79 replies to this topic

[Mr.Tee]

Removed

[JPD]

well, my last test went from .50 (12mos) to .78 (15mos) so I'm hoping it was just a blip or margin of error.  I've riled myself up into a panic today over it.  I f*cking LOATHE waiting for these tests.  I keep telling myself that Im not gonna die from this disease, but I sometimes feel like Im fooling myself*

 

 

 

*as Ive said before, Im not even a "glass half empty" type guy - Im more like "the glass fell on the floor, shattered, and I stepped on it and now have glass shards in my foot... and the glass was covered with bubonic plague"

[Marnie]

Not to make light of your situation, but JPD, you have a way with words.  That was hilarious.

[August1]

Hi, 

Yes I had plateaus around the 1 year, 18 month, and 2 year marks. I guess you could say I've been on a pretty steady and gradual plateau since starting. Despite this I was always assured by my oncologist that everyone's biology is different. So if you're trending in the right direction you are doing well. I think having plateaus is pretty common based on what I've read from others here. 

[dougbond67]

Hello.  I was diagnosed with CML back in February of 2014 and have been on Gleevec for the better part of that time (and still am).  It was lowering my neutrophils to unacceptable levels so my hemo-onc would take me off of it for periods of time ranging from a few weeks to over a month during that time.  Anyway, they just came back with the results of my most recent BCR-ABL test and it went from around 14% in June of 2014 to about 62% as of a week ago (April).  Needless to say, I was a bid broadsided by this, as I seemed to be responding, according my doctor, extremely well to the Gleevec (as in it worked very well in lowering my WBC count).  So much so that he ended up lowering my dosage from 400mg/day to 300mg/day as of this past December.  He's going to test me again on June 30th, and he said they would keep me on my current dosage during that time, because they didn't like to make changes in therapy based on just one test, but I was wondering if anyone else had experienced this type of result.  It seems to me that a progression from 14% to 62% within a period of less than a year is VERY BAD and would require a more aggressive approach.  Maybe it's just me, but I find my doctor's approach less than aggressive and somewhat nonchalant/lazy.  Thank you for any responses, ahead of time.  By the way, I'm a male, 5'11", 160lbs, turning 48 in June.

[Antilogical]

Wow, doug.  This sounds less like a plateau, and more like a failure to treat the disease properly - or at least consistently.  I don't think Gleevec has had a fighting chance to work on your CML, given all the breaks in treatment.  I'd be real tempted to find myself another doctor. 

[dougbond67]

I wasn't posting this as a plateau.  I guess I posted it in the wrong section.  This just seemed like it might be a section where others had had experiences with something like this.  I've been on the Gleevec for a lot more time than I've been off of it, but I just think that the progression seems extremely fast, which is obviously worrying to me.  I've definitely considered finding another doctor, but people around me keep saying that his approach is "typical" of what all of the cancer patients they know seem to experience with their doctors. For instance, he's never even put forth the idea of going into remission and coming off of the TKI's at some point.  It was just "you'll have to take these for the rest of your life" right from the start, and since I'd already read quite a bit about CML online, I found that rather disappointing, and it made me suspect of him from the beginning.  I'm aware of that, though, so I guess I've been trying to be fair about it, but to be honest, this is MY LIFE in the balance.  I don't really give a crap whether this is typical or whatever.  I want to do what gives me the best chance of getting RID of this stuff, or at the very least putting into remission for as long as possible.  As I said, they all seemed so positive about the way I was reacting to the Gleevec that this broadsided me.  They kept asking me if I'd been taking my Gleevec as prescribed (I have, always), and I told them, yes, except for when you guys took me off of it.  I took that to mean that it was somewhat unexpected to them, as well, which is even MORE worrisome!  Anyway, thank you for your response.  If anyone else has experienced this type of progression and then an improvement due to being on Gleevec longer or a chance to Sprycel or another TKI, I would appreciate hearing about it.  Thanks.

[Trey]

Doug,

Your Onc is not aggressive enough.  That PCR bounce is way too high, even for one test.  The PCR should be repeated right away.  You obviously are not responding well to lower dose Gleevec.  You either need to take at least 400mg daily or make a drug change.  Maybe an Onc change, too.

