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Roll Call!!!!!!!!!!! Let's have some fun!

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#1 Happycat


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Posted 03 May 2011 - 03:28 PM

Hey, hope you don't mind, but since I'm rather new here, a roll call with some details will help me get to know all of you a little better.  Answer whatever you are comfortable answering.  Some suggestions are:

1)  Name (whatever you go by here)

2)  Location

3)  Occupation - Working?  Doing what?  Retired?, etc.

4)  Age - optional - my mother would still say she's 29!

5)  Marital/Family situation - married, divorced, widowed, etc.  Kids and their ages, etc.

6)  Favorite hobbies?

7)  CML diagnosed when?  How is it going?  - again, share what you are comfortable sharing

8)  Any funny CML stories or great CML tips you'd like to share?

I'll post in a minute or two with my answers!


#2 Happycat


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Posted 03 May 2011 - 03:37 PM

Here are my answers:

1)  Name - Traci aka Happycat

2)  Location - Massachusetts - metrowest Boston area

3)  Occupation - Chemist by training, now managing a production group, making research tools for other pharma/life science researchers.  The research tools are very small quantities of drug or drug-like compounds that researchers use to test their own compounds against before they get to the clinic and patients.

4)  Age - 44

5)  Marital/Family situation - married, 3 kids, all girls, a 10 yo and 8 yo twins  (Also all born in December - it's a brutal month!)

6)  Favorite hobbies? - Love to read mystery books

7)  CML diagnosed when?  How is it going?  - Just dx'd last month, so still getting used to it all.  As far as I know, it's stable.  Only had a few blood tests so far, so hard to tell!

8)  Any funny CML stories or great CML tips you'd like to share?  - Way too new for that.  I've just been enjoying reading your stuff here!


#3 8isgr8


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Posted 03 May 2011 - 03:49 PM


Us twin parents ROCK!!


#4 8isgr8


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Posted 03 May 2011 - 03:54 PM

1) Cathy

2)Beautiful Omaha

3)Outstanding mother and massage therapist on the side

4) 45

5) Married, will be 23 years this June.  Are you ready for the list of my kids.......E 21 (girl), L 18 (girl), A16(girl), M (girl)12, M 11 (boy), G9 (boy), L and G 4 (girls).  Yes, that is 8 kids!! 

6) Photography

7) 2/10, going ok...still working out the stresses of being a Mom and hearing that C word.  On Sprycel.

8)  I am proof that women do not like their hair no matter if it is straight or curly.  My hair before sprycel was straight with some body, now totally curly, like I just got a perm.  Still don't like it! 


#5 Taylor



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Posted 03 May 2011 - 04:29 PM

Sounds fun!

1) Taylor

2) Tulsa, OK

3) I'm a proposal writer for a large company multinational company here (don't really want to say where, just in case, although I doubt the company would care).  I just started about three months ago--a week after dx!  I only had one day of rest after being in the hospital for a week before I started.

4) I'm a 24 year old male.

5) I'm engaged.  We got engaged March 20th of this year and our big date looks like November 5th of this year.

6) Reading and writing are some of my hobbies, as are computer and video games.  My degree was in Linguistics so I ilke learning new languages and, by extension, their cultures.  I also like working on classic muscle cars.  Beer, wine, coffee, and tea are somewhat hobbies of mine, but I'm kind of keeping the alcohol low since I just started Tasigna.  I'll see what my liver enzymes are like when I go to the onc next week but everything is probably just fine.  Wow, writing this down makes me reailze there are more than I thought!

7) I was dx'ed Jan. 31st, 2011.  I originally went in to get my eyes checked (kept having hemorrages on the retina), and did a blood test to find a count of 230,000!  Got sent to the ER to begin processing (a big snow storm was moving in that night) and started leukopheresis, etc.

