62 replies to this topic

[CallMeLucky]

On my way to see Dr in morning.  I'll get results of BMB and mutation analysis.  Hoping for the best but I'd be lying if I said I wasn't worried.  Dr has not called with results, which has me a bit concerned,h e usually calls with good news.  I'm figuring it's not anything tragic or they would have called, but makes me wonder if there is something there he wants to discuss face to face.  Probably over thinking it but that is what I do.  I'd be a lot calmer if I didn't have this pain in the area of the spleen.  I stopped the antibiotics about a week ago, I was hoping this would clear up but it hasn't.  Actually bothering me more.  Uncomfortable when I lean forward and while I am laying down, pain is right behind and just under the rib on left side.  Tomorrow can't come fast enough, I need some good news and a break from worrying.

[nathaliece]

Lucky,

You are in my thoughts and prayers.  I hope to check the board and hear that your appointment went well and you can put this chapter behind you.  I do not recall if you have tried Tasigna yet but it has been an improvement for me in terms of side effects.

Hang in there,

Nat

[Susan61]

Hi Lucky:  I have not been following everything going on, but I see that you are getting some test results tomorrow.

I will pray that all goes well.  Believe me I understand what your feeling with the watch and wait.  Have not been on here, as my Gary is going through a rough time himself.  We are waiting to get him in for Carotid Artery Surgery, and I just had him home for a week  with a catheter after having polyps removed from his bladder. He goes on Tues for his Birthday to get his biopsy results.  Prostate was good 10 years remission.

I know how you feel, it just never seems to end.  Hopefully their are no mutations, and its just some changes going on with medications or something not related to your CML.  Just hang in there, as I am sure its just another hurdle for you to get over.

Susan

[TeddyB]

I wish you the best of luck today Lucky.

Hope you geet some good results so you can put your mind at ease.

Teddy

[Pin]

Lucky, the waiting is simply awful. I  just want to let you know I am thinking of you and I really hope you get some good news out of this very soon. xx

[Marnie]

Good luck, Lucky. . .

Crossing my fingers that you will be pleased with your test results. And that your doc can figure out what's going on.

Best,

Marnie

[CallMeLucky]

I want to thank everyone for all the support and good wishes, they seemed to work for me this time and I greatly appreciate it.

Visit with Dr went very well, mostly because it was quite uneventful. 

CBC was perfectly normal!

WBC 5.8

RBC 4.63

HGB 13.9

Platelet 212

ANC 3.59

Bone marrow results were perfectly normal, 1% blasts, everything looked the way it should.

Karotyping was normal

Bone marrow FISH analysis was negative for PH Chromosome.

Mutation analysis, this one was interesting, they were unable to do the mutation analysis because they were unable to detect any BCR/ABL in the specimen.

So after much stress and anxiety, it turns out I am fine.  50mg of Sprycel was not enough to keep me at PCRu, but there is good chance I would have held MMR or even gone back to PCRu over time.  For now I am at 70mg and tolerating ok.  They drew a PCR today and we'll see in a week what it shows.  If it is negative I will stay at 70mg, if it is flat then I can stay at 70mg or go to 80mg.  He said it is up to me because he is fine if I stay MMR, but he knows I want to be negative.  Will have to balance that against side effects, but good chance 70mg will knock it down.  Also factoring in that I am back to being on nothing except for Sprycel, I am done with antibiotics and all supplements for now.  If for some reason it continues to climb then we will try to go back to 100 or switch to another drug.

So when all is said and done, I can't say that going low on the dosage was a full blown "mistake", but it certainly took me for a ride, which was exacerbated by my anxiety issues.  The lesson in this for me is that I need to recognize that I am not in a place in my life where I can take chances, I need to stick to the regimen as best I can.  My advice to anyone else thinking of challenging the guidelines and pushing for a low dose approach to improve QOL, be sure that you understand the risks of what you are doing and be sure that you are the kind of person who can handle when things go sideways on you.  I was convinced that my PCRu was stable and it didn't matter if I lowered my dose it was not going to be a problem.  I was not giving CML the respect it deserves.  So if you are going to do what I did know the risks and make sure you are ok with them so you can avoid the stress and regrets I was feeling.

Thank you again for the support, I greatly appreciate all of you......

P.S. Dr said he is not certain why I am having the abdominal pains, he said it is not spleen.  Could be from Sprycel or may be lingering side effect of antibiotic, just wait and see.  The pain is not terrible and knowing it is not the spleen, I'm able to try and ignore it.

[ChrisC]

Good news indeed, and good advice from one who is — CML-speaking — older, wiser, and well

And oh yeah, let's hope that with the fine test results and a good plan for Sprycel-dosage-when-and-if, calmness overcomes all other pains and bothers very soon.

Enjoy the summer (it is roasting here this week, I like to think that is an excuse to take a significant siesta this afternoon!).

ChrisC

[scuba]

Gary -

It's good that you have peace of mind and you feel you have a plan to follow. Because your counts and bone marrow are excellent, chances are very good that you will climb down from where you bumped up when you went off therapy back to undetected - I'm positive you would do it on just 50mg. It just takes some time to go in reverse after stopping. And, in my case, QOL is very important. It is interesting your doctor echoed what Cortes said about MMR. That MMR is the key to long term survival.

