Why I Chose Lorlatinib for My ALK-Positive Rare Cancer
- Deborah Ann Martin
- 3 days ago
- 28 min read
How Tumor Testing Led to an Individualized Treatment and What the Medicine Has Done to My Body
When my uterine leiomyosarcoma returned, it was found in my bones, including my spine.
We will discuss that recurrence and the stages of my cancer journey in greater detail later. For this article, what matters is that the recurrence forced my doctors and me to look again at everything we knew about the biology of my original tumor.
My tumor testing had shown three important findings.
It was estrogen receptor positive.
It was progesterone receptor positive.
It also had an ALK-positive finding.
I was already taking exemestane to address the hormone-receptor part of the puzzle. But I kept thinking about the ALK finding.
If my cancer had more than one known abnormal feature, I did not want to treat only one of them without asking whether the other could also be addressed.
That question eventually led me to lorlatinib.
Lorlatinib is the generic name.
Lorbrena is the brand name used in the United States.
It is a powerful targeted cancer medicine with serious possible side effects. It is officially approved for a type of ALK-positive metastatic lung cancer, not uterine leiomyosarcoma.
My use of lorlatinib is individualized and off label.
It is also one of the choices my doctors and I made because I wanted to use every reasonable piece of information we had about my rare cancer.
Tumor Testing Gave Us the ALK Finding
People often hear the words "genetic testing" and assume all genetic tests are the same.
They are not.
I had inherited, or germline, genetic testing. That type of testing looks for genetic changes that may have been passed down through a family.
My germline testing did not find an inherited explanation for my cancer.
I also had testing performed on my tumor tissue.
Tumor biomarker or molecular testing looks for characteristics inside the cancer cells. These may include genes, proteins, receptors, and other biological changes that could help doctors understand the tumor or consider treatment options.
That testing showed that my tumor was ER positive, PR positive, and ALK positive.
The exact type of my ALK finding should be described according to the original pathology or molecular-testing report. Unless that report specifically identifies a fusion, rearrangement, mutation, amplification, or another type of alteration, it is safest for me to describe the result simply as an "ALK-positive finding".
The National Cancer Institute explains that biomarker testing may help identify cancer treatments that target particular biological features. It does not guarantee that a treatment will be available or that the treatment will work.
What Does ALK Positive Mean?
ALK stands for "anaplastic lymphoma kinase".
The ALK gene normally provides instructions for making a protein involved in cell signaling. In some cancers, an abnormal change involving ALK may create signals that encourage cancer cells to grow and survive.
The phrase "ALK positive" does not always describe one identical change in every tumor.
Different cancers may have different types of ALK alterations.
That is why the exact laboratory report matters.
Lorlatinib blocks proteins made through abnormal ALK signaling. By interfering with that signaling, it may slow or stop the growth of cancer cells that depend on the ALK pathway. The National Cancer Institute classifies lorlatinib as a tyrosine kinase inhibitor and notes that it is also being studied in cancers beyond its approved lung-cancer use.
Lorlatinib Is a Targeted Therapy
Lorlatinib is not traditional chemotherapy.
Traditional chemotherapy generally attacks rapidly dividing cells throughout the body.
Targeted therapies are designed to interfere with particular proteins or signaling pathways involved in cancer growth.
That does not mean targeted therapy affects only cancer cells or has mild side effects.
The targeted protein may also be involved in normal body functions, and the medicine may affect the brain, nerves, metabolism, heart, lungs, blood pressure, and other systems.
The word "targeted" describes how the medicine is designed to act.
It does not mean the rest of the body cannot feel it.
Lorlatinib Is Approved for ALK-Positive Lung Cancer
The United States prescribing information for Lorbrena states that lorlatinib is approved for adults with metastatic non-small cell lung cancer whose tumors are ALK positive.
For that approved use, testing must confirm an ALK-positive tumor.
My cancer is not lung cancer.
It is uterine leiomyosarcoma.
Using lorlatinib for my rare cancer is therefore an off-label treatment decision based on my tumor findings, medical history, recurrence, available scientific information, and the judgment of my doctors.
The FDA-approved indication does not automatically tell doctors what will happen in someone with my cancer.
That uncertainty is part of rare-cancer care.
Off-Label Does Not Mean Careless
Off-label use means a medicine is being used for a cancer, condition, dose, schedule, or circumstance outside the exact uses listed in its FDA-approved labeling.
Doctors may consider off-label cancer treatment when there is medical reasoning, scientific evidence, tumor biology, experience with similar cancers, or a lack of standard options.
Off-label does not mean the treatment is guaranteed to help.
It also does not automatically mean it is experimental or inappropriate.
It means the decision requires careful thought, informed consent, monitoring, and honest discussion about what is known and unknown.
My doctors and I were not following a standard uterine leiomyosarcoma treatment recipe.
We were trying to use the information my tumor had given us.
I Did Not Want to Treat Only One Piece of the Puzzle
I was already taking an aromatase inhibitor because my tumor was ER and PR positive.
