19 replies to this topic

[Tedsey]

Diagnosed end of Nov. 2009.  Having problems with low ANC which goes up and down from .5 to 1.3.  Have had to be off Gleevec 2 times since dx.  Now back on G (1 week).  My ANC is now 1.1.  So it appears G is wiping out my neutrophils again, but WBC went up a little.  I was told I was not diagnosed early, but I am still in chronic stage.  I am seeing onc's PA this Wed. for another CBC and possible Neupogen injection.

I had to have a CBC 8 months before the CML diagnosis for insurance reasons.  It came back normal.  I had a baby a few months before that.  Since I had a c-section with complications (they punctured my bladdler in the process), I had to have blood drawn every day in the hospital.  White blood counts were only slightly elevated (WBC 11) after surgery and then went back to normal (saw records).

I am so baffled how the CML progressed so quickly in me.  The onc said that no one was looking for it.  I also had no symptoms until my belly button popped one day (spleen obviously).  I ran to doc as a result, but I was also due for my yearly physical.  That is what started this CML quest.

I had been running to doctors for 3 years (and 3 years of normal CBCs) to find out why I has such trouble with weightloss (a symptom of CML, but a million other things as well).  I am so beside myself that no one caught this early!!!!!  I had seen a gastro doc, an OB/GYN and a PCP.  

Just got off phone with onc nurse.  It appears onc is too busy to see me.  I went from it was absolutely necessary to come in every 2 weeks, to I am so busy now, you will have to come in when I can see you (once a month), or whenever I say (at the drop of a hat, which doesn't work well for me since my kids are not old enough to babysit themselves; I need time to get a sitter).  I get my blood drawn every other day now.

I am told that the CML is not under good control in me.  I am also told that my low WBC/ANC is a sign of a late diagnosis and disease progression because the disease was out of control for so long.  It appears they are saying that this is likely a sign of that progression.  However, there are no further PCRs ordered, but have a BMB for next mo.  I am so confused as to what is going on here.

I thought that there are only 3 phases in CML.  You are either in chronic, accelerated, or blast.  I am also told this is a slow progressing disease.  So, how come it appears to be taking off in me?  Guess there is no answer for that.  The only thing I get again is that it was in me for so long and not noticed and that is why I am so "bad off".  Also makes me think I should have saved my money instead of running to doctors.

My last PCR after 2.5 months showed poor results.  However, there were no blasts detected.  I am beginning to feel that I am being lied to, especially since I am told that the disease is still in very poor control after 4 months.  I feel helpless.

My ANC today is 1.1  The onc wants shots because it is looking like G is going to wipe out my white cells again.  I know that there are people here that live with counts as low as .7 going out and living their lives.  I am told to avoid people and not go anywhere if possible.  I missed Passover and Easter as a result (but enjoyed the time with my husband and kids nonetheless).  Not trying to get a boo hoo.

My husband and kids just got over a terrible cold with fever when I was around .5.  I didn't get sick.  Was I lucky?

The onc I see has only been practicing 3 years and is at a "state of the art" cancer center.  I am looking for a new onc, but it is a difficult process.

Are these immediate immunity problems a sign that the disease is progressing?  This does not compute because the onc said the only way to know is a BMB, but yet the nurse tells me this.  Anyone have this low WBC & ANC problem from the beginning and now doing well?  I am afraid to even venture out into the backyard.  I was warned NOT to go play in the dirt with my kids under any cost.  I feel like I have no freedom anymore and my life is being controlled by the onc and her staff.  Is this life with CML?  If it is, it bites.  I read from Trey that it does not matter how long it takes (but obviously the faster the better) to reach PCRu.  The best thing is that one achieves it.  My onc and staff have me believing that I will not get there and my case is somewhat hopeless.  Am I getting the correct info?  I am so confused.  I am also frightened, but trying not to let it get the best of me because I physically feel so fine.  I am holding on to that!

[Trey]

You are confused because you are getting confusing information from your Onc and nurse.  If the Onc or nurse are saying you are doing "poorly", tell them to define "poorly", and ask to explain how they think they know.  Are they Karnak the Magnificent, or do they use test results?  The low WBCs do not signify advanced disease, just that the good WBC stem cells have been shut down and are having trouble getting started up again.  True indicators of "poor" response are BMB, FISH, & PCR.  Look to your FISH and PCR history for true indicators of response.  If your WBC were high, then the Gleevec would not be working.  It is low, so Gleevec is working, but the good stem cells are not waking up quickly.  Women seem to have more issues with that than men -- just my observation, and not very scientific.

