48 replies to this topic

[AmyH]

Oh wow!  You are super mom! 

[AmyH]

At first they were all really upset and freaking out, but they are getting better now since they know I can some what treat CML.  We are all hoping this medication works and all of that. 

We are having all kinds of help from our church and friends here and my husband's squadron is very supportive and giving him time off. 

[AmyH]

Thank you Marnie!

[AmyH]

Okay, I will do that!  Thank you!

[AmyH]

Okay, I will do that!  Thank you so much!

[AmyH]

Thank you.  I am so scared about not being able to watch my babies grow and watch them have babies.  It really is breaking my heart.  I'm having a hard time today and I didn't sleep well last night....but I'm trying to stay positive about it all. 

Happy to meet you!  God bless you & your family as well.

[GerryL]

Hi Amy,

I remember when I had my first major blood test and they took 8 phials of blood - had to lie down for that one, made me feel queasy at the thought of it. Hopefully the meds work well for you and you get to the stage where you only have a blood test every six months - that will be at Major Molecular Response. In Australia (where I'm from) they only take six files of blood for that one. I wound up only having two BMBs as I was diagnosed fairly early, tolerate the Gleevec side effects fairly well (though I have been known to grumble about them) and I responded well to Gleevec.

I should have a hunt round to see if I can find Trey's info to bump it to the top. The more "current" information you have, the more you feel in control for this disease. If you're checking things out on the Internet, just make sure you're only looking at current information.

[GerryL]

Hi Amy,

A bit of reading for you

http://treyscml.blogspot.com/

Also Susan will probably stop in to say hello, if she isn't caught up with something. Susan (and there are a few others here on the board) was around prior to Gleevec, so has been diagnosed with CML for 13 years and is still going strong.

[lala]

Hi, Amy.  I remember hearing the cml word and immediately thinking of my kids and watching them grow up.  I hoped for the seven years they somewhat promised me and was happy to think I could get my baby almost through college.  That was six years ago and he is a junior in college.  I no longer worry about dying early......the meds are great, side effects not great but heck, I am still here!  I plan on living a long life.....and you can too!!!!!!!!  Hang in there......btw, I have 3 big kids and one grandson....cutest baby ever!!!!!!  He is 15 months and soooo much fun.  Sending good thoughts from Chicago.......Lala

[Judy2]

Hi Amy,

As others have said, remember to read only current information on the Internet as there is a lot of outdated information out there. CML is a very treatable condition now, you will see your children grow up , you will experience having them drive you crazy as teenagers, you will have a long full life and watch your children grow and have babies of their own. Ryan O'neal and Kareem Abdul Jabbar have CML and they are going strong. Well Ryan O'neil has his problems but that has nothing to do with CML. Anyway, I guess I'm trying to tell you to take a deep breath, relax, know you have lots of support from people who have been where you are now and have faith and knowledge that it is going to be alright.

Judy

[Tedsey]

Amy,

A few weeks before I was diagnosed, my kids turned 1 and 3.  I so understand how scared you are thinking you may not be able to see them grow up.  But two years later, I feel much more positive.  My husband and I even use the phrase "when we retire".  I just couldn't bring myself to talk like that when I was first diagnosed.  Also, my onc was very negative and told me flat out that she had me on a ten year plan and would give me a SCT (because she felt I was young--but I was many years older than you).  It is very tough when you have young children.  And it is very tough when you see young mothers who don't have to go through what we do.  But I have come to realize after time and meeting some very smug younger people who think they will never get cancer and thus live forever, there are no guarantees in life.  Any one can die of anything at any time.  No one knows when they will take their last breath.  Having CML is not the same as having one leg in the "Great Beyond" (and some people will put you there---too bad for them).  It brings mortality from the back to the front burner real quick though.  But, I think as a result, I do not take the time I have now for granted.  All we could ever count on is now, anyway.  Right?  This whole experience has shown me how precious life really is.  And there are young people or older who deal with a lot.  We just don't always know their past or what they must endure every day.  So, just love your kids and try to live your life as if you will live.  You just may grow very old.   

