The following are some questions asked by participants and responses given by the presenting physician during the series of CMLLinks teleconferences sponsored by the Society. Click here to access a replay or transcript of these teleconferences.

• Question: My first bone marrow biopsy six months into Gleevec^® revealed that I had a major cytogenetic response. How often should this type of monitoring be done?  Answer
• Question: Can a person who has become resistant to Gleevec still have hope of reaching a remission?  Answer
• Question: What are the treatment options for someone who has Philadelphia (Ph) chromosome-negative CML?  Answer
• Question: As a CML patient, would I have access to insurance through other employers if I were to change jobs?  Answer
• Question: I'm 60 and I have no donor. Should I consider a stem cell harvest?  Answer
• Question: My 6-year-old daughter was diagnosed with CML two years ago. She's been on Gleevec for a year and a half and has almost reached a molecular response. What is known about how children respond to Gleevec?  Answer
• Question: What type of PCR monitoring do you recommend?  Answer
• Question: Should PCR testing always be done at the same lab?  Answer
• Question: I had a FISH test and was told that I'm in complete cytogenetic remission. Do I still need to get a PCR test?  Answer
• Question: Should PCR testing be done with blood or bone marrow?  Answer
• Question: How often should bone marrow aspirations be done?  Answer
• Question: If I am PCR negative, it is okay to stop taking Gleevec?  Answer
• Question: As a new patient, I would like to know what are the long-term side effects of Gleevec?  Answer
• Question: I have been on Gleevec about a year and am getting good results. My doctor suggested that I consider getting off Gleevec. What would you advise?  Answer
• Question: Would you summarize the status of the patients in the very first Gleevec clinical trial group?  Answer
• Question: My siblings have not yet been tested to see if they could be a transplantation match for me. Should they be tested?  Answer
• Question: My oncologist recently suggested increasing my dosage of Gleevec to 800 mg a day as a way of making my complete remission more durable. What do you think?  Answer

My first bone marrow biopsy six months into Gleevec revealed that I had a major cytogenetic response. How often should this type of monitoring be done?
We don't yet know the ideal interval. But to ensure that you are monitored carefully, I would recommend having cytogenetic testing every three to six months.

Can a person who has become resistant to Gleevec still have hope of reaching a remission?
Yes. If transplant is not an option, we might try increasing the dose of Gleevec. Other options include clinical trials, such as combining Gleevec with other agents and vaccine therapies, in the hope of finding something that gets an optimal response.

What are the treatment options for someone who has Philadelphia (Ph) chromosome-negative CML?
Patients with Ph chromosome-negative CML lack evidence of the translocation, or swapping, of genetic material that produces the abnormal gene BCR-ABL. In most CML patients, it is the BCR-ABL gene that tells the body to produce abnormal white blood cells. While Ph chromosome-negative does not respond to therapies like Gleevec that target the abnormal BCR-ABL gene, there are some standard and some experimental CML treatments that might be useful. But first I'd make sure that you've had thorough testing to confirm that the Ph chromosome is, in fact, absent. Some patients have no evidence of the Ph chromosome upon basic cytogenetic analysis (the mapping of chromosomes that can reveal the Ph chromosome, a translocation of chromosomes 9 and 22), but may show evidence of the BCR-ABL abnormal gene in the more sensitive cytogenetic tests, FISH (flourescent in situ hybridization) or PCR (polymerase chain reaction).

As a CML patient, would I have access to insurance through other employers if I were to change jobs?
There is a federal law, The Health Insurance Portability Act, or HIPAA, that mandates the right of people who are insured through a group plan to switch from one employer to another. The regulations protect you from being subject to a preexisting condition clause under the new plan as long as you do not have a lapse in coverage of more than 63 days.

I'm 60, and I have no donor. Should I consider a stem cell harvest?
While the procedure itself is relatively risk-free, there is no consensus on what to do with the harvested stem cells. Though it seems reasonable to harvest bone marrow cells when they're as clean as possible, I would not want to perform an autologous transplantation on a CML patient until we know more.

