Discussions that mention gleevec

Leukemia board


Hello,
I am new here and enjoyed reading your post! I like your sense of humor. My sister was just diagnosed with CML yesterday. They have put her on Gleevec.
Not knowing anything at all about CML, I immediately began scouring the web for information and am so glad I ended up here. I live hundreds of miles away from her and so am not privy right now to all the details of her test results...my question is, do you know if CML ALWAYS progresses to later stages or can a person just stay in the first stage forever with the help of medication. I hope this is not too naive or vague a question. I do understand that it depends upon the person, but I am asking "in general".
thank you so much for any ideas you may have...
doug,

my mother-in-law has been fighting CML for the past 3 years. She was placed on Gleevec first. She did awesome on it until it stopped working after about 8 months. She was then put on Sprycel. The sprycel dropped her numbers so low, she was in and out of the hospital for blood transfusions to help bring her numbers back up. She did test positive for the Philadelphia mutation...is this the same as the T351I you are talking about?

Her doctors have noticed that people who are hispanic have a very hard time tolerating the meds compared to persons of different ethnicities....how crazy is that? They do think the Sprycel was working...but it was working too well....killing everything.

She is now being placed on Tasigna (nilotinib). Did you try the other two first?

I am very glad to hear that you are doing well!!
Neens,

I have read some things on the internet about mutations and relapse. I am not sure how much of what I have read might be accurate - or that I understand it completely. I understand that mutations are the main reasons that newer drug treatments have been developed. Sprycel and Nilotinib are both much more effective against mutant types of CML than Gleevec.

The Philadelphia mutation is the basic chromosome mutation that is common in CML patients. Presence of this mutation (referred to as Ph+) is the basic confirmation of leukemia as a diagnosis. Ph+ happens when there is an incorrect copy made by swapping a piece of chromosome 9 for a piece of chromosome 22. This is sometimes called the bcr-abl gene. "Abl" is a gene named after the discoverer whose name was Abelson. Bcr refers to the "breakpoint cluster region" where the gene most often comes apart.

The gene mutations are not necessarily identical for each patient. Last I read there were more than 40 slightly different mutations identified. Gleevec is effective against the most common mutations, about half of the total. Sprycel and Nilotinib are effective against nearly all of the identified mutations. None of these is effective against one particular mutation labeled T315I. T315I is a relatively rare mutation - more typical of advanced stages of the disease.

Beating T315I is the next big step in treating CML. Lots of things have been found to kill it in the lab, but few (if any) are ready for human testing, yet. Still, with that much attention focused on it, perhaps beating T315I is not too far into the future.

Wow. Sprycel worked too well - that is amazing. I read once that penicillin was so effective against bubonic plague that it had to be given in small, sub-critical doses at first to avoid having so many of the killed plague cells accumulate that the patient's kidneys shut down. I'm a little surprised that your mother-in-law's treatment program swapped medication rather than decreasing the dose. On the other hand, perhaps changing to a different medication will help prevent proliferation of a wider variety of mutations - relieve the side effects.

Nilotinib was actually my first (and only) treatment protocol. I was given Hydrea for a few days before starting on Nilotinib. The hydrea was needed to kill off the excess (and malformed) white blood cells. I never took Gleevec, and was considered for a test protocol for Sprycel, but I did not match the eligibility requirements. I was eligible for the Nilotinib test, so I enrolled in that.

I am always asked about any side effects in my follow up visits. I can't actually report anything that I am sure is a side effect. My hair is turning grey and brittle, my skin is dry and sometimes flakey. However, those are also primary effects of being 53 years old, so who is to say if it is the disease, the drug, or just my age? I am regularly tested for the worst side effect - extended QT interval. This is a heart rhythm problem that some class of drugs (called CYP3A4 inhibitors) display that can cause the heart to get "out of synch" with itself. Nothing like that has ever shown on my EKGs, so far.

If you want to know more about the disease, treatments, tests, etc. I suggest contacting the Leukemia & Lymphoma Society or check out their web site. They have a lot of information and do a great job explaining it in terms easier to understand than articles that are often intended for doctors or researchers. The hospital your mother-in-law is being treated at probably can put you in touch with information resources, too.

Try not to worry. It sounds like your mother-in-law is in good hands: yours, her doctor's and God's.

Doug
Doug I am wondering if you know anything about fluid retention as a side effect of Gleevec. My sister began on that drug and is now retaining so much fluid that she is not herself! I feel so badly for her. Her doctor said that she isn't retaining ENOUGH to warrant a diuretic as the diruetic itself has consequences. I wonder if there is any thing she can do as far as holistic herbs or drinks or anything that may help this. thank you so much.
Neens,

Thanks for your kind words.

MD Anderson is a most remarkable place. Your mother-in-law will be in the best of hands there. Aside from the medical miracles that commonly take place, the entire staff has a positive attitude that is both engaging and infectious. I can also vouch that everyone on staff is top-notch in their field. Take blood sampling for example. I have had some techs (elsewhere) leave a bruise or miss the vein, or any number of problems - but not at MD Anderson. On the day I was admitted, there was another patient who had arrived from Tennessee who was severely dehydrated and the ER techs were not able get an IV started. No problem, they called in a team that specializes in getting difficult IVs started.

When your mother-in-law comes to Houston, it would be well for her (or her caregiver) to be prepared with a list of questions. Don't wait for the doctor to begin asking questions, ask the nurses, physician's assistants, pharmacists, reception staff, anyone. If they can answer, they will. If they can't, they will often summon someone who can. They know what we are going through and will do whatever they can to minimize the stress.

I could not say for sure that doctors would NOT consider a bone marrow transplant for a patient at ANY age. Like most things in life, there is a "point of diminishing returns". Doctors evaluate each patient as an individual, but must use a statistical basis for predicting the patient's future and developing the most probably optimum course of treatment. Any sort of surgery carries a risk that (statistically) gets worse for older patients. Hypothetically, if there was a healthy identical twin willing to donate bone marrow for a CML patient who was 65 and otherwise in good health, there might be a good statistical foundation for doing a bone marrow transplant.

Given the great statistical success of CML patients taking Gleevec or Sprycel, or Tasigna, a doctor would be foolish to undertake a high surgical risk procedure while less risky alternatives exist.

My prayers and best hopes are for your mother-in-law's remission. Try not to worry too much about test results. Tests take time, and are not universally accurate. A single test result is only one point of data. A trend of test results over time is more definitive.