11 replies to this topic

[Tom1278]

I'm 33, in great physical health, and live in the DC Metro area.  On Monday, I was at my internist for my annual physical, and by Tuesday I got an urgent call to come back because my WBC was "elevated".  He re-ran the test, and took me in to show me the results.  It was 120,000.  I knew what it possibly was, and he already had gotten me an appointment to see a hematologist the next day (Wednesday).  He re-did the test because he did a very thorough physical and there was nothing wrong.  I had zero symptoms.

The hematologist, from my labs, said I had CML, but needed the bone marrow biopsy to confirm.  I cried... But it was tears of joy, because I knew CML would be a chronic, manageable disease.   The hematologist said due to my age, good health, and that it was caught early in the chronic phase (blast cells less than 2%), that I will do fine with treatment, and I should expect it to be like diabetes - I will live a relatively normal life with a disease that needs constant monitoring.    He put me on allopurinol/hydroxyurea right away just to get the WBC down pending the diagnosis.

Friday I got the results back, Ph+ CML.  My Gleevec is on the way and I should start it on Tuesday once I have my one week follow-up.

It might be odd, but ever since I heard it was CML, my fear and anxiety has gone away.  I know what I have, and I'm confident I'll beat the damn thing. 

The only thing I fear at this point is telling my parents, who are in their 60s.  My sister had a life threatening condition when she was 13, and I saw what it did to them 15+ years ago.  I'm debating whether to tell them now (I had a pre-planned trip to NJ this weekend, by chance) or to wait until I'm on the Gleevec and can point to blood test results.

[sharcare]

Hi Tom, I'm 56 and was diagnosed the same way, on July 6th.  My WBC count was 134,000. Same thing rushed into ER, I felt fine except i was a little fatigued and had an occasional low grade fever and sweats.  I chalked it all up to menopause.

I'm starting Sprycel when it arrives (which should be early part of next week).  I'm beginning to feel a little anxious this weekend.  Actually today I feel like I got hit by a truck.  But I too feel confident that everything will be fine.  I found a dr. I really like (he's your age lol 34!)  I figure he'll treat me like I'm his mother!

Not sure what to tell u about yor parents.  I know for myself I would want my boys to tell me immediately. ( i have 3 sons ages 32,30 and 24), but then again they might not tell me cause then my husband and I would be "bugging" them daily as to how they were feeling and what we could do!

do u have support in DC? partner/friends?

Best of Life and God Bless

Sharon

[mikefromillinois]

Hi Tom, and welcome.

Remembering back when I was first diagnosed, one issue was that there is a lot of outdated information on the internet that is not current with today's medical knowledge.  The old information suggests gloomier prospects for CML patients than the current reality.  With regard to telling family and friends, you might want to considering doing some homework and putting together a nice list of "links" to provide to them so that they do not - on their own - explore the internet and stumble across old articles that will cause them unnecessary worrying.

If you haven't already figured it out, this Board is a great source of information and support.

Wishing you good health and many happy days...

Mike

[Lori's okay]

HI Tom,

Glad you found the forum.  And, that you have a quick, early, and definitive diagnosis. 

Your question is concerning telling your parents.  Folks on here do this very differently.  I've told many of my friends and family, some tell almost no one.  That's a very personal preference.  In your case, being young and so healthy, I hope the journey is a very smooth one.  Some people continue life as if little happened, if that is what it will be like for you it may be just fine to wait to tell the folks.  My experience was more difficult, but I am closer to your mom's age than yours.  Hopefully your youth and health will make this easy on you.  You can see from the other posts on this forum that the experience varies a lot. Either way, your own peace of mind and lack of fear will be a great strength to your parents!

If you have not seen them yet, there are some amazing resources for good info on the forum.  Some of the frequent participants are incredibly knowledgeable, especially Trey. Here's one example: 

http://community.lls...tart=0&tstart=0

By the way, I also live in the DC area, in the NoVa suburbs. 

Again, welcome.  Keep us posted.  Hope this goes very well for you.

Lori

[Susan61]

Hi Tom: Welcome to the group, and you seem to already have information on CML that has relieved your mind in many ways.  Your right in your thoughts about survival.  I am on Gleevec now for 11 years, and have had CML for 13 years.

So that just proves your theory on survival.  Maybe if you give your parents some statistics about what you have found out from reading the groups postings it will make it easier to tell them.  People hear the word Leukemia, and thats all they know because years ago it was very evident that you would not survive for more than a few years.

You say they are in their 60's. I am sure you can explain it to them better than if they were a lot older.  Then just keep them updated on your results as you improve along your journey,

    You said you will be starting on your Gleevec this week.  The biggest thing to remember is to eat a substantial meal before taking the pill to avoid some of the side effects like nausea. I take mine with breakfast every morning, and I have no problem.  As you take it, and you have any side effects that you would like to share I am sure we can answer all your questions.  Glad you joined us.

Susan

[Susan61]

Hi Sharon: Just wanted to welcome you along with Tom, and we have so many other new people who have joined us.

I hope you do well on your Sprycel, and we have a lot of people here who are also on Sprycel.  Just join in anytime, or ask questions that will surely come up along the way.  Side effects are different in some ways on the various TKI drugs, and never hesitate to ask anything.  Somebody always can share what they experience to help you.

We have a great group, and everyone is supportive of each other.