In my case I went from 20mg to 40mg for a couple of days now to see if I can push to PCRU. I have noticed 'significant' heart rhythms. I am told this is a reaction to the new dose and should settle down. I am giving it one more day and then I will drop back to 20mg. because I don't want to mess with the hear. My goal is also to get to PCRU, but my CBC is nowhere as good as yours. Chances are the 40mg. is suppressing my marrow.

I won't have another PCR test until September - by then I will either be at 40mg or have dropped back. Either way, I should be at MMR or better.

As you know, PCRU is arbitrary. We all like seeing all zero's in the test, but we both know it's not zero. It's just at the limit of the method. Which is why MMR is so important to prognosis. Whether one is 0.1% or 0.0001% - doesn't seem to matter in the statistics of this disease while under treatment. Of course there are those whose PCR is probably truly zero (after years and years of therapy and undetectedness), but they don't truly know because there is no test. And there are some who stay progression free with no therapy and yet positive for bcr-abl. Like you - PCRU is where I want to be so I can test stopping - but only if QOL stays high. If not - down goes the dose and MMR is what I'll have to live with. Dr. Cortes feels it could still trend down over time.

Best - Michael

[simone4]

Great news, Lucky.  My PCR history is the same as yours.  A year of negative and in April,

the result showed .04%  My oncologist is re-testing me next monday.  I have followed

your story and hope all goes well for me. I remained to 300mg.Gleevec throughout this

time, so if the retest shows another increase, Sprycel (100mg.) is on my onc's plan.

I know how you feel, I have been waiting for 3months for re-test and been very anxious.

I could have had PCR last month, but insurance will not pay.

Anyway, I hope the Sprycel does not cause any more problems. I can only hope

that G. has not totally lost it's response.  I do not want a new set of side-effects.

Take care and hopefully all the other non-TKI issues abate soon.

Simone

P.S.Sorry I began to add my problems in this reply.  Too self-absorbed right now. And that ain't good.

[LivingWellWithCML]

This is great news for you, and I am so happy to read this!  The agony of these tests and waiting for the results is definitely rough (heck, we've all had to go through this), but I can honestly say that I wasn't surprised by your excellent results. You're MMR+, your marrow is clean, your CBC is normal, and you're managing side effects on a TKI that is a better choice for you.  I know I keep coming back to the abdomen pain you're having and drawing some parallels to my journey ... my symptoms were similar to yours (and at one point, a bit alarming), but ultimately I had to treat the anxiety that I had over those first few months post-dx, and that's what eliminated my symptoms.  Just something to think about -

I'm also a big proponent of exercise as part of our routine when living well with CML.  In another thread, Scuba mentioned how exercise can release feel-good chemicals in the body, and that is completely true.  In fact, when I had the abdomen pain, it completely vanished when I was on a run or a swim, and my mind felt so calm and at peace - pretty amazing really.  Then my mind would start thinking about CML again after the workout, and the symptoms would return.  If your fatigue levels are tolerable on Sprycel, I hope you can get back into an exercise routine again (which you might be already) -- I am confident that will help you as much as it's helping me.  And your healthy bone marrow will definitely be up for the challenge!

And remember, you have a solid and stable MMR (which is likely to improve to PCRU again soon), so your prognosis is excellent!

[CallMeLucky]

Simone - Never apologize for discussing your issues.  Threads are not the exclusive domain of the author, I post to share my experience, get feedback, and hear what is going on with others.  The conversations are sometimes the things that help the most.  So please never feel like you can't share your issues, at least you never have to feel that way with me.

I am following your story very much, I see the parallels and I am hopeful your next test goes back down.  In the event it doesn't I will say that while Sprycel packs a wallop, it is actually a pretty good drug.  From a mental clarity and fatigue aspect I feel like a completely different person than when I was on Gleevec.  The chest pains were a bit much and I panicked, but overall I feel better than I did on Gleevec.  I have thought about that a lot the last few weeks, kind of mentally kicking myself for switching.  But every time I thought about it I went back to, "no, it wasn't a mistake to switch, I felt pretty crappy on Gleevec".  I maintain that my mistake was playing with the dose.  I think dropping to 50 initially was the right call, I was having a hard time adjusting, but then when we were climbing to 60 and 70, I should have dealt with it.  that was when I started getting a little greedy and pushing my luck.  Last time at 70 my side effects were tolerable, but I thought my PCRu was solid and I would be fine at 50 so why deal with the annoyances at 70?  Had I stayed at 70 last time I probably never would have gone through this, maybe I would have, but probably not.  I can't know for certain so I am going to try and take what I have learned and move forward.  I joked with the Dr that this time around I am tolerating 70mg much better than last time, I said I wasn't sure if that was because I was getting more used to it or if I was just more motivated this time around, he laughed.  But it is true you can tolerate a lot when you have to and likewise it is human to want to feel as normal as you can and push the envelope to feel better.  I come away from this experience hopefully a bit wiser, yes QOL of very important but I have to be honest with myself about what I can tolerate and accept the fact that having this affliction comes with some sucky baggage and and no matter how I slice it there is a price to pay.  Balance is the key.