That treatment was intended to lower estrogen signaling that might be useful to hormone-sensitive cancer cells.
But I continued thinking about the ALK finding.
In my mind, if the cancer cell had more than one defective pathway, treating only one pathway might leave another one functioning.
I did not want to make my body a comfortable place for the cancer to grow.
I wanted to make its path difficult.
That was my way of thinking about the decision.
Cancer biology is more complicated than shutting off two simple switches. A tumor can contain many changes, and cancer cells can sometimes develop new ways to survive.
Still, the ALK result was a known piece of information.
I believed it deserved serious medical consideration.
The Recurrence Could Not Be Fully Retested
When the cancer returned in my bones and spine, getting a complete new biopsy was difficult.
The location limited how much safe, useful tumor tissue could be collected.
Because of that, we could not fully retest the recurrent cancer and determine whether it had exactly the same ER, PR, and ALK pattern as the original tumor.
We did not know whether the recurrence was mostly hormone-driven.
We did not know whether ALK was the strongest active pathway.
We did not have a perfect new molecular picture.
What we did have was the original testing.
That left my doctors and me making a decision with incomplete information.
Incomplete information is common in cancer care.
Rare cancer makes it even more difficult.
I Researched Lorlatinib and Took the Information to My Doctor
At that point, I started looking more closely at what my tumor testing might mean for treatment.
My tumor had tested ER positive, PR positive, and ALK positive. We were already addressing the hormone-receptor side of the cancer, but I wanted to understand whether the ALK finding could also be clinically important.
I found professional oncology information that discussed ALK-targeted therapies and the use of ALK inhibitors in cancers with an ALK alteration. One of the drugs listed was lorlatinib.
I printed the information and took it to my cancer doctor.
I was not asking him to treat me based on something I had found on the internet.
I was asking him to look at the professional medical information, consider my tumor's molecular findings, and decide whether any of it could reasonably apply to my situation.
I showed him what I had found and explained why I thought the ALK result deserved another look.
My cancer was not a straightforward case. I had recurrent disease, and the spinal disease was difficult to biopsy. That meant the information we had from my tumor testing mattered even more when we were trying to understand what treatment options might make sense.
My Doctor Agreed to Consider It
My doctor reviewed the information and considered my cancer history, recurrence, tumor-testing results, and the limitations we faced in obtaining additional tissue from the spinal disease.
Eventually, he agreed that there was enough medical reasoning to consider a trial of lorlatinib.
That did not mean lorlatinib was an established or routine treatment for my uterine leiomyosarcoma. It meant my doctor was willing to consider whether a targeted treatment made sense given the molecular information we had about my cancer.
That distinction matters to me.
I was not telling my doctor what treatment I needed.
I was bringing him information, asking questions, and asking him to use his medical judgment.
But getting a doctor to consider a treatment was only one part of the process.
The next challenge was getting the medication.
Because this was an unusual treatment situation, the medical reasoning had to be explained and supported. The prescription was sent through the Department of Veterans Affairs.
Then another part of the fight began.
Getting Lorlatinib Required Two Different Battles
Getting my cancer doctor's agreement to try lorlatinib was only the beginning.
I got the doctors approval but it is an expensive drug. The prescription created two completely different problems.
First, I had to figure out how to get the medication through my insurance and how to afford the deductible and co-pays.
Then I worked through the VA pharmacy process after I had been approved for VA medical coverage with a copay.
These were two separate systems, with two separate sets of problems.
First Came the Insurance and Specialty Pharmacy Problem
My cancer doctor initially sent the prescription through my insurance.
My insurance used a specialty drug distributor for its home pharmacy program. The specialty pharmacy contacted me, and I had to complete additional paperwork with them.
Then I found out what the medication was going to cost.
I was facing more than $9,000 in out-of-pocket costs for a 60 day supply after meeting my insurance requirements. That was my cost after the insurance paid.
That was when I began working with Pfizer's patient assistance program to find a way to cover the cost of the medication.
But the cost was not the only problem.
Lorlatinib is commonly associated with other cancers, including lung cancer. It is rarely used for a cancer like my uterine leiomyosarcoma.
Because of that, the specialty pharmacy's computer system was not set up to process the coding associated with my prescription or the assistance program.
Pfizer provided the information and coding the specialty pharmacy needed, but the pharmacy had to update its system before it could properly process the prescription.
That meant a lot of back-and-forth.
I called the specialty pharmacy. Who said I gave them the wrong code.
I called Pfizer. Who said it was the right code.
I explained what was happening to the pharmacy company.
I waited for pharmacy company system to be updated.
Even after that problem was addressed, there was another issue.
The specialty pharmacy had not updated my information correctly and was still trying to charge me the copays.
I had to contact the specialty pharmacy again. I gave them two ways to handle the payment issue that Pfizer gave me. I had to provide one, wait for the system to be update the bill, and then call back AGAIN to provide the second method of payment.
It became a cycle of calls, paperwork, waiting, checking, and calling again.
And all of this was happening while I was trying to manage cancer.
