Suffering, once accepted, loses its edge, for the terror of it lessens, and what remains is generally far more manageable than we had imagined." — Lesley Hazelton, The Right to Feel Bad
Chronic myelogenous leukemia (pronounced my-ah-lah-jeh-nes) is a cancer of the bone marrow. It's also known as chronic myeloid leukemia and sometimes chronic granulocytic leukemia.
When you have CML, your body's marrow — the spongy stuff inside your bones that produces all of your blood cells — sort of goes haywire and produces too many white blood cells, causing a variety of complications. Unlike other cancers, CML is not a solid tumor, and thus the cancer cannot be surgically removed.
Only about 5,000 Americans are diagnosed with CML each year, qualifying it as an "orphan disease." About 2,300 die from it annually.
While medications, including chemotherapy, can help stabilize you for several years, the only known potential cure is a bone marrow transplant. Bone marrow transplants are a relatively new medical procedure, having been around only since the 1980s. Today, transplants also include peripheral blood stem cell transplants (PBSCT) and cord blood transplants. New data are showing that PBSCTs might be more helpful to CML patients than the typical marrow transplant. Cord blood transplants are not likely to be widely used in CML patients, at least for the immediate future.
But new treatments and potential cures are on the horizon. And now, CML could become more like a chronic disease, instead of a certain death sentence for many patients.
Most notable is imatinib mesylate, trade name Gleevec (pronounced glee-veck). It is known as Glivec outside of the United States and was previously known as STI571. It's manufactured by Novartis.
Gleevec, which was approved for the U.S. prescription drug market in May 2001, after just three years in clinical trials, is sometimes referred to in the media as a "magic bullet" because it is thought to target only the enzymes in your body that allow cancerous cells to grow, not your normal healthy cells. Traditional chemo drugs are "generalists;" that is, they can affect (hurt) all the cells in your body, not just the cancerous ones.
New information about Gleevec is continually being reported. But because no one has been on it long enough, it's not known if Gleevec will actually extend survival, which is typically about 6 years in CML (less for those who do not respond at all to medications). And unfortunately, results are not encouraging for people with advanced stages of CML, as relapse seems likely.
Although some media and doctors have reported that Gleevec has few side effects — foolishly, some have even likened it to aspirin — patients often tell a different story. Side effects include nausea, fatigue, bone pain, muscle cramps, diarrhea, loss of skin pigmentation, low platelets, low white counts, rash, and others. Still, many patients do point out that when the alternative could be death, these side effects are tolerable.
In addition, in some patients, Gleevec inexplicably just does not work. These patients try higher and higher doses of Gleevec (the standard does is 400 mg. a day), up to 800 mg., and still do not achieve remission. Researchers are learning more about this and trying combination treatments to help these patients.
Still, people around the world are scrambling to get their hands on Gleevec, even people with other cancers who believe Gleevec might offer them one last hope. Gleevec, so far, has been shown effective only in cancers that express a certain protein, called c-kit, which includes gastointestinomal stromal tumors (GIST) and CML.
Unfortunately, for many people, even in the United States, Gleevec is cost-prohibitive; the average cost is about $2,500 for 120 of the 100 mg. pills, only good for one month. Medicare does not cover Gleevec. In countries that have not officially approved Gleevec for marketing, patients must pay the full amount out of pocket — if they can get the drug at all. Some are trying to obtain it through online pharmacies or in Mexico, but it's thought that because production is so tightly controlled, there's unlikely to be a black market for Gleevec.
In the meantime, research about CML goes on. Other treatments are also being studied, including combining Gleevec with the traditional interferon treatment, leukine, G-CSF, and arsenic trioxide, plus the latest — vaccines.
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Patients on Gleevec have reported numerous side effects, from mild to nuisance to severe enough to require stopping treatment. They might vary depending on whether you have CML, GIST, or some other type of cancer, what dose you are on, your sex, how long you've been on Gleevec, your race, co-existing health problems, and other factors. Some of these side effects are the same as those reported in the official Gleevec prescribing information issued by Novartis. But others are not listed as known side effects; rather, they are reported by patients above and beyond the listed side effects.
As always, you should notify your doctor of any changes in your health and anything you might suspect to be a side effect of Gleevec. Depending on the severity, your doctor might suggest reducing the dose or temporarily stopping the dose.
Please be aware that there is some concern that anything less than 300 mg of Gleevec per day could be considered less than adequate to achieve the desired cytogenetic response. Many patients are now routinely taking 600 mg, and those who are not achieving a cytogenetic response are taking 800 mg.
While there have been media reports suggesting that taking Gleevec is akin to popping an aspirin a day — that is, virtually no side effects — many patients are finding that's not true. Gleevec is a powerful drug and does have known side effects. And the more patients who are on Gleevec, for longer periods, the more patients seem to be reporting side effects. You'll see from reading below that some patients report the opposite effects, for instance, hair loss and hair growth. Your mileage may vary, so to speak.