Your ANC of 1.1 is plenty to fight off disease.  I don't know why you are being kept indoors.  You did not get sick when your kids were sick -- common sense would say you must have a functioning immune system.  Just don't lick the bottom of your kids' shoes.

You seem to have an Onc and nurse who are trying to convince you that you are in bad shape.  Ask them to describe with specific test results why they believe that.  Otherwise dump them, which I think you are trying to do.

[Sloater]

I totally agree with Trey on this one.  Misery loves company...  You need a baseline and measure your progress based on where you started.  This will help you see your progress.  If your current Onc and Nurse are too negative for you, maybe it is time for a second opinion. 

Good luck,

Sloater

[rct]

Tedsey wrote:

Diagnosed end of Nov. 2009.  Having problems with low ANC which goes up and down from .5 to 1.3.  Have had to be off Gleevec 2 times since dx.  Now back on G (1 week).  My ANC is now 1.1.  So it appears G is wiping out my neutrophils again, but WBC went up a little.  I was told I was not diagnosed early, but I am still in chronic stage.  I am seeing onc's PA this Wed. for another CBC and possible Neupogen injection.

Sounds reasonable, but I would think it would be Neulasta.  Neupogen not as long lasting, but less expensive.

Tedsey wrote:

I am so baffled how the CML progressed so quickly in me.  The onc said that no one was looking for it.  I also had no symptoms until my belly button popped one day (spleen obviously).  I ran to doc as a result, but I was also due for my yearly physical.  That is what started this CML quest.

I had been running to doctors for 3 years (and 3 years of normal CBCs) to find out why I has such trouble with weightloss (a symptom of CML, but a million other things as well).  I am so beside myself that no one caught this early!!!!!  I had seen a gastro doc, an OB/GYN and a PCP. 

We are pretty sure my CML'r was walking around with CML for at least 5 years prior to diagnosis.  It isn't at all unusual.

Tedsey wrote:

Just got off phone with onc nurse.  It appears onc is too busy to see me.  I went from it was absolutely necessary to come in every 2 weeks, to I am so busy now, you will have to come in when I can see you (once a month), or whenever I say (at the drop of a hat, which doesn't work well for me since my kids are not old enough to babysit themselves; I need time to get a sitter).  I get my blood drawn every other day now.

Unfortunately, this is where the average CML'r falls in the world of hema/oncs.  They got a buncha really unhappy campers right down the hall, so take this pill and buck up.  It isn't comfortable, but that's how it is.

Tedsey wrote:

I am told that the CML is not under good control in me.  I am also told that my low WBC/ANC is a sign of a late diagnosis and disease progression because the disease was out of control for so long.  It appears they are saying that this is likely a sign of that progression.  However, there are no further PCRs ordered, but have a BMB for next mo.  I am so confused as to what is going on here.

I am not lecturing you, please realize that, but if your oncologist is using your blood counts to chart your CML work, you sincerely need to find a new onc today.  If we want to talk about it the way doctors do it, his job is to Conquer Cancer.  You can't Conquer Cancer by reading CBCs, you do that by reading PCRs, which he or she isn't ordering.  It's odd to say the least.

Tedsey wrote:

I thought that there are only 3 phases in CML.  You are either in chronic, accelerated, or blast.  I am also told this is a slow progressing disease.  So, how come it appears to be taking off in me?  Guess there is no answer for that.  The only thing I get again is that it was in me for so long and not noticed and that is why I am so "bad off".  Also makes me think I should have saved my money instead of running to doctors.

You haven't provided anything here that indicates any progression from any stage to any other.  Your counts mean nothing.  My CML'r, at last measurement, had an ANC of about 600 and was PCRu.  Do you see this here?  If my CML'r was being treated by your onc we'd be in some city center getting transfused for the big transplant, that's how bad it would be, all while being PCRu.  Something is not right here.

Tedsey wrote:

My last PCR after 2.5 months showed poor results.  However, there were no blasts detected.  I am beginning to feel that I am being lied to, especially since I am told that the disease is still in very poor control after 4 months.  I feel helpless.

My ANC today is 1.1  The onc wants shots because it is looking like G is going to wipe out my white cells again.  I know that there are people here that live with counts as low as .7 going out and living their lives.  I am told to avoid people and not go anywhere if possible.  I missed Passover and Easter as a result (but enjoyed the time with my husband and kids nonetheless).  Not trying to get a boo hoo.