Then I Pursued the VA Pharmacy Route
By this point, I had finally received a VA rating that allowed me to receive medical coverage through the VA, although I still had copays.
I was receiving my cancer care through Community Care because my cancer doctors were outside the VA.
So my cancer doctor sent the lorlatinib prescription to the VA.
That created an entirely different approval process.
Because my cancer doctor was not a VA-employed physician, the medication had to be reviewed by an in-house VA doctor.
When the VA doctor saw the treatment being requested—lorlatinib for my rare cancer—they wanted additional review.
The in-house doctor contacted the regional gynecological oncology specialist.
We then had additional conversations with her and provided my medical history, information from my cancer doctors, and my genetic and tumor-testing results. The currently petscan, labs...etc for this reoccurance in my spine. We explained why lorlatinib had been chosen and what we were trying to accomplish with the treatment.
The problem is that in the cancer treatement world, they don't use drugs to prevent the growth of cancer, a mantenance drug. However, with my history of a fast growing reoccurant cancer that had been morcellated. Prevention or slowing down the growth has been working. We wanted to have it continue to work.
She reviewed my case and approved the medication.
That approval was significant to me for another reason.
She became part of my cancer care team.
Now, after my PET scans and lab work, we meet with her quarterly. We review my results and discuss what my cancer doctor has found and what is happening with my ongoing treatment.
Even After Approval, the VA Pharmacy Had Another Step
The VA approval did not mean the medication simply appeared at the pharmacy.
Because lorlatinib is a specialty medication, the VA pharmacist had to obtain authorization through another pharmacy process before it could be supplied.
So even within the VA, there were multiple people and departments involved in getting the medication approved and dispensed.
It took coordination between my Community Care cancer doctor, the in-house VA doctor, the regional gynecological oncology specialist, VA pharmacy staff, and the specialty pharmacy process.
Eventually, the pieces came together.
I was able to receive the medication through the VA pharmacy with my VA copay which was a whole lot cheaper. I could now afford to take the medication.
Two Different Systems. Two Different Battles.
Looking back, I don't want to combine these experiences because they were not the same problem.
The insurance route was a battle over cost, specialty-pharmacy processing, coding, copays, and Pfizer assistance.
The VA route was a battle over clinical review, authorization, specialty-pharmacy requirements, and coordinating care between my outside cancer doctors and VA clinicians.
Both eventually worked.
But neither was simple.
And neither happened automatically because my doctor had written a prescription.
That is one of the things I have learned about cancer care: sometimes getting the treatment your doctor has prescribed requires you to become the person connecting all the systems together.
You have to know who has the prescription.
Who has approved it.
Who is waiting for information.
Who needs another form.
Who needs to update their system.
And who needs to make the next call.
I was doing all of that while I was also trying to live with cancer.
Sometimes the Manufacturer Can Help
One thing I have learned through all of this is that when you are prescribed an expensive or unusual medication, it can be worth finding out who manufactures it.
The manufacturer may have programs that can help with the cost of the medication. Depending on the medication and the patient's circumstances, there may be financial assistance, copay assistance, patient assistance programs, or other resources available.
But financial help is not always the only resource.
Some manufacturers also have information lines where patients can speak with someone about the medication, including questions about possible side effects and other medication-related concerns.
That does not replace talking with your doctor or pharmacist. But when you are dealing with a medication you may be taking for months or years, having another source of medication-specific information can be helpful.
I did not know to look for these resources when I first started navigating cancer treatment.
Now I know that when I am prescribed a medication, especially an expensive or less commonly used one, I also look up the manufacturer.
I want to know:
Is there a patient assistance or financial support program?
Is there a copay assistance program?
Is there a patient support number?
What information does the manufacturer provide about the medication?
Who can I contact if I have questions about side effects?
Sometimes getting the medication is only the beginning.
The next challenge can be learning how to live with what the medication does to your body.
I had been taking exemestane for about four years and had to deal with it's side effects.
And lorlatinib came with its own set of side effects.
The Mental Side Effects Were Horrible for Me
Lorlatinib is unusual among cancer medicines because of the range of possible central nervous system effects.
The manufacturer warns that it may cause changes involving:
Thinking
Memory
Mood
Speech
Sleep
Mental status
Hallucinations or other psychotic effects
Seizures
Suicidal thoughts in some patients
In clinical studies of the approved dose, the manufacturer reported central nervous system effects in many patients, although severity and specific symptoms varied.
My mental side effects at 100 milligrams were horrible.
I am not going to give those symptoms a more exact medical label until we document precisely what I experienced and what my doctors recorded.
What matters is that the effects were serious enough to interfere with my ability to live normally and continue safely at that dose.
Mental Changes Must Be Reported Quickly
A person taking lorlatinib should report new or worsening changes in thinking, memory, mood, speech, behavior, sleep, or mental status.
Loved ones may notice changes before the patient does.
The person taking the medicine may not recognize that their thinking or behavior has changed.
Family members should not assume a serious change is merely stress, aging, personality, or ordinary cancer fatigue.
The oncology team needs to know.
