22 replies to this topic

[pammartin]

Although I could write 100 pages of rant, I will try to keep it to a several paragraphs.  I had an appointment today at my local oncologist, a month later than my original one that the oncologist's office changed. Almost immediately upon stepping in the room he informed me he is no longer going to follow me because I am refusing to take a TKI and Cleveland Clinic did not recommend I stay off any TKI as long as I remain undetectable. 

 

I became more than a bit frustrated and annoyed, both my husband and I were with the doctor at Cleveland.  He stated I heard only what I wanted to hear and because I chose to be non-compliant, 'they' meaning Cleveland could follow me. I shared Cleveland gave me three options, stating the choice of remaining off TKI was in my best interests with the PH difficulties.  Cleveland oncologist asked if we were comfortable with this choice.  We agreed and she made notes to send to Dr. Mullins along with investigating the lab they used.  Cleveland is getting better with accepting outside testing but they still want the labs to be at their standards.  Apparently the lab the local oncologist uses is not adequate.  He simply stated he was not interested in searching for a lS lab or following a non-compliant patient.

 

When I requested he review the notes from Cleveland he flipped the folder back, I had already named two of the options I was provided and asked what the third one was.  I was blind-sighted and couldn't remember.  He skimmed the notes, did not answer my question or provide the third option.  He shut the folder and said it did not matter.

 

Just for shits and grins I asked him when (not if) I had to return to taking a TKI if I he would be interested in returning to following my case.  Over his shoulder he stated he was not going to waste time on someone who was not compliant. 

 

The one interesting piece of this entire wasted visit was two months ago he strongly stated every person who stopped a taking a TKI had tested positive and returned to TKI treatment in all trials.  Today, he said he has been approached by several of his patients about stopping their TKI and because there is no information about stopping he is not interested in the concept.  He also noted that 50% of the patients who have stopped continue to be undetectable.  But if I was to stop I had to be in a trial (which I am not a candidate for because they stopped my TKI without monitoring me) and I have not been undetectable long enough to try.  I have been undetectable for 3 years now.

 

He also stated Cleveland could get testing approved monthly and they were not able to do this.  I guess I can understand that in some fashion but it seemed to me he was peeved because Cleveland did not accept the procedures or lab testing from the main hospital.

 

If this is all a bit confusing and scattered, it is because I have tried to recreate the visit as it happened.  On a side note, I had a paper with me from an agency I am affiliated with to provide respite care for children. I requested he review the paper and sign so I could turn it in.  He skimmed the paper and where it states 'mentally healthy' he read it out loud in front of the PA and an intern (I was never introduced too or her presence noted) and said, 'You, mentally healthy?'  I cannot recreate the snide tone, and although I was upset I did not misunderstand his insinuation. 

 

I can go to Cleveland, it is a few hour drive, each way.  But am I out of line by thinking this was a ridiculous way to handle the entire situation and waste another month that I have not been tested because he seems to have his nose out of whack?  In a day or so I will probably think this is funny, but right now I am still seeing red (and trying to contact Cleveland so I can get an appointment scheduled.)

[scuba]

Pam,

 

Is there a local Hematologist you can reach out to conduct the monthly testing? They can do the lab work and provide you the results.

At your level (PCRU), all you really want to catch is whether you become "detected" again so you can visit the Cleveland Clinic for follow-up. 

[snowbear]

I am sorry this happened.  No matter what you did, you deserve better treatment from the people who are supposed to take care of you.  If Cleveland is too far, what about Pittsburgh? 

[pammartin]

There are local oncologists not affiliated with Dubois hospital, but Cleveland is strict about testing/labs used.  Cleveland will only follow me if I use their lab or a lab they have approved.  3 1/2 years ago they would not accept other lab's results, they have come a long way.  I want to stay with Cleveland because I need a 'good' source in case I would have a problem in the future. 

 

Pittsburgh would be my best choice but I cannot receive treatment after the battle with UPMC and BC/BS.  I guess I might have to find a new PH doctor at the end of this year. I was under the impression if you were grandfathered in before the changes took place you were ok.  Today, the PA said there was only one years grace period.  I might have to switch all treatment to Cleveland.  I have contacted PH nurse to see what is policy, I should know shortly.

