17 replies to this topic

[SteveFried]

Hello All,

I've been following this great board since my DX in Oct. 2010 with CML and finally decided to say hello. My dr. feels I've probably had CML since 2007 by looking back at various blood tests (wbc) I've had in the past. I've been on 400mg Gleevec since then & been dealing with side effects same as others. On my last blood test a few weeks ago the dr. informed me that his test came back showing FULL molecular remission which is a GREAT thing, although I'm not feeling ANY better than before my dx and am sure it's due to the G side effects. It seems to me a "CATCH 22" as the CML caused my EXTREME fatigue and now I STILL have it probably due to the G.

I've always been a VERY positive person that NEVER gives up, I've worked in auto racing for over 20 yrs., work out heavily to keep in shape (swim 3,000 yds day/3 days week, on the "machines" 3 days also). So much for my "Fit For Life" work ethic! If you google my name as Steve Fried Racing you'll see I already was DEAD in 1999 at the Indy 500, & the reason helmets in pit lane were started as we didn't wear them then. so I guess all the years since then have been gravy to me!

Many think that racing is glamorous and I've been blessed to make my living pursuing my passion!  What isn't seen is the loooong hrs and strenuous times both physically & mentally. The norm at the track is 12-16hr days (&nites) with some 24-48 hr "all nighters" when things go wrong!  I'v been TRYING to work since 2007 but thought I was just turning into a lazy bum as been so run down & my "Super Man" I used to have was fading away.  After 2 grueling weeks on the road in June this past year during a heat wave of 95+ degree days I finally was taken to the hospital with heat exhaustion!  I NEVER had a problem dealing with heat in the past. After returning home & getting some rest thinking that was all I needed I then noticed my weight drop 10 lbs. in 2 weeks from my target weight. That started me to the dr., who sent me to my current specialist with the great CML news to come.

I've ALWAYS worked my entire life, overcoming my severe brain injury and many other injury's from my accident in 1999. So now realizing I'm not going to be able to is quite the blow!  My wife & I are checking into SSD but from what I hear it doesn't look promising. I KNOW that I'm VERY lucky as my medical plan from my wife's job is covering the G with a small co-pay, at least so far.

It has been a big help to come here & see others experiancing the same problems as me.  The one thing my dr. told me is a SLIGHT light at the end of the tunnel, he said he's heard of people stopping the dreaded G after 2-3 yrs in remission. and in 50% the CML dosn't return.  Has anyone heard of this before?

THANKS ALL for sharing your stories!

[LoriM58]

Just wanted to say hi Steve.   I don't have any info to offer as I have just started my CML journey.  (dx Feb 4th and just started G on March 3rd)   One thing I can relate to is going from having an "S" on my chest to feeling like a bum.   I have missed 2 days of work since Feb 4th.   (more "sick days than I have taken in the past 2 yrs)

Wishing you the best of luck, and I look forward to reading the posts of the other members here.

Lori

[Susan61]

Hi Steve:  I can only share what I know.  There is so much going on about stopping the Gleevec after so many years of being in a molecular remission.  I have had Leukemia since 1998, and been on Gleevec since Oct. of 2000.  Been PCRU for 7 years, but I just go with the side effects daily. Sometimes they are good, and sometimes bad.  Until they say they have a definite cure for CML, I do not want to play around with what has been a blessing to me.

    I do not know much about racing, but you have been blessed to get to where you are as fast as you have. Don't rush into anything.

   As for SSD.  It can be rough, and you could be denied.  Your history of the brain injury, and anything else along with the CML should be documented when you apply.  They take everything that is wrong with you into consideration.  So many  people like myself got denied at first, and then I did an appeal with my lawyer to get approved.  Also my Oncologist got in touch with them personally to tell them that he felt I could not handle my job the way I was feeling,

instead of just filling out the form they requested from him.

   Only you know how you truly feel and what you can handle.  I wish you well, and you came to the right place to get answers and support.

   Hope we continue to hear from you.

[SteveFried]

Hi Lori,

Thanks for the reply!  The only thing I can assure you is a few months down the road mentally I was in a better place especially reading the posts and knowing we are NOT alone!

Steve

[SteveFried]

Thank you Susan, I already have in my head being turned down my SSD the first time as it seems to be the MO, only HOPE it will be approved eventually.  It's been a tough couple years.  Hearing from a long time CML'er is reassuring, THANKS for the support!

Steve

[valiantchong]

Hi,

The Stop TKIs or Gleevec treatment presently only apply to about 4% of the patients with close monitoring, as some of them may relapse after stop taking. I do not think it is feasible yet for most of the population... too bad... it is only experiment basis not for most of patients... 

[CallMeLucky]

Hi Steve,

Welcome and sorry you had to come here.  The 50% number is not accurate.  There are trials looking into what happens if someone reaches a complete molecular remission (undetecable by PCR) for a few years and then stops the drug.  Most people relapse, but of the ones who do relapse, I think they all went back into remission once the drug was reintroduced.  At this time the current prognosis is that most of us will have a good response with the TKI drugs and be able to live with the disease for the rest of our lives, which should not be cut short because of the disease.  The catch phrase I have heard a couple of times is "you will most likely die with CML, but not from CML".

Since it seems you may have had CML going on for a number of years undiagnosed, it may be that your body is pretty badly beat up.  So if the CML was making you fatigued, then the Gleevec isn't going to reverse that anytime soon.  Gleevec is also known to cause fatigue, although some say that over time it lessens and I have found exercise does help.

