29 replies to this topic

[mcfowler33]

Hello Everyone,

First off, I guess I should introduce myself.  My name is Marcus (Marc most call me) and I am 31 years old.  I was diagnosed with CML on March 9th, 2011. 

Anyway, long story short I spent 4 days in the hospital getting my WBC down to a decent level.  When I went to the emergency room, my WBC was 420,000.  Currently down to 88,000 as of today.  Im still learning lots about this cancer and have read many threads here - I appreciate having a resource of survivors to learn from.  It is comforting to interact with people that actually have or are affected by the same disease. 

So the doc put me on Gleevec starting on the 9th along with Hydroxurea.  My question is:  How long does it take for Gleevec to start working??  The doc said it takes longer than the Hydroxurea, but how long?

Thanks in advance,

Marc

[JoshLee]

Hi Marc,

       My name is Josh. I was diagnosed in Dec of 2010. The hydro will knock your counts down pretty quickly and my guess is that you'll be stopping the hydro once you get back to a normal WBC count. Your counts may bobble around a little bit after you stop the hydro, but if your counts are normal when you stop and your are taking gleevac, they shouldn't change too much. Hope this helps! -Josh

[valiantchong]

I do not think you need to continue to take Hydroxy urea, if you have started Gleevec. The reason is Gleevec will inhibit effective to kill Leukemic clone cells. For Glivec most patient will achieve CHR whithin a month. Hydroxy does not control the poliferation of LC and will be effective for only a short period. Gleevec is targeted Chemo drug compared to Hdroxy which is not targeted and will cause more kill normal as well as LC, but Gleevec is a targeted therapy.

I only take one week of Hydroxy and stop it after prescribe Gleevec.

[scuba]

For the life of me, I don't understand why doc's still prescribe Gleevec first when the other drugs are so much better and have been approved for first line.

In 2011, anyone diagnosed with CML should start straight straight away with Sprycel or Tasigna.  Instead of dealing with CML over a year - they will get to CCyR in 3 months (assuming little or no myelosuppression).

[Trey]

Gleevec started working the first day you took it.  The hydroxyurea is a less discriminating WBC killer.  I would not want to take both drugs for very long.  You could switch to Gleevec only at this point.

[Beanie]

I think the three different kinds of drugs work differently for everyone.  I started Gleevec 400 on March 6, 2010 and within three months I was in complete remission and have been for over a year now.  Sprycel or Tasigna may not have done that for me.

[rickpister]

Marc, your story is similar to mine (dx Sept 2010, wbc 443,000, 6 days in the hospital, and had a similar rx treatment except I was prescribed Sprycel).  Anyway, when I was discharged from the hospital I was on Hydroxyurea for maybe a week or two then it was 100% Sprycel.  Don't know if that helps, but that's what I went through.

By the way, why did your MD prescribe Gleevec?  I am always curious the reasoning why we someone gets one drug versus another.

[mcfowler33]

Thank you all for the replies.  To be honest, I don't know why my doctor chose Gleevec over the others.  I am of course learning about all this and plan on asking why he chose Gleevec at my next visit.  I don't know if others would work better, but I have minimal side effects (tiredness, achy) with the drugs i'm on.  Im guessing that when my WBC count gets down to normal (should be at my next dr visit on monday) I will stop the Hydrea, but don't know that for sure. 

Anyway, thanks for all the replies and thank you all for sharing your experiences.

Marc

[GerryL]

Apologies - just going to hijack this thread with a question.

Trey,

Just following on from Billie's comments and one or two others I have read regarding our immune system - once the TKIs are working how compromised is the immune system. I very rarely get sick (touch wood) even when the CML was undiagnosed. I did get sick with bronchitis just before I went overseas last year, but I think that was due to my original Hematologist telling me I had to give myself Heparin injections to prevent DVT and I was a bit stressed out with the idea. Note: I saw my new Hematologist just before I left and he said my blood work was good and I was in no more danger than anyone else.

So other than stress and fatigue contributing to something, or people being especially prone to coughs and colds is there any evidence that the immune system is compromised once the TKIs are working?

Gerry

[nathaliece]

Michael,

I, too, was prescribed Gleevec and questioned why not Sprycel or Tasigna.  I was told it was because the have 10+ years of data and know more about the long term effects of Gleevec than the newer drugs and that the side effects are less dangerous.  The dangerous side effects that were mention was fluid retention in lungs and heart.