[gerry]

Hi Doug,

It is early days for most doctors to become used to some people being able to stop their TKI.  My doc was anti anything when I first started seeing him. Over time he has become used to ideas like lower dosage and stopping.  

 

As Trey commented above you need to be either on 400mg or another TKI.

[Gail's]

Listen to all the folks above, Doug. Get another test possibly even ask for a BMB in case some mutation has arisen. I think that test is how they would determine a mutation. Trey's the expert on what to do, so listen up!

[alexamay09]

JPD you are hilarious. I was diagnosed at the end of August 2012.  I've never had the response that many in the group have but have been under 1 per cent for a year.  I was recently changed to gleevec after 2 years on 140mg sprycel gave me effusion and potential negative effects to my heart. I will be interested to see how the change will affect my numbers.  I think if we can stay under 1 per cent we are ok even if having plateaus.

 

alex

[snowbear]

Doug ~ I'm with the others.  You need a new Onc !!  That increase is scary and this is your life at stake.  My Onc has told me dosage will not be lowered (or stopped) until I've maintained PCRu consistently for 2 years.  Side effects can be managed in other ways.  

[scuba]

Hello.  I was diagnosed with CML back in February of 2014 and have been on Gleevec for the better part of that time (and still am).  It was lowering my neutrophils to unacceptable levels so my hemo-onc would take me off of it for periods of time ranging from a few weeks to over a month during that time.  Anyway, they just came back with the results of my most recent BCR-ABL test and it went from around 14% in June of 2014 to about 62% as of a week ago (April).  Needless to say, I was a bid broadsided by this, as I seemed to be responding, according my doctor, extremely well to the Gleevec (as in it worked very well in lowering my WBC count).  So much so that he ended up lowering my dosage from 400mg/day to 300mg/day as of this past December.  He's going to test me again on June 30th, and he said they would keep me on my current dosage during that time, because they didn't like to make changes in therapy based on just one test, but I was wondering if anyone else had experienced this type of result.  It seems to me that a progression from 14% to 62% within a period of less than a year is VERY BAD and would require a more aggressive approach.  Maybe it's just me, but I find my doctor's approach less than aggressive and somewhat nonchalant/lazy.  Thank you for any responses, ahead of time.  By the way, I'm a male, 5'11", 160lbs, turning 48 in June.

 

Your oncologist is incompetent. Replace him immediately. You need to switch drugs now - you are not responding to Gleevec sufficiently. Tasigna or Sprycel would be logical choices. With Sprycel you have the potential to be on reduced dose and still get a solid PCR trend moving in the correct direction. But you need to do this NOW. Waiting until July is stupid. 

 

You also need a FISH test since you have lost response. Chances are you have CML cells now visible under the microscope. PCR above 1% indicates as much. Until you reach CCyR you are not out of the woods. A good Oncologist would still be looking at your Peripheral blood for blasts and signs of progression as well as continuing FISH tests and switch you. I repeat - replace your doctor, he's not fit to treat CML patients. You need to fire him.

[scuba]

Doug's situation with an incompetent Oncologist is very scary. It is really sad that these so-called professionals get to practice medicine, earn huge fees and be so wrong. Doug's oncologist isn't even following the NCCN guidelines.

 

It's one thing for us, as patients, to gamble with our treatment (I, for one...), but another thing for doctors to be gambling with their patients lives. One advantage of this forum is that patients get to read about the experience with each other's doctors. It's clear to me that a pattern of practice has emerged between incompetence, strict NCCN guideline adherence (at least they read what they should do), and doctors who have sufficient experience to be able to customize treatment to the individual.

 

We must expose the incompetent doctors. They are hurting patients. The doctors who are, 'strict adherents' are probably fine for the vast majority of patients (and where most of the statistics come from), but can be frustrating when side effects and other minor fluctuations are to be considered. The scientist doctors who have research and vast clinical experience treating patients are too few in number to be readily available. Perhaps this is where telemedicine in the age of the Internet comes in or this forum is a form of telemedicine. It's great to read how Dr. Talpaz, Druker, Cortes and the few others approach CML treatment. I suspect, to them, CML is boring in comparison with the challenges they now pursue.

