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#21 ChrisC

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Posted 07 July 2011 - 04:03 PM

Congratulations! Well done, and long may the zeroes continue


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!

 

 


#22 CallMeLucky

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Posted 07 July 2011 - 04:23 PM

Ok, interesting.  This is where I start to lose the concept of log reduction.  It seems to me that the higher you start, the higher your log reductions as you come down.  That's not a bad thing, it just always made me wonder how they could have a blanket statement that a 3 log reduction was the definitive milestone.

Take this example - if patient A starts at 10% and patient B starts at 1%  a 3 log reduction for patient A is equal to .01% but a 3 log reduction for patient B is .001%.  Looking at it strictly from a number standpoint it would appear that patient B's 3 log reduction indicates less leukemic burden than patient A's.  I'm guessing it is not that simple, but a curious thought nonetheless.

Also, how did you derive the 6.23 log reduction off of a 0% test result?  When I do it for mine, I get the expected #NUM! because I am trying to divide by zero.  Did you actually have a value for your test result from 2/14/11 and it was just too many decimal places out to see in the cell?

BTW - Sorry that we hyjacked your thread Marnie


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%
 

 


#23 Marnie

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Posted 07 July 2011 - 04:31 PM

Actually, this is a good discussion for me.  So where does everyone come up with their starting number?  I use the one from my second PCR test, not the original BMB.  I thought that most folks started out with a simple yes/no PCR test at diagnosis.  That's what mine was.  So maybe I'm using the wrong number in my pathetic attempt at calculations.  Seems like lots of folks have a % in the double digits, rather than my starting number which is a decimal.

Marnie



#24 gunner

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Posted 07 July 2011 - 04:53 PM

I have been editing the message on the fly, so some of the explanation has been added to the message.

You aren't dividing by zero, you are trying to take the log of zero. And that is undefined. Since we don't know the algorithms in the testing machine, we don't know if the real number is .00009, .00005, or truly zero. What we do know is that it is a very tiny amount, and that is what we are wanting to achieve. The reason that log reductions are used can be seen in the following graph. Same raw data, but graphed as the reported numbers instead of the log difference.

PCR_percentage.jpg

As the instrumentation becomes better, should the criteria change?  This is a big problem today in the environmental field where many of the regulations were written based on the technology at the time of writing. When an instrument becomes available that can measure even smaller amounts, we now find that the regulation must be changed because the contaminent exists evrywhere, at an extremely low level. For a period of time, the air quality requirements for a factory in California required air that was cleaner than the air available in the parking lot. The solution? Get out of California!

The whole business of log reductions is certainly confusing. The idea of the international scale was to make it so results could be compared between labs. The info I have says that mmR on the International scale is 0.1%. That correlates roughly with my calculation of 3 log. I thought that the CMR criteria was 2 log, and mmR was 3 log?  I get concerned about oncs that are increasing dosages when the numbers are really looking pretty darn good.



#25 gunner

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Posted 07 July 2011 - 05:13 PM

Marnie-

The first line on my chart is from the first visit with the onc. Bless her heart, she would not write the prescription until they had the samples on the way for the PCR to establish a baseline, and a BMB/BMA for bone marrow biposy. So I bent over and let her have her way with me!

If you look at the results in the second line, this is after being on Gleevec for 4 months. Already better than a 2 log reduction. So if your onc is hung up on the log reduction, the only calculation to use is the initial one. If they did not run a PCR before starting a drug, then you just have to guess at something. My CML was caught early at a routine physical. Slightly elevated WBC. Yet the initial PCR was 17%. If your onc is expecting you to do the calculations using the 3 month results, then it is probably Onc trading days!  That seems like the popular cheer, sort of like firing the coach when the football team has a losing season.

For the new kids in the audience- here is Gunners Rules:

1: At initial diagnosis, I want to see a PCR that gives me numbers. This gives us a real number, not a yes/no. We probably got the yes/no from a FISH test which confrimed the ABL/BCR Philadlphia malfunction.

