15 replies to this topic

[Johnc]

Here is a summary of my situation

Diag. 4/12

* Slow responder on Gleevecs

* Moved to Sprycel -  No side effects

* 2 Med breaks because of low platlets, after first one moved from 100 mg to 70 mg.Sprycel

* Went to a Leukemia Specialist, as my doc was loss on what to do because my PLts and ANC would not bounce back

* Restarted meds after 4 week break

* Had bone marrow, DNA testing and a new work up at Specialis

* No mutations found

* Bone marrow PCR was at 29.00 and blood PCR was a 2.34. I think the variance is a 4 week drug break

* My blood counts - plts and anc and starting to trend south similiar to the other two events

* Specialist said if both  Plts and Anc fall together we need to try new meds and/or consider a BMT

* 60 to 70% success rate at their location

* THE SPECIALIST REFUSES TO GO LOWER ON SPRYCEL DOSE.

* Speialist wants to have another PCR taken in a couple of weeks which is only two months from the last one and stated the DNA test shows alot of Philly cells. Wouldn't blood pcr(2.34) follow bone pcr(29), showing a trend up unless they would reach an equialibruim before they start to head down.

Q. Does anyone know how the DNA bone marrow test differ from the other PCR test?  Is one test better than the other ?The Specialist did not want to talk until she had DNA results, so she called me and wants me to come in.

Q. Is it to early to do another blood PCR, being two months apart or is Specialist looking for something?

Q. How many folks that have taken breaks, how long do your breaks last and how many have you had?

What would you do based on this info above? I am getting a little nervous here.

I have an apt. in early april to discuss.

johnc

[Trey]

There is no "DNA test".  I assume you mean a cytogenetics test looking at the chromosomes inside 20 dividing cells, which is a BMB cytogenetics test.  If your marrow PCR is rising rapidly then the blood PCR will follow within a short time.  If they are both "steady" then they will agree most of the time.  I assume you are losing response due to the drug breaks. 

I do not know how low your PLT and ANC have been.  Some Oncs get overly concerned when they should just let things alone.  But I don't know your counts.

It is not an easy call.  You may want to consider the low dose Sprycel and stay on it no matter what happens, or switch to Tasigna.  You need to end the breaks either way,

[scuba]

John wrote:
" *Specialist said if both  Plts and Anc fall together we need to try new meds and/or consider a BMT

* THE SPECIALIST REFUSES TO GO LOWER ON SPRYCEL DOSE."

John - Get a new Specialist. He doesn't know what he is doing because he lacks experience, doesn't confer with experts, doesn't follow the journals in his field or some other stupid reason. Regardless, you need an expert opinion.

The fact that ANC and PLT are dropping (exactly what I faced) is a sign of strong Sprycel effect. What you should do is lower your dose dramatically to find the balance between dose and response while maintaining sufficient blood function. Your bone marrow is not in good shape right now (indicated by lack of Gleevec response). The Sprycel is having a positive effect. Leukemic cells are getting wiped out - but your normal cells are not there to recover. That takes time. What are your ANC and PLT counts?

You should consider lowering your Sprycel dose significantly once your ANC and PLT get above threshold (50 for PLT; 1000 for ANC). Once your blood counts are in a safe zone consider restarting Sprycel at 20mg. Yes - 20mg. You may still have to stop Sprycel for a week or so if your ANC, PLT falls below the safe line, but re-start again. Keep doing this and you will likely come out of it with a decreasing PCR and an increasing ANC - PLT to normal. It will take about a year for this to occur. Maybe faster. You need a doctor who will work with you on this. You have to be monitored more closely during the transistion from a Leukemic bone marrow to a normal one. That is what this is all about.

Your situation is what happened to me. I did not respond adequately on Gleevec. I could not handle a higher dose due to myelosuppression (low ANC below 500).  Lowering Gleevec to 300mg. led to an increase in FISH and PCR. So Gleevec wasn't working for me. My first doctor wanted to try higher dose Gleevec with STIM shots. I decided to get a new opinion from an expert who does actual research in the field. Dr. Cortes at M.D. Anderson stopped me taking Gleevec and put me on 70mg Sprycel to start. My ANC plummeted - in fact my ANC went to  100 which was dangerously low (anything below 500 is dangerous). Dr. Cortes had me stop and wait for recovery and told me during this time that if I get a fever of any kind to go to the emergency room. An ANC as low as I had would kill me in 24 hours without treatment if an infection merely started. That was sobering. He did not want me to take any Stim shots. He said specifically that he wants to keep re-starting me on Sprycel (20mg.) and watch for Blasts. As long as I do not have Blasts, he felt he had the time to let Sprycel work with this start-stop methodology until bone marrow transition occurs.

