70 replies to this topic

[Anti-Matters]

August, I had much the same experience with an ER doctor, who fancied himself Sherlock Holmes and was deducing all sorts of things until my WBC set off alarms. He told me rather bluntly, "You have leukemia and need aggressive chemo right away." I was then bundled off to the university hospital where cooler heads prevailed.

[rcase13]

LOL yours was better than my emergency room doc. I was told I would not survive and to prepare my family.

[cedespres]

    Mine was July of 2014. I had worked hard trying to get in shape after a cabgx4 in 2012 and was up to walking 5 to 8 miles everyday. I started to feel kind of tired and could not figure out why. I did have some night sweats but had no idea that that could be meaningful.On the last weekend of June we got some lobster and steamers for my wifes birthday but I felt awful and could not eat so laid down on the couch. By the next morning I was unresponsive when my wife tried to wake me. She called 911 and the adventure began.

    At the er they checked for lots of things and were very concerned about my having 130,000 wbc. It turned out that a i had 3 distinct things going on. What had caused be to be so sick was a tick born disease , and I was having bouts of supra ventricular tachacardia which caused me to keep coding and them sending in the crash team. Over 9 days they did lots of tests, one being a bmb. The bmb was done in the room and I am still so thankful for the nurse who held my hand as it was not a very enjoyable experience. I am surprised her hand was not hurt.

    The cardiac specialist did an ablation on my last full day at the hospital and fixed the SVTs and I got some sleep that night. The next day just before discharge a doctor came in and said, by the way, your bmb came back and you have cancer and need to call the doctor who did the bmb (hematologist /oclogist) when I got home to get an appointment ASAP. I really had no idea what to say so I left the hospital called the onc office and had an appointment for the next day. I started on gleevec for the first 6 months and was changed to sprycel. Sorry for this being so long but once I started I found it hard to stop.

Thanks,

Ed

[Terran]

Ed, don't apologize. We totally understand. I'm glad you managed to get all that out. Thank you for sharing.

[Kali]

I went for a physical and incidentally mentioned my fatigue and some sweating around my rib cage in the previous month. Doctor ran some blood tests and I was ultimately diagnosed.

[surfdaisy76]

I think the thing that still bothers me is that I was fine.   In retrospect I can see a few things like night sweats and how I caught two colds within six months (and I hadn't had a cold in 5 years) but I just didn't pay much attention to them because they weren't that big of a deal.  Then suddenly I went from being crazy-healthy...I never got sick...to having this!  Literally overnight!  It takes some getting used to that's for sure!  But we play the cards we're dealt, right? 

[chriskuo]

CML starts gradually and it takes time for the white blood cell counts at which we are typically diagnosed. We often don't feel very sich until the WBC get quite high. Then in retrospect, we recognize that there were some things earlier that were related to CML. For example
, I had a serious gum infection about 4 months before I was diagnosed.

[Kali]

I agree. My diagnosis was July 2014. I think we are reeling with shock, dismay and fear for quite some time. At least I was. Then feeling depressed and confused. Anger, sadness and now finally gratitude for the medications we have and hope for the new discoveries that we all keep hearing about.

[Terran]

Surfdaisy
How do you / did you make yourself take the meds? I think I'd have had trouble believing the diagnosis, if I hadn't felt so bad just prior to dx. But I'm also g glad for you that you didn't have to go months wondering if life is this hard for everyone.

[Anti-Matters]

That's one of the many things that disturbs me - something going that far wrong and not feeling any different. Sure I was tired before diagnosis, but I had a full time job, freelance work and I was taking classes. Night sweats? I was generally a sweaty guy. Five months earlier I was even at the same hospital that diagnosed me (for a broken bone) with not a word. 

[Anti-Matters]

LOL yours was better than my emergency room doc. I was told I would not survive and to prepare my family.

 

Yep, you're right.

[amcantley]

I feel the same way as Anti-matters and Surfdaisy76. I was fine. If I felt fine, but was actually so unhealthy, what else could I miss in the future? I try not to dwell on it. But it does concern me from time to time. I don't want to become a chicken little that constantly freaks out about the smallest issue, but I also don't want to ignore potentially serious matters. I also figure that with the amount of blood work I'm having done many things could potentially be caught early even if I don't recognize it as an issue.

[Kali]

Amcantly,
Thank you for sharing about the frequent blood tests and the liklehood of catching other things early hopefully. I feel for anyone who gets a cancer diagnosis.

[Gail's]

I've told my story before. In a nutshell, found out from a routine blood test out of the blue. Thought I was fine, just tired from work and aging. My son, a close friend, and my medical assistant at work all noticed that the prior year I was really tired, drinking more coffee with naps during my lunch to get thru the day. Guess I had selective memory and was actually more tired than I remember. The fatigue is so much more noticeable to me since starting the TKI. But at least some of the GI stuff has improved. Speaking of tired, it's nap time!