2. BMB/BMA.  This tells you if you have fried your marrow, and if anything else is going on.

3. Prescription for the drug of choice. I am not sure that there is a sure winner one way or the other in this case. No matter what, there will probably be side effects.

4. If it is close to the end of your prescription plan year, and you haven't met the deductible, it might be reasonable to wait to fill the prescription. In my case we had already maxed out the deductible so it didn't make a difference. But otherwise it would have been a quick spend of $4000 in December followed by another $4300 in January. If your CML is giving you serious problems, you may have no choice. I sort of learned this in that it was 4 weeks from when my GP figured out what was going on until the initial visit with the onc. They were in no big hurry because there was nothing that urgent.

5. Give it some time. Watch the trends. Get copies of all your lab reports. Plot the data if the urge hits you. Get used to being stuck with needles because someday, you will go through needle withdrawal when they tell you that they don't need to watch WBC every week!

6. A 1/2 log bump is not a trend. Don't switch drugs for recreational purposes.

7. Drink, heavily. If you don't, you will go crazy.



#26 Susan61

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Posted 07 July 2011 - 05:18 PM

Hi Marnie:  Let me tell you that you crack me up with all your funny responses to what life is handing out.  I am sure your numbers will bounce where you want them to eventually.  I think I need to drink some of what you do to get that feeling.  Problem is I do not drink, but maybe I should start.

I go for my PCR test in August, and I usually get all concerned prior to and then during the wait for the results.  I am really going to try to just get a better handle on it this time.

Susan



#27 gunner

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Posted 07 July 2011 - 05:35 PM

Couple of other things, then I am going to go home and start drinking...

If your bone marrow is healthy, once the numbers get really low, ask your onc what they expect to find from a BMB/BMA?  Sort of like doing a FISH test when you have a 2 log reduction on the PCR? It is going to show nothing. When my onc couldn't think of what she might see, she reviewed the guidelines and came back 'Yep! No reason to do that!'

Next, once you figure out how to read the PCR results, you don't need to see the onc for interpretation. I see my onc every 6 months now, but I have a PCR drawn every three months. If something funny is going on, then I can schedule an appointment. I pick up the results from the onc's office about a week after the draw.

More GUNNER RULES:

1. Never have blood drawn for a PCR after 2pm or on a Thursday or Friday. That gives them time to get it to the lab and get it analyzed while it is still fresh. If it sits over the weekend, the results are not valid. If it is drawn to late in the day, it will miss the courier that takes it to the lab where it will be processed in the morning.

Back to the B session...  When I am going to have an onc appointment, I have an order to run the PCR test about 10 days before the appointment. That way the results are back and we can discuss them, if something is going on. Otherwise there isn't much to talk about until the results come back. Most of the times I would have that discussion three months after the PCR test. By scheduling it ahead of time, we can discuss the results while they are fresh.

Susan-

I had basically given up drinking for many years. I decided that life was too short for bad booze, and bought some good stuff. It is worth it.



#28 Marnie

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Posted 07 July 2011 - 05:53 PM

The school district's lawyer is the one paying for the alcohol tonight, so I'll have an expensive glass.  And it's raining so I won't be on the motorcycle. . .maybe I'll make it two!

Gunner, you have good rules, and I follow them pretty much to a T.  I always call ahead to find out the PCR results so I have some time to think about them and get my list of questions ready.  Now, after this discussion, I'm really re-thinking the insurance issue.  Maybe I should stick with the original plan to save the $1000 deductible.  In January, I'll go on to my husband's plan which is a traditional plan.  Surely things can't deteriorate that fast from now until then.  And that would be the easy way to get a second opinion. . .

I do wish that my initial oncologist would have done a quantitative PCR at diagnosis.  The shell-shocked patient who knows nothing about cancer certainly can't be expected to know what tests should be done at that time.  Later, yes. . .but not at first.   I guess maybe I'll graph my numbers to see what sort of trend shows up and plot a potential starting point based on the slope of the line.  I did graph my blood counts at first, but didn't think to do it for PCR results.

