30 replies to this topic

[hannibellemo]

I'm with Tedsey and Phil,

I so could not understand Penny's feelings that I couldn't think of a thing to post. I could not wait to start G.  But, like Tracy, I waited for the wrath of God to strike after I took the first one. After that I was fine!

Pat

I, too, wonder how Penny is! If you're lurking Penny jump in, we'd love to hear from you!

[JaniePoo2U]

Tedsey....you'd have to know me.  I'm a worrier.  I worry about what I can worry about next.  But after finding this site and talking to some of the people for suport I feel so much better.  I am starting to think like you and Phil now....this pill will save my life and thank God for it.  I don't actually have to pay the full cost for it as I have insurance.  I just feel bad for those who don't have insurance.  Makes me sad.  I did do a little research and the patent runs out on Gleevec in 2015 so maybe it'll go generic!!

Jan

[Marnie]

Hi, Penny. . .I don't have anything to add, except more of the same. . .Don't worry about taking Gleevec.  AS PhilB said, stock up on the t.p, and you'll be fine.  I'll be taking a small trowel, a roll of t.p. and some towelettes on our upcoming wilderness canoe trip.  Not even the Golden Bullet can put the kabosh on fun (though it does make some things a little inconvenient)!!

Marnie

[MACELPatient]

The only thing that scared me was reading the literature that came with Gleevec listing all the possible side-effects.  Kind of daunting to be taking a pill for the first time reading that it could cause death.  I knew in my mind that the possibility of this were/are remote but just the reading of it raises the anxiety level a couple ticks.

[Trey]

Gleevec is called a "biologically   targeted therapy", not a  chemotherapy. The term "chemotherapy" means   literally "chemical  therapy", but the usage of the term is reserved  for  potent agents that  are not targeted. Gleevec is like a bullet,  and  chemo is like a shotgun.  If someone took chemotherapy every day,  they  would not survive very  long, since it kills a lot of good cells  along  with the bad. Also, you will never hear Dr Druker, Dr Shah, Dr  Goldman, Dr Talpaz  or any of  the most notable CML experts call these  CML drugs  "chemotherapy". Dr  Druker's bio makes a point to distinguish  Gleevec  from chemotherapy:

"He began  treating patients in a community  cancer clinic half a day a week—an  experience that cemented his desire  to develop targeted drugs to attack  cancer cells without the harmful  side effects of chemotherapy."

http://www.hhmi.org/...druker_bio.html

(See  para 3)

If  someone says the "broader" use of the term would apply to TKIs, then it  would also apply to aspirin and every drug that is not a naturally  occuring substance.

[pennyarizona]

Hi Everyone,

WOW!!  It really made my day when I read all the recent responses to my original post.    It is so nice to know that people care for you even though you have never really met.  I have been doing well.  I have been taking Gleevec 400mg for a little over 9 months now.  I do battle a couple side effects like the water retention and the muscle cramps but other then that I am hanging in there.  My oncologist has told me that there is no sign of the leukemia in my blood anymore!!    So thats a blessing!!  With my insurance my copay would be $900 a month but thanks to P.S.I. I don't pay a penny.  If it weren't for them I don't know what I would of done.

Jan,

I am glad to hear that you are tolerating the Gleevec.  I wish every day that I didn't have to take the "G" but then I remind myself if I want to keep on living then I must take it.  Like your husband says, you really do need to take it one day at a time.  You will have your good days and you will have your bad days.  Someone once told me you need to have some bad days to make your good days seem even better.  I thought to my self "Yeah if you only knew"  he he he he.  Jan if you or anyone ever wants to talk I am here to listen and help in anyway I can.  I still pop in from time to time.

Again I just want to thank everyone for their continued support!  It's nice to know you are not alone.    Take care and God bless!

Your friend,

Penny

[DancingRain]

Hi Jan & Penny!

