79 replies to this topic

[dougbond67]

Thanks for the responses, everyone. Not for cheering me up or anything, but thanks for responding honestly.

[acl]

Doug, you were diagnosed February 2014, and I was diagnosed March 6, 2014, and I have been on Gleevec all the time. My BCR-ABL test performed April 2, 2015 was 0.42%, and I hope to reach CCYR by August 2015, my doctor said that not everybody reaches undetectable, he told me that I will take a TKI for the rest of my life.  Last year I was not very impressed with my Hematologist/Oncologist, I had to request the BMB! Your doctor is not aggressive enough, I think you should find another doctor. 

[scuba]

Doug, you were diagnosed February 2014, and I was diagnosed March 6, 2014, and I have been on Gleevec all the time. My BCR-ABL test performed April 2, 2015 was 0.42%, and I hope to reach CCYR by August 2015, my doctor said that not everybody reaches undetectable, he told me that I will take a TKI for the rest of my life.  Last year I was not very impressed with my Hematologist/Oncologist, I had to request the BMB! Your doctor is not aggressive enough, I think you should find another doctor. 

 

ACG - Did you have a FISH test? What was the level? Until you reach CCyR - you should continue to have FISH tests.

[dougbond67]

"We (that's all of us) are simply not going to die from this disease." Except Doug, the guy with a quack doctor who's let his PCR go from 14% to 62% in less than a year. That guy's screwed.

[snowbear]

Nah, you're gonna be okay once you get back on track.  But, I wouldn't wait to find a new Onc and I wouldn't skip or reduce any more Gleevec doses in the meantime.

[Gail's]

Thanks, Scuba, for your response. I'm definitely noticing I have a more Venus like response and sure hope I don't have to be launched there any time soon! Yesterday I wanted to smack the very rude car wash guy and I'm normally pretty tolerant. Oh well, good days, bad days . . .

[scuba]

"We (that's all of us) are simply not going to die from this disease." Except Doug, the guy with a quack doctor who's let his PCR go from 14% to 62% in less than a year. That guy's screwed.

 

Heck Doug - you're going to be fine, you just got a 'delay of game'. You have a new baseline of 62% - that's where we are starting. You should either switch drugs or increase your Gleevec dose. If Gleevec gives you problems - then switch. Find a new oncologist right away who will switch you (i.e. write the new prescription for the new drug. I'm a fan of Sprycel, but Tasigna may work just as well for you). The key is to get on with it now - don't wait. Because it's important to know now whether you have a response issue or a mutation issue. It is likely just a response issue to Gleevec.

 

What is your FISH level?

[dougbond67]

My oncologist has never given me a FISH test.  I've only had two PCR tests and those are the two I mentioned.  He really has always seemed more concerned about my blood work (neutrophil levels, platelets, etc) and keeping it normalized more than achieving any sort of MMR in me.  I asked him about it one time and he said that was far off in the future.  But when they got the results back from the second PCR test and my BCR-ABL cells had increased to 62%, they started acting at least a little concerned, then (although apparently not concerned enough to test me again in a week ... they just put it off to my next visit).  Actually, they kept asking me if I'd been taking my Gleevec every day, as prescribed, like they thought it might be a compliance issue.  I'm pretty sure from reading all of your responses and the responses to your responses from my some of my friends and family, that I'm going to have to find another oncologist.  I'm on Medicaid, though, so it's not quite as easy as it would be if I had good insurance.  Thanks again to everyone for your responses, and best of luck with your CML.

[snowbear]

Doug ~ did you have a bone marrow biopsy done at diagnosis?

 

My FISH was done from my BMB along with another PCR and many, many more tests.  At 3 months, doc did a PCR but no FISH.  I asked her why at my appointment yesterday and she said FISH works best with dividing cells and once in the peripheral blood, they are no longer dividing.  I wonder if that's why you haven't had a FISH.

[dougbond67]

Yes, Snowbear.  I definitely have the Philadelphia chromosome.  I actually only found out about it because I had what I found out later was a really swollen spleen, and they did a full workup on me, and when the CBC came back, my WBC was something like 285,000, so I almost immediately got like three different calls as soon as I got back from the hospital where they ran the tests, with all of them telling me to get to the ER ASAP, and that I had some form of leukemia (literally ... they just blurted this stuff out to me over the phone and scared the crap out of me).  And then, when I got to the ER, no one there had any idea who I was or what I was doing there.  I had to practically twist their arm (actually I think my sister was rather instrumental in getting their attention ... she's a redhead) in order to get them to find the doctors who had referred me to the ER.  Then they admitted me, gave me hydroxyurea to get my WBC down some, and ended up giving the prelim diagnosis of CML, and then the bone marrow biopsy to confirm.