Enjoy your evening.  When I raise my glass tonight, it won't be to the wonderful contract that we negotiated. . .it will be to the awesome folks on this forum (of course, I'll be the only one at the table who knows it. . .one DOES have to play the game, no matter how stupid it is!)

Marnie



#29 Guest_billronm_*

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Posted 07 July 2011 - 08:26 PM

Dear Gunner,

Will you be my new doctor? Your method seems to work better than all the oncs.

Do I have to walk in the same direction the graft shows? I'll just tell the police that my new doc is treating my cml and he told me to drink and walk like this. Then I'll be pcru.I know I'm going to end up in Gitmo someday.         Billie                 



#30 Guest_billronm_*

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Posted 07 July 2011 - 09:03 PM

Drinking in moderation is fine. That's one of the first things my onc told me. My cardiologist said the same thing.

But we'll help you since you don't drink you have to start out slow .I'm sure everyone agrees with me. Before you go to the onc.Leave an hour early, and stop in a nice classy lounge. you'll need a very small glass because you're a newbie ask the bartender for 2 shot glasses of tequlia. Relax your body and just sit there and just sip those tiny drinks. By the time you see your onc you won't have a care in the world. You won't be nervous take a list of questions but make sure he writes the answers down. Then you can go home and lay down feeling totally relaxed. When you wake up you probably won't even remember going to docs, you know with our brain fog and all.   

                                                                                                 That will definitly fix you right up.    Love Billie



#31 Guest_billronm_*

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Posted 07 July 2011 - 09:30 PM

Dear Marnie,

I'm sure glad you are calming down and considering all your options. With everything going through your mind right now the most important thing is your ins. Just focus on that and nothing else. Even talk to the social worker at the cc center. You might be entitled to some benefits just until you go on Tom's ins. I haven't had to deal with anyone since dx the social worker has done it all. Please don't sign anything that sounds to good to be true. Been there done that. If someone else is paying just drink top shelf. You earned it. You mentioned something about getting a bmb-bma. I haven't had one since dx. which will be 4 years August 4th. And that's fine with me. I had bw tuesday and my appt july 21. I figure if my anemia was worse I would have recieved a phone call. Maybe I'll get lucky and be on 50mg of Sprycel a day.    Have a good time       lol Billie



#32 gunner

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Posted 08 July 2011 - 09:33 AM

"Gunner,

Will you be my new doctor?"

There is really no 'method'. My treatment has followed the guidelines. In my case, the Gleevec worked well at suppressing the CML. I have side effects, but I have too much stubborn German in me that says I will tough it out and make it work. I do not skip pills. If I forget a pill, then I double up. I always run out of pills the last day of the month (roughly).

My onc is receptive to the idea of lowering dosage, or even discontinuing pills with close monitoring. It is my choice. But she feels that discontinuing is not a good choice.

And for the inexperienced, please ignore Billie's recomendation for a double shot of tequilla! That will only make your head hurt! Drinking tequilla is one of those things that I put on the list of stuff not to do anymore, now that I grew some brains. Another item on that list is eating peanuts without shelling them first. I think that used to happen after drinking tequilla. The next morning, you had the opportunity to learn why either one of those was a bad idea!



#33 PhilB

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Posted 08 July 2011 - 10:59 AM

Sounds like Billie is a fan of the old counting rhyme:

'One tequila, two tequila, three tequila, floor '



#34 Guest_billronm_*

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Posted 16 July 2011 - 11:31 PM

Dear Gunner,

                            Sissy!         Just kidding, I was only trying to help.

                                                                                                         SUSAN KNOWS THAT!

                                                                                                       BILLIE



#35 Guest_billronm_*

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Posted 16 July 2011 - 11:36 PM

Dear Phil,

Been there done that. I think.