8) I was having a bunch of little problems that I had no idea about but in retrospect all adds up now (of course).  The night before my diagnosis I was at a family event, trying to figure out what was wrong with me and trying to test my glucose.  My blood would barely ooze out and was all purple but we just thought I was dehydrated.  Also, I had a lump in my abdomen (spleen) and I had no clue what it was.  I told my girlfriend then that it wasn't cancer because it kept fluctuating in size, so it wasn't a tumor.  Ha!  Also what was freaky was the month before I had been listening to The Emperor of All Maladies: A Biography of Cancer by Dr. Mukherjee, so in a way I was already somewhat familiar with the CML.

#6 VickiW


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Posted 03 May 2011 - 04:36 PM

Hi Happycat!

Vicki (aka vwoyak) here!

beautiful northwoods of WI (if it ever stops snowing!) seriously in the middle of nowhere on 65 acres surrounded by hundreds of acres of nothing but trees and critters (even the      occasional wolf and moose)  Thank God for the internet!

semi-retired, former computer professional

59 1/2

married to best hubby in the world~children, grandchildren, lots of family (unfortunately none very close by)

love to garden, care for animals, avid reader, serious computer geek (grandkids get a kick out of asking granny for computer help)love to volunteer

dxd 3/07 (1 wk in ICU-tranfusions, all the yuck)~ 2 yr. on Gleevec with limited response and all the rotten side effects and final total failure 3/09.  Switched to Sprycel & doing great, reached PCRU 3 months ago! Only problem~ sensory/motor neuropathy which progressed this past winter forcing me onto neurontin but has really leveled off recently (2 thumbs up!)

My hair basically just kept falling out on Gleevec.  Grew back in with Sprycel but I went from fine, soft redhead to thick, course ash blond/silver grey!

Oh yeah, and I was still left with "Frog eyes" so now I look like a silver, burnt red, tree frog!!!

Dxd 2007

started on Gleevec switched to Sprycel 100mg in 2009

PCRU since 2011

20mg Sprycel every other day since Dec. 2014

Began TFR 4-18-16

#7 Badblood


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Posted 03 May 2011 - 04:51 PM

Bad Blood

Mulino Oregon (Near Portland)

Construction estimator same company 26 years

46 Years

Married for 22 years, 3 kids 25, 26, and 17. 3 grand children

Restoring old cars,golf,my family and my 2 dogs 1 mut 1 boxer

Diagnosed August of 2008.

Went to the doctor after playing golf and had alot of pain in my left side and shoulder, just assumed that i am such a terrible golfer that my swing was causing pain and waited 2 days as it got alot worse. Went to my GP took blood work and x-rays and told me either our equiptment is bad or your WBC is at 265,000,

sent me to the hospital and had an MRI and told me that my spleen was the size of a soccer ball that was causing the pain. After more blood work and bone marrow biopsy it was confirmed that I have CML and it can be treated with drugs but there is nothing they can do about my golf swing.


#8 CallMeLucky


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Posted 03 May 2011 - 05:21 PM

1) Gary (aka Call Me Lucky)

2) South Western Connecticut

3) Work full time large company IT group

4) 38

5) Married, two kids boys 5 & 7

6) Spending time with family, making videos on my computer, exercising

7) Dx 6/2010.  For years I had not taken great care of myself, I was alittle over weight, ate like crap and did zero exercise.  I had really high cholesterol (299) even though I was only about 184 pounds at my highest and I am 5' 7".  I decided I need to make a change.  Started eating right and working out.  Decided to do P90X (look it up on late night tv infomercial).  I got myself down to 152 lbs and was feeling great.  I scheduled the end of the 90 day program with my annual physical.  I walked in feeling like a champ.  My doctor was impressed with my results, said everything looked really good and she would call me in a few days to tell me what my cholesterol was.  I couldn't wait for the results, I knew it had dropped way down.  She called me a couple of days later and said that while my cholesterol was way down (174) she was concerned about my white blood count.  She said it was 35000 and told me to come back in so they could draw again.  I didn't think much of it, just figured it was an infection or virus.  I didn't know that it was too high for that.  She called me back a couple of days later and said counts were in the 50's now and I needed to see a hematologist right away.  I asked her to be straight with me and tell me what I was looking at and that was when she told me I had leukemia.  I was at hematologist that afternoon and within a few days I had the dx.  I started on Gleevec and so far it hasn't been that bad.  My response has been very good, at 8 month I achieved MMR and I go for my next BMA in June.  Side effect wise I am challenged by fatigue, some muscle aches, puffy eyes, occasional stomach pains, and a few other sporadic things that tend to come and go.  The main one is the fatigue.  I stopped exercising for a while and I felt worse so now I push myself through the exercise routines almost everyday and even though I am tired and it hurts a bit, it feels better than when I don't do it so I stick with it.  Plus I think it helps me to look a little healthier which is important because few people know I am sick, including my children.