[Gail's]

Scuba, do you think in general oncs tend to think more lightly about cancers like CML that have a treatment that works and doesn't kill the patient? In comparison to the folks with more aggressive, hard to treat cancers? I'm probably paranoid, but almost feel that my doc thinks my CML and side effects are not a big deal. I feel like a bother to her, like she's busy with patients who are dying before their eyes. Of course, this disease is a HUGE thing to me, but can see how it would be ho-hum to docs in comparison to other difficult cancers.

[snowbear]

Gail ~ my ONC has told me herself that CML is "no big deal".  She's not only a Hema/Onc, but a bone marrow transplants specialist with a major university hospital with over 30 years of practice.  She treated CML before Gleevec and the other TKI's were even an option.  The side effects we suffer don't even come close to what traditional chemo and BMT patients go through, but I think she (and other docs) forget that this is something we must live with every day and try to maintain our normal day-to-day routines which for many of us include working full-time and caring for families which isn't so easy.  If we were hospitalized and receiving traditional chemo, all we would have to worry about is taking a shower and brushing our teeth.  Even our toast and tea would be made for us.    

[scuba]

Scuba, do you think in general oncs tend to think more lightly about cancers like CML that have a treatment that works and doesn't kill the patient? In comparison to the folks with more aggressive, hard to treat cancers? I'm probably paranoid, but almost feel that my doc thinks my CML and side effects are not a big deal. I feel like a bother to her, like she's busy with patients who are dying before their eyes. Of course, this disease is a HUGE thing to me, but can see how it would be ho-hum to docs in comparison to other difficult cancers.

 

In the scheme of things - you are correct. CML is no big deal. It really isn't. We (that's all of us) are simply not going to die from this disease. But - we do have to do our part and track it properly. We need doctors who aren't stupid and incompetent to treat us so that patients know what to do and when to do it.

 

CML kills through the "Blast" crisis. We know from clinical experience that when Blasts are increasing and FISH is greater than zero, that progression of the disease is absolutely possible and can kill. But we now have treatments that even at this stage can be targeted although more difficult. Blast crisis is just not heard of anymore. When we all get below 1.0% PCR and zero FISH, the prognosis for CML survival is huge. This is something all of us should truly understand. That's why when I see people fretting over the third decimal place in their PCR report I just smile to myself. It's meaningless. Even the second decimal place doesn't mean much. Only if PCR is climbing above the first decimal place should your radar go up and more frequent monitoring so that a decision can be made on dose or drug.

 

Which leaves side effects. Doctors who prescribe these medications do not take them themselves. So they don't "feel" what we have felt. And in comparison to the folks on the other forums, we do have it easy. At least most of us do. So side effects management is important. Aloe Vera, time of day when to take our drugs, with or without food - what kind of food - all of this can help. 

 

My thinking has been to treat CML to get below the thresholds as aggressively as possible first - and then treat the side effects to get to an optimum treatment plan that is custom for each of us once progression possibility is reduced to near zero. Some of us will need full dose, some not, some will need to switch, some not and some can augment their treatment in order to accelerate their plans with nutritional support - especially if they were deficient and know what they are doing. Oncologists don't know these things. They are not super human, they don't read outside their specialty (if that) and they don't like collaborating with their patient. They like to tell their patient what to do even if its wrong. 

 

It is vital that anyone newly diagnosed tracks their progress closely for the first year and verify that they are responding well. Only when CCyR goes to zero are they, more or less, out of the woods. Then periodic monitoring will verify continued response. Once achieved, then experimenting with dose to get rid of side effects is a good option. The scientific literature is starting to show this. Too bad the Oncology community doesn't read up on this. Once response is steady and somewhat predictable at a low dose, then thinking about PCRU (or very deep MMR) becomes viable. Then we should think about stopping the drugs to test durability. For 40% of these patients - stopping leads to success. This is HUGE. 

 

So - in summary - CML is not a killer anymore. If someone dies while having CML (that's why the statistic is not 100%) - they died of something else related to age, or some other disease. CML is very very treatable. I simply do not fear CML whatsoever. I just don't. It's not a mystery anymore - it's mechanism is very well understood at the DNA level. 

 

And most people on this forum are more expert at CML (drugs, treatment, side effects) in many ways than the doctors who are paid to treat us. Many of the doctors we see do not read, consume and think about CML all of their waking moment as many of us have done. They have other diseases to treat - so in some sense, we can cut them some slack (not the stupid Onc's though - they have to go).

