11 replies to this topic

[cyclejoy]

Greetings and thank you, everyone, for you support and great ideas and expertise. 

I was dx Jan 26. WBC of 57K and all other counts elevated.

Started 100 MgSprycel and reach a CHR Complete Hematological Response by the end of February.  I keep watching the ANC drop  - it is at 2.7 down and appears to be leveling off. Drop is slower now. RBC is low 4.something but my onc is not worried.

Here the deal - he doesn't bellieve getting a FISH or BMB is useful - his believe is "so what". Whether you reach PCRU or CMR or CMM or whatever, the treatment is the same. If you go off Spryel, your leukemia will come back. If you continue on Sprycel it will stay in remission. I am not having any significant side effects but who knows the long term side effects and would a drug holiday be good for whatever time you might reclaim from reaching PCRU?  There is onc heme at the Emory Winship Center and he is on the CML natinal advisory board. I do love my onc heme - but am wondering, since this is my old body, maybe it is worth some expense and time to consult with this other doctor. His credentials don't lead me to believe he is doing any special work on CML research, but he obviously was selected to be one of the advisors on the CMl Board for some expertise. So what would you all recommend?  I have been sooo impressed by the level and depth of response and heartfelt responses from those of you who are "regulars" on the board - Ok- I've been a shy lurker :=) that I felt it worth asking for some support myself. I just am in a quandry as to what to do.  Thanks for any help you can offer....was totally  overwhelmed by this disease at first, angry, confused, shocked primarily and felt at the mercy of the doctor and nursing staff who have been the best ever. just amazing. So kind and helpful.  But I am still concerned about not necessarily getting enough information to make my preferences known. So, why do the FISH or BMB????    Rambling in Decatur, Ga.

[valiantchong]

Think your doc is partly right, but according to standard treatment BMA should be analyze after 6 months... He is right that not everyone will achieve PCRU, if one does not, the option is to change drug or SCT. But then again most will not choose SCT even though not PCRU... so.... he is right in a sense... but to be save we need to know if the PH+ cell is increasing or not... Then again it still leave us not many choices except higher drug level or change to next drug, if you already in Sprycell then u next drug on list will be Tasigna...

The BMA need to be taken within recommended time length to detect any progression.

[PhilB]

There are two possible scenarios here.  Either (i) your onc is very bad at communicating and you have misunderstood him or (ii) he's a dangerous idiot.  Monitoring CML by blood tests alone is a bit like relying on whether or not you can see any fins breaking the surface of the water to decide whether it's safe to go swimming in shark-infested water.

In the early stages of treatment it is standard practice to do a BMB just to check if there are any other complicating factors, and most oncs will also do a PCR to get a personal baseline to measure from.  Neither of these is absolutely essential (ie it won't kill you not to have them), but both are very good to have.  For the first few weeks blood tests are the only thing worth looking at until they are stable and the drugs have had time to work.  Longer term though, the ONLY ways to know what's really going on is by cytology, FISH or PCR as only these can reveal what is actually happening beneath the surface.

Your doctor's faith in Sprycel is touching, but the sad fact is that no particular drug works for everybody and achieving a haemetological response, whilst good news, tells you nothing about whether it is really working or whether you need to look at a higher dose or a different drug.  Your onc is right that PCRU is largely irrelevant from a prognostic standpoint.  He is talking codswallop though if he thinks the same is true of CCyR and (to a slightly lesser extent) MMR.

The odds are very much in your favour that you'll be fine even if you do continue to be treated by a moron.  The risk is that you are one of the unlucky few for whom the drug doesn't work and by the time it has got bad enough to show up on a CBC the CML shark is already biting your leg off.

[Trey]

Your Onc's saying "Whether you reach PCRU or CMR or CMM or whatever, the treatment is the same" does not cover all the potential outcomes.  We are monitored to watch for lack of response or loss of response more than to see how good the response will be.  Even Sprycel can stop working, and it is most important to monitor closely during the first year.  So if it were me, I would use an Onc that would comply with basic guidelines for CML treatment.  CBC's regularly, FISH or PCR every 3 months, follow-up BMB at 6 months unless you have a very rapid response.

[CallMeLucky]

If that is in fact an accurate description of your doctor's attitude toward treating CML, I would find a new doctor.  CML is a very serious disease and a flippant approach just because we have very good and effective treatment options is malpractice.  The guidelines for treating the disease are very clear.   You should go to the NCCN web site and obtain a copy of the CML treatment guidelines.  I would say you should go to your doctor with guidelines in hand and ask why he believes he feels he knows better than all the leading experts, but what good would that conversation do.  Again, if that is truly his position you should find a new doctor.  I'm sorry, I understand you like him, but in my opinion a good doctor is not someone we would like to hang out with and it is not someone who tells us what we want to hear.