8) I don't have too many funny stories, maybe the one I shared on another thread.  When I was first diagnosed, one day I came home with a bunch of toys for my kids, I just wanted to do it.  My wife got concerned and pulled me aside to ask if my doctor had called with bad news or something.  For the most part I just try to take it in stride.  My life has not been great but it hasn't been that bad either.  I'm still trying to figure out if I am someone who has a bad life with some good luck or a good life with a lot of bad luck.  Most days I try to view it as the latter.  I accept where I am mostly because I have been very fortunate so far to not be that sick.  I wasn't sick when this was caught so it seems it was caught early.  I am responding well to drug, I am otherwise strong and healthy.  My hope is that in the long run I will be able to stop taking TKI drug at some point and I just hope it isn't around the time that I would start getting all the same grievances from old age, because you know that would be a real kick in the pants, I'm going to be really pissed off if I am the last guy to die with CML.

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%


#9 Marnie


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Posted 03 May 2011 - 06:33 PM

HI, Traci. . .

1)  Name: Marnie

2)  Location:  Lakewood (suburb of Denver. . .2 minutes from the foothills)

3)  Occupation -  Middle school math teacher (have taught grades 1,4,5 and 6. . .I get bored after about 6 years, so I've bounced around grade levels and buildings for the last 25 years).  Now just counting down the years until retirement. . .4 1/2 more!!!  Life's too short to be working, I want to be playing all of the time!!

4)  Age - 47 (ouch, that sounds old!)

5)  Marital/Family situation - married to my very best buddy.  We have a lot of fun together.  No kids, 1 cat who is getting old and crotchety.  His brother died a few years back, so he's lonely.

6)  Favorite hobbies? We are whitewater kayak freaks (we met when my husband rescued me after I flipped in a rapid and took a swim). Have kayaked in Costa Rica, Ecuador, Idaho, and all over Colorado.  Motorcycle touring and trail riding (I'm not very good at the trail riding, but we have fun).  Snowboarding in the winter.  Musician - piano, harp (I have 2), flute, piccolo, guitar, ukulele, hammered dulcimer, used to play in a semi-professional handbell ensemble.  Avid reader - mostly sci-fi and fantasy.  I love gardening and beading.  We love camping, especially off of the motorcycles.  Did a 23-day, 5000 mile tour last summer, camping every night.  Now if I could just find a way to strap my lap harp onto the bike, it would be great!!

7)  CML diagnosed when?  Diagnosed June of -09, the year from hell.  Horrible principal, dysfunctional school, worst-ever teaching partner.  Had a weird bruise on my leg, doc assumed it was pooled blood and tried to pull it out with a needle, but nothing came out, so he did a blood test to check for an infection.  Came back 265K, so he sent me to a hematologist.  Thought I was just going to see a specialist for more tests, and about had a heart attack when the address turned out to be the cancer center.  Was signed up for dirt-bike camp in July, and doc said I could go as long as I got the counts down in time.  Had a blast at dirt-bike camp, and from there proceded on to a week-long camping trip with the trail bikes.  Then on to a 3-week trip on the road bikes.  It was a great summer, even though I was getting used to the idea of living with cancer.  There were a few bad days on the bike.  Gleevec and a full day in the saddle sometimes don't mix.