None of this is sense making.  At as low as 400 my CML'r was told to "...try to avoid little kids and sick people...live your life...but keep an eye on things...".  We would thoroughly enjoy an ANC of 700!

Tedsey wrote:

My husband and kids just got over a terrible cold with fever when I was around .5.  I didn't get sick.  Was I lucky?

Yes.  And there is no other explanation.  Our onc has patients with excellent CBCs that get sick every other month, and has patients like My CML'r with basement CBCs that hardly get sick at all.  My CML'r is just getting over the dregs of the first cold in two years of basement counts.  Two Years.  Almost all of that time, PCRu.

Tedsey wrote:

The onc I see has only been practicing 3 years and is at a "state of the art" cancer center.  I am looking for a new onc, but it is a difficult process.

It is, it really is, we can feel your pain.  But trust us on this one, it is nothing like the pain of spending literally years at an oncs office only to walk away in disgust because they are not treating you.  You may be headed in that direction and you may not be.  You need to get your PCR stuff up here, because CBC isn't how it is done.  If it is how they do it, you need to find someone else as quickly as you can.

Tedsey wrote:

Are these immediate immunity problems a sign that the disease is progressing?

I am not an oncologist, but here goes: No, No, a Thousand Times No.  "disease is progressing" has only one measurement, and you either aren't putting it up here or you don't have it.  Again:  My CML'r has basement counts, was/is PCRu, and goes out into the world daily.

Tedsey wrote:

This does not compute because the onc said the only way to know is a BMB, but yet the nurse tells me this.  Anyone have this low WBC & ANC problem from the beginning and now doing well?  I am afraid to even venture out into the backyard.  I was warned NOT to go play in the dirt with my kids under any cost.  I feel like I have no freedom anymore and my life is being controlled by the onc and her staff.  Is this life with CML?  If it is, it bites.  I read from Trey that it does not matter how long it takes (but obviously the faster the better) to reach PCRu.  The best thing is that one achieves it.  My onc and staff have me believing that I will not get there and my case is somewhat hopeless.  Am I getting the correct info?  I am so confused.  I am also frightened, but trying not to let it get the best of me because I physically feel so fine.  I am holding on to that!

Get a new doctor, you will feel even better.  You are in our thoughts every day Tedsey, good luck with it.

[Tedsey]

Thanks everyone!  I sent out the form to fax my records over to a new doctor in a different system.  Appears the "state of the art" cancer center rides on its past laurels.

I do not like the way the onc guards my pcrs, etc. then lies to me about the numbers.  Was told by the nurse that I could only have some of my records available via computer, but the onc does not want me to get them before she does and before she decides what will be released (but onc told me flat out that they do not make records avail. via computer to patients).  How silly!   All I have to do is go downstairs to records and order everything I want.  However, I have to pay big bucks for the info. that way.

I also do not like that the onc is now too busy to see or talk to me, especially if I am in such "poor shape".  If all it takes is a nurse and PA to manage this disease, then why am I spending all this time & money at a famous university cancer center?  Could only guess I am a lost cause to onc, or she doesn't give me a 2nd thought which is not good for managing this disease.

I feel in her hands, that I will quickly and surely head for SCT/BMT, pass go, and do not collect 200 bucks, (her research appears to be in the area of SCT/BMTs--each time I see her she keeps repeating, "You are so young! You are so young!"  I am getting nervous.)

Dread having to go to the place tomorrow a.m. to get the Neupogen shot (if it takes less than 6 hours wait, I'll be shocked).  I really want to hold off, but feel I am between a rock and a hard place.  Told it was not an option.  On the upside, I don't have to see the onc.  I have associated her face with what Satan might look like.  OK, a little strong, but that is how I feel at the moment.  Aside from all this, the onc is a very strange personality.  On the first visit, she dictated how my husband and I should use our bed (and what that has to do with CML, I don't know, and it had nothing to do with warning against pregnancy which she scolds me about each time I see her--Yes!  Yes! I get it!)

Going to the cancer center is like entering one of the lower levels of hell in Dante's Inferno.  The more I read here, the more I see that dealing with an onc does not have to be the gut wrenching, anxiety provoking, big downer experience that it is.

Sorry.  Venting again, but also want others not to have to feel they have to go through this kind of thing.  Moreover, thought onc's personality quirks might make some good reading.

Cannot thank you all enough.

T. 