[scuba]

My oncologist has never given me a FISH test.  I've only had two PCR tests and those are the two I mentioned.  He really has always seemed more concerned about my blood work (neutrophil levels, platelets, etc) and keeping it normalized more than achieving any sort of MMR in me.  I asked him about it one time and he said that was far off in the future.  But when they got the results back from the second PCR test and my BCR-ABL cells had increased to 62%, they started acting at least a little concerned, then (although apparently not concerned enough to test me again in a week ... they just put it off to my next visit).  Actually, they kept asking me if I'd been taking my Gleevec every day, as prescribed, like they thought it might be a compliance issue.  I'm pretty sure from reading all of your responses and the responses to your responses from my some of my friends and family, that I'm going to have to find another oncologist.  I'm on Medicaid, though, so it's not quite as easy as it would be if I had good insurance.  Thanks again to everyone for your responses, and best of luck with your CML.

 

Here's another approach you might consider ... Be your doctor's doctor. You know more than he does at this point.

For the sake of time (and finding another doctor), you could try the following with your current doctor:

 

1. Tell him you want a FISH test taken immediately so you know what percentage of your cells are Leukemic (i.e. have the Philadelphia chromosome (9;22 translocation). That will be a baseline. If your FISH is above zero, and I suspect it is - another PCR test is pointless until you get FISH to zero. No need to ask him why he didn't do a FISH first - just tell him you want one now.

 

2. Tell him you would like to switch drugs - either to Sprycel or Tasigna. Since you lost response to Gleevec and Tasigna is similar to Gleevec in design (just binds better to the ATP pocket), you might switch to Sprycel. The normal dose for Sprycel is 100mg. It is a powerful drug and could very well clobber your CML right out of the gate. That would be great - But it could also clobber your normal counts (neutrophils, platelets, etc.). It clobbered my counts at first and I had to manage it closely.  If you switch to Sprycel, you will need to have weekly CBC blood work done to monitor how you are responding. All CBC does is tell you if you are experiencing blood suppression. If you do - then the usual response is to lower dose or stop/start the drug until your body normalizes. My preferred path was to lower dose, but keep taking the drug.

 

You may need to have a Bone marrow aspiration done to look at the cells more closely. Usually when response is lost, they want to see the marrow.

 

3. Tell him you want weekly CBC work done until your new blood response trend is clear and you are tolerating Spyrcel. The new drugs will likely give you a headache at first - it only lasts a few days and can be minimized by taking the drug at night. Tasigna you may have to take twice a day - another reason I chose Sprycel. At six weeks test FISH again. Only when FISH goes to zero do you start the PCR testing. Fish = zero is approximate to PCR = 1% 

 

Only if you feel comfortable "leading" your oncologist should you do this - otherwise, find another doctor. The approach I describe above is something you would have to discuss with your oncologist and you and he are confident doing. You could ask him if he is familiar with the NCCN guidelines:

 

http://www.nccn.org/...guidelines/cml/

 

He may be offended (i.e. telling him what to do, how to do it and when to do it). But it is your life, not his. Something to think about.

Read the guidelines above - it is very informative on what your doctor should have been doing.

 

Everyone reading this blog would do well to take a look at these guidelines. The researchers in the field (such as Drs. Druker, Cortes, Talpaz, and others) write and modify these guidelines. They are written to help non-specialists treat their patients via lab testing. If an Oncologist is not at least following these guidelines - in my opinion - it amounts to malpractice.

[dougbond67]

I might do that, Scuba, and it's actually my nature TO DO THAT, but I have parents who pretty much constantly admonish me if I ever do anything like that, so I've been trying to be "The Good Patient" and just do what the doctor says and trust in him.  I understand where you're coming from, but my family thinks I'm a know it all who knows more than all of the doctors because I used to work in hospital pharmacies and I read a lot about medical stuff, so they're constantly telling me to stop reading so much about this stuff (my Mom just said it to me today, in fact).  They're just trying to be helpful, because they think it's making me more nervous, but for me, knowing more actually makes me less nervous, but that's just the doctor/patient relationship they were brought up with, so that's what they're comfortable with, ergo I should also be comfortable with it, while in fact, I don't really trust doctors any more than I would trust any other human being who has gone to school to study a gigantic field of ever-expanding knowledge.  My father just had a triple bypass and I kept getting the evil eye from them whenever I would call the saline normal saline, or ask the nurse something that, to my parents, sounded "medically."  And I'm like, "I can't HELP it!"  I worked in bloody hospitals every day for 9 years!  That's the way they talk!  Anyway, I appreciate what you're saying, and it may come to that, but if anything EVER goes wrong with that approach, my parents will NEVER let me live it down and will blame ME for it, for the rest of my life (however brief it may be).  I guess what I'm saying is that it's hard for me to know whether I'm being neurotic about things or whether I should be a more aggressive patient advocate for myself, because I can promise you, my parents think I'm neurotic.  LOL.  Take care and thanks again.