[Buzzm1]

there is far too much money involved in pushing TKI's where they aren't absolutely needed

or any drug, for that matter.

 

that oncologist is a discredit to the profession.

 

why would any doctor want to push an unwanted, unneeded (at this time) medication onto a patient, 

especially when that patient has other serious conflicting infirmaries

and the medication, in itself, is known to have numerous debilitating side-effects

 

it makes absolutely no sense

 

In the meantime Pat, keep celebrating those undetecteds

it's your life; it's your decision to make, one BCR/ABL at a time

it must be your success that bothers the _____

it flies in the face of his convention

can't blame you for being heated; I'd feel the same way

[snowbear]

There's the Allegheny General hospital system.  I don't know too much about them as I have UPMC insurance and have to go their hospitals and doctors when in Pittsburgh.  I drive an hour to see my Hema/Onc because the local office doesn't treat any of the leukemias. 

[pammartin]

I made several phone calls yesterday and emailed PH nurse. Hoping to have clarification today. My husband and I talked last night, moving everything to Cleveland would be our best move, because everything would be treated at one place.

[sunshineC]

This is all so crazy.  It's so sad that we not only have to deal with the CML and the side effects of the TKI's, some of us have to fight doctors, hospitals and insurance on top of it.  You have certainly been through enough.

I'm so sorry for your plight Pam.  Keep on keepin on and know we here are all behind you!  I wish you the very best.

[pammartin]

Thanks. If nothing else it might help someone who is experiencing a similar difficulty.  Today is a better day.  I am still annoyed at how I was treated but that will pass also.  It would have been as easy to simply state over the phone the oncologist was no longer interested in following my case.  I have no argument to try to convince him, it could have been a fairly amicable parting of the ways.  I suppose he was unhappy with Cleveland stating the labs they use were not credible, it is a fairly busy office even though it is located in a small town.  No one liked to be told by a peer their work may be substandard. 

 

I will have the Cleveland appointment scheduled today if possible.  And when I hear from the PH nurse I will move forward with that also, after our talk last night it might be easier to move even if I was covered at UPMC after this year.  Cleveland may be a bit longer to get too but it an easier trip with almost all interstate roads and I could have all appointments and tests on the same day. 

 

Onward we go!

[sunshineC]

I hear ya!  I started out at the Christiana Hospital, which was fine - great even.  But the onc definitely was not.  After months of his shrugging his shoulders at me when I would ask him questions or try to explain problems I was having with side effects, I did some research and found a CML specialist, involved in many trials and research at Johns Hopkins in MD.  They're both about the same distance from me, maybe JH a little further, but I am much happier with my team.  Even the original specialist I saw there spoke about quality of life being a very important thing.  I've also been fortunate enough to have found a GP and Internist (gastroentologist?) who are very understanding and all communicate well together - more than half the battle, right?  Anyway, I'm very happy I made the move. 

[Gail's]

I know many docs who don't always love what their patients decide to do about a health problem, but I only have experienced a doc "firing" one patient. In my opinion, that firing was justified. Those docs who don't agree with a patient's choice just clearly state that they would recommend a different treatment but continue to offer the patient care. Divorcing a patient is legal, however most states require a very specific process to be followed or it's called patient abandonment. A doc that divorces a patient is often afraid of liability if they don't arm twist the patient into cooperation. Maybe a letter would make him more worried about being censured by the medical board in your state.

It might be helpful to you to find out if your state has such a process, not so much to get this doc back, but to teach the jerk not to use that method again. Might be a bit hard to do, write a letter to the idiot. But it could help you put your understandable resentment to rest faster. I think you're better off working with docs with better ways of supporting you, even if they might not agree with all you do. Whose life is it anyway??

[AllTheseYears]

pammartin:  I dare not comment on your specific case, but I'd like to offer some insights that I have helped me.  I've learned that it's important to have all testing done at the same lab.  Different labs have different standards, and you can get conflicting results and interpretations from different labs.  To get the best picture of how you are progressing, you need consistency.  Also, inconsistent labs can translate into inconsistent treatment, and that definitely can be bad for the patient.  The need for consistency includes, I think, having just one doctor who can get to know your case over the years. Two doctors might disagree out of professional competition, lack of experience - or just human nature.  It can be nasty to witness dueling egos.  