8)  Stories or advice:  Don't go for a long walk on the beach without access to bathrooms.  Unless you enjoy looking like a fool waddling as fast as you can with your cheeks clenched hoping to make it back to the parking lot in time.

Hand cramps and foot cramps from Gleevec can come at the most inopportune times if you enjoy riding a motorcycle.  Picture this. . .going up a rocky technical slope, really gripped because it's a pretty difficult ride and if you crash it will HURT.  Your hand cramps up just when you need to pull in the clutch to downshift.  Not a pretty picture.  Lucky thing I was wearing my supersuit. . .if only you could see the picture.  Think superhero. . .shiny black hard plastic (with smart pink piping along the seams) torso-fitting jacket-thing.  Barbie-doll sized bust cups (I'm not Barbie-doll sized, so I can fit an extra peanut butter sandwich in each cup. . .very handy if you need a mid-ride snack).

Switched to Sprycel in January and am very excited to finally have gotten a decent PCR result (yesterday).  Fewer side effects on Sprycel.  Now my only problem is surviving until the end of the school year!!

#10 Susan61


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Posted 03 May 2011 - 07:10 PM

Name:    Susan AKA Suzzie

Location:  Born in New York, but have lived in New Jersey most of my  life. We live in a nice area near the shore, and I like my seasons.  I hate hot weather.

Occupation:  Right Now I guess I would  have to say Homemaker, Wife, and Mother.  I could not handle my  job of many years in a medical office

after my diagnosis of CML.  I was too sick with the Interferon Shots Everyday.

Age:  63

Marital Status:    Married for 40 years to a great guy, who has gotten me through thick and thin with everything including my CML

                         We have 1 daughter who is 37.

Hobbies:  I enjoy reading good mysteries.  I find a lot of peace when I try to help others who are worse off than me.

My Diagnosis:   I was diagnosed in December of 1998, and did the only treatment available at that time which was the shots of Interferon everyday with a break on the weekend, and then every 2 weeks I had to do 2 shots because they added Ara-C.  It was pretty potent for me, and I was very sick.  Then when it started to destroy my liver, I was taken off and started looking into getting a BMT.  I had no match, and just took Hydrea everyday until they could figure out what to do for me.  Just then they were doing the clinical trial in New York for Gleevec.  I had a hard time getting into the trial, but finally they gave me an appointment.

My husband took me back and forth to New York for 7 months until Gleevec got approved by the FDA, and then I was able to return to my regular Oncologist.

It took me 9 months to get to a Cytogenetic Remission, and then in 2003 I became PCRU.  I continue my same dose of 400mg. a day since day 1, and I just Thank God Everyday for where I am and not where I used to be.

I have been very anemic, and I have very white pale skin.  I went to get my car serviced one day, and this woman kept staring at me in the waiting room.

She said  IS THERE SOMETHING WRONG WITH YOU BECAUSE YOU ARE WAY TOO PALE?  She really threw me off with that question, and all the other people sitting there seemed shocked when she made the remark.  I said YES I have Leukemia.  She was so embarassed, and she went and stood out in the parking lot till her car was ready for her to go.  Thats all I said to her.  I do not know what kind of response she expected.  People do not think before they speak.

#11 Girla


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Posted 03 May 2011 - 07:36 PM

1)  Name (whatever you go by here)Girla

2)  Location Central Texas

3)  Occupation - Working?  Doing what?  Retired?, etc.Im a retired Kindergarten teacher but still very busy and extremely glad to be retired!

4)  Age - optional - my mother would still say she's 29!Im 64 and feel every blessed minute of it!

5)  Marital/Family situation - married, divorced, widowed, etc.  Kids and their ages, etc.Husband died 11 years ago of sarcoma after 7 years of fighting it. I have three unmarried, successful children & no grandchildren.