I stayed off Sprycel for about 3 months until my counts recovered to above 1.0 again. And surprisingly, my FISH during that time dropped, but PCR stayed the same (** see below). Dr. Cortes restarted me on 20mg. Sprycel instead of going back to 70mg. My ANC and Platelets dropped dramatically again - even on 20mg! - this time to about 400, but I stayed on Sprycel and had weekly blood tests. After a short time, my ANC started climbing to about 700 and stayed there. A new equilibrium was found. Platelets never got below 50, but they returned to about 120. For the first time in a year or so, I was able to stay on a drug without my ANC or Plt tanking. What happened next was remarkable. After 7 months on 20mg. Sprycel, My FISH went to zero and PCR went to 1%. A few months later my PCR went to 0.1% (IS scale; MMR). My ANC was still low, barely breaking above 1000 and Platelets rising and falling around 100. My red blood was 25% anemic, but I had near normal hemoglobin.

I repeatedly asked Dr. Cortes that I want to raise my Sprycel dose to 40mg and hit the CML harder. He told me NO. He was emphatic about it (as emphatic as he gets which is not much). He told me that Sprycel is doing other things in my body that are not necessarily related to the CML. He said lower is better if lower works. Let me repeat that: Lower is better if lower works.  He was thrilled that in my case lower not only worked it put me at a major remission point indicating long term survival.

Fast forward to today. I just had a blood test (waiting on PCR results). My ANC = 2500 (up from 1600 3 months ago and Platelets = 140. Hemoglobin is normal, Red blood cells still a bit low (but close to normal). My last PCR = 0.001% IS scale. I am close to PCRU.

All on 20mg. Sprycel.

YOU - can very likely reach a major remission milestone on only 20mg. Sprycel if you give it a chance. to work. You need a doctor who will work with you and monitor you and enable you to try. You have to be vigilant - you will have to have weekly blood tests to track response of your ANC to make sure you stay safe and you will have to have regular FISH and PCR to make sure that 20mg. is working. I was prepared to go on and off on and off for however long it took - and it took only two cycles. I continue to take 20mg. sprycel every day.

** I do take Curcumin (8grams) and that may be augmenting the low dose Sprycel. Curcumin is neither encouraged or discouraged by Dr. Cortes. He merely notes that I take it and wants me to inform him of reaction. So it is possible that 20mg. Sprycel + Curcumin is helping me achieve the results I am seeing, but Dr. Cortes was quick to tell me that he has other patients on 20mg. Sprycel who have excellent response. He has no one at PCRU on 20mg. Sprycel. I would be the first.

[Johnc]

Trey and Scuba:

Thanks for taking the time to provide your input.

After my 4 week breaks I usually start with an ANC of 1.5 and plts at 125. In the third week they start to drastically head south.  Off the last break and into my 4th week of 70 mg generally runs true is that my anc is 0.99 plts are 60.  However, my graphs and analysis compared to other 4 week period of resuming Sprycel  would tell me that this is a pivatol week. If the charts are right my anc should fall to 0.87 and plats down to 30. I have my weekly blood test this Friday. I have stopped my BP medicine and gone on a diet of vegatables, fruits and various nuts and have lost 15 pounds in 3.5 weeks. I was experiencing very dizzy spells while on the BP medicine and read that it could(but not aways) reduce platlet counts. I am working out as wel. All this is done is to stay healthly and I feel so much better with the weight loss and walk 3 miles a day

I am at the Cleveland Clinic with my Specialist and they specializes in BMT also. Not sure exactly how to push the specialist in the direction of a lower dose. How did you get involved with Dr. Cortes, a call and a office visit? I think logistically it would be very hard to pull off being thousands of miles a way and rebuffing a great hospital that is 45 minutes away. I know it is my life I am dealing with but did read an article that shows that generally Sprycel is approx. 50% harder on plts and anc than Tasignia althogh I have 0 side efects from Srycel. My Specialist wants to go the route of Stim shtots if my Anc goes below 0.5 and maybe a transfusion or another break if my platlets hit the mid 20k.  This board is very helpful but this may be something to take off line. My email address should you want to begin a dialogue is jcccml411112@yhoo.com. Please share with the board so everyone can learn and if you want to exchange info  via email that works to

Thanks,

Johnc

[rct]

A lot of people are going to relate a lot of different experiences.  Ours is now 5 years of neutropenia, on Gleevec, the least causer of low anc.  Mrs doesn't have the low platelets though, just 5 years of sub .500 anc, after two years of pretty spectacular results.  Our advice would be to try at all costs to avoid the shots, they can be debilitating.  We would also suggest not having a transplant specialist as a doc.  We have had two of those, both ended bad.  Basically, you aren't a customer if these TKIs are doing you good, so they aren't real interested.  That's how it generally ends up, hopefully maybe won't for you.

If it is any help, our drive from NJ to Oregon netted the same results from Druker, he was quite fine with her taking the stim shots for the rest of her life, as long as the Gleevec did its job.

Good luck with it.

rct

[scuba]

RCT -

Is your wife PCRU?

