9 replies to this topic

[cryjohn]

Just received my latest PCR results and have some questions.  I was diagnosed May 6, 2010, started 400mg Gleevec May 15, 2010.  At diagnosis FISH was 100%, no PCR done (my Dr has indicated that even though PCR wasn't done at diagnosis he would assume it was 100%, not sure this assumption can be made?).  At 3 months FISH was 11.5%, PCR was 2.17%.  At 6 months FISH was 0%, PCR was .01%.  My 9 month PCR is at .006%.  So my question is, if what the Dr said is true and I started at 100% on PCR, what is my log reduction?  And if it's not true that we can assume I started at 100% PCR, what is my log reduction?

I have tolerated Gleevec quite well with fatigue and running on the lower end of normal for my WBC, RBC, HGB, PLT & ANC.  My question is for those that have switched from Gleevec to Sprycel, have you experience a noticeable change in your fatigue level.  Is there anyone who feels like they are back to there normal activity level?

I understand and have painfully realized that I will have a new normal, but I was hoping my energy level would be a little better.  I have been doing a lot of the things that are talked about on this board; exercise, vitamins and eating healthy.  I went to a "Cancer Related Fatigue" workshop a couple of months ago and the trainer said the thing that would help me the most with fighting fatigue was strength training...UGH, I despise weights, I'm a cardio person!  Well, I have given it a try when I have the energy after 8 hours at work and I have to say I have noticed a difference. But when you start the day tired, that second wind that used to come around doesn't anymore, you just get more tired as the day progresses and working out after work is not very appealing.

I have talked to my Dr at length about the fatigue and he/we have decided to give it a couple more months to see if it improves.  If in 3 months there is no change then we may look at Sprycel.  I am hesitant to change drugs as I have done very well on Gleevec with my response and very few side effects.  However, what if I have the same experience on Sprycel and the fatigue is noticeable different, then it would be worth it to switch.  It's a very hard decision, which is why I'd like to hear from everyone that has made a drug change and how you responded to it.  Also, is anyone that is on Gleevec not feeling the fatigue?  If so, what's your secret...please share!  As a side note, I have tried to convince my Dr that maybe lowering my dose to 300mg might help with my blood counts and the fatigue, he gave me the big NO.  He said he would switch me to Sprycel first before he would lower the Gleevec dose.

I would appreciate your thoughts.

Thanks,

Crystal

[Trey]

Crystal,

After just 10 months you are doing very well indeed, regardless of math about log reductions.  The only way your PCR would have been 100% at diagnosis is if the lab is on International Scale PCR reporting.  From your PCR history I doubt it, but you should ask if that is the case.  I would say you are easily past a 3 log reduction, so Major Molecular Response (MMR) in less than a year.  You should be very happy with that result.

Regarding the fatigue, you are still in the first year.  I found the first year the hardest for side effects.  After about 18 months things got much easier for me.  After 5+ years there are not many people half my age who can keep up with me.  But that is not true for everyone, I realize.  And women seem to have the toughest issues with fatigue, from my observations here.  If you are not already splitting the Gleevec dosage, you might want to do that.  Your RBC is a little low, as with most of us, that is a major cause of fatigue since there is not enough oxygen getting around the body.  It is useful to check iron levels, and maybe a small iron supplement could help if the doc thinks that is warranted.  Also check on thyroid function.  Every little bit can help, but there is no quick fix.

[sferrazza]

Hi Crystal,

I was diagnosed 3/4/10 and  on Gleevec for a year and was having a lot of side effects, fatigue, blistering skin, intestinal problems.  My Onc just put me on Tasigna.  I'm in week three and the side effects suck, major headache, nauseous and fatigue is still there.  I also just went back to work full time so that may be part of the problem. The fatigue is really difficult and working out right now is next to impossible with a full time job and 3 children.   I'm going to take a break from tasigna for 3 days to see if it's the cause of the headaches, if it is not sure of the plan yet.  I was very nervous about starting a new drug too.  I'm still not sure if it's the right decision as I'm not feeling any better.  I keep hearing about the new normal but not sure what that is yet. Good luck

[CallMeLucky]