[venicedan]

good luck to you tedsey, youve always been so nice and supportive. i hope you get things figured out. im new at this whole cml thing so not that helpful. sorry.

dan

[hannibellemo]

Good luck, Tedsey - I'm sure you will be much happier when you don't have to fight for all of your information. My local onc was surprised when I asked for my test results but now he gives them to me before I even have to ask. (My Mayo onc makes sure I have copies of everything - I've never had to ask.) I think they just have to be re-educated. I remember giving him a copy of something that I thought explained the guidelines and new thinking on when to switch medications, etc. in an easy to understand way and I told him it might be useful for some of his other patients and he replied that he didn't think most of his patients would understand it.

Perhaps not, but then again, he may be surprised. I think many people until we have something threatening may be perfectly happy to let our doctors make all of the mundane decisions for us. Perhaps all of the blame should not be placed on our doctors but on the way some patients let, even encourage, them to make all of the decisions. What a heavy responsibility for them.

Logically, it would seem that doctors, given the opportunity, would be happy to share that burden with us.

I have to laugh when I think of the old joke that I was reminded of when you talked about 'state of the art cancer center" . What do they call the person who graduated at the bottom of their medical class?  DOCTOR!

Good luck with the neupogen tomorrow and everything else. (Hope you have a good book to read during your long wait! LOL)

Pat

[Tedsey]

Thanks again everyone.  Just got a call.  Now I have to possibly get the shot Fri.  Neutrophils are not low enough.  Stop the merry-go-round, I want to get off!  It appears the nurse is in poor communication with the doc and visa versa.  Cannot wait to get outta there!

[Marnie]

     Tedsey. . .get a new onc.  I've not been on this merry-go-round for very long, but my doctor situation is nothing like you've described.  Both of the oncs that I've seen have been very open with my data (and it is MINE, just as your data is YOURS). I never have to wait for than 15 minutes for anything (except once when the doc had an emergency with a new patient, and I didn't begrudge him that).  Find an onc that you like, and that you can work with.  This is your life.  You are paying for his/her services. . .you need to find someone that meets your needs and you feel confident about.  YOU are paying for his/her time and expertise.

Go play in the dirt with your children.  1 month after diagnosis (and my WBC was still pretty high) I participated in dirt bike school with the o.k. from my onc.  I go snowboarding, kayaking, motorcycling. . .and I hang out full time with middle school student who are full of germs.  This has been my healthiest year in quite a few years. . .I think I've been walking around undiagnosed for about 3 years. . .but once I got into treatment, I've had fewer colds than ever.

Get a new onc, and start enjoying life again.  Yeah, the side effects are a pain, but you shouldn't feel like you have to wrap yourself up in plastic and lock yourself in a closet so you don't catch a cold.  What's the use of being alive if you don't enjoy life??

Marnie

[Trey]

Filgrastim (Neupogen/Neulasta) should not be used above 1.0 ANC.  You said you are at 1.1 ANC.

Is yours a "State of the Art Cancer Center" or a "Cancer Performing Arts Center"?  Your care providers seem like actors pretending to be health care providers.  Reminds me of a Judy Collins song: "....send in the clowns....don't bother, they're here.."  Just sayin.  Or just singin.  Without the rain.

http://www.youtube.com/watch?v=5os4NFeKFFs

"Don't you love farce?
My fault, I fear.
I thought that  you'd want what I want...
Sorry, my dear!
But where are the  clowns
Quick - Send in the clowns
Don't bother, they're here."

  -- Judy Collins singing about Tedsey's Onc and Nurse

It isn't The Bard.  It isn't even PhilBard.  But it sure rings true.

http://www.drugs.com/ppa/filgrastim-g-csf.html

[lizy1013]

Tedsey, I had a problem with my onc's nurse communicating what I said to the oncologist.  The oncologist acknowledged the problem and gave me her email address.  Communication is so much better now that there isn't a middle man!  Good luck.  Marie

[Sloater]

Can everyone say QUACK!

This nurse is a wanna be doctor that has a personal ego.  Please just tell her, thank you, but no thanks.  

Where is this great cancer treatment center?  Or is that Cancer Glee Club?

The patient records are yours, you have every right to every one of them.  Your new ONC will request them and they are obligated to share them.  If they don't grant you access to them, you may want to check with a lawyer in your area.  This is total crap.

Where is PhilB when you need him, I am sure he has a drug induced song for this one...  LOL

Have a great day, and good luck to you on this journey to make sense of the current situation.

What is, is.

Sloater

[PhilB]

Quack!