Susan

[Happycat]

Tom,

Welcome, and my condolences that you have to be here. However, I must ask, how the heck did you know about CML ahead of time?  I'd never heard of it before I was dx'd. I'd heard of gleevec, but I don't remember hearing about cml.  So enlighten us, please. I'd love to know.

Regarding your parents, you know them best. If you believe they will be better off hearing about it after you have some test results to calm their fears, then go that route. If, on the other hand, they'll be hurt or really mad being kept in the dark, then maybe tell them and let them go along for the emotional ride. You could send them some up to date articles that show how well managed the disease is nowadays. I know they are out there, some really great positive ones, too. In fact, I think Lucky was posting some links to them earlier this week!  If you think reading some good articles will help allay their fears, I'm sure someone here can point you in the right direction.

HTH,

Traci

[Megz]

Tom,

Welcome to the CML group! I think you're the first person i've heard of that has cried in relief rather than fear, I'm glad you have such a positive attitude about it. I got diagnosed the same way, I'm really glad my work requires me to have a yearly physical because they caught it early too. I'd say treatment for the most part has been, I guess you could say, like having diabetes, except you don't have to take different dosages everyday. I was diagnosed in September and was in very good physical shape; now, I just turned 23 last month and I am planning on doing the Jimmy fund walk in September. So yes, you can plan on leading a relatively normal life as long as treatment works. In the beginning expect to be tired, Tasigna and Gleevec for me were both hard to start, but after a week or two of rest I went back to work (Im only working 3-4 days/week) so I still rest a lot, but I walk and im finally starting to feel like I have most of my old energy back. So like you said, be positive! I don't go out and party like I used to (Hey! I was 22), but I make the occcasional bon fire and pool night at the bar. Aside from some side effects, some of which can be a pain in the but and some are a breeze, Im doing alright and a lot of other people with CML are too. So Good Luck! and if you need anything or have questions, everyone on her is very helpful!

Meg

[Tom1278]

Hi all,

Thanks for the kind comments.  I told my parents last night.  My Mom first, and my Dad second (he wasn't home when I got home).  It went better that I thought.  Of course, my Mom pulled out her iPad and fired up Google - and luckily what she read made her feel better.  I also showed her some other sites as well.  I went out to meet a friend for coffee, and when I came home, she was like "You have the Philadelphia chromosome, right?".  It's amazing how much information is instantly available these days.

Dad was calmer because Mom was calm.  This morning, all seems OK, but, of course, they are still a bit on edge.  My Mom called a few close friends to tell them/talk about it.

@Sharon - Yes, I definitely have a support system in DC... partner, friends, etc.

@Mike - I was able to direct my Mom to some specific websites.  It really helped her to understand it better.

@Lori - I work in Northern Virginia in the Springfield/Burke area.  I live in Silver Spring (the commute isn't that bad, surprisingly).

@Susan - Thanks for the comments.  I found the hydroxyurea is much better after a small meal, too.  I haven't had any side effects from that yet (knock on wood).

@Happycat - When I first found out my WBC was so high, I became an Internet sleuth and learned all about leukemia, since I wasn't seeing my hematologist until the next day.  So, I was praying it would be CML, since I saw all the information about patient outcomes with Gleevec, Sprycel, etc. and how it turned CML into a chronic, manageable disease.

@Meg - I'm convinced a positive attitude will help me beat this damn thing.  I really believe in the effect of thoughts and emotions on health.  I'm letting a lot of negative baggage go - I don't need that crap in my life these days!!

[Megz]

Tom,

Completely agree with that montra. My go to phrases are "smiles are contageous" and "fake it until you feel it". It is especially is good for when your around friends and family. I never want people to see me feeling crappy so I put on a smile and try and have a good time, don't let it take over your life like that. Plus people are more relaxed around me when Im happy and smiling, it eases their fears and in turn takes a burden off of me having to worry about them, worrying about me. I think the term leukemia is the scariest thing for people, but like you said, its managable, and you need to focus on that. So yay for positive attitude! You have to be happy and thats the bottom line.

If you're having a bad day, i have found exercise helps. I like to drive up to the white mountains and hike for the day. If you're a hiker or a runner/walker i stongly recommed it, i think the dc area has some good hiking, the fresh air is good for the soul, especially picking trails with water falls!

Good luck!

[Marnie]

Hi, Tom, and welcome to the club. 

Sounds like you are heading into this with the right attitude.  I'm glad that your parents handled the information so well.  Something to think about, if you haven't already. . .you might want to talk with your parents about how your personal medical information is given out.  I assumed that my mother would understand that my diagnosis was MY information to dispense.  I discovered rather abruptly, when I opened and read her annual Christmas letter, that she had broadcast my diagnosis to the entire world.  At that time, I was still considering whether or not I was going to keep the diagnosis close to home or not.  Were I to do it over again, I would not tell my parents immedietly, and when I told them, I would have been very clear that I would let them know if they could pass information on.  Now, I give my parents only brief updates when things are going well. 

I also found that at first, my mother seemed to see my no longer as the person I had always been and still am, but as "someone with cancer."  Every converstation started with "Oh. . .how are you feeling now?"  which drove me crazy. 

Good luck, and all the best.

Marnie

[Tom1278]

I had that conversation with her last night.  On my Mom's side, we have a LARGE Italian family.  She has permission to tell a few close family friends and my uncle/aunt.  I've already told her that's as far as I want it to go.  I haven't decided the extent of my disclosure yet with friends, acquaintances, etc.