, our own motorcycles, you get the idea. . .amazing we survived the canoe trip with the two of us in the same boat).  A rule we have since made, regarding our tent, is that we either have both doors open or both doors shut.  It is NOT good to have one open and one shut.  But again, I digress. . .

Later that night, maybe 2 a.m. something woke me up.  I sleep on my stomach (thank goodness).  I laid there awhile and then I felt this flutter on my neck.   And again.  Back then I had long hair done up in a french braid.  So I didn't move, but I said, pretty loudly, "Tom. . .there's something in my hair. . and I THINK IT'S A BAT!!"  Tom woke up, rolled over, turned on his headlamp and replied, "Yep. . .it's a bat.  And there's bat shit all over your head!"  To which I calmly replied.. "WELL GET IT OFF!!!"  The bat was tangled in my hair splayed out, face up (thank goodness. . couldn't bite me).  So I'm laying there covering the sides of my face with my hands and Tom's looking around the tent for something to cover his hands with so he won't get bitten. . .bats carry rabies, you know. . .he finds a pair of nylon pants, wraps his hands in them, grabs the bat and RIPS it off of my head (lost a bit of hair along with it), and throws the bat out the door of the tent, where it wobbled around for awhile and then flew off.  Then I had to go BACK into the river for another late night bath to get the bat shit off of my head. 

What we assume happened was the bat was chasing mosquitos, or whatever insects they eat at night.  Because the tent was mesh, his sonar didn't register it.  He flew in Tom's door, but my door was closed.  He hit the mesh door and dropped onto my head, where his little bat claws got tangled in my long hair. 

So .. the next time someone tells you that it's an old wives tale about bats getting tangled in people's hair, and that it can never happen. . .tell them to travel with me.  Something always happens!  Hmmm. . .like the car that went down the embankement and into the river upside down, so we paddled to shore, scrambled out of our boats, cut him out of his seatbelt and got him out of the river.  Or the kayaking in pitch black darkness through a jungle river in Costa Rica, where if we'd have missed the take-out we'd have gone down a Class VI rapid, died and had our bodies washed out into the ocean.  Or the bear and the forest fire. . .or the time we . . .GOOD GOD!!  It's amazing I'm still alive!!



#13 Guest_billronm_*

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Posted 28 October 2012 - 11:33 PM

Marnie,

  If you don't write that book I will, I'll get a lot of info from your former posts.  I can't believe men sit around and compare vasectomy scars. What were they looking for to see which one had the most cut off?

  OMG the bat, I think I would have grabbed scissors and cut the bat out along with my hair. I can't wait to hear Treys comment on that adventure.

I'm gonna get a haircut tomorrow!



#14 ChrisC

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Posted 28 October 2012 - 11:59 PM

Congrats, Marnie! Another tale to live and tell about. Ain't life amazin'? Go PCRU!

ChrisC


Be alert, but not overly concerned.

 

• Dx Oct. 22, 2008, WBC 459k, in ICU for 2 days + in hospital 1 week

• Leukapheresis for 1 week, to reduce WBC (wasn't given Hydroxyurea)

• Oct. 28, 2008: CML confirmed, start Gleevec 400mg

• Oct. 31, 2008: sent home when WBC reached 121k

• On/off, reduced dose Gleevec for 7 months

• April 2009: Started Sprycel 100mg

• Sept. 2009: PCRU 0.000

• Sept. 2011: after 2 years steady PCRU & taking Sprycel 100mg before bed, quit Sprycel (with permission)

• Currently: still steady PCRU, testing every 6 months 🤗

— Fatigue, hearing loss continue, alas, but I prefer to think it is all getting better!

 

 


#15 Guest_billronm_*

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Posted 29 October 2012 - 10:26 PM

Hi Marnie,

  From the sounds of things outside, and our power going on and off already, and we're not supposed to get slammed for another 8 hours. I might just have a few adventures to add to yours. I don't like this. I can handle blizzards. My big favorite beautiful oak tree is right outside my family room, next to the deck. Ron has wanted to take it down for years. I wouldn't let him. I hope God doesn't want to take it down, if it goes down I think I might have 2 back bedrooms of my house left. Crap!  Luckily I paid my homeowners ins last month. But in the last few years we have completely remodeled our house. I can't go through that again. Crap, Crap, and double Crap.                                         Billie



#16 pammartin

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Posted 30 October 2012 - 07:00 PM

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