Sorry boys and girls, just back from a week's holiday in a cottage without internet.

The song that leapt straight to my mind was by Stealers Wheel:

Well I don't know why I came here tonight,
I got the feeling that something ain't right,
I'm so scared in case I fall off my chair,
And I'm wondering how I'll get down the stairs,
Clowns to the left of me,
Jokers to the right, here I am,
Stuck in the middle with you

Tedsey I really hope you manage to get a more helpful doctor and soon.  I also second all the comments about 'helpful' nurses - when I was dxed and all the doctors were busy giving positive messages my nurse waited until they were all out of the room before advising me to check my life insurance and put my affairs in order.  Most of all I hope that your counts start to be more robust.

On your question of how long you've had CML and why it wasn't picked up earlier, the problem is that CML is basically an 'invisible' disease in its earliest stages.  The whole thing probably starts with a single mutant stem cell which reproduces uncontrollably.  It takes a fair while for the diseased population to grow to a significant size compared to the billions of existing blood cells and even then your body will continue to hide it by reducing / stopping production by your normal, obedient cells.  Only once it gets to the stage that even with ALL your normal cells switched off you are still producing more cells than you need does your WBC actually go up and the disease become detectable (it would never be practical to routinely do PCRs or BMBs on the general population to screen for CML before this stage).

Given the number of times you've been off the drugs waiting for your counts to recover it's not surprising (or alarming) that your PCR wasn't showing good progress.  There's no way it can show progress until the healthy cells buck their ideas up and start to provide a population of good cells to replace the bad ones.  It's good news that they have had to postpone your stimulating shots because your counts were still too high.  Fingers crossed that it's the first signs of the healthy cells starting to wake up and get back to business so that the 'open season' on the bad guys can start in earnest.

Best wishes

Phil

[Tedsey]

Thanks again everyone.  Thanks for the positive feedback and encouragement.  Thanks for the laughs.  I sure need it!

Marnie, I am getting out!  I decided that I may need a few germs to wake up my neutrophils.  Sitting around the house is worse for my health!    I admire how you get out, work with kids (I used to work with primary school tykes), ride your bike, live your life, and hard!  You don't let this monster hold you back!  Was it you that wrote, a ways back, about talking to your mother who you felt started to see you as a person who has cancer instead of you?  I am going though that right now with family.  So many seem to be scared of me and will say "hello" and "how aaaaare you?" to my face, then go across the room to get the skinny on me from my husband.  What a burden for him!  It makes me terribly mad.  Gone from being the skinny, little, blonde girl to the 800 pound gorilla overnight.  Well, this monkey needs to shed some weight.  One thing I would love is one family event where no one is whispering behind my back.  Just one day, where we can celebrate Christmas, birthdays, otherwise "happy" occasions without anyone bringing up the topic of cancer--especially in front of my toddler.  I now dread family events.  And I am tempted to take up drinking.  Think I will start with champagne...a good one.

Otherwise, I have been enjoying life and the sun.  Trying to stay away from "danger" and "being careful" whatever that means (onc's advice).  Not licking the soles of my kid's shoes!   That was great advice, not that I was tempted, Trey.

Go in for blood test again tomorrow.  Hoping for the best.  Feeling a little side-effecty today.  Things have come and gone all day.  Allergies too, but the sun is shining!

[Marnie]

Tedsey. . .yea!!!  I am glad to hear that you are getting out.  Good for you!

I did write about a conversation with my mom, where I told her that I felt like she saw me as someone with cancer rather than just plain old ME.  Coincidentally, I'm flying home to MN this Friday for a family reunion. . .my aunt's 80th birthday party.  It will be interesting to deal with people's reactions.  I was horrified in December when my mom blatted my medical information to the world in her Christmas letter.  This without asking me if I was o.k. with that.

I have been very lucky with how my friends and colleagues have handled my diagnosis.  When people ask how I'm doing, I simply tell them that I'm great and talk about the fun we had last weekend and how we're planning our summer motorcycle trips.  I think that they have mostly forgotten, though they are certainly reminded when we're out for dinner and I pull out my purse and down my golden bullet.

I do sometimes wrestle inside my own head with how I want to be treated.  I DO want people to know, but I DON'T want them to treat me with kid gloves. . .unless I"m feeling like crap, and then I DO want them to realize that cancer is a lousy deal.  My husband probably knows that I'm feeling lousy 50% of the time that I feel like crap.  Mostly I just grin and bear it. . .that comes from my Minnesota stoic upbringing, I guess.  But when I do feel awful, I let him know, and he's great about picking up the slack with cleaning up the kitchen or whatever.

