168 replies to this topic

[Antilogical]

Yo, Winespritzer - you did not list your favorite wines.

[RayT]

I'm a career paramedic, 39 years in the EMS business, spent past 22 years as a state EMS Bureau field rep (aka, State inspector/investigator.) I was Dx'd with CML in January 2014, on Gleevec since. CML is likely a result of my work coordinating rescue/recovery efforts at Ground Zero after 9/11.  Recently retired from fulltime employment due to Gleevec fatigue issues, now teaching part time for Dept of Emergency Medicine at a medical university hospital.  I'm also a tactical medic for a law enforcement SWAT team.  When not playing with ambulances, I'm a freelance percussionist playing mostly classical and musical theater gigs, as well as being half of an acoustic folk/rock duo.  I have a BS degree in Liberal Studies (depth areas in paramedic science and music) and a Graduate Certificate in Public Admin. I'm madly in love with my wife of 29 years and our 11yo daughter.

[nsharavana]

dear friends, many thanks for having such a wonderful discussion group against our common enemy CML.

 

i am a CML patient since 2003 from india .i am in MR 4 presently on international scale..i am keen to share my own personal experiences of my 13 year long CML fight.

i was on 800 mg glivec for long time being a slow responder..am presently on deescalated 400 mg dose since past one year..i am also keen to attempt a TFR but have never been PCRU consistently..i am considering adding low dose

interferon for 12 months.

 

best wishes to all you fellow fighters..we will prevail in the end and win..we need to have faith in modern science and research and it is just a matter of time before a true cure is discovered.

 

sherry from india

[Billie Murawski]

Hi Sherry,  Welcome from the other side of the world. I'm sorry you're a slow responder but I'm sure once you reach pcr you will stay there. I have had cml for 8 years.and am fortunate to be pcr for the last 5 years. As you say we have to have faith in modern medicine and soon there will be a cure. Thank you for joining us.  Sincerely Billie

[winespritzer]

Yo, Winespritzer - you did not list your favorite wines.

[winespritzer]

Ah, ha...antilogical!
Love drinking ruby port with shortbread every afternoon. Always wanted to go to Portugal, just to sample the port.
Also love ice wines with chocolates in the evenings. Stocked up on trips to upstate ny and Canada. Yummy.
In between,I drink whatever we get from Trader Joe's!
Guess I'm not a discerning drinker.
Thank god,sprycel hasn't done my liver in.

[R0f03l]

I am 24 years old live in Brazil. I was diagnosed with CLM when he was 23 years old after diagnosis since I gave up many dreams as professional and physical.

Currently I am and stopped in studies and suffer much from the side effects of Gleevec (Imatinib) and the bad SUS service (unified health system for poor) and struggle to get back to doing physical activity of high level and try to get focus to power back to school.

Ask guidance to veterans forum and people who went through the same problmeas than me.

Grateful.

[Gail's]

Welcome to RayT, nsharavana, and R0f031. Sorry you're here but it's a good place for those of us with cml. Gleevec has been tough on me, but the side effects are getting better or I'm getting better at living with them. I'm very tired with activity but keep going as much as I can and am looking forward to more travel time in retirement if I can afford it. R0f031, I'm so sorry to hear how hard this has been for you. Would Brazils health care system allow you to change to a different medication? I hate hearing you say how much you've given up. Maybe you would do better with a change of drug so you can do the things you like.

[Tucker1]

I am 63 and in the northwest with CML since 2004 I was diagnosed the year after I had surgery and radiation for breast cancer. I am on my 4th TKI but now just waiting for LFTs to get to normal so I can start bousitinib at a lower dose. I am an elementary reading specialist and hope to retire in 2 years after this one. My last concert was Train with Matt Nathanson and the Fray this summer. I have one surviving child a wonderful daughter who has held my hand through it all. I am a widow and live in a chi weenie run household for a small brown dog he is a real task master. I love to cook and often find myself making cookies at 2 am when I am to stressed to sleep needless to say the staff at my school love me. Right now CML is more real and scary than it has ever been.. Hoping for the best.

[Lucas]

hey, R0f03l, i'm brazilian too. i'm almost two years into therapy - taking tasigna now - and doing well. if you want some information "é so mandar uma mensagem privada". abraços.