Emergency help is needed for suicidal thoughts, severe confusion, seizures, hallucinations, loss of consciousness, or another immediate danger.
Patients should not stop or change lorlatinib on their own unless emergency clinicians direct them to do so.
I Asked to Reduce the Dose
I wanted to continue addressing the ALK finding.
I did not believe I could continue living with the 100-milligram mental effects.
I asked my doctors to reduce the dose to 50 milligrams.
My medical team reviewed the situation and agreed.
The official prescribing information provides dose reductions to 75 milligrams and then 50 milligrams for adverse reactions in its approved use. It states that lorlatinib should be permanently discontinued if a patient cannot tolerate 50 milligrams once daily.
My dose reduction was a medical decision made with my doctors.
It should not be copied by another patient without professional guidance.
A Dose Reduction Was Not Giving Up
I originally wanted the full dose because I wanted the medicine to fight the ALK pathway as strongly as possible.
But the highest dose is not useful if the patient cannot safely remain on it.
The purpose of treatment is not to prove how much suffering a person can tolerate.
The purpose is to find a medically reasonable balance between treating the cancer and protecting the person taking the treatment.
Reducing the dose gave me a way to continue lorlatinib with fewer mental effects than I experienced at 100 milligrams.
That does not mean all the side effects disappeared.
They did not.
Lorlatinib Changed My Blood Sugar Quickly
Soon after I began lorlatinib, my blood sugar rose dramatically.
From my perspective, it felt as though I became diabetic overnight.
I went from managing my health one way to suddenly needing continuing diabetes care.
Lorlatinib is known to cause new or worsening high blood sugar in some patients. The manufacturer recommends checking blood glucose before starting treatment and during treatment. It may be necessary to begin or change blood-sugar medication when hyperglycemia develops.
I cannot prove that lorlatinib is the only factor involved in every part of my diabetes.
Weight, family history, other medications, prior treatments, activity level, diet, stress, and other medical conditions may also affect blood sugar.
What I can say is that the major change happened immediately after I began the medicine and has remained part of my care.
High Blood Sugar Became Another Chronic Illness
My doctors and the VA worked with me to find medications that would control the diabetes.
We tried several medicines over approximately a year.
The numbers improved, but my A1C remained higher than my team wanted.
Now my doctors are changing the medication plan again and considering or beginning treatment with Ozempic, depending on where we are in the process when this article is published.
That treatment decision belongs to the clinicians managing my diabetes.
The larger point is that one cancer medicine created another major healthcare problem that now requires:
Blood tests
A1C monitoring
Additional prescriptions
Diet decisions
Medical appointments
Medication adjustments
Monitoring for complications
A pill taken to help control cancer can create an entirely new branch of medical care.
Signs of High Blood Sugar Should Not Be Ignored
The manufacturer advises patients to report symptoms such as:
Increased thirst
Urinating more often
Increased hunger
Nausea
Weakness
Unusual tiredness
Confusion
Severe hyperglycemia can become dangerous. I had nearly lost my sister. I didn't want that to happen to me.
A person taking lorlatinib should not assume these symptoms are ordinary fatigue or treatment effects without discussing them with the care team.
My Cholesterol Also Increased
Lorlatinib can cause significant increases in cholesterol and triglycerides.
The manufacturer reports that increased lipid levels are common and recommends checking cholesterol and triglycerides before treatment, after one and two months, and periodically during treatment. Some patients need new cholesterol-lowering medication or changes to existing medication.
My cholesterol increased after I began lorlatinib.
My doctors worked with me to find medication that could bring the numbers down. It was important because the chemo had caused some heart condition. High colesterol is not good for the heart.
This is another reason maintenance treatment is not simply taking one pill.
It is taking the cancer medicine and then monitoring what the cancer medicine changes.
Cholesterol Monitoring Is Part of Treatment
A person may feel completely normal while cholesterol or triglycerides are rising.
Bloodwork is needed.
Useful questions include:
What were my levels before lorlatinib?
When will they be checked again?
Have they changed significantly?
Do I need medication?
Could the cholesterol medicine interact with lorlatinib?
Does the dose need to change?
Are my liver tests normal?
What lifestyle changes are medically safe for me?
Diet and activity may help some people.
They may not be enough to control medication-related lipid changes.
The care team should guide treatment.
I Developed Severe Neuropathy
Lorlatinib also affected my nerves.
I developed significant neuropathy in my hands.
Sometimes I feel neuropathy in my feet.
At its worst, the pain in my feet can feel as though I am stepping on a piece of glass.
Neuropathy may include:
Numbness
Tingling
Burning
Electric sensations
Sharp pain
Reduced feeling
Weakness
Problems with balance
Difficulty using the hands
Peripheral neuropathy is listed among the most common side effects of Lorbrena.
Neuropathy Affected My Sleep
The nerve pain used to become severe nearly every night.
It made it difficult for me to sleep.
Pain is often worse when the room becomes quiet and there are fewer distractions.
Losing sleep then adds another layer of fatigue, brain fog, stress, and difficulty working.