6)  Favorite hobbies?I have a large garden, watch the birds, research in genaeology, cook like a mad woman, Facebook, & float in my innertube

7)  CML diagnosed when?  a month ago, April 2011How is it going?  - again, share what you are comfortable sharingIt SUCKS. I am still at the point where everything seems to revolve around 'my disease'. I stay very busy but it is like a black cloud for sure.I am very grateful for Gleevec and the insurance policy that covers it plus I have no side effects. BUT my platelets are over a million & Im worried about that. I live on a fixed income and it is not easy to work CML into my budget. My doctor is 140 miles away.

8)  Any funny CML stories or great CML tips you'd like to shareNo, not at this point. I live by myself and Im just trying to stay positive and busy in the face of all this, hoping that it gets better. I know it could be worse for sure. I watched my husband die of cancer when it was far far worse. It is a monster.

#12 donnadavis


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Posted 03 May 2011 - 07:39 PM

1.  Hi ! Everyone calls me Miss Donna because I taught kindergarten.

2. I  am 65 years  old  and I have had CML for 3 years.

3. I taught school for for  many  years.  I have home schooled  my seven  grandchildren until  they start high school . ( My last little  duckling decided  to  stay  and  home school  through high school, keeps me busy I love it. )

4. My  hobby ,  I call  it  my  mission,  is  helping  local  young  people  study  and  get  their  GED. It  started  with  two  and  just  grew.  I  love  teenagers.

5.  I  have  a  dog  and  we  go  on  a  lot  of  hikes. I  also  have  probably  the  worlds  oldest  guinea  pig . He  is  13  and  still very  active.

6. I  have  two  children  one  in  education  and the  other in  law  enforcement. ( My  son  just  enrolled  me  in  a  course  to  teach  me  how  to  use  a  handgun   for  Mother's  Day , guess  which  occupation  he  is  in!)

7.   The  year  I  was  diagnosed  with  CML  was  the  worst  of  my  life. I  lost  both  my  parents.  My  husband  and  I  divorced. I  had  two  major  surgeries,  one   in  which  I  woke  up  in  the  middle  of  it, on  yes  that  does  happen!  I  lost  my  job  and  had  to  move.  and  then  this  ultra  rude  Dr.  told  me  I  had  CML  and  should  be  glad  it  wasn't  some  really  bad  form  of  cancer! 

8.  Three  Years  later  I  am  still  here  and  loving  it !

I  live  in  Southeast  Missouri. You  may  have  seen  us  on  the  newa  lately. We  are  having  terrible  floods.

I  am  living  on  an  island  right  now , every  road  is  cut  off  by  some  raging  river. Lucky  I  live  on  top  of  a  hill !

#13 HeatherZ


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Posted 03 May 2011 - 07:54 PM

1)  Name (whatever you go by here) - Heather

2)  Location - central Pennsylvania

3)  Occupation - work full time for a bank in the IT dept as a business analyst

4)  Age - 38

5)  Marital/Family situation - Married - just celebrated 15 yrs on April 20th.  Son is 12 and daughter is 10

6)  Favorite hobbies?  Camping, hiking, outdoor stuff - Also love to play video games (I always have my Gameboy in my purse)

7)  CML diagnosed when?  How is it going?  - DX 3/2010 - G400 since - The first several months were the toughest for side effects and also the emotional stuff.  At the 12 month mark I had a 2.5 log reduction so I guess I am doing okay.  I do struggle with anemia and a few months ago had to get some IV Iron for it.

8)  Any funny CML stories or great CML tips you'd like to share?  Story - when I was getting my BMB, my husband was standing there watching the doctor as I was doing the best I could to "man up" and not scream.  As I was clentching my teeth, making comments like "that feels good, oh yeah I love that shit..." (think of the batting cage scene in Happy Gilmore) my husband goes sheet white and says ,"I'm goin' down."  As the nurse left go of my arm to go catch him I telled, "Hell no - if I have to lay here and get a spear in my a$$ you are going to stand there and watch it!"  The nurse and onc both chuckled.