Here is to knowing and loving our grandchildren,

Tedsey

P.S. I don't know if this will help, but I saw a child psychologist for my son.  She said it is OK to talk to the kids like I will live a normal lifespan.  It is OK to say, "When I am an old lady..."etc.  It is not really a lie.  And little children don't really understand if we were to say, "If I grow old...".  They get confused and scared.  My 3 year old was and still is very sensitive and smart.  He understood a bit of what was going on when I was first diagnosed (well, at least that there was a crisis in the family and it involved his mommy).  He has some issues we have been dealing with.  But nothing that cannot be fixed.  He will be OK.  So will your kids.

[pammartin]

Judy,

That might be an understatement, Ryan O'Neal has his problems, but they have nothing to do with CML, hehe  made me LOL!

Pam

[Judy2]

Hi Pam,

Glad I could give you a chuckle. How's the house coming? When will you be done with the move? BTW, have you heard from Billie down in Florida? I'm waiting for her to post and tell us about the warm weather so I can have a vicarious experience. I can't take the cold anymore.

Judy

[Pinkbubbles9642]

Hi Amy! I'm newer to the site as well and it has been a blessing to me! I am on the younger side I just turned 21 so I can relate the feeling that being so young and diagnosed stinks! There are so many people on here who are angels in disguise and some who are like my virtual mothers! i lost my mom 2 yrs ago and I was diag. 1 yr ago its been a hard year alone and now that I have this site I feel I have more support, so post away so we can all be here for each other! i'm so glad you have support from your husband and kids, I think that is the one thing i will miss the most that I never got to have a baby and told I wouldn't be able to. I hope Gleevec is the answer for you, I had some side effects of muscle spazims, burning sensations and nausea. I was put on zofran and vicodin and it helped out a lot.

And so you know I've had 3 biopsy's and all 3 hurt like h*ll and it took me like 4 days to feel better. After two days it stopped hurting while i walked but would sore to touch and sit it depends on you're body and how the doctor does it to. My first two were done while laying on my side and last one I laid flatt on my tummy. Also, i was told I have "deep bone cavities" so everyone is different. hopefully this site will bring you the support and friendship it has brought for me! have a great week : )

<3 Mj

[pammartin]

HI Judy,

The total move awaits.  These past days I have been more than slow, today I bet I slept more than I was awake.  It is frustrating, boxes to unpack and things to put away and I sleep on the couch.  All I can do is realize I do not have the ability to do what I used to, even when I push myself.  This weekend we found (calling the new house Money Pit, if anyone has seen that movie) there was no insulation in the laundry room ceiling, during those single digit days we had snow/ice melting off the roof, major heat loss!  So this past weekend we took down ceiling, insulated and then put back up.  I think I did myself in.  Today I went for bloodwork, ran a few errands and then hit the couch, didn't even eat dinner with everyone, not hungry just tired.  Friday is Pittsburgh day, will be most interested in what happens down there, waiting on schedule for appointment at Cleveland Clinic, so everything is progressing.  (except my energy level)  Hope you are doing well, can't remember have you begun the Sprycel yet?  Wondering how you are doing on it if so. 

Pam

[Judy2]

Hi Pam,

Did you and your husband take down the laundry room ceiling yourselves (actually, if I'm being honest even pre-CML I would never attempt a project like that)? I'm so tired these days I barely have the energy or the motivation to do much of anything. Today I was out doing errands for 4 hours and now I'm so exhausted I can barely breath.

Please let me know when you get the results of todays blood tests and also let me know how Pittsburg goes? How long a trip is that for you? Also let me know when you go to Cleveland, I'm really interested to see what the onc, there has to say. I wonder what he will say about your dose of Sprycel.

