168 replies to this topic

[BP3]

40 yr old male. Father of two girls 8 and 1 yr. dx April 2014. Avid motocrosser. Started riding at 5 and never stopped. New to the site, but enjoy learning about this whole ordeal.

[JPD]

40 yr old male. Father of two girls 8 and 1 yr. dx April 2014. Avid motocrosser. Started riding at 5 and never stopped. New to the site, but enjoy learning about this whole ordeal.

God, my 45 year old bones and joints would never forgive me riding motercross.  Moutnain biking is bad enough (hey, lazy, maybe if you did it more it wouldnt hurt). 

[JPD]

bump for being friendly.

[Dona_B]

Hi, I am in Club CML too. Was diagnosed January, 2014 at 47 after a horrible year of multiple symptoms that I blamed on three other conditions. Just curious was anyone else diagnosed after multiple rounds of antibotics? I had like 5 rounds of antibotics in a 6 month period then my health just bottomed out.

 

Although I enjoy listening to the rock/pop legends, I have never been to one of their concerts. Have been to a Garth Brooks concert which may get me kicked off the thread. LOL. Also, Ichthus, the Christian music version of Woodstock.

 

I've been married 28 years and have two sons in college. My useless degree is an A.A.S. in Office Administration gained during the recession of 2008.

[JPD]

I didnt have any illness prior to my dx, but I did have a lot of weight loss and night sweats.  I would soak my pillow at night with some nasty smelling sweat, but I just put it off to stress (Im a stressed guy anyway and was going through a seperation) but I should have known better... oh, well.  Cant put that toothpaste back in the tube.

 

I wondered if extreme stress/anxiety could trigger the CML, but was told "no" by a couple different oncs... I sure hope they are right.  Hate to be able to blame myself for yet something else (Im also a bit of a nihlistic cynical prone-to-depression ass).

 

I love all the useless degrees we have floating around 

[Happycat]

Hi, I'm a 48 yo married mom of 3 daughters, 13, 11 and 11 (yes, twins) - all three born in December.  It's a rough month!  Live in Massachusetts.  I have a degree that is NOT useless, as in I actually use it everyday.  I'm a PhD organic chemist, and work in the life sciences area, making research tool compounds for life science researchers.  Well, I don't actually make them anymore, I just manage a group of chemists who actually produce the stuff.  The cool thing is that we are now getting CML drugs to list, including imatinib, bosutinib, curcumin derivatives, etc.  It's kinda cool to see customers buying these compounds knowing that they are using it to help discover a better drug, or cure another type of cancer. 

 

I don't get on here much anymore, just don't have the time between work and kids.  I actually got on tonight to crow about a new eye cream that actually gets rid of my puffy eyes, or at least most of it.  Check out jmoorhou's post on periorbital edema if interested.

 

CML is going really well.  I was dx'd back in April 2011 and have been MMR for the last 3 yrs, just bumping along between PCR and really, really low values.  I'm at the edge of detectability.  My oncologist tells me they have a new type of PCR test that is even more sensitive, can't remember what it is called now.  Digital PCR, maybe?  It had some techie sounding name.    But it is useful for the really low levels of disease quantification. 

[chiocchi]

Nice to meet you all!
I'm Carol ,was dx in 2010 from a routine CBC. Surprise!! I've been on Vitamin G since. I live in northeast Pa,am a nurse and work in a nys prison. Interesting clients,but there's more drama with staff than with the inmates.
We just had our 35th wedding anniversary ,have a son,daughter in law,and daughter and one little doggie. Love them all!
I've got an iPad and am having difficulty trying to put a pic up. I'm not too tecky,but any advice on how to?

[snowbear]

Hi.  I was just diagnosed today with CML after blood test showed genetic mutation.   Still shell shocked over it all as I was not expecting this.  Anyways, I'm a 44 year old female, divorced, two boys (11 & 14), living near Pittsburgh, PA.

 

I started this roller coaster in the spring of 2008 when I was hospitalized for high fever, swollen glands, severe body aches, and a WBC > 25,000.   ENT was called in and I was given steroids and antibiotics.  Within a few days, the swelling went down and my blood counts returned to normal and I was discharged.  

 

Time goes on and I develop more and more symptoms....eventually got diagnoses of 2 autoimmune diseases which the meds didn't work so well for.  Blood counts started to climb last summer and my docs insisted on a Hema/Onc referral last month.  At that time, my WBC was 22 with 5% immature cells.  Within just a few weeks, my WBC doubled to 42 and up to 25% immature cells.   Still waiting for a bone marrow biopsy, but will start Gleevic shortly afterwards.

 

Good news is that doc says with treatment for CML, some of my "lupus-like" symptoms may improve.  She's not sure if the immune dysfunction caused the mutation (causing the leukemia) or if the leukemia itself is causing the inflammation.   