Something that helped with my coping in the beginning was humor.  In doing research and talking to the doctor I just kept coming across the stats that said CML was a rare disease.  My kids knew about my diagnosis right from the beginning and so I would say things to them like "hey, I have a rare disease and I still do the dishes, the least you can do is clean your room."  And when trying to decide where to go for dinner I would tell my husband I should get to pick the restaurnant cause I have a rare disease.  I don't have to pull the "rare disease" card much anymore but humor definitly helped me cope with the fact that I have cancer and will have it for the rest of my life.

I do enjoy this forum because I know I can always get an answer to a question I may be having and I know I can vent without being judged.  I also know that everyone here can laugh at the story from my BMB without being horrified (like some of my friends that I told it to).  It is so comforting for me to know that I am not alone in this "rare disease" situation and that many of us share the same fears and struggles.  Thank you all for being here!

#14 nathaliece


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Posted 03 May 2011 - 08:57 PM

1.  Nat

2.  Missouri

3.  Working full time -- I am a divorce attorney (no stress there!)

4.  Still in my 40's (legitimately)

5.  Divorced with an 8 year old son who is amazing!

6.  Cooking, reading, traveling

7.  Dx 11/10, starting Gleevec after Thanksgiving dinner.  Responding well to Gleevec but struggle with fatigue and severe hand pain on occasion.

8.  I recently changed oncologists but the nurse at my first oncologist's office reminded me of the movie "Groundhog Day".  I had an appointment weekly for a couple of months and then biweekly for a couple of months.  Even though she saw me with that regularity, she always acted like she had never laid eyes on my before.  My favorite exchange was:

Nurse:  Are you on any medication?

Nat:  400 mg Gleevec

Nurse:  What do you take that for?

Nat:  Leukemia

Imagine having that conversation 10 times in four months!

#15 lthouse612


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Posted 03 May 2011 - 08:58 PM

Hi Traci... here goes...

Name:  Mark    

Location: Williamsburg, VA

Occupation: Stay at home dad now...

Age: 37... soon to be 38 (May 5th!)

Marital Status/ Family:  Married this year for 12 years to my wonderful wife Cindy ( I have to tell this story-very short version..... I was involved in a motorcycle accident (Feb 98) and upon having treatment and getting my leg cast taken off my physical therapist was the one I married... who knew?  She couldn't resist me.. kept putting her hands all over me! LOL)... We have 2 great boys, ages 5 & 9.

Favorite Hobbies:  Motorcycling ( Hey Marnie.. my "supersuit" is Blue! lol) , weight training, running swimming, camping, movies and playing my guitar

CML Dx / History: I was dx the 23rd of Dec. 2006. My counts were approx. 324,000 and quite frankly I thought I was in some sort of dream...it was all very surreal.  In addition to my CML I also have Chronic Hep B, so it "complicated things to say the least.  As it stands right now Gleevec had been working but just recently it seems my body is becoming resistant to it.  Even with the higher doses my counts are climbing once again.  I'm told they'll max me out on Gleevec before changing my treatment plan.  Another BMB may be in the works and I already requested that they put me out!!!  I really don't want to experience that again.  I can feel the affects of the meds affecting me as the dosage increases and just the other night I had to call the neighbors to help me finish cooking dinner.  My hands wouldn't stop cramping up!  Talk about frustrating!  No.... I was actually getting pissed off! (excuse my language).  It's not enough to have to deal with just having the friggin CML.

This disease has really taken it's toll on me and my family over the last few years... to a point where we didn't know if we would make it but after counseling and a whole lot of Oreo's & milk (my comfort food) we are seeing the light at the end of the tunnel.  What was on the verge of ruining us has made us stronger and given us a better understanding of how we are both dealing with it.  Depression is a nasty thing and can manifest itself in many ways... I was lucky to have someone help me identify the signs and give me the tools to understand it and "handle" it so that it would not be the end of me and my family. 