[JPD]

Which brings me to Trey. 

LOL

 

Holmes and Moriarity, the two of you.

 

In other news, I bought D3 Gummies today.  Crap brand, but its something I supose.  I also didnt get rice at Chipotle, trying to lower me carb intake cause I was becoming quite chunky.  Nobody talks about how good cancer is on weight loss.  Sorry for the hijack.  Im gone

[scuba]

I might do that, Scuba, and it's actually my nature TO DO THAT, but I have parents who pretty much constantly admonish me if I ever do anything like that, so I've been trying to be "The Good Patient" and just do what the doctor says and trust in him.  I understand where you're coming from, but my family thinks I'm a know it all who knows more than all of the doctors because I used to work in hospital pharmacies and I read a lot about medical stuff, so they're constantly telling me to stop reading so much about this stuff (my Mom just said it to me today, in fact).  They're just trying to be helpful, because they think it's making me more nervous, but for me, knowing more actually makes me less nervous, but that's just the doctor/patient relationship they were brought up with, so that's what they're comfortable with, ergo I should also be comfortable with it, while in fact, I don't really trust doctors any more than I would trust any other human being who has gone to school to study a gigantic field of ever-expanding knowledge.  My father just had a triple bypass and I kept getting the evil eye from them whenever I would call the saline normal saline, or ask the nurse something that, to my parents, sounded "medically."  And I'm like, "I can't HELP it!"  I worked in bloody hospitals every day for 9 years!  That's the way they talk!  Anyway, I appreciate what you're saying, and it may come to that, but if anything EVER goes wrong with that approach, my parents will NEVER let me live it down and will blame ME for it, for the rest of my life (however brief it may be).  I guess what I'm saying is that it's hard for me to know whether I'm being neurotic about things or whether I should be a more aggressive patient advocate for myself, because I can promise you, my parents think I'm neurotic.  LOL.  Take care and thanks again.

 

Read the NCCN guidelines. Compare your treatment with what you read in the guidelines. Then go from there.

[dougbond67]

I have.  That's why I think my doctor's a douche.

[JPD]

Doug - you are both.  You might be a bit neurotic (though if my PCR jumped like yours, Id be downing Xanex like Tic-Tacs) but you also need to be MUCH better at holding your docs feet to the fire.  Hell, Im gonna ask my doctor for a vitamin D test and I imagine he'll poo-poo it, but fug em - its my life & my money.

[snowbear]

Doug ~ my parents still don't believe that I have a "real" leukemia because I don't need chemo.  I don't discuss it with them any longer.  When they ask, I just say things are going well and doc is happy with my progress.   Maybe you should consider doing the same. 

[dougbond67]

I'm on Xanax, so I WAS downing Xanax like Tic-Tacs when they gave me the results of the test!  I think I'm just going to start calling around, looking for other oncs who accept Medicaid, and keep my appointment with my current one.  I'll talk to him about it, and express my concern that he hasn't been more aggressive and informative in his treatment of my CML, and if he seems like he's going the way I think he should go, which is to determine whether or not it's a lack of response to my current Gleevec dosage, or if it's a mutative issue, then go from there.  I have a suspicious feeling I'll be switched to Sprycel in the next couple of months, which I'm not looking forward to, because to me, the wonderfully tolerable Gleevec actually has a lot of bad side-effects, and it's my understanding that Sprycel and Tasigna are even worse, but it's better than being dead, so yada yada yada.  I've been lifting weights for the past few months to deal with the muscle and skeletal pain, as well as the headaches I get from the Gleevec, and it seems to help, so hopefully that will be the case with any other med he puts me on.  I appreciate you guys chatting with me about all of this.  I know the people who love me mean well, and I know that things could be so much worse, and sometimes are, even for them, but it's always nice to talk to some people who are actually going through basically the same thing you are.  Again, take care and good luck with all of your treatments.  I'm going to try to forget about this for a while!  

[scuba]

I have.  That's why I think my doctor's a douche.

 

Then you know what to do.

[scuba]

Doug - you are both.  You might be a bit neurotic (though if my PCR jumped like yours, Id be downing Xanex like Tic-Tacs) but you also need to be MUCH better at holding your docs feet to the fire.  Hell, Im gonna ask my doctor for a vitamin D test and I imagine he'll poo-poo it, but fug em - its my life & my money.

 

ask Oncologist for = TKI prescriptions.

ask Primary care physician for = take your blood pressure, test for vitamin D.

ask Wife for = tell you what to do, when to do it and where - there is no why.