Jump to content


decisions - questions - thoughts

  • Please log in to reply
7 replies to this topic

#1 cynthia.s


    New Member

  • Members
  • Pip
  • 0 posts

Posted 29 December 2010 - 10:43 PM

Hello Friends -

It has been awhile since I have been on the boards.  But I am needing support and assistance in my decision making processes and recommendations.

First the facts:  From Missouri - my doctor is with the University of Missouri -  DX in June 2009.  Started gleevec 400 mg in July 2009 (after stabilizing my blood counts).  By October 2009 showed Major Molecular Response - under .1 with my pcr results.  For next one year stayed at .03, .05. .04 in my PCR results. 

I have been very satisfied with  my care since dx - especially with the fellow that was part of my healthcare team.  (he left in july 2010)

In January 2010 I took an internship (late masters degree, I am single and 47 - one daughter who lives in DC) in Indonesia - I was on a career track for international humanitarian relief work prior to dx and have continued that track.

In February 2010 my platelet counts plummeted and my dosage of gleevec was cut to 200mg per day (from 400)

In July 2010 - my cbc counts started being high (12,000 - 20,000) during my regular blood checks. In october 2010 my pcr was slightly elevated at .05.  Dr. thought the risk of platelet dropping was greater than the advancement of leukemia - still at MMR - so hold steady (despite my questions that maybe we shoudl be more aggressive).

December 2010 - WBC is hovering in the 20k - 25k mark (I was 410k at dx).  My PCR is .145 - elevated significantly from the past 14 months.

Doctor is increasing my dosage of gleevec to 300 mg.  (we will monitor the platelet count with weekly blood draws and another pcr in 4 weeks).

I am wanting to maintain my role/life/job in Indonesia - up until now my doctor has been very supportive of this choice. At this point the new fellow is supportive (we will establish a baseline pcr in australia or singapore and make collaborative tx connection with hematologist/oncologist in singapore or australia). At this point I am going back to indo - i feel as though sitting around waiting on blood draws in america will be more damaging to my mental state and i can wait for blood draws by being actively engaged in a life/job i love from indonesia.  I can be home in 24 hours if something isn't working - and i have access to labs and good communication systems.


1.  Has anyone else seen an increase in PCR? Did you stay on gleevec (increased dosage) or change to another drug?  (Dr. is worried about resistance)

2.  I need referrals of experts/researchers in Singapore or Australia (both easily accessible from my location in Indonesia).  do you know anyone?  I have not been able to figure out if gleevec is available in singapore, does anyone know?  That will effect my decision regarding whether to collaborate in my healthcare in Singapore or Melbourne.  I have a friend who is the director of the NIH cancer genome center in DC and he has recommended National Hospital in Singapore - says they are state of the art research center and very progressive.

3. I am wanting to change my primary oncologist to someone on one of the coasts - that is more experienced with international movement and travel - will be more comfortable with international healtcare management team and international travel/lifestyle.  I have left a message with Dr. Druker (he is supposedly accepting new patients).....I can go anywhere for my healthcare. So....if you could go anywhere for healthcare who would you choose and why?

Those are my most immediate questions.....I am sure your answers and input will generate more questions. I look forward to hearing from each of you.....


#2 jrsboo


    New Member

  • Members
  • Pip
  • 0 posts

Posted 29 December 2010 - 11:03 PM

the only thing I can speak to is an Onc on a coast.  I am supremely happy with the care I am getting from Dr. Vivian Oehler at Seattle Cancer Care Alliance.  She is amazing, knows alot about CML and does a lot of research on CML at Fred Hutchinson Cancer Research and at University of Washington Medical Center.

Good Luck!!!!


#3 Marnie


    Advanced Member

  • Members
  • PipPipPip
  • 396 posts

Posted 29 December 2010 - 11:24 PM

Hi, Cynthia. .

The only thing I can speak to is PCR and switching meds.  You and I were diagnosed at about the same time, and our PCR numbers look to be similar.  My last test took a big jump to .147, and my doc is having me switch to Sprycel (based on the results of mutation tests. . .waiting on results right now).

Sounds like you are asking the right questions and being smart about making decisions.  I have contacted both Dr. Druker and Dr. Shah via e-mail and received immediate responses from them with answers to my questions.

Good luck!  You sound like an adventurous kind of person!!