Nat

[hannibellemo]

Nat,

I developed severe liver toxicity on Gleevec in just 8 months - all these drugs can have very serious side effects. It comes down to finding a drug your body can tolerate and one that eliminates, as much as possible, the BCR-ABL.

Michael,

There are still very good reasons to prescribe Gleevec, for one, it has a longer track record then the others. Physicians should also take into account monetary considerations - Gleevec, although very expensve, costs way less than the others at this point and those costs will be reduced even more when generics become available in the not so far out future. And, last but not least, as Beanie pointed out, it still works very well for many, many people.

We're so competitive and I'm not sure that speed is necessarily the be all and end all in this race to save our lives.

Warmest regards,

Pat

[Trey]

Gerry,

CML patients rarely (almost never) have a compromised immune system.  That usually only occurs in the latter stages (Blast Phase) of the disease.  In Chronic Phase the leukemic cells still function as a good immune system.  The exception is when someone with CML suffers from very severe myelosuppression, but even then I would call it a "suppressed" not "compromised" immune system.  We have good examples such as Tedsey (our ambulatory petri dish) of how resilient the immune system is even when blood counts are far below what is normally considered lower limits.

If someone wants to know what a compromised immune system is, it is when a transplant patient has gone through chemo and radiation to wipe out the immune system prior to their transplant.  Otherwise, it is hard to achieve for CML patients..

[Tedsey]

Dear Marc,

I don't know why some knock Gleevec.  It works very well for some.  And some people tolerate it very well.  It is also the least expensive of all the drugs.  Moreover, it will become generic first.  Nevertheless, with such high WBC at diagnosis, I would discuss Sprycel or Tasigna with your onc.  Were you diagnosed in the chronic phase?

I am so sorry to hear about your diagnosis.  It is probably going to be a wild ride.  You are going through the worst part now.  Over time, which you WILL have, things start to settle down.  If you decide to stay on Gleevec, your PCR (the most sensitive of our tests, it is looking at things on a molecular level), and FISH (looking at how many broken chromosomes you have in a cell sample), will show if Gleevec is working.  There is a lot of waiting with this disease.  But waiting, although frustrating, is time living.  But please do not accept from anyone that you are lucky.  No one is lucky to get cancer or a chronic illness of any kind.  People will say stupid things to you.  However, the good news is that it may be very possible to live a normal life-span with CML, thus to die with CML instead of dying from it.  This board is great.  Having a serious illness is lonely.  Here you will find people who understand.  Feel free to gripe.  We have all been where you are.

Take care.  I wish you quick healing and as little sadness and anxiety as possible,

Tedsey       

[Susan61]

Everyone is different in how they can handle the different TKI's.  Gleevec was the only choice for me when I started in Oct. of 2000, and I know people who went on Sprycel and were drowning in their own fluids from the Pulmonary Edema.  I also know people who could not tolerate the Tasigna.  I agree that Gleevec was first choice in the treatment of CML, and its long history of what it has done for so many is probably why some doctors still use it as first choice.

I am so bad with tolerating medications.  I usually get so sick from everything.  I defiinitely was surprised at how I have handled the Gleevec all these years more than others.

I just went through a horrible experience taking Coumadin.  Apparently it was making me deathly sick to the point that they thought it was Cardiac Related or Gallbladder problem.  The problem was that as it built up in my system it was making me very sick.  Now my body has adjusted to it, and I am still on the same medication with no side effects.  I have a huge blood clot in my leg, and they thought they were going to switch me to gving myself shots of Lovenox everyday instead of the Coumadin Pill.

I just wish everyone well on whatever TKI works for them to get them to a CCR.

[mcfowler33]

Tedsey,

I was diagnosed in the Chronic phase despite having many symptoms associated with the accelerated phase such as night sweats, tiredness, HUGE spleen, high WBC, etc.  Dr. said I had 2-3% blast cells - I guess accelerated is over 10%? 

