30 replies to this topic

[Susan61]

Hi Steve-o:  I just saw your post.  I must have missed it somehow, but glad you finally joined us after reading all the posts on here.  Yes, Trey is amazing.  We all turn to him for answers.  He studies everything on CML so he can help himself as well as others to learn what its all about.

You can see everyone has a different story, and a different form of treatment.  Gleevec was the first TKI to get things started.  I was diagnosed in 1998, but Gleevec was not here until 2000.  I did the clinical trial for Gleevec in New York back then.  Its over 12 years now, and I am still on my Gleevec 400mg a day.

I had a lot of side effects in the beginning, but nothing I could not handle.  My biggest thing was that I like to take all my medications in the morning, then I am done for the day.  I have to eat a good breakfast before taking my Gleevec to avoid Nausea.  Some people prefer to take theirs after their dinner at night when they are eating a bigger meal.  You will work out your own schedule as to how you feel.  Other than that I have had fatigue, but it got better after I was on the Gleevec for awhile.  I also had to start taking medication for the heartburn that Gleevec can cause for some people.

     Just post anything you want to us after you start taking your Gleevec.  Someone is always available to help you out to solve anything your feeling.

    We have a great bunch of people on here.  I did not read all the other messages, and I might be repeating some things.  Just wanted to let you know how I have handled everything.

    I think one of the biggest things I could share is to not get discouraged, even if you get a lot of side effects.  I always stop to think about the fact that I can cope with it because its doing its job to get rid of the cancer cells. 

   I AM SO GLAD TO BE WHERE I AM NOW AND NOT WHERE I USED TO BE!!!

   My husband is my great supporter and he keeps me positive all the time.  He is also in the grocery business since he was 16 years old.

Take Care

Susan

[Steve-o]

Now Billie, be nice.  Like I tell my wife, I still have an enlarged spleen, so you can't make me laugh so hard.  But if you truly want to harrass me, I'm ready.  Eight days of Gleevec attacking cancer cells, so I'm up for the challenge.   Besides that, this Philadelphia Freedom took me knee high to a man!

Steve-o

[sschneck]

I was just diagnosed myself on June 9th.  Dr. wants to put me on Sprycel.  Why did yours put you on Gleevec?  Just curious.  I am going for a second opinion July 8th because the current Doc is not thrilling me...I love your Philidelphia Freedom theme song idea!

Here is Elton singing it live on Youtube.

http://youtu.be/IhyMvQ_N7Zc

[Happycat]

Hey, Steve-o,

Sorry to see you here, but nice to have you... except for that Philadelphia Freedom thing that's going to run through my head for days now!

Traci

[Steve-o]

Sschneck:

My onc doc has 8 other CML patients currently on Gleevec.  When we discussed it, she indicated she likes to start with it because it has a longer track record in treating CML.  Not sure of any other factors. While my spleen was enlarged and WBC count high, I didn't have any other symptoms and am in pretty good health.  In fact, my company has health incentive money and I qualified for all of it - about a thousand bucks. Burned through that in the last few weeks....

I would definitely ask your doc about why he/she chose that drug.  But on the other hand wouldn't worry because they all appear to work for what we have.  Sounds like everyone has a unique experience with each drug and side effects, responses, etc.

I've only had mild stuff so far, but nothing too different than what I feel after 30 years selling groceries.

Good luck with the second opinion.  I think that's a great idea in light of your initial feelings with the first doc.

Steve-o

[Susan61]

Hi:  Alway good to get a second opinion, and if something does not feel right or you feel no connection then its time to move on to someone you know will spendthe time to satisfy all your questions and needs.  Gleevec was the first TKI developed, and then the Sprycel, Tasigna came later.  I think I mentioned that the Gleevec was my only choice back in 2000.  It has worked for me, and I am still on it.  A lot of people said they could not handle the side effects of the Gleevec, and switched to one of the other TKI's.  I have a lot of side effects, but so many of them have gotten better as the years went by.

    I would definitely see a doctor who has a lot of experience with treating CML for many years, and is up to date on all the TKI's.

   When my doctor retired, the practice just moved me onto a new doctor who took over.  I was not impressed, and he did not listen to me.  He was just out of medical school a few years, and thought he knew it all.  I switched to another doctor.  I have only seen her a few times, and if anything does not seem right then I will switch again.  She does seem to know a lot, and she agreed with the treatment that my first Oncologist had with me.

  You have to make the choices that feel right to you.  Good Luck

[Steve-o]

Today's blood work showed WBC of 155,000 (down from 274,000 last week).  And I can't feel me spleen no more.  14 days of Gleevec and Elton doing their thing.

The whipporwill of freedom zapped me

Right between the eyes.

Steve-o

[sschneck]

Steve,

That's good news!  actually got into the 2nd doc early who wants to try Tasigna.  Works better with the other meds I am taking.  Take care!

[CallMeLucky]

Sounds like good progress so far.  Congratulations, I hope you cruise on down to normal counts quickly.