Funny Stories:  I can't recall any because as it turns out my memory just sucks nowadays!  I do use humor to help me get by from time to time.  My favorite is when someone makes a comment about how something may not be good for me ( like a beer on occasion) ... I usually follow that up by saying.. "what's it going to do, kill me?"  or " bring it on!..I love pressure!"  It may sound a bit morbid but I figure there's enough on my plate to handle already but if the Big Guy sees that I may need more well... then so be it.  Oh, I do remember my wife commenting on being present for my first BMB... as I was "white knuckling" the table trying to supress my urge to yell out in agony... she said it was like something out of a horror movie...watching them drill into my lower back with this device.  It was very difficult to get through the bone to retrieve the "goods" so it was a grueling experience.  I know that my strength in getting by is my family and my wanting to being here for as long as I can to see my boys grow old and have their own families...I think every parent wants that.  So, on my worst days where I can barely get up or my eyes just don't want to stay open... I just keep thinking that I don't want to miss out or look back thinking I could've been stronger.  I just tell myself I will be stronger....

#16 LoriM58


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Posted 03 May 2011 - 09:53 PM

Hi Traci,

Thanks for posting this as I am learning alot being newer to this site also!!

1)  Lori

2)  Northeastern PA - where we have logged rain every day except 6 in the past 33+ days!     (and those 6 days were NOT sunshine)

3)  Occupation - Work in office of mfg corp for 24 years next month - LOVE it!!

4)  Age - 52 yrs young

5)  Marital/Family situation - just celebrated 25th anniv (of being divorced)   Was engaged but lost my fiancee to cancer 2 1/2 yrs ago     I have 3 grown married children and 3 beautiful grandchildren with another one on the way.   (Boy 32 - expecting 1st child; Boy 31 - has boy 5 1/2 & girl 3; Girl 29 - boy 7 mos)  

6)  Favorite hobbies?   Quilting, gardening, playing with my grandchildren, bird watching and serving in my church

7)  CML diagnosed when?  How is it going?  - Feb 4th, 2011    Went in for annual bloodwork (which I neglected to do since right before finacee passed away)  so I was about 2 1/2 yrs late    Was feeling great.   Got a call following am to get back to dr office.   PCP suspected acute leukemia and told me I would prbly be starting chemo that afternoon.   Was in total shock.   Saw Onc that afternoon and they did a BMB.   Onc said she suspected CML.   BMB confirmed.   Started Hyrdrea & Alopurinol. (or something like that)    Because of insurance couldn't get Sprycel.  Ins wouldn't cover Gleevec either so they filed with Novartis and I started Gleevec 400mg on 3/4.  In  5wks I hit CHR.  Onc was happy with that.   I am VERY thankful that I have had a good response to G and have basically no side effects except being tired.   Just got back from a busy weekend in NYC and still dragging.    From what I have been reading I definitely have to get exercising!!   Stinking rain!!   would get plenty of exercise in my flower gardens if I could get at em.

8)  Any funny CML stories or great CML tips you'd like to share?    kinda funny story when I met my Onc - I had black & white striped socks on (who expected to be at dr office?? not me!)  Anyway, my Onc is a cute young girl and she had red shoes on.   When she was talking to me I looked down at my socks and made the comment that I looked like I was waiting for a house to fall on me.   Then looked at her "ruby slippers" and asked if she could click her heels 3x and get me out of there.  

That's about it for me,

Looking forward to reading more posts!!


#17 clemsoncash1


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Posted 03 May 2011 - 11:59 PM

why not I'll Play

1)  Name (whatever you go by here) Matt

2)  Location Chattanooga

3)  Occupation - Working?  Doing what?  Retired?, etc. working on various industrial construction projects as a field engineer

4)  Age - optional - my mother would still say she's 29! 25

5)  Marital/Family situation - married, divorced, widowed, etc.  Kids and their ages, etc. Not married, but been dating a great girl for a while

6)  Favorite hobbies? Sports, watching or playing, working out, live music, anything outside

7)  CML diagnosed when?  How is it going?  - again, share what you are comfortable sharing Diagnosed 1-11-11 with CML that had progressed into an ALL Blast, start conditioning for SCT next week.  Two rounds of C-VAD went ok, sick of being neutropenic though.  