Gleevec seems to be okay as far as side effects go - I really don't have very many and I don't know how many are more associated with Hydroxurea chemo.   Just a little tired, achy, and an occasional muscle cramp are my current side effects.  I just don't know if Gleevec is working properly because we are still trying to knock down my WBC count with the Hydrea.  Hoping my WBC will be down to almost normal tomorrow - maybe get off Hydroxurea or at least a lower dose.

As far as living with CML, I have sort of come to grips with it.  Not saying there won't be times that I can't believe I got so "lucky", but i've made up my mind to fight and beat this.  I have good and bad days of course - Im only 31 and never had any kind of health problems so it's quite a shock.  All I can do is trust in my Saviour and keep fighting - luckily I have God and the best wife in the world that will be fighting this with me.

Marc

[hannibellemo]

Marc,

Just to repeat you don't need to take hydroxyurea while you are taking Gleevec. G will reduce your counts nicely, too. Some people have nasty side effects from hydroxyurea but I didn't notice anything different.

I was also dxed with a heavy cancer load but in chronic stage, 350,000 WB, 1.25 million platelets and markedly enlarged spleen, blasts < 2% . I was on hxdrox. (and i don't mean the cookies ) for a couple of weeks. My counts dropped very quickly, faster than my onc was anticipating, I think. Went on G and off hydrox. after 2 weeks. Developed liver toxicity after 8 mos. on G and was switched to Sprycel 18 months ago, MMR for 9 months now.

Hope you post often, this is a great group to get involved with.

Pat

[CallMeLucky]

"For the life of me, I don't  understand why doc's still prescribe Gleevec first when the other drugs  are so much better and have been approved for first line.

In  2011, anyone diagnosed with CML should start straight straight away  with Sprycel or Tasigna.  Instead of dealing with CML over a year - they  will get to CCyR in 3 months (assuming little or no myelosuppression)."

Dr's have over 10 years of history with Gleevec, they understand how it works and they usually know what to expect from it.  The newer drugs are more powerful and work for many, but they do not come without their risks.  While more rare, dasatinib and nilotinib have more severe side effects if you are unfortunate enough to get them.  Not everyone gets to CCyR in 3 months on the newer drugs, some get there in three months on Gleevec, and someone like me got there in 6 months (and it looks like I am MMR at 9 months, but I'm still waiting on some more information from my doctor's office before I post the results) - so did that 3 months make a difference?  I don't know, maybe, maybe not.  We even have someone on this board who started on either Tasigna or Sprycel, couldn't tolerate it, then went to the other, couldn't tolerate it, and now is on Gleevec.

Gleevec will also be generic in a couple of years which will drastically impact the cost of the drug.  For someone who is looking at being on this drug for a lifetime, if I can do well on a drug that costs $300-$400 per month instead of a drug that costs $7000 - $9000 per month, that helps me sleep at night when I worry about losing my job and not being able to afford my meds.  I can afford Gleevec when it goes generic if I have to, I can't afford Gleevec today or the other drugs.

All three drugs have their benefits and since we are in the age of individualized medicine, it makes sense that we all respond differently.  So we are lucky to have choices.  To me, it makes sense not to start on the most powerful drug, but I am by nature a conservative person.  Different people and their doctors approach it differently.

[lolo]

Hi and welcome! I'm new here too, but not new to CML

Gleevec is the bomb!!!

I lived ten wonderfully active, beautiful years with no problems at all on Gleevec. Your counts will be back to normal in no time!! Watch!! You'll see.

I had to take hydroxy/ hydrea for several months before Gleevec was available at that time. It was great at getting the white count down. But I do agree with the other posts, it seems that you should be taking one not the other until the WBC is under control??

hmmm....

[mcfowler33]

Hi and Welcome Lolo!

Thanks for the good story of Gleevec.  My doc said we should try Gleevec first and move to the others if it doesn't work for me.  So for so good though - no major side effects and I feel good.  I just got off the Hyrdoxurea because my white counts are way down - almost normal!  Just hoping for good news at the next CBC that the Gleevec is working properly.

He had me on both just to knock down the WBC faster I guess. 

Anyway, welcome to the forum!

Marc

[Susan61]

Hi Lolo:  Hope you continue to join in with our group.  I am sure you can share a lot of your experiencs with all the oldies and newbies on here.

So many questions come up, and the more that can help with answers the better.  WELCOME!!!   Glad your doing so well, and may you continue on that path for many many more years.

Susan