[Shara]

Hello, my name is Shara and  was diagnosed December 26, 2007, when I went into the doctor for the third time ripping a  muscle in my chest wall. I thought I was vitimine deficient or something (not thinking the something was CML). I was 36 at the time of diagnose and have been PCRU since August of 2008. I don't tend to post very often but due tend to lurk on the site.

 

I am married and have one daughter in college obtaining her BSN.

 

I have been on Gleevec the whole time and had great results with major side affects to start that subsided to minor after about a year. I have been incredibly fortunate to have a great support system in place and put great value in prayer and God.

 

A little advice for the newbees, hang in there with the side affects, they will get better.

[carrie]

My name is Carrie. I am 57. I live in Arizona. I am a school teacher, specifically a Reading Specialist and Title I Director.

I am married and have twins who are 24. A boy and a girl. I am originally from Michigan. I lived in Missouri and California.

I love animals and nature. I love classic rock and roll and still go to concerts with my daughter. I am seeing Fleetwood Mac this week.

 

I was diagnosed in 2007. I have been on Gleevec for 7 years. I have never gotten to MMR. I am on a little roller coaster ride going up and down all the time. I increased Gleevec to 500 at one point and even 600. It did not make a difference.  Here are my PCR ABL/BCR numbers since they switched to the International Scale:

August 2012             0.166

December 2012        0.038

March 2013              1.155

April 2013                 0.798

July  2013                 0.104

Oct. 2013                 0.099

Jan. 2014                 0.701

April 2014                1.986

May  2014               1.063

Sept. 9, 2014           1.799

Sept. 24, 2014         2.817

 

If my December blood draw goes above 2.817, then my Onc wants to put me on a new chemo. I am a bit worried about new side effects and being able to teach. Most of the time I stay very positive through all of this, but I have my moments.

I have been on this board often reading mostly and not posting, but now I have concerns about different medicines.

Hello to all my fellow CML people. I hope the very best for all of you.

Carrie

[carrie]

Hi - 42 years old, living in northeast us. I'm 4+ years with cml and doing ok. I used to think about a lot now not as much, unless I see a number go up then I panic a bit. I struggle with anxiety but most days I get by fine. I'm married with two boys 8 and 10. They give me purpose and a reason to press on even when I don't feel like it. I have a semi useless BA but I put my MBA to pretty good use. I actually like my job for the most part so that's a plus. I was dx during routine blood work, I was trying to get in good shape and exercising a lot. I learned my lesson and don't do that anymore:). My first concert I saw was Kiss and the last concert I saw was Aerosmith. My biggest regret is that I didn't invest more in friendships I had over the years.
I'm kind of a computer geek and I like to watch tv.

I just recently saw Aerosmith (Let Rock Rule Tour) in Las Vegas. The last few concerts I went to were Crosby, Stills and Nash,  Bob Dylan, Dave Mason,  Phillip Phillips, Fleetwood Mac (without Christine McVie, Seeing Fleetwood Mac again this week with Christine McVie.  Seeing Elton John in March. I can't believe I waited until now to want to see as many concerts as possible. Luckily for me, most of the bands that I loved growing up are still touring. Money and time away from work are the two things that hold me back from hitting the road full time and seeing lots of concerts.

[carrie]

Hello,

Dx May of 2011, after being sent to hospital for high fever and flu like symptoms. My response has been slow due to cytopenias and I've tried every TKI, except Ponatinib. I'm on 400 mg of Bosulif now and have finally reached CCyR this Septemeber.

I just turned 60, live in Tucson, AZ, still madly in love with my amazing husband, have 3 children, 11 grandchildren, and a small rescue dog. Love to hang out with family and friends, garden, read, walk/hike, quilt, cheer on AZ wildcats in basketball, and do genealogy. We do enjoy watching college football and basketball, a little NFL and NBA, and Breaking Bad was a favorite till Walt made me hate him in the end.

First concert I went to was "The Doors" and the last one was "Boston" in July. Going to see Fleetwood Mac in December.

So grateful to have had the life I've had with my wonderful husband and praying to be able to enjoy my grandchildren for many more years to come. Also so grateful for this forum that has been and continues to be such a huge support system.

Best to all,
Melanie

Wow, Seeing the Doors, how incredible. I missed Boston. I was on a road trip. I am going to Fleetwood Mac too. I am so excited. Hello my Arizona neighbor.

[MCPO]

Hi!  I am now 32 years old and was diagnosed with CML four years ago when I was 28 years old two days after we returned from a Disney World trip.  My husband and I have four kids, ages 10, 8, and two 6 year olds.  I work part time as a Speech Pathologist with kids who have speech/language delays and feeding/swallowing disorders.  My degree has thankfully served me well, but I did the whole marriage-kids-college thing a little out of order which thankfully for me meant I had some life perspective on my side by that time and didn't get the original degree I was pursuing which would have been useless.  

 

I was initially on Sprycel, but recently changed to Tasigna due to bleeding issues with Tasigna.  Questioning if that was the right move or if we should have lowered again the Sprycel to 50mg from 70mg.  Oh well, 1st PCR since the switch coming up next week, so as long as it looks good, I'll move CML back to the backseat in my life again.  