                                                      Billie



#36 Susan61

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Posted 17 July 2011 - 01:24 PM

HI:  I must have been off on a drinking binge for days.I missed all these replys to Marnie's discussion.  Only kidding.  I just never liked to drink.  I have a glass of wine now and then if I am in a social situation where I do enjoy it and its relaxing.  I did however smoke too much for years, and I quit only 3 years before my CML diagnosis.  I am going for my PCR test this week, so maybe I will be doing some drinking to calm down well waiting for my results.

    All these years, and I still get so anxious when I get tested every 6 months.  Been PCRU since 2003.

    I also hope Marnie gets a real good PCR result when she gets tested again.

Susan



#37 Marnie

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Posted 17 July 2011 - 08:28 PM

Hey, Susan. . .good to hear from you.  Best wishes on your upcoming PCR test.  It's been a real roller-coaster ride since my original post!!

I was a bit down about my PCR numbers, but not too worried. . until I saw my oncologist, who freaked out and made me think I was at death's door. . ."your numbers went up!!  We need to change something!!  We'll up your dosage. . .if that doesn't work, we'll try Tasigna. . if that doesn't work, we'll send you to MD Anderson!!"   I pretty much freaked out, but got a bit calmed down by the reasonable responses I got on this forum.  Then. . the timing was pretty amazing. . .that weekend, we went on a motorcycle camp-out with the beemer club.  Up in Wyoming, we started chatting with one of the guys from the club that we know a little bit, but not really well.  Tom asked how his wife was, and his response was, "well, as a matter of fact, we've had a rough time lately.  Shelly has leukemia. . ."  My eyes immediately lit up and I asked what kind, and when Greg said CLL and I knew what it was, he said. . ."sounds like you know a bit about leukemia"  later the discussion turned to "what do you think of your oncologist?" and my response was, "well, actually, I'm thinking about looking for a new one."  Turns out that Greg and Shelly absolutely love her oncologist.  Talked about what he was like, and he sounds great. . .though not a leukemia expert.  So I have an appt set up for Aug 2 with him.  AND. . .while this was all going on, I had to deal with insurance changes at school. . .finally decided to save $1000 and go with a new carrier starting in Sept, which will mean new oncologist (not Shelly's), new pharmacy, all the red-tape of pre-auth, etc.  Already been on the phone for hours because Sprycel is not on the formulary for the plan my employer is on. . .but I've gotten that worked out, I think.  I guess I'll see in September!  Then, I'll go onto husband's plan in January, and if my Aug 2 appointment goes well, I'll switch to Shelly's doc.

AND. . amidst all of this, I got into looking at all of my old test results and data again (I think I finally got log reductions figured out, and was at a 4.3 log reduction at my best, down to 3.7 log reduction after my last icky PCR test) and looked again at the mutation tests.  Looked at the info that I posted recently for someone else, and again, my mutaion, V289A wasn't listed on it, but did some more research and found something that listed 5 mutations that are TKI resistant, and of course V289A is on it, so now I'm thinking I made a big mistake switching insurance.  Gahh!!!  I'm tired of the head game!!  I guess the good thing is, I'll get the perspective of 2 new oncologists between now and September.

So I need to quit clenching my jaw (headache and jaw pain for the past month. . getting pretty tired of it. . .my stress goes straight to my jaws. . .amazing I haven't ground my teeth down to nubs).

Here is one really cool thing that has happened in that time. . nothing to do with cml, but a very neat experience. . .coming home from the motorcycle trip, Tom and I were riding over Cameron Pass in northern Colorado. . .Tom had just gone around a curve ahead of me.  Out of the corner of my eye, I saw some movement in the trees beside the road.  I assumed it was a deer, so hit the brakes and slowed way down.  Suddenly, not a deer, but a gigantic MOOSE came thundering out of the trees.  He wanted to cross the road, but I was in his way, so he galloped alongside of me for probably 200 yards.  If my arm had been 10 feet longer, I could have reached out and touched him!  I slowed almost to a stop, and he finally crossed the road about 15 feet in front of me.  Very cool!!  Lucky thing he didn't charge me. . .I guess moose can be pretty mean. . .but it was just surreal to have this gigantic moose galloping along side of me for 15 seconds or so.  Even more exciting than the time I was riding down the highway, and the rear wheel of the pickup truck in front of me came off and was rolling along beside me for a half mile.