The neuropathy did not stay in my hands or feet.
It affected the rest of my life through the sleep it took away.
I Use a B-Complex Supplement
I began taking a B-complex or vitamin B12 supplement with my healthcare team’s knowledge.
It has not removed the neuropathy.
I still have painful nights.
But in my experience, the pain no longer prevents sleep every single night. Many nights are more manageable.
That is my personal experience.
It is not proof that B vitamins treat lorlatinib-related neuropathy.
A patient should not begin high-dose B vitamins without speaking with a physician or pharmacist.
Some vitamin deficiencies can contribute to neuropathy, but excessive vitamin B6 can also cause or worsen nerve damage.
Testing, supplement doses, kidney function, diabetes, medication effects, and other possible causes need to be reviewed by professionals.
Diabetes Can Also Affect the Nerves
One challenge in my situation is that lorlatinib is associated with peripheral neuropathy, and diabetes can also cause nerve damage. So now I have 2 things affecting my nerves.
That means we cannot always look at one symptom and assume there is only one cause.
My medical team must consider:
Lorlatinib
Diabetes
Previous cancer treatment
Vitamin levels
Spine problems
Nerve compression
Other medications
Circulation
Additional medical conditions
Symptoms may have more than one contributing cause.
Treating the diabetes may help protect the nerves even if lorlatinib is also involved.
Lorlatinib Can Cause Swelling
The manufacturer lists swelling of the hands, arms, legs, and feet, known as edema, among the most common side effects.
Swelling can affect comfort, shoes, movement, and balance.
New or worsening swelling should be reported, especially if it occurs with:
Shortness of breath
Chest pain
Rapid weight gain
One-sided leg pain
Redness
Sudden weakness
Swelling has many possible causes.
It should not automatically be blamed on the medicine without medical evaluation.
Weight Gain Is Also Reported
Weight gain is another common effect reported with lorlatinib. In one year I gained over 60lbs.
Having hypothyroidism also contributes to my weight gain. So I have more than one thing that adds weight.
Weight changes during cancer treatment may involve several factors:
Fluid retention
Reduced activity
Metabolic changes
Diabetes
Other medicines
Pain
Fatigue
Changes in appetite
Hormonal treatment
A patient should not be blamed or shamed for a body change that may be connected to treatment and illness.
The goal should be safe medical care, not judgment.
Heart Monitoring May Be Needed
Lorlatinib can affect the electrical signals that control the heartbeat.
The manufacturer warns that it may cause slow or abnormal heart rhythms, including atrioventricular block. It recommends checking an electrocardiogram before treatment and during treatment.
Patients should report:
Fainting
Dizziness
Unusual weakness
A racing or irregular heartbeat
Chest discomfort
Shortness of breath
A person with a history of heart rhythm problems should make sure the prescribing team knows. My care team has me take an electrocardiogram every three months.
Blood Pressure Must Be Watched
Lorlatinib can also cause high blood pressure. I was put on a blood pressure medicine because since the chemo affected my heart, we wanted to safe guard my heart.
The manufacturer recommends checking blood pressure before treatment, about two weeks after starting, and at least monthly during treatment.
Possible signs of dangerously high blood pressure may include:
Severe headache
Dizziness
Blurred vision
Chest pain
Shortness of breath
Many people with high blood pressure have no obvious symptoms.
Regular measurement matters.
Lung Problems Can Be Serious
Lorlatinib can cause inflammation of the lungs, sometimes called pneumonitis or interstitial lung disease. I have not had this issue. I did take my pneumonia shots before my cancer treatment. I meet with my care team about every 6 weeks for bloodwork and checkup of health.
Lung problems can become severe or life-threatening.
Patients should report new or worsening:
Cough
Shortness of breath
Trouble breathing
Fever
Those symptoms may come from infection, cancer, blood clots, heart problems, or another cause.
They require medical evaluation rather than self-diagnosis.
Lorlatinib Can Interact With Other Medicines
Lorlatinib is processed through liver-enzyme systems and can also change how the body processes other drugs.
The manufacturer warns against certain strong CYP3A-inducing medicines because combining them with lorlatinib can create a risk of serious liver injury. Strong CYP3A inhibitors and several other medicines may also require avoidance or dose adjustment.
Patients should provide a complete list of:
Prescription medicines
Over-the-counter medicines
Vitamins
Minerals
Herbal products
Supplements
Occasional medications
A medicine prescribed by a dentist, urgent-care clinic, or unrelated specialist may still interact with lorlatinib.
Every healthcare professional should know the patient is taking it.
Never Start a New Medicine Without Checking
Before beginning an antibiotic, antifungal medicine, seizure medicine, cholesterol medicine, diabetes drug, supplement, or herbal product, I need to make sure the prescriber and pharmacist consider lorlatinib. I even check with the pharmacy when I am trying over the counter medications.
The same applies when stopping a medicine.
An interaction may:
Increase lorlatinib levels
Reduce lorlatinib levels
Increase side effects
Reduce another medicine’s effectiveness
Affect the liver
Change blood sugar
Change heart rhythm
Create another safety concern
The patient should not be expected to understand every enzyme interaction.