[tiredblood]

I was diagnosed 11/2013 at 49 years old.  I live in the Southeastern U.S.  I had started noticing my WBC count was elevated on some past labs, not that I had labs drawn that often.  About the same time, I started seeing a new primary care doctor who ordered standard new patient labs.  Again, the WBC count was elevated. The PCP asked me if I knew what an elevated WBC count could indicate in the absence of infection, inflammation, etc.  I said, "Yes, cancer."  He told me he would have me come back in 2-3 weeks to draw more labs and if the WBCs were still elevated, he'd send me to a hematologist.  WBCs were still elevated.  He had ordered a peripheral blood smear which showed no blast cells, but WBC and neutrophils were elevated.  Then, went to the hematologist who said he really didn't think I had CML, but he'd do the labs to check for it.  PCR came back  BCR/ABL1 @ 123.210%, P210 mutation detected.  The doctor explained CML to me before I found out I had it, so I was familiar with what it entailed.  I was driving home on the interstate during a thunderstorm in rush hour traffic when I found out I had CML.  The doctor sent me the link to Tasigna.com and had me read about it over the weekend.  That following Monday, I told him I didn't see that I had any choice but to take it.  He replied, "You don't have to take it, but taking it is the only rational choice." I had just started nursing school the week prior to learning of my CML diagnosis.  I'm glad I had already paid the tuition, or else I probably would have put school off or not gone at all.  Graduated this past May and licensed in June.

 

After diagnosis, I started gathering past medical records and learned that my WBCs had been elevated for a few years, never getting over 19,000.  I was started on Tasigna and reached a complete molecular response by 3 months and have maintained a complete molecular response.  On 9/5/15, lowered my dose to 150mg in the morning and continued the 300mg dose in the evening.  My WBCs and neutrophils remain slightly elevated and we're not sure why.  The hard part was being sure I understood what I needed to know about CML, tell my children, and then figure out how to tell my parents.  Telling my parents was the hardest part.

[R0f03l]

Welcome to RayT, nsharavana, and R0f031. Sorry you're here but it's a good place for those of us with cml. Gleevec has been tough on me, but the side effects are getting better or I'm getting better at living with them. I'm very tired with activity but keep going as much as I can and am looking forward to more travel time in retirement if I can afford it. R0f031, I'm so sorry to hear how hard this has been for you. Would Brazils health care system allow you to change to a different medication? I hate hearing you say how much you've given up. Maybe you would do better with a change of drug so you can do the things you like.

 

 

Gail wish you a good journey and good recovery with Gleevec, anything can send a message that I am available.

 

I'm still just Gleevec usage time has not been done or one year of treatment. The health system does not change medicine.

I'm sorry for bad medical care and the bad health system in Brazil if we patients have to chase down information for a good quality in the treatment of CML.

 

Grateful they.

[tammielee]

Hi, my name is tammie Im 46yrs I was a nurse for 25 yrs and loved it. I have Cml dx. in 2012. Been married and divorced. have 4 kids most of them r grown up. I live in IL. I love 80 90 rock music. Now I watch a ton of tv  and play some facebook games. I'm a very caring truthful person. I also love doing crafts bead work and making quilts out of old blue jeans.

[Gail's]

Welcome Tammilee. I'm also a nurse still practicing (24 years) but looking forward to retirement in 2 years. Dx with cml January this year. I hope the best for you!

[surfdaisy76]

Hi, I'm Carol,

 

I'm so glad I saw this thread, it has been so interesting reading about all of you!  So a little about me...I'm a California girl-born and raised!  I LOVE my ocean but my name-Surfdaisy refers to the fact that I do not fit the image of the typical Southern Californian.  I'm much more of an English Rose type-blond hair, blue eyes and fair skin.  Sunblock is my best friend-always has been!!

I'm 57 and like so many of you have mentioned, music has always been a huge part of my life.  I actually have a jar full of concert ticket stubs that go back more years than I care to count!  My all-time favorite singer is Jackson Browne.  Many of you have also mentioned useless degrees...I was an English Lit major...need I say more??  I was in retail management/buying for over 25 years but decided I was tired of making money for corporations and changed careers about 3 years ago.  Now, I help individuals and families with their finances as an advisor.

I was diagnosed this past June after routine blood work at my annual physical-seems to be a pretty common story.  I'm blessed with a great family, wonderful friends and best of all a beautiful 8 month old grandson, Michael who is the light of my life and my reason for living!!

 

So glad I found all of you!