Anyway. . .back to the oncologist story. . .I e-mailed my onc, said that I wanted to stay on 100 mg of of Sprycel, rather than bumping up to 140 (thanks, Pat, for that advice. . .Pleural effusion scares the bejesus out of me), and will do another PCR test at the end of July (just in time to bring the results to my potential new oncologist, though the old oncologist doesn't know that).  And that created another hassle of dealing with the mail order pharmacy, who had already received the doc's scrip for 140 mg, so now had to get them to change it back to 100 mg. . .I hope it's right.  Sprycel should come on Wednesday. . .and if my PCR numbers go up again, then I will really regret that, and wish that I had the 140 mg.  Arghhh!  Sometimes, I just want my old life back!



#38 Trey

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Posted 17 July 2011 - 08:54 PM

As we discussed previously:

http://community.lls...d/9104?tstart=1

For Sprycel, the tougher kinase mutations are F317(L/I/S/V), & V299L

For Tasigna, the tougher kinase mutations are F359C/V, Y253H, & E255K/V

http://www.eutos.org...TOSJune2009.pdf



#39 Marnie

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Posted 17 July 2011 - 09:08 PM

Yep. . .gotta hit me over the head with stuff repeatedly before it really sinks in.  I think I'm on cancer overload right now.  I go back and forth between thinking I'll live forever and thinking my days are numbered. . .well, actually not that, but stressing out about things.  Friend of mine who just had a brain tumor removed has, I think, decided I'm the one person she can relate to, so she's giving me all the info she's not telling anyone else, and her prognosis is pretty awful. . .14 months is the average.  Decided I need to get back to practicing my harp so that I'll have a repertoir ready for her funeral. . .geez. . .I'm getting morbid now!  Maybe it's that summer vacation is almost over and I'm NOT ready to get back to work.

Anyway, thanks for the link.  Not sure that I saw it before.  Gotta go. . dinner calls. . .

m



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Posted 17 July 2011 - 09:32 PM

Dear Marnie,

I'm so glad to hear from you. The last I heard was quite a while ago I hate this cml I was afraid you were in the hospital or sick or blew up the whole school administration. I could never deal with those ins co.If by chance you have to go to 140mg let the onc"s office deal with the ins. co. I'm so glad your going for a second opinion. If I were you I would just stay on 100mg until you get the diagnosis from both oncs. And if that don't work go to another onc. I'll go with you. We"ll keep going to oncs until we find one that tells us you only need 100mg. It must have been an omen to have a moose escort you That is one for the books and a good sign. They say God works in mysterious ways; maybe he sent you a moose.

Oh Erie had the Roar on the shore this weekend. Over a thousand motorcycles and 650 thousand people. They gathered at our casino and rode down to the erie doc.That was an amazing sight.Every kind of motorcyle they make probably.Erie is a big Steeler fan town. So we had a lot of people from Pittsburg.Plus the proceeds from this run goes to the families of Flight 93 on 9/11. We had beautiful weather all 4 days but it was so hot. Up around 90 every day. Ron wanted to go which surprised me he hates crowds. I felt bad I couldn't go but there is no way I could have gone through a day that long. I tried to get Ron a date but when women hear Helmet Hair they run like hell. They raised a lot of money and they figure Erie made around 26 million dollars for the economy.

I can't get over you having a moose escort.l  St. Theresa saw the Virgin Mary and you saw a moose! definitely a good sign.  Try not to worry to much that's easier said than done

                                                                                                                                lol Billie.






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