Best of luck on your next test, I hope to see a happy response, but I believe either way you will be fine, even if it means a change.......

[scuba]

Gary - I asked Dr. Cortes about my experience going to 40mg. and he told me to eat more potassium and mg (and get an ECG if the heart is truly an issue for me), but that he also wants me to stay at 40 for now to test 'PCRU'. He wants me to be a candidate for the LSC trial down the road.

So - I guess your approach (and Trey's for that matter) of more drug if you can't tolerate it is better to drive the Leukemia into potential eradication. It just will take a very long time of constant hitting the cells until they die out or they discover a two drug cocktail to hit the Stem cells directly.

I have decided to stick with this new dose (unless myelosuppression sets in again) until September PCR test. If I am still positive PCR then I am going back to 20mg. and live with it at a low steady state (which he told me is just fine) since QoL is very important to me (more than seeing zero's in the bcr-abl test). If I do get to PCRU under 40mg. - then that will be my new dose for a couple of cycles until I test getting off altogether.

[TeddyB]

Great news Lucky

I have to comment on the abdominal pain, ive had that a lot myself since starting Gleevec, but i am actually able to walk it off, the more i walk, the less i feel it.

I always think its my spleen, but it isnt, but its impossible not to think about it, especially after having a big spleen to start with.

Teddy

[Tedsey]

Phew!  So glad to hear the good results.  I have a cm wide mouth sore under my top lip.  It is almost coming out of my mouth. Gross!  My upper lip is so swollen.  I am learning to live with the pain.  I so get the QOL issue.  Abdominal pain must also be a drag.  I hope it goes away.  It makes me wonder though if some of us endure more than we should have to.  But there are so many unknowns.  Makes it all very frustrating.  What is causing what?  What is a side effect and what isn't?  It is funny how we learn to live with pain and/or discomfort just to stay alive.  BTW, there was nothing greedy about what you did with your dosage.  It is taking chances like you did that teach all of us so much.  At this time, you know your drug limits and quite possibly how to get the PCR results you want.  If I can keep a low PCR or PCRU for some time, I may be so bold to try a reduction in dosage.

Just glad to hear things are very good. 

Take care and stay well,

Teds

[Tedsey]

Simone,

Thinking of you and keeping fingers crossed for the best results.  I see Sprycel as the miracle that will help me to see my children to grow up, or buy me enough time until the next better drug or procedure comes along.  And this kind of "Napalm" does not devastate and destroy the whole environment around it, mainly just the leukemic cells.  Despite the mouth sores (which is a rare side effect), 100mg Sprycel has been kind to me.  If you switch, I hope it is kinder to you.

Best wishes always,

Tedsey

[hannibellemo]

Teddy,

I had to laugh because in the first year I could just have left the doc's and he would have just told me he could not detect my spleen. I would feel a twinge in my left upper quadrant and convince myself it was my spleen by the time I got to my car! How perverse this disease can make us!

Pat

[Pin]

This is so great to hear - Just the news I was hoping for Lucky!

I still have my abdominal pain too - Mine comes and goes, feels like agony when it's there, stabbing and shooting, cramping and nervy, and then it'll just disappear again for a while. I've had scans, but there doesn't seem to be anything in it. Very odd though to have such pain and not have something to attribute it to (apart from the TKI).

[CallMeLucky]

Just go my latest PCR results back.  They went "Down" a little bit, but essentially flat compared to last result.  Previous was 0.0239% (IS), this result is 0.0192% (IS).  Basically they are the same but certainly the downward momentum is appreciated.  It is solid MMR, just about 4 log reduction.  Dr said to stay at 70mg since I am tolerating well and we will see how it goes.  He says he does not want to increase dose and have to stop if I have a problem.  Would rather stay at 70mg consistent and see if down trend continues.

It seems like an interesting dilemma where I can't have both QOL and excellent results.  So I have to decide how to balance this with the best response I can get while maintain the best QOL I can.  This Dr is willing to work with me so I guess I will just have to see how it goes.  PCRu is nice but sometimes you have to wonder what the point of surviving is if you can't enjoy living (PCRu is not needed to survive).  I have a family to take care of so I am willing to take a little more hurt for more time, but if I am here for them, then I want to be here for them, not in too much pain or too tired to ever do anything.  Sprycel has been better than Gleevec and 70mg is tolerable, despite some of the issues.  As we have said before there are no free rides.  I suppose I could try a different drug but I know there will be issues with each drug, different perhaps but unlikely there will be a feel great and excellent response.  Right now I have a good response, some would say very good.  If I stayed where I am I could live the rest of my natural life without CML harming me.  For the most part I feel alright.  For now that will have to be good enough.

Thanks for all the well wishes, know that I think about all of you often as well.

[simone4]

Lucky, this is really good news.  Even a plateau would be ideal for me.  That PCRU thingy

doesn't mean much if it causes so much anxiety when we are bumped from it.

Stay the course, my friend.  You're doing well.

Simone