My 6-year-old daughter was diagnosed with CML two years ago. She's been on Gleevec for a year and a half and has almost reached a molecular response. What is known about how children respond to Gleevec?
There's much less of a data set on children because there are so few children with CML, but I'm not aware of any difference in how children and adults respond to Gleevec. For someone her age, I would try to find a donor if she doesn't have one already and consider harvesting her own stem cells at the point that she reaches the best possible remission.

What type of PCR monitoring do you recommend?
PCR testing can be either qualitative, which is a "yes/no" answer about whether Ph chromosome-positive cells are present, or quantitative, which tells us how many cells are present. I feel strongly that a quantitative result is preferable.

Should PCR testing always be done at the same lab?
Yes, because there is significant variability from lab to lab. Until a uniform test is developed, it is really critical to use the same lab each time the test is done.

I had a FISH test and was told that I'm in complete remission. Do I still need to get a PCR test?
FISH is a way of looking for the Philadelphia chromosome by examining 200 or 300 cells. While FISH is more sensitive than standard cytogenetic testing, which looks at 20 cells, it is nowhere near the sensitivity level of PCR. So even if you are FISH negative (as 60 percent to 70 percent of CML patients now are), it is important to do the quantitative PCR to see if you have achieved a molecular remission.

Should PCR testing be done with blood or bone marrow?
We have found that the results are comparable whether PCR is done with a sample of blood or bone marrow. The same is true of FISH.

How often should bone aspirations be done?
When a bone marrow aspiration indicates a patient is FISH negative, my practice is to do one more bone marrow aspiration six to nine months later just to make sure there is really a cytogenetic remission. Once that is documented, I follow the patient by periodic PCR tests done on peripheral blood. I would urge you to talk with your doctor about how your disease is being monitored.

If I am PCR negative, it is okay to stop taking Gleevec?
The answer is complicated and not definitive. But the consensus is that even if you are PCR negative, you could still have a very small number of residual CML cells. So that's the reason people stay on gleevec.

As a new patient, I would like to know what the long-term side effects of Gleevec are?
There really haven't been any unusual or surprising long-term side effects that have turned up so far. But the short-term side effects of Gleevec also happen long-term. And a lot of our patients get better over time as they adjust to the side effects and learn how to live with them.

I have been on Gleevec about a year and am getting good results. My doctor suggested that I consider getting off Gleevec. What would you advise?
We can still detect traces of leukemia on PCR in 95 percent of our patients, so if there are any leukemia cells, we recommend leaving patients on long-term therapy. As long as people are tolerating it well, we'd rather leave them on treatment than have to deal with relapsed leukemia. Any time you're not sure about the advice you're getting, you can always ask for a second opinion. You can go armed with your own research and questions. Ultimately, you have to be your own best advocate.

Would you summarize the status of the patients in the very first Gleevec clinical trial group?
The patients in our first test group have a very special place in our hearts. They were the pioneers. Many of them are now coming in for their four- and five-year follow-up visits. Most still have normal blood counts. Many have no detectable Philadelphia chromosome. A few patients have relapsed, but in general these patients are doing well, and we continue to follow them quite closely.

My siblings have not yet been tested to see if they could be a transplantation match for me. Should they be tested?
If transplantation is an option for you, it makes a difference whether you have a related or an unrelated donor. So it is certainly reasonable to test your brothers. It often takes a long time to find an unrelated donor, so if one of your brothers is not a match for you, it is good to know now.

My oncologist recently suggested increasing my dosage of Gleevec to 800 mg a day as a way of making my complete cytogenetic remission more durable. What do you think?
We do not yet know whether higher doses can bring about deeper or more durable remission in someone who is already in a good remission Gleevec is a well-tolerated drug, but it is a powerful one. I would advise you to make decisions with your doctor based on characteristics specific to your own CML.