That is why pharmacists are an essential part of the cancer care team.
My Care Requires Several Medical Teams
I am monitored by more than one doctor.
I have gynecologic oncology specialists focused on my rare cancer.
I have another cancer doctor who helps manage symptoms and keep me healthy enough to continue treatment. They also handle bloodwork, port flushes, and other continuing needs. VA regional Gynocological oncology doctor is the overseer. She has all the VA doctors, Oncology doctors and medical doctors information. My case is unique and she keeps an eye on it.
My company insurance primary care doctor help manage the neuropathy, pain, mobility, and other medical problems like the flu that have developed. This is non-cancer related. VA has taken over a lot of my doctors, foot, eye,cardiology, cpap and more. These are organized by my VA primary care doctor who helps with my community care referrals, scheduling specialty doctors and so much more.
Lorlatinib does not affect only one part of my body.
My care cannot come from only one narrow viewpoint.
Monitoring Is Part of Taking Lorlatinib
My ongoing monitoring may include:
Cancer imaging
Blood glucose
A1C
Cholesterol
Triglycerides
Liver tests
Kidney function
Blood pressure
Electrocardiograms
Mental and neurological symptoms
Neuropathy
Swelling
Breathing symptoms
Medication interactions
Weight changes
General bloodwork
The exact schedule is based on my individual care plan.
Patients should follow the schedule set by their own oncology team.
Maintenance Does Not Mean Mild
People may hear that lorlatinib is a maintenance drug in my treatment plan and assume that means it is light treatment.
It is not chemotherapy given through an infusion.
I take it at home.
That can make it look easier.
But maintenance medicine can create major physical, neurological, metabolic, emotional, and financial burdens.
Taking a tablet at home does not mean the treatment is harmless.
The treatment follows me everywhere because the medicine remains active every day.
The Medicine Created More Medical Appointments
Lorlatinib added doctors and appointments to my life.
I needed help with:
Blood sugar
A1C
Diabetes medication
Cholesterol
Neuropathy
Mental effects
Dose changes
Bloodwork
Echocardiogram
Medication interactions
Long-term monitoring
Eye doctor (Diabetes Check)
Foot doctor (Diabetes check) and more
The medicine intended to help control one cancer pathway created several other health problems that now need their own management plans.
That is the cost of the choice I made and continually make.
Why I Continue Taking Lorlatinib
Someone reading this article may ask:
“Why would you keep taking a medicine that caused all of that?”
I continue because my original tumor had an ALK-positive finding.
My cancer returned 2 times.
I wanted to address the known tumor biology rather than ignore it.
I have survived five years!!!!!!
I cannot prove exactly how much lorlatinib has contributed to that survival.
Surgery, chemotherapy, radiation, hormone treatment, surveillance, treatment of recurrence, faith, medical care, and many other factors are part of the story.
There is no second version of my life showing what would have happened without lorlatinib.
That uncertainty works both ways.
I cannot prove it is the reason I am alive.
I also cannot prove I would be in the same place without it.
My Treatment Is a Tradeoff
Lorlatinib may be helping make it more difficult for ALK-related cancer signaling to continue.
It has also made some parts of my daily life much more difficult.
I live with:
Diabetes
High cholesterol
Neuropathy
Mental side effects
Medication changes
Bloodwork
Specialist care
Continuing uncertainty
I chose the treatment with an understanding that there could be risks.
Living with the actual risks is different from reading them on a page.
The tradeoff must be reviewed repeatedly with my doctors.
Side Effects Are Different for Every Person
My experience should not be treated as a prediction of what will happen to someone else.
Some patients may take lorlatinib without developing diabetes.
Some may have cholesterol changes but limited neurological symptoms.
Some may have swelling, weight gain, fatigue, or thinking problems.
Others may need dose reduction, a temporary hold, or permanent discontinuation.
The manufacturer’s side-effect list describes possibilities observed across groups of patients.
It does not tell one individual exactly what will happen.
Personal medical history, other drugs, age, organ function, cancer history, dose, and many other factors can affect the experience.
Report Side Effects Before They Become Unmanageable
Patients should not wait until they are unable to function before telling the oncology team what is happening.
Report:
Thinking or memory changes
Mood or personality changes
Hallucinations
Speech changes
Sleep changes
Seizures
Numbness or burning
Severe nerve pain
Difficulty walking
Swelling
Rapid weight gain
Increased thirst or urination
High blood-sugar readings
Chest pain
Fainting
Irregular heartbeat
New cough
Breathing difficulty
Severe headaches
Vision changes
A symptom may not require stopping the medicine.
The team cannot help manage a problem it does not know exists.
Do Not Change the Dose Alone
Lorlatinib should be taken exactly as prescribed.
The manufacturer states that patients should not stop the medicine or change the dose unless instructed by their healthcare provider. If a dose is missed, it may be taken unless the next dose is due within four hours. Two doses should not be taken at the same time. If vomiting occurs after a dose, another dose should not be taken to replace it.