For me. . .it's all been about not wasting time feeling sorry for myself, and not wasting time that could be spent enjoying life.

I'm a little apprehensive about the upcoming family reunion, but my plan is that when people ask how I'm doing, to stick with my line of "I take a very expensive pill each day, and life is pretty much back to normal."  That's not quite the truth, but for me, that's what I want people to see.  When they see that, then they go on with life as it was before.

When one of my cousins found out (from my mom, of course), I got an e-mail saying that they were going to send me a card every week.  After the second card came, I wrote to them saying that before Gleevec, the card thing would have been a great idea, and I'd have really appreciated it, but with Gleevec, I'd probably be around for a good long time, and sending a card every week would get pretty expensive.  We have ended up reconnecting through e-mails on a monthly basis, which has been a great bonus.

Anyway. . .hooray for you, and good luck with everything.  And cross your fingers that I get over this miserable sore throat and headache before I fly home.  Grrr.  Haven't been sick all year and now this.

Marnie

[Irishmonk]

Glad to hear you are breaking up with your onc.

They are all not the same.

You can push the issue on getting your records. It is my understanding that if you ask they must give them to you. They are your records. Got all my doctors to either email, fax or copy and snail maile me all my records so I could compare what was going on and be a part of making decisions about my life.

My new doc tells me someday Gleevec will fail but no one knows how long it will last. He is a great doc but a onc not a focused CML onc. My insurance sucks and it took me awhile to even find an ONC that I could see. It was at that point that I really got serious about taking this into my own hands. There are just so many different kinds of cancer and cancer traatments out there that no one could keep up with it all. It is our "life" to figure out what is going one with us and it is not an easy task for sure.

The FISH and PCR numbers are what really matters. It is rally helpful to know the details from the bone marrow biopsy in order to determine which one of the many types of CML you have. It is my understanding the mutations may or may not stay the same over the life of the disease and thus the bone marrow test must be done once a year or so (as long as you are in some state of remission) to make sure you have not devolped some new form of CML.

My prayers are with you!

[robbie]

Just have to reply regarding the onc telling you "Gleevec will fail someday". I was diagnosed at accelerated phase in 1999 and have been on Gleevec since that time (early clinical trial) and have been PCRU for 10 years. While I never attended med school, I sure would like to know what makes an onc make such a blanket statement with no real long term clinical studies to base it on. Sorry...had to vent...some of these onc's are not always thinking....Robbie

[Tedsey]

Marnie, hope you are doing well and fighing off this thing.  Thinking of you!  Sending good vibes your way (It's the best I can do...).  I so wish I were magic, then I could wave my arms and cure us all!.

[Tedsey]

Thanks Robbie!  I am so happy to hear you are doing so well!  May you keep on healing until there is a cure!  What you said gives me so much hope.  I joke with my 3-year-old because he always wants to drink my coffee, that when he is an adult, he and I will sit down and enjoy a cup of coffee together (but not now).  It makes my heart ache making such "promises" to him, but we have to live a normal life!  I so wish for this to be a story with a happy ending!

As for the onc I see, I am now certain she does not know how to treat CML.  Her specialty is myleoproliferative disorders.  She also has published scientific papers on it (has a lot of stuff on stem cell transplants).  Hopefully, she is much better at research than practicing medicine.  May the medical research community know better too!

When she made that blanket statement, she didn't even mention Gleevec failure.  However, I could only think it was implied.  I also am not a medical professional and all the warning bells went off as those words spilled out of her mouth.  I could only look at her and think, did she say what I think she just said?  I have never been quick with a comeback.  I always have to sit with something before I take action.  I have only been diagnosed and familiar with CML for 4.5 months.  But with the teeny tiny amount of knowledge I have acquired, I feel what she said was outrageous and illogical.  Now I know why I left the office feeling like I had to run for my life!   Thank you so much for responding to me.  You made my day.

[Tedsey]

Dear Irishmonk,

Just saw your post.  Thanks also for your response and encouragement.  How negative for your onc to say to you that Gleevec will stop working.  It appears that insulin for diabetics has had a very good track record.  Why couldn't Gleevec?  From what I read, it appears Dr. Drucker, the guru, seems to think it can be quite effective for most and for a long time.  Sorry to hear you have had such insurance problems.  Too bad about your onc being such a downer.  I can totally relate.  All the best to you!