 

Since my diagnosis, I've been to a few concerts ranging on the spectrum from New Kids on the Block and Backstreet Boys (I heart NKOTBSB) to Huey Lewis and the News.  I can't wait for Star Wars next year and I'm hoping Broadway producers are working hard on making Frozen come to life on stage.  

 

Another fun fact: I would vomit before my diagnosis if I ate anything with onion in it and since my treatments, I have now grown to absolutely love onions in any form.  

[chrissy778]

Hello, my name is Chris and I am 43 years old. I was diagnosed August 15, 2013 with you got it routine blood work. At first I was mad thinking a 229.000 white blood count was a lab error. Sadly it was a tough blow for me and my family. I was unaware of different leukemia's and was sure I was going to die with in a couple of months. I have a very supportive husband who puts up with my severe health anxiety's since diagnosis ( ok maybe some before diagnosis ) and also a beautiful 23 year old daughter. We live in Troy NY and I also have a useless degree in Criminal Justice. My first concert was Men At Work lol I have seen Metallica, Rolling Stones, Bon Jovi these are the ones that stand out that I remember but have not been to a concert in years. I just recently began to start my day with out "I have Leukemia" being my very first thought. All of you are a huge help and I am so glad I found this site.

[JPD]

Men At Work rock.  No, really.

[chrissy778]

lol, I was in 8th grade and begged my mother to take me. I still know all the words if I hear them on the radio, and I sported their Men at Work pin on my jean Jacket. Thank you for the memory 

[rcase13]

LOL I still go and see Colin Hay when he comes to town. I can't help it I love the eighties!

[carrie]

Just bought tickets to Elton John in Las Vegas, U2 in Phoenix, and Taylor Swift in Phoenix. These are in March, May and August. I so enjoy traveling and listening to music. I want to experience as much as I can with seeing the world, and hearing new music. I think this developed more after hearing I had leukemia back in 2007. Making memories!!!!! ...and having fun.

[SandyG353]

Hi

My name is Sandy.  I am a retired Elementary Guidance Counselor and Licensed Professional Counselor.  My daughter was diagnosed  5 and a half years ago.  She stopped at my place on her way from work to pick up her 15 month old son.  She called the doctor to find out why her blood tests were high in white counts.  His answer was that he believed that she had the beginning stages of leukemia.  At this , she fell to the floor and was crying that she was going to die.  The doctor was the assistant to the internist that we see.  This occurred on a Friday.  When the internist came back from vacation on Monday, he called her and calmed her down by saying that the high white counts can be due to many things and he set up an appointment with an oncologist.  I went with her, and the oncologist said that he was  happy to see her.  He had reviewed the blood work and told her that  if one was to get leukemia , hers was the best to have.  She had a Bone marrow test in the hospital in New Jersey and at Sloan Kettering in New York , and the diagnosis was confirmed.  She is a single parent and her only source of emotional support is me.  She was given the drug that precedes Gleevec.  (Hydroxy- or something like that).  She was very fatigued in the beginning but continued working  I brought dinner to her  every night..  Gradually she gained strength and most of the side effects disappeared except for eyebleed which has become worse lately..  I had the time to do research and joined a group called CML2@yahoo which has not been as active as it used to be .  I shared all of the information with my daughter. She was in molecular remission after 3- 5 months of being on Gleevec.  She was asked to participate in a DVD produced by Novartis.  It is called "The Ph +CML Patients Journey".  She and 2 other people appear on the video and talk about the reaction to the diagnosis,  people in their lives, and how they were doing .  This was to be given to oncologists to show to newly diagnosed patients to let them know that they do not have to be afraid.  The name of the drug is not given in the DVD.

[klf2013]

Hi everyone,

I'm Kara and just happened on this forum last week. I live in the western suburbs of Chicago with my husband and 3 teenage boys... 17, 15 and 13.  I am 44 years old and a school nurse in an elementary school. I enjoy reading, hanging with my family, hiking, and playing with my 2 cats and 3 dogs. I am a Green Bay Packers fan, living in Bear country.

 

I was diagnosed in January 2014 after several months of increased fatigue and a few weeks of abdominal discomfort. My PCP only checked my hgb thinking I just had anemia...which I did and she put me on iron. After a week of that, and not feeling better, only worse, I had to ask for a CBC. Low and behold my WBC were 70,000.  I tell everyone I know, that if the doctor wants to go to the trouble of checking and H/H, INSIST on a full CBC!!! Still only one poke!    After confirmation from the BMB, I was put on Sprycel 100mg. ALmost a year out and my numbers are great. MMR was achieved at 6months.

 

I am still trying to get a handle on the "new normal". Somedays are fine, many are not for various reasons. Does anyone notice memory loss with Sprycel?  I am a total space cadet now and swear I would forget my head if it wasn't attached to my body!!  That is a far cry from the PhD student I was a year ago!

 

It is nice to meet you all!