19 replies to this topic

[Stevo]

Hi folks,

I'm a 47 year old male, and was diagnosed with CML nine months ago.  After spending a few minutes reading this forum today, I realize that I probably don't know as much about what exactly is going on with my CML as I should... pretty much been trusting my onc to take care of me... and so far, pretty much so good.

Onc has been vigilent in bloodtests, ekg and chest xrays, with only positive news.  Therefore, I have really only paid attention to bloodtests, in which the lab shows the acceptable range (easy to read)... and those look good... onc seems very happy with results... like a few episodes of him being on the verge of estatic.  Blood looked closed to normal in 45 days.  Results from BCR-ABL about 3 weeks ago was "still improving, looks good."  Now I realize that I should insist on knowing the numbers... I'll get those this week from him.

Mostly, I've done my best to ignore my CML, let the doc handle the details.  Maybe not the best route.

Few side effects, but nothing that has directly slowed me down.  BUT...

About a month ago I started noticing pain in my upper left abdomen.  Not always... but it's there.  Onc had a CT scan performed... everything looks normal on the scan.  Hence, my taking the time to visit this forum... as I wonder if "is this pain is a side effect from Sprycel?"

I drink too much alcohol.  Too often.

So I'm wondering if the Sprycel, the alcohol, and/or the combination of the two is causing this pain, possible in my liver.

I've taken efforts to drink less, and I know that seems to be the simple and obvious answer... and I plan to continue to do so... easier said than done though.

No real question here, just posting my situation to see what feedback I might get.

Ever have the feeling, "just shoot me now"?  I guess I have it too often, and wash it away it with a beer or six.

[Marnie]

Hey, Stevo. . .welcome to the club!  Sorry you had to join.

I'm also 47, been on Sprycel Since January, after about a year and a half on Gleevec.  Be sure that your doc does a complete metabolic panel (CMP).  This will monitor the liver issue.  Some folks do just fine with alcohol and some do not.  When I was first diagnosed, I stayed off alcohol for a few months, but now I"m back to drinking too much wine or too many margaritas.  I'm lucky. . .my CMP comes back fine every time.  You should eventually be having a CMP every 3 months. . .I can't remember how often I had it when first diagnosed.

Sprycel has been great for me.  Pretty much no side effects, except for the fatigue, which has become  a part of life, unfortunately.  Gleevec was much worse.

It's a good idea to be sure that you get involved in understanding and monitoring your cml.  My previous onc wasn't really good about understanding or explaining the numbers, so I mostly did my own research and made my own decisions.  I have switched to a much better doc, but I still stay highly involved in understanding (or trying to understand) what's going on.  Very important to do. 

Good luck and don't let the cml change your life.  I continue to kayak, snowboard, motorcycle, hike, camp, and work full time (wish I could be retired to just play 100% of the time).  CML is a pain, but after awhile, you  figure out how to just get on with life, unless you have complications. . .and some folks do, of course.

Stay in touch,

Marnie

[simone4]

Stevo, welcome to our board.  I regret you have to be here.  About the

pain in your abdomen and your questioning your liver, your oncologist

would be keeping an eye on your liver through a CMP(Comprehensive

Metabolic Panel).  I have one done every 6 weeks when I have my other

routine blood work.  I'm sure your doctor would notice any elevated liver

enzymes.  I am not on Srycel, but Gleevec. I cannot answer if this is a

side effect or not.

I am touched by your honesty. Yes, "just shoot me"goes through

my mind (and I assume others, as well).  I have no answers about the

issue with alcohol, but there are a few other dealing with the same.

It is a tough blow to find out you have CML and maybe talking to

a professional might help.

Take care and come here when you need us. O.K.?

Simone

[Stevo]

Thanks for the kind words Marnie and Simone.

Yes, he does CMP often... and I have copies of (most) of them.  And I'm sure he's monitoring my liver, although I'm not sure which numbers those are.

I didn't mean to sound so down or depressed, and in general, I don't display that part of my life... but I'm still dealing with the fact that I am mortal and this body of mine won't last forever... and it might not even last as long as I had thought it would.  I didn't even know that I didn't realize this until... well, until some man I'd never even met told me one afternoon.  Move on with life and pretend this situation doesn't exist... but the reality is that I am past mid-life.  Wow... I was supposed to lighten up with this post.

Thanks again.  Time to get off my behind and get back to life.  Got too many reasons not to be moping.

[Susan61]

Hi Stevo:  Glad you joined our group.  We talk about the serious side of CML, but we have plenty of laughs on here also.  We have a great bunch of supportive people from all over the place.  I am on Gleevec, and not Sprycel.  Thats what is good about the discussion boards.  There is always someone to share with you who is on the same TKI to help you along with any questions.

