12 replies to this topic

[Tim76]

Looking for a little help from all the experts. I was Dx'ed with CML in March, 2006 and have been on 600 mg of Gleevec since about November, 2006. I have been PCRU since probably March or April, 2007. In April, 2010 or so, I started taking calcium and a multivitamin at the same time as my Gleevec. I had a PCR done in May, 2010 and the "b2a2 BCR/ABL" came back as 3.84%. I wrote on this discussion board and a lot of people replied that I should stop taking the extra pills at the same time as the Gleevec. That especially the calcium affected my body's absorption of Gleevec. My Onc wanted me to switch medications and look into a BMT. I told her I stopped taking the extra pills and wanted to have the PCR checked again. In late July, it came back as 0.00%. I stayed on the Gleevec and everything was OK again.

Now, I just had a PCr on January 31, 2011 and the "b2a2 BCR/ABL is back up to 1.94% (b3a2 and e1a2 have always been "not Detected"). I have only been taking the Gleevec since the last high PCR. I have an appointment with my Onc on Wednesday, 02/16 and want to hear from you guys on my options or suggestions.

[Trey]

There is certainly an issue here.  That is not a useful PCR trend line.  I would guess that the 0.00 PCR in July may have been incorrect since you have two others above 1.0%, but of course I do not know.  If it were me, I would want to switch drugs and also have a Kinase Mutation Test done.

[Tim76]

Thanks for your opinion Trey. I plan on asking for another PCR and the mutation test. In a private message, someone suggested another BMB. I haven't had one since my DX in March, 2006. That person said that a BMB might give the better clue as to what is going on in my marrow. What are your thoughts (ananyone else out there who has an opinion for me).

[Trey]

A BMB would be a conservative approach and not a bad idea, but a switch in drugs would fairly quickly show whether a different drug will work or not, and the Kinase Mutation Test would help narrow the 2nd line TKI drug selection.  I would actually switch back to FISH at this point to see if you retain CCyR, and maybe also do a PCR.  But a FISH would be more liekly to show actual status if you have lost CCyR.

[Skittles]

Tim, I and hoping and praying a different TKI will bring your numbers back down.  I wonder if Trey might know how common it is too see a drop after such a long time in MMR.   I was of the understanding that if one reached MMR by 12 or 18 months and held it for a few years the likelihood of progression or large rise in PCR results were almost nil.  Weren't you already MMR when the Dr. increased the drug to bring you to PCRU?  There is so much to learn and I know Trey will help you as well as all the other wonderful folks on this group.  Looking forward to hearing better test results from you soon.   Best Wishes, Skittles

[oscarsst]

Hello -- I was just bumping this topic in the hopes that someone might comment on the question that Skittles posed about rising PCRs once a person has been MMR (and even PCRU) for some time. Thanks and best wishes to everyone. Oscar

[Tim76]

I saw my oncologist yesterday. She knew that I always get copies of my labs and that I follow this forum very closely. She knew that I would be armed with questions. Here are her thoughts:

Considering my long history of PCRU, and my reasoning why I had a upshot back in May, (the calcium supplement), she thinks my most recent PCR is just a bad test. I am going to have another PCR in early April. If that one's the same or trending up, I've lost response to Gleevec, and I'll need to switch. If's it back to PCRU, it will prove the bad test. She does not want to do a FISH, because in her opinion, the PCR is a much more sensitive test. She does not want to do the mutation test, because if I switch, the next generation of TKI should handle most of the mutations she has seen.

I asked if she or anyone in her practice has had a patient with this roller coaster effect. She said yes. Some are bad tests, some are patients that are forgetful about taking their medication. She usually confirms her suspicions by ordering an absorption test. Her practice has had only one patient that has failed Gleevec after a three plus years. Most follow the trend that I read about here - If Gleevec works, and you stay PCRU for three years or so, you are in for the long haul. I usually attend a LLS Meeting hosted by the University of Pennsylvania Cancer Center every year, and they say the same thing about Gleevec. She is planning on attending a conference on CML in New York this weekend and will discuss my situation with the experts. If they suggest another plan of attack, she will call me next week.

I'm still uneasy, but a little calmer than Monday, when I saw my latest PCR. I'm researching names of CML specialists on the east coast, especially in the PA, MD, NY or NJ area. If I continue to trend up in April, I'll probably switch, but be ready with information to get a second opinion. I will welcome anyone's thoughts on my plan of attack or specialist recommendations.

[janner25]

Hi Tim - I am going for a 2nd opinion at the Thomas Jefferson University Hospital - Kimmel Cancer Center.  The doctor I am meeting with is Joanne Filicko.  My neighbor works at Jeff and highly recommended her and my mom's oncologist recommended that doctor's practice as well... Not sure where you go now.  I go to the Helen Graham Cancer Center in Delaware.  If you're interested, I can let you know how I make out?  My appointment is March 7th.

Good luck!

[Trey]

Failing a TKI after 3 years of MMR or CMR is indeed very rare, but it is not zero probability.  Ongoing IRIS study results show that for those who responded well to Gleevec for a few years, there was an approx 99% continued success rate.

I don't know if that is what is going on with Tim since I do not have enough information.  Taking calcium along with the TKI could have decreased TKI uptake for a while and made him more vulnerable, but I do not know.

[Tim76]

Thanks for your opinion Trey, That's what I am hoping for at this time. Basically, I was PCRU in November, 2009. Started taking the calcium around February, 2010 and had the first PRC spike in May, 2010. I immediately stopped taking the calcium and multivitamin. I went back to PCRU in July. I just hoping the January test was abad one. I know that the lab I use, will not take samples after Thursday each week, because they fear the blood will sit around for the weekend. If I remember correctly, I went on Monday, 01/31/11 and we had a bad snow/ice storm on Tuesday/Wednesday. If the blood didn't make it ourt quickly, or got delayed in transmit, it could have been old. Anyway, we'll see for sure in April.

[Tim76]

Janner25,

Please let me know how you make out with Dr. Filicko. I have found a Dr. B. Douglas Smith at Johns Hopkins in Baltimore and Dr. Mitchell Smith at Fox Chase in Philadelphia. If anyone has any experience with any of these three doctors, I would love to hear back from you.

[CallMeLucky]

Hi Tim,

If you venture to NY, Memorial Sloan Kettering is one of the top cancer centers in the world.  I see Dr. Ellin Berman who is a CML specialist.  She has done a lot of research and is one of the co-authors for the NAAC guidelines for treating CML.  Dr. Charles Sawyer is also at MSKCC, he was one of the Dr. who worked with Drucker in the intial Gleevec trials.  There is also another Dr there, but I can't remember his name, I have never seen him, but he is supposed to be very good.  I highly recommend the hospital and the doctors.  Best of luck.

[MJB]

I agree with Lucky. Dr. Berman is wonderful, compassionate and a national expert. I went to her after failing Gleevec and continue to see her.

Take care,

MJB