The odds are you will be fine on TKI treatment and that will be that.  But what if you start to lose response, something that would be seen in a PCR increase.  This could be dealt with by switching to a different drug while still in chronic phase.  With your doctor's approach, you wouldn't know until counts were elevated and at that point you may have progressed to accelerated phase which can seriously impact your long term prognosis.

It's up to you to do what you feel most comfortable with.  In my opinion, what you have described is a doctor who does not respect the seriousness of CML and that is not the person I would want treating me.

Best of luck, I hope you continue to respond well.

[VickiW]

WOW!  If you understood your onc correctly, run, don't walk to find a new onc!  I finally reached PCRU on Sprycel but if I try to not come in for my quarterly (every 3 month) CBC and QPCR my onc's clinic is on the phone hounding me!  and trust me, it is not because he needs the money.  My onc is so highly respected that people literally drive hours and hours (including me) to see him by choice and his clinic is so busy that it can be difficult to get an appointment if you are not a "regular".

Forgot to add that (thankfully!) he does not believe in doing BMB unless there is a real reason for it after initial dxd.  He much prefers the QPCR for regular monitoring.

[hannibellemo]

Trey said, "Even Sprycel can stop working,..."

Intellectually, I understand that is true, but darn it, Trey, you just popped another "denial bubble"! 

Cleo

[Susan61]

I hope you just misunderstood what your Oncologist told you, but if that is what he said you better move on to somebody who is a specialist in CML.

I do not want to repeat anything that Phil or Trey said, but please follow their advice.

I just started my 13th year living with CML. and I get complete blood work every 3 months to be sure everything is still going as it should.  Then every 6 months I get my QPCR Test, and its been PCRU for 7 years.  You just do not stop doing these tests.  Please see someone, and let us know how you do with a second opinion.

Take Care

[acb]

Trey,

Please remind me how often "regular CBC's" are, assuming your CBC #s look fine. Are CBC's every 3 months ok (just like PCR)?

Thanks!

[Trey]

There are no truly firm requirements for a CBC schedule, and it depends on response and potential complicating issues like myelosuppression.  But generally CBCs are needed every week or two just after diagnosis while starting a TKI drug.  After Complete Hematological Response (CHR) the CBCs can be every 4 - 6 weeks assuming no issues like significant myelosuppression (then they should generally be weekly until under control, but it all depends on the severity).  Some would even stretch out the CBCs to 3 months after CHR, but during the first year more active monitoring is a good idea, since if loss of drug response is going to occur, it most often occurs during the first year or so.  After Complete Cytogenetic Response (CCyR) or after about a year of steady response if no CCyR, then CBCs can be every 3 months along with the PCR, again assuming nothing needs to be watched more closely.  After Major Molecular Response (MMR) or PCRu the CBCs can be done when a PCR is done, which can be every 3 - 6 months.  For me, starting after two years in steady PCRu my Onc stretched out all my testing and visits to every 6 months.

When the PCR is done, a CBC and also a Complete Metabolic Panel (CMP) should be done.  An occasional liver panel and thyroid test is also a good idea, and my Onc does them every year or so.

[gunner]

Most everything intelligent has already been said. So I guess it is OK for me to stir the pot!

Initially, there is a need to establish a baseline. What is the condition of the bone marrow, is it healthy, what stage is the disease at. (BMB/BMA) Need some initial levels to measure progress against. ( CBC, PCR) Need to establish what breakpoints are present. (Genetics, FISH)

As we start drug therapy, need to monitor what is going on with the blood. Watch for anemia, watch for effectiveness. (Frequent CBC).

After a short time, let's recheck the metrics using the expensive test. (FISH, PCR)

Assuming everything goes normal, we can back down on the frequency. The FISH no longer detects deviant behaviour, so the main tools are the CBC and a PCR.

For most of us, the process is predictable. Especially when looking in from the outside. I suspect that we sometimes see complacency in the oncs, especially if you are the person who just found out they have cancer, and are concerned that you are not going to see your next birthday. I went through needle withdrawal when the decreased the frequency of the CBCs, and when they decreased the frequency of the PCR tests. For some reason, I had no problem with convinving my onc that there was no need for additional BMB/BMA (I don't play cribbage, and my kids don't play cribbage, so what's the point?)

After everything settles down, some of us have become familiar with the lab results, understand the trends, and see the numbers get into the deep response area. At that point, we are moving into the ongoing monitoring mode. Not expecting to see anything, but not going to chance it either. Trust but verify. Another opportunity for needle withdrawal. I am now on a maintenance schedule where I have CBC and PCR drawn every 3 months, and see the onc at 6 month intervals. I can read my own results.

Initially, there is a need for a lot of involvement, a lot of testing, and a lot of education. It takes awhile for the anxiety to settle down, and for the test results to get to the point where you finally realize that the disease is not the focus of your life, and it is time to move on.

That being said, if I had an onc that didn't see any value in PCR testing, I would dump them and find someone else.