       I will be Living With CML for 13 years this Dec. 12th, so stay positive in your beating this disease.  I am at PCRU since 2003.  I hope this encourages you.  If you feel you are drinking too much too often, and if its due to stress over CML then you can relax and try to cut back.  Your going in the right direction with your test results, and doing good.

Susan

[acb]

I am like you in that I tend to try to ignore the CML as much as possible. I do get copies of my blood work, FISH, and PCR tests, but I am not nearly as knowledgeable as most people on here.

I am on Sprycel as well (since diagnosis in July 2010), and I too have had left side pain above the abdomen off and on since diagnosis, which I believe is my spleen. I had it for several days back in May (after 10 months) and went to the urgent care for a CBC because I was sure that my CML was back with a vengeance. My numbers were fine and I asked about it on here. Trey said that it is somewhat common to have ongoing spleen pain, especially if your blood counts were high and your spleen was enlarged at diagnosis. At diagnosis, I was at around 149k for WBC and my spleen was quite enlarged. After a few days, my pain went away but it has returned off and on since then.

If you want to monitor your liver numbers, look for AST and ALT on your panel to see if they are in the normal range. I *believe* your liver is on the right side at the bottom of your ribs, but I am embarrassed to admit I have never had Anatomy! So, I could be wrong about that.

If I were you, I would at least get copies of your FISH and PCR tests and ask questions on here if you are unsure how to read them. Everyone on here is so incredibly helpful!

[Stevo]

Thanks for your thoughtful words, Susan.  And congrats on your success as well.

Hate to admit that I don't even know what PCRU means, but I'm happy that your there, and look forward to joining you!

There's a lot about my life that I really don't like, and thought I was on track to changing those when CML popped into my life and seemed to have put a big roadblock to that plan... med insurance, specifically.... no need to bother you with those details... and I'm even ashamed of the way that I'm handling it all so far... hope to change tracks soon enough.  Evidently, God didn't much care for my plan... that's what I'm thinking.

I'll stay in touch... thanks again.

[Stevo]

ACB... thanks for responding.

Yes, on the spleen thing... my spleen was enlarged, that's was the sympton that I noticed that caused me to go the doctor 9 months ago.  My WBC was at 192k.

I never even had pain there initially... but where I am having the pain is basically in the same place where it was enlarged so it very well could be as you described... wow, 8-9 months later, you would think, well, nevermind...

I'll take a look at those numbers you mentioned as well as post some of my other ones that I don't even know this moment to get some more feedback.

Thanks for you help... by the way, how are your numbers these days?  Are you a proud PRCU?  And if I'm out of line asking, please disregard.

I haven't had the opportunity to communicate with other Sprycel users.  It's not the preferred drug of those at my local pub.

[LivingWellWithCML]

Steve,

Check the ALT and AST numbers on your CMP test results - those are the primary numbers that will potentially elevate with liver toxicity (although there are other indicators as well).

I hear you on the mortality thing - I am 42 and felt invincible before this diagnosis.  However, I run almost every single day and I'm having my share of beer as well -- especially on College Football Saturdays!

Consider CML to be your official wake-up call to enjoy every day that life brings you......

[Taylor]

Hi Stevo,

I tried to reply to this earlier but for some reason the site wasn't on my phone.

I don't know that you would be feeling liver pains on your left side.  Your liver is upper right abdomen, but the spleen can be felt on the upper left when it is enlarged.  Once we begin treatment, our spleen goes down, and by 9 months I'm sure it's back to its original size.  However, I occassionally still feels weird pangs from that area--and I never had pain from my spleen originally.  Sometimes the spleen can give off "phantom pains" long after diagnosis.  I sometimes wonder if it's also the ribs slowly getting back into place (if the spleen pushed them out at all).

Taylor

[Susan61]

Hi Stevo:  First of all let me say that nothing you want to talk about is a bother to anyone here.  PCRU is the result when they do a blood test called a PCR short for Polymerase Chain Reaction, and thats why we say PCR.  This blood test is usually how they test you once you have reached a Cytogenetic Remission, and you will learn everything as you go.  I am not going to try to overwhelm you with every detail.  I still have trouble with a lot of the different test terms.

PCRU means that you are undetected, and they see no more cancer cells in your test.  It is a much more sensitive test that shows many  more of your cells, then with the other testing.  You will see people saying they reached 0  on their PCR Testing.  You cannot get any better than that.

Do not even concern yourself  with PCR testing and results. It will all fall into place eventually.  Some people take much longer to get to that point, and you will see some who have done well for many years without reaching a 0 result.  We have a lot of great people who can explain things much better than me.

Just ask anything, and never feel that its a stupid question or be leary about asking anything.  You will see how many people jump right in to help you understand.