As Trey pointed out, we have all been there, and it's okay. That is why we are here. To support you and let you know we understand and want to help you as you travel this new road of CML. I was diagnosed in Oct '07 and I am still here! Thank goodness for Gleevec! It is a miracle drug, and as Trey pointed out, a protein inhibitor (biomarker), to prevent those CML cells from being produced. The only side effect that really bothered me was the bone pain. My oncologist pointed out that Gleevec inhibits the absorption of magnesium, so I started a magnesium supplement, like Slow-Mag (magnesium chloride), twice a day. Once I started that I didn't have the bone pain and cramps anymore. That has been 2 1/2 years! You will find that magnesium comes in all different forms. Don't take magnesium oxide, it will give you diarrhea. I recently switched to magnesium glycinate, which works a little faster, and am liking it well. Have your oncologist check your magnesium level. The other side effects you will notice is puffy face and eyelids. Unfortunately, some of it goes away, and some stays. I have learned to just live with it. What's on the inside is more important than what I look like on the outside. I occasionally get fatigued. It is all part of having leukemia

The most wonderful thing I think about is how fortunate in how I was diagnosed with CML after Gleevec was discovered. There is treatment for me, and for you. And what is more, is that there is more treatment if Gleevec does not do the job. There is amazing research being done for CML. There is even a vaccine in development to help get rid of the rest of the cells the Gleevec leaves behind. We each can anticipate a near normal life span. I am 47 years old and I have a future. And you have a future. We all have a much brighter future because of the development of Gleevec. So hang in there! We are all here to support you .

Angie

[JaniePoo2U]

You know I think it was the pharmacist that more or less called it a "chemo pill".  Shame on her for making me anxious over taking it!!  Trey thanks for all the wonderful information you have sent regarding CML.  It is great to know there are so many people out there that I can now relate with .  Keep in touch.....will always be thankful for you and God Bless you!

JaniePoo2U

[JaniePoo2U]

Penny,

    Glad to hear you are now doing well with the Gleevec and awesome that your blood shows no signs of leukemia in your blood.  What was your white count up to originally before taking Gleevec?  Mine was 78,000.  I haven't gotten results yet from my first wbc.  Today is day 13 of Gleevec for me.  I seem to be tolerating it okay....just had a few bone pains, but that's nothing I can't handle.  When you were talking about insurance and copays.....you mentioned P.S. I....what does that mean?  My insurance approved my prescription for one year and then it has to reapproved again after that.  If I go to a pharmacy I would pay $100 copay and if I use the insurance 90 day mail in program (which I do) I pay $87 for a 90 day supply.  That isn't bad I didn't think.  But it sure won't take long to reach my Lifetime Maximum.  Let's hope Obama's plan will take care of the Lifetime Maximums and pre-existing conditions if nothing else.

    Take care Penny and please keep in touch.  You can email me at my regular email address which is in my profile anytime you like.  I'm here for you and I am thankful everyone has been there for me since finding this website.  I needed to talk to people going through the same thing!

God Bless,

Jan

[JaniePoo2U]

Dancing Rain,

   I too am 47 years old.  When I was 45 I found out I had a lung infection called mycobacterium abscessus which is cousin to TB - non contagious.  It is treatable, but not curable.  I was just getting to the point of learning to live with that when I got the news of the CML.  It was a big blow to me and I'm thinking good Lord I'm falling apart and haven't even hit 50 yet!  I am starting to feel alot better about the CML after talking to everyone on this website.  Gives me hope and encouragement.  Family and friends are a big part of support, but actually talking with someone that is going thru the same thing is even bigger support for me.

   I will definately talk to my oncologist about the magnesium.  My bone pain so far isn't ecruciating or anything, just annoying.  I was thinking the same thing about being diagnosed after the discovery of Gleevec.  It truly is a miracle drug.  The vaccine that is in development sounds very hopeful, huh?

   Thank you so much for your support.  Please stay in touch and may you still be doing great when we next talk.  God Bless!!

JaniePoo2U (Jan)

[JaniePoo2U]

I try real hard not to read those....but seems we are drawn to them.  I told my husband since getting the lung infection I have in 2008 and now this I feel like I'm turning into a hypochondriac!  I read enough of it to know what I should look for in case I do get any of the side affects and then put it away.  I get myself too worked up reading the whole thing.

We are all going to survive this crap, right?  I think if they came as far as finding this "miracle drug" Gleevec....that they can find a cure for this cancer.  We are very fortunate in the scheme of things.

Take care of yourself.....and its been nice getting to know you and know we have each others back as we go through this :-)

Jan