Cancer is expensive and CML is no exception, however one other light at the end of the tunnel if we cannot stop taking TKI drugs is that the patent on Gleevec is up in a couple of years and there will be a generic version on the market that will be considerably less money (think range of $300-$400 per month instead of $3000 - $4000 per month).  Also if you are responding well, your tests become further apart meaning you need less tests each year.

So try to focus on the poisitive as long as there is nothing saying otherwise and try to hang in there as best you can with the rest of us.

I wish you well....

[SunNsand]

Steve -

  I wanted to say Hi. You have come to the best place for information, compassion and sometimes some really funny stuff! Stopping Gleevec after PCRU and the word "remission' is  controversial but it is a hope we all have. I also have problems with heat and cold. This winter I stocked up on turtlenecks, which I would have never wore before. It's been two yrs. since my CML dx. There was a time I thought I had my new life figured out but that was a fantasy ha.

Hope you get to continue to race, I live very close to Indy so you now have a new fan.

SunNsand

[caron]

Hi there,

I would like to share a personal story.  I have never posted on this board before but have been a "lurker" for many years now.  I was diagnosed six years ago this coming May.  I have been on Gleevec 400mg.  Back in June of 2010 I started "forgetting" to take my Gleevec.  It was just occasionally, but over time I stopped taking the Gleevec.  I had no good reasons.  I own a business and work 10 hour days 4-6 days a week, only to come home and work some more.  My prescription had run out and I never renewed it.  The more I forgot to take the medicine, the more it just went to the back of my mind and I ended up being off of it until four weeks ago.  I had even missed an appointment with my Onc. back in August and again in October.  I finally made an appointment and fessed up to my Onc. what had happened.  I was embarrassed and I knew that I had no good reasons for stopping the medicine.  He immediately put me back on the 400mg of Gleevec and last week I was given the following news:

After several tests, they told me that there were traces of the CML gene in my system.  I was told by my Onc. partner that I would have to be on the medicine for the rest of my life (which I already knew) and how important it was to not skip (which I also knew) and that each time I go off of the medicine I have the chance of not only returning traces of the CML, but my body could also become immune to the Gleevec.  I was also told that my survival was about 3 years with no Gleevec.

So for anyone thinking about taking a "Gleevec Holiday" or occasionally skipping your meds, I would highly suggest not doing so.  I was brought back into reality a week ago and realize the importance of taking my Gleevec every day.

Many blessings to you.

Caron

btw, I had been in full molecular remission since six months after diagnosis on the Gleevec.

[donkatking]

You are hanging round a great bunch of people here.  They have had wonderful insite into what is happening to me by telling their stories and providing me with information or where to look up information about CML.  I thank all of them for the support.  I hope things with you will be better and you'll have better days ahead.  Best of luck to you.

[GerryL]

Hi Caron,

My specialist told me a story about one of his other patients, who he at first thought was becoming resistant to Gleevec. It turned out the patient was tired of his muscle and joint pain and stopped taking his Gleevec. The CML then started to make an appearance in his bloodwork.

Gerry

[valiantchong]

Why there are no stories from the stop TKI members in this column, where are the 4% ? or there are non of them ?  Wish we could hear from them too...

[CallMeLucky]

There were less than 100 people in that trial.  Not exactly a large sample.  To show that so few out of such a small group were able to stop, to me, says that I should not count on stopping TKI anytime soon.  Drucker has shown in subsequent studies that Gleevec does not kill the leukemic stem cells.  Unless the stem cells are killed you are not cured.  The stem cells may be sleeping/hiding and who knows when they will awaken, maybe months, maybe years.  In some the immune system may learn to go after PH+ cells, but again, unless they get the stem cell the chance of relapse is there.  And for that matter, even if the stem cells are eradicated, there are no guarantees they will not develop again.  Something happened in our bodies to allow CML to happen and that could happen again.  I am thinking it is a one in a million event so if they can eradicate all the cells including stem cell, then you are no more at risk than rest of population.  So until there is therapy that will kill the stem cell I don't think there is a cure.  Some may be able to come off drug for a long time without relapse and there is a lot to be said for living off TKI for a while.  But anyone who is even considering stopping drug, needs to do it under guidance of a competent oncologist who will monitor you very closely.

[Trey]

Caron,

That is a good example that others here have been asking for, but maybe they cannot decipher your timeline.  You were diagnosed in 2005, had a very fast response to Gleevec, and became PCRU in 6 months.  You were PCRU for a long time (nearly 5 years) then stopped taking Gleevec in the same way as any "stop Gleevec" scenario.  You relapsed in about 6 months.  That is useful real life information to us.  Thanks for posting your experiences.

[scuba]

Hi Steve - I enjoyed reading your post especially about the work you do.

I am Bondurant certified.  I love the track and have only positive memories and a few scares.  This Saturday, in fact, my wife and I will be part of a rally drive with only pictures to guide us.  They are always fun.

As far as CML - too much living to do to let it get you down even when it does get you down.  Keep Racin' !!

[Susan61]

Hi Caron:  Glad you got back on track, and that you were able to resume your previous protocol to get you where you are now.  I think that was great that you let everyone know what happened to you.  I am sure you answered a lot of people's questions who are new to Gleevec or any of the other TKI's.

Now that you shared with us, please do not be a stranger.  Come on the boards and get to know everyone.

     Blessings to you Also.

[SteveFried]

THANKS Michael & EVERYONE for your replies!

It would be a shame to get this DX WITHOUT ALL your insights & info.

  If anyone would like to read a GREAT story that was written about my accident drop me an e-mail.   steve_fried@ameritech.net        . I've been told it's inspirational and you'll see how blessed I am to STILL be around!