If God did not care for your plan, then he will guide you to the new one he wants you to take.  Nobody is perfect, and we all have had some type of issues.

Medical Insurance could be a whole new subject.  I am always dealing with some sort of glitch in the way things are done with insurance.

Just dealing with this economy is driving people crazy, never mind having CML.  Again, So Glad you joined us.

Susan

[acb]

No problem on asking about PCRU ... Sprycel has been very good to me. My numbers dropped quickly with it, and I haven't had issues with low counts like some do on Sprycel. I did have to take a one week break early on due to low platelets but haven't had any trouble since then.

I reached PCRU last October (was diagnosed in July 2010), and have been fortunate enough to stay that way. The only unfortunate part for me is that I have had to switch oncologists 3 times due to insurance issues (doctors moving in and out of network for insurance). However, it has allowed me to have PCR tests by 3 different labs, all of which have come back PCRU.

The only other issue I have with Sprycel is the cost!!! I have a huge deductible, so I don't look forward to the New Year like most people. It just means I have to fork out a ton of money until I max out for the year. I also have some fatigue (and that occasional spleen pain), but it is all a small price to pay in my opinion.

If you find a pub where Sprycel is the drug of choice, let me know!! I'm in!

[Stevo]

UPDATE!!

After reading some on this forum, I wanted to know what my BCR-ABL numbers were and are, so I called my doc this morning... and I had actually forgotten that he had recently submitted my blood for PCR a few weeks ago...

He says Good News (well, his nurse did anyway), and says complete remission.  So yes, I said, I want you to fax me those results.

It says:  Results:  Positive Major breakpoint (0.007%)

So what does that mean?

Also, shows my previous Major Combined tests as:  Jan 6  "Positive",  April 18 "0.012%"

I don't know what these numbers mean... but I suspect they're good.  Yea?

[Marnie]

Hey, Stevo. . .very good results, indeed.  We are all shooting for 0.000.  Remission generally isn't a term used with CML, since the leukemic cells are still present, but undetectible when you reach 0.000 (PCRU. . .or PCR undetectible).

Your trend from 0.012 to 0.007 is moving in the right direction for sure.  Many people never reach PCRU and have been living with cml for quite some time at low PCR numbers.  I was diagnosed in June 2009, and have finally gotten down to .002 with some ups and downs.

As everyone always seem to say, "Keep up the good work," though I guess pretty much what that means is " keep taking your pills and cross your fingers."

Congrats on the good results!

Marnie

[Susan61]

Hi:  Your doing real good.  Congratulations!!  Your numbers are going in the right direction.  Do not try to figure out every little number or compare yourself to others.  Your making good progress, and thats all that matters.

Susan

[hannibellemo]

Marnie,

Your reply made me remember an earlier discussion we had on what percentage reach PCRU. I've attached the link - pay attention to Trey's comment, I think it is his second post to the discussion and 4th from the top. http://community.lls...age/60276#60276

Trey, those percentages were for Gleevec, do you know if Sprycel and Tasigna have been around long enough to have some feel for length of time and percentages of those who take them to reach CyCR, MMR and CMR?

I liked your point that PCRU is everyone's "goal" - I reached MMR after 8 mos. on Sprycel and have maintained it for a year with my PCR results continuing a downward trend. I'm very happy with this and if I never reach PCRU I will be fine with that. BUT, it appears that being PCRU opens a lot of doors towards other options for us, i.e. stopping the TKIs to see what happens, trials with other drugs in addition to the TKIs and who knows what else the future will bring.

Pat

[CallMeLucky]

Actually Pat - a number of the things you mentioned are being looked at for not just people who are undetectable, but also at the low end of MMR.

PCRu as many of us know is a tricky thing.  We like the sound of it, but the reality is that the test is not sensitive enough to be definitive.  You could be undetectable because you are 4 log reduction, then test at another lab with better sensitivity and not be undetectable.  Did it change your long term prognosis?  No, not at all - but it probably did ruin your day if it happened.  PCRu is good for the emotional side of CML - so far from what I have learned it doesn't mean much in terms of long term survival compared to a solid MMR.

Of course, I think we would all prefer to be PCRu if we could be....

[Marnie]

Pat, your point is a good one. . .especially for folks new to the forum.  PCRU is a goal. . .but for some people it's a goal that may take a very, very long time. . .or it may only be an elusive thing that floats out in the future somewhere.  I'm annoyed to be a turtle, but I've realized that 0.000 isn't that much different from 0.002 (even though it sure seems like a different thing most days).

It's the TREND that matters.

Marnie

[Pin]

Pat, thank you for posting that link - I hadn't seen that discussion before now. I think it will really help me as I need to be more patient about results. Thanks!