 

Several years into my survivorship, I switched oncologist (2004). I began to think my local oncologist did not have enough information and experience treating CML.  She also talked down to me.  The switch meant I traveled 4.5 hours each way to a major cancer center with a staff of hemo/onc specialists.  The change was a very smart move.  The consistency of doctor, labs, protocols, more sophisticated approach to medicine, increased experience with CML, better communication, and even the physical environment of a major, nationally lauded cancer center made me feel more secure and confident.  Another benefit:  I now see another specialist at this medical center for another illness and that specialist shares information with my oncologist.  Two diseases but one body. I think this offers a clearer picture of how I am doing. 

 

I've been making that 9-hour roundtrip for 11 years now.  Still worth it.

 

I am considering saying "Goodbye TKI" now that I have been undetectable for many years.  Frankly, I'm sick of the Rx side effects (they DO exist and come-and-go in intensity), as well as the hassle of getting and paying for my Rx. But the sobering truth is that cessation is a gamble.  It's early in the history of TKIs and it's hard to predict how each individual will react. Doctors don't want to offer advice that might turn out to be risky.  It seems the data from trials vary.  For myself, I would not stop taking my Gleevec without the full cooperation of my CML oncologist...whether he just monitors me (at intervals we negotiate), or insists that I enroll in a trial.  The ramifications for my health - both mental and physical - and my pocketbook are huge.  I don't want to burn bridges, suffer, or feel alone. It's tough.

 

I'm sorry your local physician was rude and insulting; it's not acceptable for him to talk down to you no matter the circumstances. I get your frustration and anger.  I wish you the best in making your decisions.  This CML thing puts us on a lifetime journey. 

[CallMeLucky]

I would have smacked the snot out of him and then said "what did you expect from someone who is mentally unhealthy?"

[Pin]

Pam, that is outrageous! I'm so sorry you were treated in such a disrespectful way. Like it isn't hard enough to do what we have to do, plus the other medical issue you now have - some people just cannot, and will never understand!

[hannibellemo]

Hi, Pam,

 

I'm glad you are feeling better about the outrageous way you were treated. Consider the source and move on, it's not like you thought he was such a great onc anyway and he certainly proved that!

 

Having all of your treatment in one location seems like the way to go.

 

Take care!

[pammartin]

Thanks for all your comments and support.  I almost knew he was not going to 'like' what Cleveland had to say.  He just took me by surprise by his attitude and his immediate dismissal of anything I said along with the negative comments. 

 

I am writing a letter in my mind to him, the department, and the department heads.  The letter will not be emotional or accusatory, instead it will be factual and deal with my case.  I am going to request from the local oncologist and Cleveland a copy of what Cleveland sent to local.  I am going to include the recommendation with my letter.  I still find it interesting he would not read me the other option I could not remember or speak of the choices in further detail after he actually thumbed through the paperwork and read the report.  I am almost convinced he did not look at it until I brought it to the discussion and disagreed with what he noted was the recommendation.

 

I do like the PA, and she was silently making gestures with her hands behind his back.  We have spoke of him and his attitude before when he was away, she never said anything negative but she also did not say anything positive either.  Her gestures helped me understand even she thought he was a bit over the top. 

 

I do agree using the same lab is important, although my insurance did not cover the PCR testing so they put me in contact with a lab that provided free testing.  I have had 4 labs since I began this journey back in 2011.  My baseline is long gone because of lack of insurance coverage and testing at Dubois, Pittsburgh, & Cleveland.  I am not really concerned at this point about my PCR test because Cleveland completed one a few months ago.  If the local oncologist was using a less than credible lab, the PCR from Cleveland would have shown any changes.  Hopefully I can stay at Cleveland now and most of this ridiculousness will fade away.