On the other hand, don't be too quick to attribute every problem to Gleevec. What appears to be a side effect could be the result of some other health problem. Or, it could just be nothing — yes, your imagination. When you have cancer, every little ache, bruise or headache suddenly takes on deeper meaning and more ominous significance, whether legitimate or not. Again, that's why it's important to consult your doctor and to be open and forthright.
Remember, certain side effects need medical attention, such as severe edema, extremely low platelets or a very low absolute neutrophil count (ANC), or anything else that is sudden, unusual, or troublesome. Don't panic if your white count drops into the 2-point range; that's very common. Your ANC and platelets are more of an issue than white count alone. These could require that you temporarily halt Gleevec until your counts increase. Some patients with chronically low counts are now taking G-CSF (trade name Neupogen) to boost up their counts while allowing them to remain on Gleevec; there are concerns that cycling on and off Gleevec could induce resistance to it. Many patients have long-term anemia and take Epogen or Procrit injections, or even transfusions. Your liver enzymes must also be closely watched, as Gleevec can cause liver function problems.
That said, here's a list of side effects patients on Gleevec are reporting, and the treatments and remedies they have tried, for better or worse. Please email me with your own suggestions or reports of side effects not listed here. This list can't really be complete without your help.
Gleevec Side Effects
Bone Pain
The problem: Some experts believe that bone pain is the result of Gleevec killing so many cancerous cells. Still, some patients have said it's so bad that it even hurts to cry. Some say the pain is the worst in the thigh bones and shin bones. Some report that bone pain is worse shortly after starting Gleevec but then diminishes over time, as there are fewer cancer cells to kill off.
Suggestions:
Ibuprofen or other pain relievers
Exercise
Stretching
Jaw Pain
The problem: Achiness in your jaw bones.
Suggestions:
Ibuprofen, Motrin and other pain relievers.
Facial Swelling
The problem: Overall puffiness in your face.
Suggestions:
Keep your head elevated when you sleep, perhaps by using extra pillows or sleeping slightly propped up.
Periorbital Edema
The problem: This usually manifests itself as swelling around your eyes, such as your eyelids or under your eyes. You might feel like you got socked in the eye, or that you simply look like you didn't get enough sleep. Varies in intensity and duration; usually diminishes during the day. One side might be more swollen than the other, which reflects what side you slept on. Some say that salt or alcohol intake at night increases the effect.
Suggestions:
Sleep on extra pillows to keep your head elevated
Do not sleep on your stomach or side
Preparation H around the eyes (do not get in your eyes!)
Tea bags
Muscle Cramps (Or Spasms)
The problem: Most often reported in the thighs, neck, and back. Also reported in the calves, hands, back, shoulders and feet. Some say that the muscles hold pretty tight and they don't let up easily. Some say the cramps are "tetany," which is not typical muscle cramping, but the type that occurs with "lockjaw." Some report that the muscles become hard as a rock and that any movement or touch is extremely painful.
Suggestions:
Slow, regular stretching
Over-the-counter pain relievers
Application of cold compresses
Application of heat compresses
Massage
Clench and unclench your hand
Curl your toes inward or try to point them upward, alternating
For cramping in your calves, try to get up and walk around
Increase intake of potassium (through supplements or food sources); a prescription potassium supplement might be necessary if cramping is severe
Tonic water containing quinine (or a prescription for quinine)
Joint Pain
The problem: Your joints hurt!
Suggestions:
Over-the-counter pain relievers
Glucosamine
If severe, check with your doctor about prescription medication, such as Celebrex
Exercise moderately
Consider visiting a physical therapist
Nausea & Vomiting
The problem: You feel nauseous. Some report that the nausea is at its worst when just starting Gleevec, and that it improves over time. Nausea can worsen, no matter how long you've been taking Gleevec, if you don't take the pills with enough food and water.
Suggestions:
Anti-emetics, such as Compazine or Zofran (which is more expensive than Compazine). Carry spares around wherever you go.
Take Gleevec with plenty of food and water, such as your largest meal of the day, whether that's breakfast, lunch or dinner. Try alternating pills with food; that is, eat some, take a pill, eat some more, take another pill, etc., followed by lots of water.
Remain upright (sitting or standing) for an hour or two after taking the medications
Rash
The problem: In some people, the rash can be so severe that they must stop taking Gleevec, permanently or temporarily. It might itch like mad or just look worse than it really is. It can appear on various parts of your body at various times.
Suggestions:
Creams and lotions, such as Desoximetasone 0.25%
Aveeno products get rave reviews
Prescription allergy medications
Benadryl cream
A soothing gel called Solarcaine
Diarrhea
The problem: This is a common problem for many Gleevec patients. Just like other side effects, it can vary in intensity, frequency and duration. Some patients have a mild form all the time; for others, it's worse when first starting Gleevec. Some patients have had to discontinue Gleevec because of the severity.