[rct]

Yes, she is.  She was PCRu in 2008 when the counts got low enough to stop the Gleevec for about two months.  Exepct for the pcr at the end of those two months, she has been U ever since.  Again.  Still.  Something like that.

rct

[scuba]

RCT -

Perhaps she might be a candidate to stop treatment and watch her PCR carefully (once a month or every six weeks)? Her ANC may very well recover and the CML stay away. Or reduce dose (similar to what Trey has done) and do the careful monitoring?

(I was rather surprised to see my own ANC suddenly jump up to solid normal at my last test. After years of myelosuppression and having a new "normal" ANC at 1.0-1.5 become routine, seeing it rise like that had me concerned that maybe I was losing response. Won't know that until my latest PCR results come back this week or next. If I am indeed PCRU (and on only 20mg. Sprycel) - I will definitely stop treatment after two repeat PCRU tests and monitor.)

[rct]

scuba wrote:
RCT -
Perhaps she might be a candidate to stop treatment and watch her PCR carefully (once a month or every six weeks)? Her ANC may very well recover and the CML stay away. Or reduce dose (similar to what Trey has done) and do the careful monitoring?
(I was rather surprised to see my own ANC suddenly jump up to solid normal at my last test. After years of myelosuppression and having a new "normal" ANC at 1.0-1.5 become routine, seeing it rise like that had me concerned that maybe I was losing response. Won't know that until my latest PCR results come back this week or next. If I am indeed PCRU (and on only 20mg. Sprycel) - I will definitely stop treatment after two repeat PCRU tests and monitor.)

No Gleevec and reductions in Gleevec have both brought the same thing, loss of PCRu, and fairly quickly.  Change to Tasigna brought a fabulous anc of .1 in less than a week.  We are about to change docs, a reduction in dose may be in her future again.

[Trey]

John,

You can see that people live at lower levels than you have experienced.  At some points that is necessary.  Avoiding BMT would be well worth it.  I continue to be surprised by how little "Specialists" know about treating CML under various circumstances. 

Don't see BMT docs.  They think BMT is an acceptable alternative, not a last resort.  If they did not believe that, they could not live with themselves.

[CallMeLucky]

I really think Trey makes an important point that people need to think about.  Unless you need a transplant, you should not be treated by a transplant specialist.  I've read posts by others who early on were told they should consider a transplant and the one thing that seemed to be the same in all their stories is that they were being treated at a transplant hospital and/or by a transplant specialist.  You can't be surprised by this outcome.  They are trained to do transplants, in other types of adult leukemia a transplant is often the outcome.  Their point of view is likely skewed by the fact that some of their CML patients come to them after TKI failure for a transplant.  If you are in chronic phase you really should be working with a CML expert.

John - If MDAnderson is too far (note that you would not need to go there for treatment, you could go for a second opinion and have Cortes develop a treatment plan and then be monitored locally).  Ultimately though you would need to go back and forth a few times.  If Texas is not practical, perhaps Michigan is better?  You could drive up to see Dr. Talpaz at University of MI in Ann Arbor, which should be less than 3 hours from you.  He is one of the leading CML doctors in the world.  After meeting with him you would know for certain what you need to do.

http://www2.med.umic...idual_id=129686

[Johnc]

Time to digest all this information, thanks so much for alternatives to look at.

Johnc

[Johnc]

CallMeLucky,

Great suggestion, I emailed Dr. Talpaz and got a response in less than 24 hours. My insurance will work for an apt with him. I am looking for. An approach not to affend my Specialist while going to Dr. Talpaz in case a  last reort ever happens and I do need a BMT.

Does anyone have suggestions on approach let me know as I have only see the Specialist once but a lot of testing and money has been spent.

Johnc

[CallMeLucky]

I think you need to do what is best for you and any decent doctor understands that patients with serious illnesses go for second and third opinions.  I would not get into reasons or try to apologize, just say "I've made the decision to get another opinion from Dr Talpaz to get myself comfortable with the treatment plan and ensure I've explored all options".  If your doctor has a problem with you seeing another doctor, let alone a world renowned CML expert, then that will tell you something about your current doctor and you may decide he is not the best to work with in the long run.  My guess is he will say "that's a good idea, let me know what he says".

Good luck!

[CallMeLucky]

I think you need to do what is best for you and any decent doctor understands that patients with serious illnesses go for second and third opinions.  I would not get into reasons or try to apologize, just say "I've made the decision to get another opinion from Dr Talpaz to get myself comfortable with the treatment plan and ensure I've explored all options".  If your doctor has a problem with you seeing another doctor, let alone a world renowned CML expert, then that will tell you something about your current doctor and you may decide he is not the best to work with in the long run.  My guess is he will say "that's a good idea, let me know what he says".

Good luck!

[Johnc]

CallMeLucky very well said, thanks as I am not the most graceful person and I think that statement should work. Simple and straightforward

Johnc