#4 GerryL


    New Member

  • Members
  • Pip
  • 0 posts

Posted 30 December 2010 - 03:34 AM

Hi Cynthia,

There is another CML message board which may be of help in regard to Singapore http://asia.groups.y...MLSupportGroup/  Two of the moderators for the board should be able to give you some information Moderators: Royston Hogan (Singapore), and his wife Anjana Rai Chaudhuri (Singapore). Roy and his wife Anjana live in Singapore - Roy was diagnosed with CML in 2002 and is doing very well on Gleevec.

Hope this helps


#5 cometbro


    New Member

  • Members
  • Pip
  • 0 posts

Posted 30 December 2010 - 07:08 AM

GerryL, now that you mention that name (Anjana).  I remember she frequents another CML forum.  Anyone here can actually go there and see more CML posts and experiences.  Yesterday, I actually posted there letting people know about this website, since there is more traffic over here (and more information from what I see), it might actually help some of the CML'ers over there that don't know about this (LLS) website.


#6 VickiW


    Advanced Member

  • Members
  • PipPipPip
  • 65 posts
  • Locationnorthwoods

Posted 30 December 2010 - 09:19 AM

Good morning Cynthia!

I can be of no assistance on your finding specialists, etc.  However, I traveled down a similar road with Gleevec and the outcome was eventual failure and a switch to Sprycel.  I was dxd in March 07 did great the first year reaching MMr then counts started to climb, went from 400 to 600.  Counts dropped and then within months, back up again.  Up to 800 counts dropped but within less than 2 months once more going the wrong way.  Within a short time after that my Onc and I had to face Gleevec had failed completely.  BMB, no mutation, so in spring of 09 I went on Sprycel.  Slow progression down til spring of 2010 PCRU!  However I lost PCRU last fall but have been holding since right around .002.


sorry.  Just corrected my mistake.  It was less than 2 months, not 20 before Gleevec finally failed.  In my defense, the Neuropathy was acting up and it's definitely like playing a crazy video game when you try to type with one hand shaking like crazy

Dxd 2007

started on Gleevec switched to Sprycel 100mg in 2009

PCRU since 2011

20mg Sprycel every other day since Dec. 2014

Began TFR 4-18-16

#7 Trey


    Advanced Member

  • PS Beta Group
  • PipPipPip
  • 1,705 posts
  • LocationSan Antonio, Texas

Posted 30 December 2010 - 09:53 AM

If it were me, I would switch drugs, probably to Tasigna because of the low counts issue.  You need a drug that you can stay on, so a drug switch might work better for you.

#8 anjana


    New Member

  • Members
  • Pip
  • 0 posts

Posted 31 December 2010 - 07:01 AM

Hi Cynthia,

  I am the 'Anjana' folks have been mentioning and I live with my husband in Singapore.  My husband consults CML experts at the Singapore General Hospital which runs all clinical trials.  It is also the hospital which has the PCR in Singapore which is standardized to the International Scale by collaboration with Dr. Hughes in Australia.  So, I would not recommend the National University Hospital for consultation because they are primarily a teaching and research hospital whereas the Singapore General Hospital is the best known in Singapore for treatment of Hematological Malignancies.  Dr. Druker's nurse, Carolyn Blasdel, was my guest in 2006 and gave a talk to patients and caregivers at our hospital so if you are seeing Dr. Druker, mention Singapore General Hospital and myself to her and I am sure she will recommend this hospital as well.

  As I said before, our hospital runs clinical trials so Gleevec, Tasigna and Sprycel are all approved for use in Singapore.  Sprycel and Tasigna may be approved for Gleevec-resistant patients only and not for newly diagnosed patients as yet.  Our doctors are currently going to start running the Ponatinib (Ariad drug) trial here.  The question is, is your insurance going to cover these drugs?  If your insurance covers these drugs, there is no problem regarding availability of these drugs in Singapore.

  Your white blood count is higher than normal so you need to see a doctor soon so that tests can be done.  I would see Dr. Druker soon and get his opinion and then coordinate care with the doctor of your choice in Singapore.  You can write to me, privately at anjana@pacific.net.sg and we can talk further and if you wish, I can connect you with my husband's doctor who is a senior consultant at the Singapore General Hospital and head of the clinical trials unit and the bone marrow transplant unit.  If you stay in Indonesia, you may want to join the AsianCMLSupporGroup, we have mainly US patients and caregivers but some from Asia and Australia as well.  There is also an Indonesian CML Support Group but they converse in Bahasa Indonesia.

  I don't read this board often so it would be good if you contacted me, privately.

Best Wishes,


caregiver to Royston

d/x Jan 2002

400mg Gleevec



1 user(s) are reading this topic

0 members, 1 guests, 0 anonymous users