I'll be starting Sprycel one week from tomorrow. Wednesday is my last Gleevec day, then I'm off all meds for 5 days, then on to Sprycel. I'm hoping 50mg is going to do the trick for me as I'm really nervous about the side effects. I'm so tired of dealing with all these medicines and their side effects. Why did our numbers 9 and 22 chromosomes have to go wandering? Stupid chromosomes!!!

Anyway, hope you get some rest,

Judy

[Marnie]

HI, Judy. . .When I switched from Gleevec to Sprycel, I took a 5-day break, and then did 5 days of 50 mg of Sprycel before moving to full dose of 100mg.  I had a mild headache for about a week, maybe 2, and that was it.  I had heard horror stories of debilitating headaches, so I was very nervous about starting.  I feel a ton better on Sprycel.  Still have the fatigue, of course, but no more g.i. issues, no more muscle cramps, no more nausea.  Sprycel has been good to me.  Now if only my PCR results come back with lots of zeros (they are not in yet) I'll be very happy.  I seem to be a turtle, so I get pretty frustrated with my numbers. 

Anyway. . .I hope your change to Sprycel goes as easily for you as it did for me.  Just a few days of mild headache.

Marnie

[Judy2]

Hi Marnie,

Thanks for posting. It's nice to hear of someone who doesn't have too many side effects fron Sprycel, I'll hold on to that. How long have you been on Sprycel and what is your PCR number? I think the plan with me is to stay at 50mg and see if that works. I'm hoping for the best.

Judy

[Ted]

Hi Pam,

If I remember correctly you are on 140mg of sprycel,, I'm only taking 100mg and it's beating me up pretty good. I abandoned my exercise routine when everything went wrong for me in late November. I thought I should get back into it  so Saturday morning I spent 30 to 35 minutes on the bike trainer. That was a mistake, it had me on the couch Saturday afternoon and most of the day Sunday. Well Saturday evening we did have some friends stop by for a while, that may not have helped the situation. I hope this isn't a long term side effect of sprycel, I don't like it very much. I wonder if a lot of others are having this problem or is it only a select few? I guess I'll just watch the posts for more info.

Ted

[Marnie]

Hi, Judy. .

I've been on Sprycel for exactly a year.  I was on Gleevec for a little over a year and a half before that.  My last few PCR numbers have been bouncing around:  .002, .008, .002, .003.   My numbers dropped quite dramatically when I started on Sprycel.  They had flattened out and started to rise .200, .090, .054, .100, .027, .147 while on Gleevec.  After Sprycel, I immediately dropped to .002 (the number above are all my Sprycel numbers), but PCRu continues to be elusive.  Damn.

I am pretty much side-effect-free on Sprycel, and until I started Sprycel, didn't realize how lousy I had been feeling on Gleevec.  I grew up in the midwest where you just grit your teeth and get on with life.  Whining is not allowed.  Martyrdom is expected.  My only side effect is gas. . .but maybe that's an age-related thing.  I'm 47, and everything about my body seems to be changing right now.  On the other hand, it really does seem to come on after taking my pill.  I take it at 7:00 p.m. and about 2 hours later is when the gas hits.  Or maybe it's the horizontal position in bed.  After I retire, I'll probably switch to taking my pill in the morning, but being gassy and a middle school teacher just do not mix.  Someone on this board suggested that I just let it rip and pretend it was a student. . .but I don't know that I could do that without turning beet red and giving it all away. 'Nuff said.  I hope that your switch to Sprycel is as easy as mine was.  Very, very mild headache and an immediate drop in PCR.  No headaches since the first couple of weeks.  And the headache that I had was hardly worth mentioning.  That said. . .I think that I have a pretty high pain tolerance. . .used to be a marathoner and triathloner (until I ruined my knees).  My BMBs have been pretty pain-free as well. . .uncomfortable, but tolerable. 

Best of luck to you,

Marnie