 

On another note, I heard from my PH nurse today, she sent my question about coverage to her department supervisor who handles all claims and approvals for visits and treatment.  Although I am to contact the supervisor directly, she assured me via the PH nurse I am covered by BC/BS even though it is a UPMC hospital. I will touch base with her office next week to get a clear picture of what is going to happen.  Again, worse case scenario is a full day at Cleveland.  It is manageable.  I know have had time to think it through and wish I was a bit more on my game and my smart assed mouth.  I could have gotten in a few more jabs myself, had I not been surprised.  I think the only thing I am still angry about is canceling my original appointment a month ago and making this one only to tell me I am no longer under his care.  I could have been to Cleveland at least once if not twice for regularly scheduled testing and visits. 

 

I do believe I am going to write my letter.  It might not get much attention or action, but it is a written record and I think it will make me smile. 

 

Love this group!  Thanks.

[Gail's]

I recommend you send a copy to your states medical review board. Glad you're letting the hospital and department manager know since they me in a position to require some training for this jerk. Wishing you well.

[pammartin]

He spends a month in Florida then a month here. I would not be surprised in a few years he retires. He has been doing the monthly shuffle since I first started going to Hanhe Cancer Center. I think we are going to see many changes in our treatment and dosage within the next five years. Although it is frightening to have CML, the anvances in treatment are exciting!

[rct]

Unfortunately nobody has written a treatment protocol that includes just stopping, and probably for some pretty good reasons.

 

I've been reading a long time now all the stopping stuff, and I encourage a look at it from the other side.

 

My Mrs has endured long term, like, 7 years now, of low to no ANC counts, and far below normal WBC.  She has endured 400mg Gleevec daily along with long periods of weekly, bi-weekly, monthly, back to bi-weekly shots of neupogen. If any of you have had to do that, you need no introduction.  It is not at all pleasant.  She has endured all of this while continuing to try and make it to her retirement, with her hair and cancer, since everyone in the world thinks that cancer that doesn't cause hair loss must be like allergies or something.  And all while PCRu for many years.

 

After a few onc changes we've had one that has gradually reduced Gleevec in order to hopefully counter the ever low ANC, down now to alternating 200 and 100.  Two good PCRu in the last 6 months.  This month, upward number.  Prudence and responsibility dictate that she go back up, so back up to 300 a day, which is better than 400 a day, but not as good as alternating 200 and 100, as all of you dealing with the side effects can attest.

 

If the docs encourage a non-existent protocol to stop, and she is encouraged by an apparrently qualified onc to stop TKI altogether, and the damn disease rages back, what is anyone going to do?  How is anyone going to feel?  Does nobody see what happens once this thing gets pissed off?  Doesn't anyone remember the Asian/Indian folks that no longer post here, they have their own places because of how difficult it is for their genetics to deal with this?

 

It wasn't very long ago at all that there were courts and suits and lawyers to GET people these drugs, and it saddens me to see how short the memory of the only CML village there is.

 

Do what you wish for yourselves, but don't take on the mantle of "cured" and "we don't need these drugs".  Cancer is as cancer does, and it should be clear to all but the very newest newb here that it is different for everyone.  What is a blip up to one person quickly becomes raging leukemia to another.  That onc may have had to sadly stand by and watch one too many get away because of non-compliance, voluntary or not it doesn't matter.

 

There is a whole nother heartbreak of a thread up there, strangely absent any talk of quitting the drugs, no cheerleaders and hoo rahs of WE GOT THIS THING BEAT, none at all.  It's almost like that whole side to this thing doesn't exist anymore because a few people have stopped and are just great.  It does exist, it's in the hospital every time we go in there, so we never forget.

 

What happens when somebody, some family member/coworker/boss/neighbor/friend, somewhere, says to a new CML person, "...hey I saw on the innernetz you don't have to take that shit anymore!"?

 

rct

[scuba]

RCT - Have you thought of switching drugs? The idea being to manage the side effects, perhaps change the low ANC profile?

Tasigna is similar to Gleevec, but binds more tightly to the ATP pocket. It might enable continued PCRU, but on lower dose so the blood counts are not as affected.

 

Does her bone marrow reveal anything abnormal that could explain the low counts other than the TKI?