These are general manufacturer instructions.
Individual directions should come from the prescribing team.
Keep a Daily Symptom Record
A symptom log can help doctors decide whether a problem may be related to lorlatinib and whether treatment needs to change.
Record:
The date
The lorlatinib dose
The time it was taken
Mental or mood changes
Memory problems
Sleep
Neuropathy
Blood-sugar readings
Blood pressure
Swelling
Weight
Pain
Falls or balance problems
New medicines
Missed doses
What improved or worsened symptoms
Patients dealing with brain fog should not have to rely on memory alone.
A loved one may also help document changes.
Questions to Ask Before Starting Lorlatinib
What exact ALK finding was found in my tumor?
Is it a mutation, rearrangement, fusion, amplification, or another result?
Why do you believe lorlatinib may help my cancer?
Is this an FDA-approved or off-label use?
What evidence supports using it for my situation?
What benefit are we hoping for?
What is the starting dose?
What side effects require an urgent call?
What bloodwork is needed before treatment?
Do I need an EKG?
How will cholesterol and blood sugar be monitored?
Could it interact with my medicines or supplements?
Who should I contact after hours?
What would cause the dose to be reduced or stopped?
Questions to Ask During Treatment
Are my blood sugar and A1C changing?
Are my cholesterol and triglycerides controlled?
Could my neuropathy come from lorlatinib, diabetes, or both?
Are my mental symptoms serious enough to change treatment?
Is the current dose still appropriate?
Are my liver and kidney tests stable?
Do I need heart monitoring?
Could a new medicine interact with lorlatinib?
Is the treatment still believed to be helping?
What would make you recommend a temporary hold?
What would make you recommend permanent discontinuation?
How long do you expect me to continue?
Questions Loved Ones Can Ask
Loved ones can help without making the treatment decision for the patient.
They can ask:
“Have you told your doctor about this change?”
“Would you like me to write down what I am noticing?”
“Can I attend the appointment?”
“Do you want help organizing your medication list?”
“Is your blood sugar within the range your doctor gave you?”
“Do you feel safe walking?”
“Are you having thoughts of harming yourself?”
“Do we need urgent help?”
Family observations can be especially important when a medication affects thinking, mood, or behavior.
What I Wish Someone Had Told Me
I wish someone had explained ALK in everyday language.
I wish I had understood sooner that an ALK-targeted medicine used for lung cancer might sometimes be considered for another cancer with an ALK finding.
I wish there had been more research involving people with uterine leiomyosarcoma like me.
I wish someone had explained how quickly lorlatinib could affect blood sugar and cholesterol.
I wish I had known that the words “mental side effects” could become severe enough to require a dose change.
I wish I had known that neuropathy could feel like stepping on glass.
I wish someone had warned me that treating one cancer pathway could create several new chronic medical conditions.
Most of all, I wish someone had told me:
“Targeted treatment still affects the whole person. Tell your care team everything, even when you are afraid they may stop the medicine.”
Hope for Today
My tumor testing did not give me certainty.
It gave me another piece of information.
My cancer was ER positive, PR positive, and ALK positive.
When the cancer returned in my bones, we could not safely obtain enough tissue to create a complete new molecular picture.
I had to decide whether the original ALK finding still mattered enough to pursue.
I researched.
I found professional information.
I showed it to my doctor.
I explained why I believed treating only the hormone-receptor portion of my cancer left an important question unanswered.
My doctor listened.
The VA eventually worked with us.
I began lorlatinib at 100 milligrams.
The mental effects became too severe.
I spoke up.
My doctors reduced the dose to 50 milligrams.
Then I had to face new problems.
My blood sugar rose.
I began living with diabetes.
My cholesterol increased.
Neuropathy affected my hands and feet.
Some nights the pain felt as though I were stepping on broken glass.
I needed more doctors, more bloodwork, more medicines, and more monitoring.
That is the truth about targeted treatment.
It gave me another way to fight my cancer.
It also gave my body another set of battles.
I continue taking lorlatinib because I wanted to use everything we knew about my tumor to make it more difficult for the cancer to grow.
I cannot promise that my choice would be right for another patient.
I cannot promise that the medicine is the reason I am alive.
I can say that I made the decision with my doctors, based on my tumor testing, my recurrence, the available science, and my willingness to live with uncertainty.
Personalized cancer treatment is not always precise or easy.
Sometimes it means using an imperfect map because there is no well-traveled road.
It means watching the cancer.
It means watching the treatment.
It means protecting the brain, nerves, heart, lungs, blood sugar, cholesterol, and every other part of the person carrying the disease.
Lorlatinib is not simply the pill I take for an ALK finding.
It is a continuing medical decision.
Every day I take it, my care team and I are balancing the possibility of cancer control against the cost to the rest of my body.
I am grateful to have an option.
I am also honest about what that option has required from me.
Frequently Asked Questions
What is lorlatinib?
Lorlatinib is a targeted cancer medicine known as a tyrosine kinase inhibitor. It blocks proteins made through abnormal ALK signaling and may slow or stop the growth of ALK-positive cancer cells. It is also called Lorbrena.