 

Which brings me to Trey. 

[sunshineC]

Gail/Scuba/+

That is EXACTLY the way I felt with the first onc I had.  Everyone was really nice for the first appointment and that was about it.  Because my numbers were so good so fast (and don't get me wrong, I was very grateful for that), it was like he didn't want to hear about ANY of my problems with side effects.  I would "literally" get a shrug of his shoulders when I was trying to explain how I couldn't get out of bed because of the headaches, stomach pain, fatigue, etc.  After almost two months of that I actually had a nurse in his office YELL at me and tell me "There's no reason why you shouldn't be back to work, your bloodwork is fine!"  I chose to go to Johns Hopkins and got an appointment with one of the highest regarded researchers for CML there.  Before he met me, he answered an email within 24 hrs!  The first visit he agreed that we will figure out something because Quality of LIfe IS important.  I am now seen by one of his associates, who I KNOW meets with him constantly about patients and are working together WITH me to find my balance.  So, in summary, personally I do believe there are oncs like that who are not particularly interested in CML and/or their CML patients.  And to me, finding someone who I feel actually CARES, makes all the difference in the world to me.

Mr. Tee -

Because of severe stomach pain I have with Sprycel, my onc and I were experimenting with stomach medicine.  I went from 0.7 to 1.4 in 3 months time.  I chose to go off the stomach medicine myself because my numbers had never gone up, always down, and it scared me.  My onc had me going for BCR-ABL bloodtests every 6 weeks until I showed a marked decrease.  I don't know anything about why you had to be taken off Gleevec, or if you should be given a new drug, but in my opinion, you definitely need a new onc!

Good luck everyone!

[Gail's]

Thanks sunshine. I think you get what I'm trying to say. And Scuba, you're also right that in terms of response to the miracle of TKIs, CML is really not the deadly disease it once was. I am continuing with imatinib despite difficult side effects because I want to give them a chance to settle down while the med gives me a great response. So when someone complains about side effects, we need a kind, hearing ear as well as ideas for feeling better. I think it's a Mars vs Venus thing, if you're old enough to remember that book. I believe many but not all men feel the need to "stiff upper lip" thru bad stuff and problem solve for others who struggle. I believe many, but not all, women respond with validation and sympathy to those who struggle. Obviously, humans need both perspectives. I know every single thing you said was true. Guess it wasn't as much facts but understanding I needed. Not all issues are solved with facts. And yes, I give myself reality checks all the time but today just feeling overwhelmed. I want to see hour journey with CML and stopping treatment. I've benefitted from your expertise on vitamin d etc and have adopted much of what you've proposed. Just keep posting because most of the time I really benefit. Just sounded a lot like my onc today.

[scuba]

Thanks sunshine. I think you get what I'm trying to say. And Scuba, you're also right that in terms of response to the miracle of TKIs, CML is really not the deadly disease it once was. I am continuing with imatinib despite difficult side effects because I want to give them a chance to settle down while the med gives me a great response. So when someone complains about side effects, we need a kind, hearing ear as well as ideas for feeling better. I think it's a Mars vs Venus thing, if you're old enough to remember that book. I believe many but not all men feel the need to "stiff upper lip" thru bad stuff and problem solve for others who struggle. I believe many, but not all, women respond with validation and sympathy to those who struggle. Obviously, humans need both perspectives. I know every single thing you said was true. Guess it wasn't as much facts but understanding I needed. Not all issues are solved with facts. And yes, I give myself reality checks all the time but today just feeling overwhelmed. I want to see hour journey with CML and stopping treatment. I've benefitted from your expertise on vitamin d etc and have adopted much of what you've proposed. Just keep posting because most of the time I really benefit. Just sounded a lot like my onc today.

 

You are certainly correct about the "mars - venus" thing. When my wife gets upset with me, I just tell her I'm from Mars. She doesn't like that response. She replies, "I know first hand you have not been to Mars, but if you don't do what I want you to - I am going to send you there, and you won't need a rocket". I reply, "yes, Ma'am". and that's how we live happily ever after.

 

I hope I don't sound like your Onc. I agree that CML is no big deal - but side effects are very much a big deal. I believe you can get a handle on it in a way that will lead to both great response and feeling great again. It may mean switching drugs - just keep that in mind.