8)  Any funny CML stories or great CML tips you'd like to share? Been on house arrest from the neutropenia most of the time, but when people ask why I have a mask on when i go in public, they always seem surprised when I say I have Leukemia.

#18 phillyfan23


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Posted 04 May 2011 - 12:50 AM

1) Name - Moe

2)  Location - Oman  (Philadelphia native)

3)  Occupation - Working?  Doing what?  Retired?    petroleum engineer/energy broker

4)  Age - optional - 29

5)  Marital/Family situation - married to my beauttiful wife now for 5 years, she really has been the strong one, providing endless support. Expecting our first child this coming June....baby girl, can't wait to see her. She will be Daddy's girl for sure.....let my wife be the disciplinarian, I will treat this one like a princess.

6)  Favorite hobbies? Soccer, Hockey, travelling,OIL, eating

7)  CML diagnosed when?  How is it going?  -  went for a regular check-up here in Oman last May for my new job , and was told I had 40 K WBC,....on my birthday. First thing I asked the nurse....is it leukemia? She said go see the doctor upstairs, transferred hospitals, and was later diagnosed with CML . Quit Smoking, eating healthier and I feel great. Only side effects from Gleevec are minor indigestion....that's about it. Just got back from the doctors this week and told me I had an absence of BCR/ABL in my PCR test, so that's great news.... I have a great doctor who fits me like a glove. She's been like a big sister I've always wanted and very knowledgeable and treats me so well. I never thought that you could genuinely LOVE your doctor....well I absolutely love my doctor.

8)  Any funny CML stories or great CML tips you'd like to share?

My mom calls my condition lilly....to soften it for her. My wife has been the brunt of some epic gas from my G......to be honest, this alone more than makes up for the indigestion side effect.

#19 spnnrmn


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Posted 04 May 2011 - 04:47 AM

here is my stuff:

1)  Name (whatever you go by here): Philip (aka Spnnrmn)

2)  Location:  Northern Virginia (the DC 'Burbs')

3)  Occupation - Working?  Doing what?  Retired?, etc.:  Still working full time, so far, as an IT manager for the US Govenment

4)  Age - optional - my mother would still say she's 29!:  53

5)  Marital/Family situation - married, divorced, widowed, etc.  Kids and their ages, etc.:  Married 21 years, one child (a 16 year old daughter who is has been included in what happened to me from day 1)

6)  Favorite hobbies? cooking, computer gaming and fiber arts (wife knots and weaves, I am the spinner in the family with 6 spinning wheels)

7)  CML diagnosed when?  How is it going?  - again, share what you are comfortable sharing DX 9/2009, just passed 1st annivarsary at PCRU, counts are in the normal range. Fatague, pain in ankles and knees is the worst

8)  Any funny CML stories or great CML tips you'd like to share?  Went from my first BMB to a job interview, and having to sit with a pillow behind my back.  Mad dashes to t the bathroom mid meetings, I have a very understanding Boss.  blaming leg cramps at night for kicking my wife as we slept. small animals (we have 3 slamm dogs) make good lap warmers.

#20 denmin


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Posted 04 May 2011 - 06:20 AM

Name - Linda

Location -  West Central Florida

Occupation - I did work in a bait store, now waiting for a SSD/SSI determination.

Age - 49

Martial/Family situation - Still married, seperated since 2001. I have 2 Boys, 1 is 24 and the younger one is 15 and a ALL survivor.

Favorite hobbbies - Reading, surfing the Web, Video Games, especially RPG's.

CML diagnosed when? How is it going? - Diagnosed June 2010. MMR since 4-2011.

Any funny CML stories or great CML tips you'd like to share? - Not yet.

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