Carol

 

PS  The ONLY way I would eat liver is if someone tied me down and forced me to!!

[rnowinski]

Hi, my name is tammie Im 46yrs I was a nurse for 25 yrs and loved it. I have Cml dx. in 2012. Been married and divorced. have 4 kids most of them r grown up. I live in IL. I love 80 90 rock music. Now I watch a ton of tv  and play some facebook games. I'm a very caring truthful person. I also love doing crafts bead work and making quilts out of old blue jeans.

Welcome Tammielee. I also live in Illinois....the Quad Cities. What meds are you on?

[dede5]

Surfdaisy76 (Carol):

 

Pleasure to meet you. You and I are the same age. I, too, am blond, blue eyed, and fair skinned, so I know what you mean about sunblock. I find that's an even bigger issue now. To avoid repeating myself, you can find my introduction on page 4 of this thread, if you want. The only thing that's changed is that I'm about 4 weeks away from having my 6th grandchild. The oldest one is a boy, and the rest are all girls.

 

Welcome to all who have recently joined this exclusive club. Hope you can all find good information, as well as comfort and support, within this group.

[surfdaisy76]

dede5 (Diane):

 

It is nice to meet you as well!  Here's another interesting tidbit-my middle name is Diane!  Funny, huh?  So, you have 5 (almost 6) grandchildren-how wonderful!!  Is the one boy spoiled or just overwhelmed by all the girls?  Ha!  I know I am over the moon over my one and only (so far) and would probably be completely insane if I had 6!!!  Kids grow up so fast, you have to enjoy every minute you have with them while they're little! 

 

Best wishes, Diane, I'm sure we will chat again!

 

Carol

 

 

[thatguy]

I'm a 29 year old male living in Las Vegas for the past 3 years, but born and raised in Maryland (my family is still there, and I miss the area.) I'm married and have a 2 year old daughter and (1) unknown on the way (gleevec miracle conception)...I was diagnosed late March of 2014, due to a blood order for easy bruising with lumps forming beneath. Lived on energy drink packets and excedrine migraine for most of 2012 until diag. Wbc was 231k with enlarged spleen and liver. Still chronic phase, I believe, however. Initiated 400 MG gleevec, obsessively complied to dosage, and switched to Tasigna 600 MG in January for stalled pcr @ 1.7 i.s. My gleevec experience was great except for bad nausea, treated easily by Zofran. Tasigna, feels great- no nausea, yet the early blood panel revealed slightly elevated alt, bilirubin, blood sugar and slight decrease in mchc. Waiting on cbc, m. panel and pcr results from this week.

I love all food, and constantly regret Vegas buffets and local grease pits, although I do eat healthier and exercise daily since diag. I repair and install dental equipment for a living now, which I transitioned into after working as a Toyota mechanic in Pennsylvania, while I lived in Maryland. Hobbies are: golf, guns, my motorcycle, food, politics and my family. Used to love dirt bikes and quads when I had wonderful east coast soil, but not much anymore. Music- I like the flavor of the week, mainly electronic and country, but can't really tolerate r&b, or hearing songs that I know too well. Lol.

I grew up in a blue collar family, working and playing around solvents, gasoline, oil and other chemicals. I had a lawn care business from 8 to 26, concurrent with other jobs. I had a lot of bad headaches throughout life until diagnosis, and took a lot of antibiotics for acne as a teen. As mentioned, I straight-up abused energy drinks containing sodium benzoate and vitamin c (which I now find to be linked to blood cancer due to benzene formation). Working around dental x-rays may also not have helped. ..but these items I feel contributed to my disease. No prior health conditions for myself, or rampant cancer in my family.

Anyway, I'm glad for the existence of this site that I found recently, and the candid input that everyone voices. And Trey- you're the man. Thanks.

[Chrissy_Z]

Hi All I just joined today.
 

I am from the beautiful Central Coast of California and I am 33 years old. I was born and raised up in the Bay Area. I am newly diagnosed 01/08/2016. I have an 8 month old son and a 2.5 year old daughter (yup less than two years apart) who I adore completely. I am married and I work. My blood work was totally fine at the birth of my son and not good at diagnosis 6 months later. I went into the Dr. because of near fainting spells and illness that would not go away and they did blood work and found the elevated WBC. I was put on Gleevec immediately and we will see how this goes when I go in for my 3 month test in a few weeks.