[tammielee]

WOW, You could almost put all the stories to together and get mine. It's amazing!! So let's start in 2004 I fell 18 ft. fractured my pelvic bone in 3 places. So it healed badly crooked and I was and major pain all the time. I got to the point I could do stuff around the house. Then 2006 I fell sick, sore, headaches, joints, hurts, heart palpitations, night sweats, not hungery. These problems just rotated. kidney stones, gallstones. Totally whipped out. I could due a load of laundry be done for a day or three. Back to bed I went. I was told that I never work again. So people thought I was depressed. My dr. thought so too. So antidepressants I go. Didn't help. I went to ER migraines or chest pains. In 2012 I went to the ER for chest pains. Dr. did there labs and every thing. I layed their hours waiting answers. Then I call the nurse and asked what's going on. If my hearts ok I'm going home. Dr. came in talk to me said that there some thing wrong with my blood but he didn't know what exactly. I needed to follow up with my dr. in a couple days. So more lab work was done wbc 25 thousandths Dr. called told me I need to see blood dr. That's when I knew. onc Dr. said that my cml could be traced back to 2007. At least ten trips to E.R. and under Dr. care for yrs. along with 3 surgeries and no one caught it. I read all these stories thanks to all that have shared.

[surfdaisy76]

I am just continually amazed at all of your stories!  I would never have guessed how much it would help to hear other's stories and realize that none of us is really alone in this!!

Terran, you posed a question to me a couple of days ago and made me think about it!  It's true when I got my dx I was fine.  Had my physical, doc said everything was great, we'll do your labs and I'll give you the referral for your mam.  Just the regular stuff.  Then as I've mentioned before I got the phone call at midnight to go to urgent care and I got my ticket punched for the CML train!!  :-(

The doctor that night at urgent care was the first to mention leukemia, but he said it like this can't be correct.  To quote him, he said, "If these numbers on your CBC were accurate you wouldn't be sitting here!"  3rd round of blood tests that day came back the same, so he said I needed to see a hematologist just to clear up what was happening to my tests.  So two days later I'm sitting in the doctor's office and he's telling me I have leukemia.  I remember my first instinct was to reply," excuse me Dr., it sounded like you said I had leukemia, what did you really say?"  I was that shocked to hear that dx.  I remember I didn't cry but I could tell my eyes were as big as saucers and full of tears!  To me, leukemia = death.  From there all the other stuff started that I know you are all well versed about so I won't share, but at the time the doctor told me what my treatment was going to be I was on board because I wanted this to go away.  Of course I did a ton of research on my own...it's such a whole new world.  So now, almost 5 months into this world, I ask lots of questions, I track my numbers and I'm always looking for ways to take care of myself because I now understand this isn't going away, I have to learn how to live with it and to keep fighting.  I have been fortunate the side effects with the Sprycel haven't been terrible but have changed my life enough to make me completely understand the love/hate relationship we have with these meds. 

Sorry this post is so long it just kind of poured out of me.  Thanks for letting me share the journey with all of you!

Carol

[RayT]

Terran, you make yourself take the medicine everyday because that is what you need to do in order to stay "well" and alive for whatever reason you want to live. My reason to live is the woman who has stuck with me through everything that "life" has thrown at us for over 30 years (married 29 years.)  There's also this 11yo girl who drives me nuts most days but hugs me every night saying, "Good night, Daddy, I love you."

 

When my illnesses (Hodgkins Disease, MI and CHF due to Hodgkins chemo, CML, anemia, fatigue, etc.) get to me, I remind myself that there's nothing I can't do with God's help.  ("I can do all things through Christ who strengthens me." Phil 4:13)  It also helps to think about those who are in much worse shape than me and deal with it with a lot more class than me. When I was feeling sorry for myself last week while losing an entire day to have 1 unit of packed cells transfused, I reminded myself of all the kidney dialysis patients who are stuck in chairs hooked to machines 3 days/week, EVERY week.  I got out of bed this morning and dressed myself and fixed myself breakfast. How many people WISH they could do that? Then there is Nick Vujicic, a man with no arms and no legs. I saw Nick speak at The Kingdom Bound festival in July 2014, 5 months after my CML dx. He changed my whole attitude. Watch a few of his videos on YouTube. (https://www.youtube....h?v=1lrXTvOTncU)

 

Hang in, there. I say a prayer every night for all of you...

[mikefromillinois]

Nice post RayT.  Thank you.

[surfdaisy76]

Ray T., thank you for your beautiful message!  I am enjoying a wonderful, amazing, almost like I don't have CML feel-good day and reading your post took me right over the top!!!! 

My reason for getting through this is my adorable 8 month-old grandson who I fully plan to see graduate from college!!!

Thanks, for your prayers, Ray...I pray for all of you as well!

 

Carol

[August1]

August, I had much the same experience with an ER doctor, who fancied himself Sherlock Holmes and was deducing all sorts of things until my WBC set off alarms. He told me rather bluntly, "You have leukemia and need aggressive chemo right away." I was then bundled off to the university hospital where cooler heads prevailed.

 

Hey Anti-Matters,

I felt the same way. It was like she was in there practicing what she would say to someone with this condition. I don't think she had any bad intentions and I have no ill-will but I felt like I was a medical curiosity. She was saying things like "you have all of these immature bad cells multiplying in your body ... It's not good, and I am so sorry." I remember thinking, "Wait a second, just yesterday I was out jogging, riding my bike, working, and raising my kids. Who is this person?" She was certainly not helping and I all I could do was sit there and take it. 

 

Like you, I got much better care once I was dealing with a hematologic oncologist. It is so important to get the right oncologist.