What are the generic and brand names?
Lorlatinib is the generic name. Lorbrena is the brand name used in the United States.
What cancer is lorlatinib approved to treat?
It is FDA approved for adults with metastatic ALK-positive non-small cell lung cancer.
Is lorlatinib approved for uterine leiomyosarcoma?
No. Its use for my ALK-positive uterine leiomyosarcoma is an individualized, off-label treatment decision.
What does ALK positive mean?
It means tumor testing found an abnormality or positive result involving the ALK pathway. The exact type of ALK change should be confirmed from the molecular-testing report.
Why was I given lorlatinib?
My original tumor had an ALK-positive finding. After recurrence, I advocated for considering a medicine that targeted ALK rather than treating only the ER- and PR-positive part of the tumor biology.
What is the usual lorlatinib dose?
For its approved lung-cancer use, the recommended dose is 100 milligrams once daily. The label provides reductions to 75 milligrams and 50 milligrams for adverse reactions.
Why was my dose reduced to 50 milligrams?
I developed severe mental effects at 100 milligrams. After discussion and medical review, my doctors agreed to reduce the dose.
Can lorlatinib cause mental changes?
Yes. The manufacturer warns about changes in thinking, mood, speech, sleep, mental status, hallucinations, seizures, and suicidal thoughts. New or worsening symptoms should be reported promptly.
Can lorlatinib raise blood sugar?
Yes. Lorlatinib can cause new or worsening hyperglycemia. Blood sugar should be checked before and during treatment.
Can lorlatinib raise cholesterol?
Yes. Increased cholesterol and triglycerides are common. Monitoring is recommended before treatment, after one and two months, and periodically during treatment.
Can lorlatinib cause neuropathy?
Yes. Peripheral neuropathy, including numbness and tingling in the arms and legs, is listed among the common side effects.
Can I take B vitamins for neuropathy?
Do not begin high-dose supplements without professional guidance. Deficiencies may contribute to neuropathy, but excessive vitamin B6 can also damage nerves. The cause of neuropathy should be evaluated.
Should I stop lorlatinib if I have side effects?
Do not stop or change the dose on your own. Contact the prescribing team. Depending on the problem, the team may treat the symptom, hold the medicine, reduce the dose, change treatment, or discontinue it.
Does lorlatinib interact with other medications?
Yes. Lorlatinib has important drug interactions. Patients should give every doctor and pharmacist a complete list of prescriptions, over-the-counter products, vitamins, and supplements.
Support on Your Journey
Targeted treatment can feel lonely because other people may not see it as active cancer care.
They see a pill.
They may not see diabetes, neuropathy, cholesterol medication, mental changes, bloodwork, dose reductions, insurance approvals, and the fear of what could happen if the treatment stops.
Surviving Life Lessons Community Groups are being formed so people can discuss rare cancer, targeted treatment, medication side effects, chronic illness, and the complicated choices involved in long-term survival.
You deserve to understand why you are taking a medicine.
You also deserve a care team that listens when that medicine changes your body, mind, and daily life.
Find Your Community
No one should have to face life's challenges alone. At Surviving Life Lessons, we believe in life survivors helping life strugglers. Explore our growing Community Groups to connect with others who understand your journey, share encouragement, and find hope through meaningful conversations. You'll also have the opportunity to introduce yourself and share your own story of overcoming. Your story matters. It may be the encouragement someone else needs to keep moving forward, reminding them that they are not alone and that hope is always possible.
Your Story Matters
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Drop a comment, Say Hello, and join the conversation.
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Helpful Resources for Your Journey
Explore our collection of books, journals, coloring books, and printable PDFs designed to encourage, inspire, and support you every step of the way.
References
Pfizer. “LORBRENA® (Lorlatinib) Full Prescribing Information."
Pfizer. “LORBRENA® (Lorlatinib) Patient Information.”
Pfizer. “LORBRENA®: What to Expect During Treatment.”
Pfizer. “About LORBRENA®.”
U.S. National Library of Medicine, MedlinePlus. “Lorlatinib.”
National Cancer Institute. “Definition of Lorlatinib.” NCI Dictionary of Cancer Terms.
National Cancer Institute. “Lorlatinib.”
National Cancer Institute. “Biomarker Testing for Cancer Treatment.”
National Cancer Institute. “Off-Label Drug Use in Cancer Treatment.”
NCCN. NCCN Guidelines for Patients: Uterine Cancer .https://www.nccn.org/patients/guidelines/content/PDF/uterine-patient.pdf
About the Author:
Deborah Ann Martin is the founder of Surviving Life Lessons, a published author, poet, speaker, and trainer with over 20 years of management experience across multiple industries. An MBA graduate, U.S. veteran, single mother, and rare cancer survivor, Deborah brings both professional expertise and lived experience to her writing on resilience, leadership, personal growth, and overcoming adversity. Her mission is to empower others with practical wisdom and real-life insight to navigate life’s challenges with strength and purpose.
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