Suggestions:
Imodium. This product can also help relieve cramps and gas (which Pepto does not seem to do), and it can be taken long term
Avoid very fatty or spicy foods
Keep a food diary to see which foods might be causing a problem
Drink plenty of fluids
Depigmentation
The problem: A small number of patients on Gleevec, particularly those with darker skin, such as African-Americans, have seen a loss of color or lightening of their skin tone. This can be very unsettling. One case has been reported in the medical literature so far.
Suggestions:
Talk to your doctor.
Eye Bleeds
The problem: The normally white area of eye looks extremely bloodshot and filled with blood. This can be frightening, but most patients have reported that it's less dangerous than it looks.
Suggestions:
Notify your doctor
Wait it out
Consider wearing sunglasses
Hair Loss
The problem: Your hair seems to be thinning or falling out entirely. If it's not related to other problems (like stress or that typical but annoying male pattern baldness), it could be Gleevec. If you were previously on interferon, it could be a lingering side effect of that treatment. Most people report a thickening of their hair while on Gleevec, not thinning.
Suggestions:
Use Nioxin shampoo, which is meant to help chemo patients and others with thinning hair
Fatigue
The problem: You are tired all the time. Or some of the time. Or all the time no matter how much you nap or sleep. Some people have had to quit their jobs. But others say the fatigue gets better over time. For many, this is a very serious issue, because we previously led active lifestyles and it's a difficult psychological adjustment. We don't want to "give in" to the fatigue.
Suggestions:
Check your blood levels (hemoglobin, hematocrit) to see if you are anemic. If so, Epogen or Procrit might be right for you
Exercise. It really can help give you more energy
Don't try to do everything you did before your diagnosis
Give in to the fatigue on occasion and take a nap or sleep in or just lounge on the couch
Ask others — family, friends, neighbors — if they can pitch in to help you around the house, with shopping, watching the kids, or walking the dog, etc.
Weight Gain
The problem: Many patients on Gleevec report serious weight gain, such as 25 pounds or even more. This seems to be one of the prevailing and most common side effects. Some people have suggested that it's simply post-interferon weight gain; that is, we feel so much better since stopping interferon that we eat more. But many of us on Gleevec are eating less (or the same) and exercising more. And many who haven't been on interferon previously still report significant weight gain. There is some question about whether Gleevec can affect metabolism, but we haven't seen any hard data yet.
Suggestions:
Keep a food journal to make sure you aren't eating more than you thought
Exercise
Accept yourself at a higher weight
Fluid Retention (Edema, Bloating, Water Retention)
The problem: Bloating and edema is also a significant and common problem. People typically notice puffiness or bloating in their abdomen, breasts, and around their eyes (see periorbital edema). Some have had swelling in their legs. Edema may be increased with higher dose and in those over age 65. Severe fluid retention (pleural effusion, pericardial effusion, pulmonary edema, ascites) has been reported in a very few cases.
Suggestions:
Drink lots of non-caffeinated fluids
Add potassium-rich foods to your diet, such as bananas, apricots, avocados, broccoli, nuts, orange juice, etc.
Eat more fiber
Lasix or prescription diuretic. Take these with caution, as they can leech potassium and that, in turn, can exacerbate the problem or muscle cramps, in addition to other potentially severe side effects.
Thigh pain, particularly when first starting Gleevec
Loss of taste
Loss of smell
Hearing problems
Cold intolerance
Increase in rheumatoid arthritis and fibromyalgia problems
Concentration/memory impairment
Shingles
Retinitis
Insomnia
General, overall pain or achiness
Low blood sugar
High blood sugar
Stronger fingernails
Thicker, stronger hair
Shortness of breath
Menstrual irregularities
"Fogginess," especially in the first few hours of waking
Other Notes, Cautions & Drug Interactions:
Gleevec does have interactions with certain other medications. For instance, Dilantin and Tegretol blood levels can be increased by Gleevec.
Drugs that can increase the amount of Gleevec in your blood levels can include ketoconazole, itraconazole, erythromycin, and clarithromycin.
Drugs that may decrease your blood level of Gleevec include dexamethasone, phenytoin,
carbamazepine, rifampicin, phenobarbital or St. John’s Wort.
In addition, Gleevec may affect the plasma concentrations of other drugs you are taking, such as simvastatin, cyclosporine, pimozide, triazolo-benzodiazepines, dihydropyridine calcium channel blockers, certain HMG-CoA reductase inhibitors, and warfarin.
Please make sure your doctors are aware of this. And if you aren't sure if you are taking one of these drugs (they might be known under a different brand name), check with your doctor or pharmacy.
At least one patient has become pregnant and given birth to a healthy child while on Gleevec (dose unknown). However, the prescribing information specifically notes that the fetuses in rats suffered teratogenic effects, including exencephaly or encephalocele and absent/reduced frontal and absent parietal bones. In other cases, the fetus simply died or was reabsorbed by the rat's body.
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