Hi Crystal - you and I are in a very similar place.  We were dx around same time and have had similar response.  I too have the fatigue and I have considered switching drugs.  But I am cautious and not rushing into anything.  I know the new drugs are good, but they do not come without their issues.  Some people continue to have fatigue and others trade fatigue for maybe some other stuff.  Both of the other drugs have some rarer, but more serious side effects like pleural effusion and QT prolongation.  The timing of taking Tasigna is more of a challenge.  I also look at the fact that Gleevec is going to be generic in a couple of years and the cost is going to be signifcantly less (I would change if I had to without thinking about cost, but if I am making switch electively, then cost is something I consider).  So for now, I am holding off on switching.  As long as Gleevec is working I am going to stick with it.  I do have side effects, but I have been able to continue going to work every day, I exercise, and I spend time with my kids.  I'm not ready to take a chance on things changing for the worse when there may not be enough to gain.  Again if response were the issue or if side effects were so bad I would think differently.  I know I can change later, but you should also know that if you change now and it doesn't work out, you can go back to Gleevec.

With regards to exercise, there is no way I could do it at end of day, just will not happen, too tired.  Instead I go to bed early and force myself to get up earlier and exercise in the morning.  It is hard to drag out of bed, but I force myself.  I find I am usually less tired during the day when I exercise in the morning.  If it is possible you should try to get some time in the morning.  I use the Beach Body workout programs on DVD in my basement.  I honestly think it helps a lot.

[hannibellemo]

Hi, CJ,

Obviously we all react diffferently to these drugs. I felt great on Gleevec but after 8 months had severe liver toxicity. Hated Sprycel for the first 6 months, fatigue was very bad in the beginning but it is much better now 18 months in. I've been MMR since 8 months.

With your excellent response you could try one of the other drugs for awhile and if the side effects are worse then when you were on Gleevec you can always go back to Gleevec. Since you will be living with this for a very long time quality of life is a very important issue that doctors should not ignore.

Good luck!

Pat

[cryjohn]

Thank you all for responding.  Based on your suggestions I think I will wait till the 18 month mark to make my decision about trying Sprycel. 

Trey, yes my RBC has been running around 3.5, just slightly out of range, but I do feel the effects especially when I run...my pace has changed considerably.  I had not even considered splitting the dose to twice a day, but I am going to try it, maybe it will help.

Lucky, I so wish I could do the workout in the morning.  But it's just not going to happen, I already get up at 5:00 am which is an absolute struggle every day (I work from 6:30 am to 3:00 pm).  I am a morning person and know from past experience that if I work out in the morning I have considerable more energy during the day.  But CML and Gleevec have been a game changer for me. So, on days when I can, which is about 3 to 4 days a week I try to get some form of exercise in.  With the warm weather approaching slowing, I am hoping to get back on my bike which helps me physically but most importantly mentally, which I NEED.

Sferrazza & Pat, thank you for sharing your experience with your drug changes.  Even though every one responds differently to these drugs, I think it is so helpful hearing other people's story, it helps to weigh all the options when making decisions.

Wishing everyone good days,

Crystal

[lala]

hi-----when i asked the doc to split my GLEEVEC, he ordered a new script-----of gleevec 100's.....2 twice a day.....after lunch and dinner:  TREY'S IDEA!  i would recommend asking about this----and not split pills until you hear that is ok....i don't know either way.........it seems to have helped my stomach and deep morning fatigue.

[hannibellemo]

You can definitely split Gleevec, it is a scored tablet. Since I tend to be obsessive I would also make sure I swallow any little 'crumbs". You could also get the 100 mg. tablets but I've heard those are more expensive. Any input on costs between the two?

http://www.drugs.com...rugname=Gleevec

Pat

[Trey]

The 100mg tablets are obviously  the best, but splitting the 400mg tablet is fine with a couple cautions.  The split tablet is jagged on one side, and also tastes like sharts, so it requires some care in taking them.  I have done this many times and always take the half-tablet with a wad of chewed up food (not liquid -- food).  First chew up a small amount of food until it is ready to be swallowed, but hold off.  Then pop the half-tablet in and swallow the whole mass at one time.  This helps with a couple issues.  The chewed food prepares the way for the jagged half tablet.  Also, if you ever taste the Gleevec you will always use my patented "Trey's wad-o-food" method ever afterward.

[cryjohn]

Trey said, "The split tablet is jagged on one side, and also tastes like sharts, so it requires some care in taking them."

Hmmm, I'm not sure I want to have this experience , so maybe I'll talk to my Dr about the 100mg tablets.  I mail order the Gleevec so I would think (hopefully) the cost would be the same (could be wishful thinking on my part). 

Trey I'm sure I will always remember your "Trey's wad-o-food" method without ever having tried it !