Symptoms, side effects, or just part of living?

Sorting out what is caused by what, and when to be concerned or not, is tougher than you might think.  For example, everyone has headaches, but headaches caused by cancer progression to the brain, at least in my case, feel different and aren’t helped by ibuprofen , Tylenol , migraine med, or acupuncture.  I knew they weren’t migraines because I used to be tormented by migraines.  That was before acupuncture! Luckily for me, the cancer headaches weren’t bad, just chronic and different – a symptom of cancer, and as the new drug attacks the cancer, they’ve resolved.

Recently I’ve been plagued by serious hand neuropathy .  Now, that could be a symptom as it is caused by the Central Nervous System , and the meninges where my cancer progressed to is part of the CNS.  But, it’s not.  It’s a side effect of my clinical trial targeted therapy drug Lorlatinib.  And, to make sure of this, I was off the drug for a week.  Yup, relief came at day two.  So now I go back on at a reduced dosage.

Other examples include my new high cholesterol (side effect of Lorlatinb), and the body aches which I think are a side effect of the statin that I’m taking for the high cholesterol ! Or, perhaps it’s just regular sore muscles from aging or going back to the Y to work out.  Not sure, but not really much of a bother.

But it is really important to pay attention to the body and the subtle differences as they provide clues as to whether something is a symptom, side effect, or “normal”.  Here’s another example – When I was on crizotinib I could count on bouts of diarrhea every four or five days.  Solution? Imodium.  With Lorlatinib I had no digestive issues, and then a few weeks into the trial I began to have bowel incontinence.  Not diarrhea.  No explanation. Scary.  Because it could mean that the cancer was in my spine and messing with nerves to bowels.  Luckily for me, the first statin drug I was on didn’t work for the cholesterol and I was taken off it.  Why luckily?  Because it was causing the bowel incontinence we think.  It stopped a few days after stopping that med.  It isn’t a known side effect of that med and the Dr. was ready to scan my spine in my next scans.  But, no more problems with that!

Another side effect of Lorlatinib that I’ve not heard a solution for is weight gain.  Now that too is part of life, but in this case it really is a side effect.  How do I know?  Because I gained 9 pounds while on this medication for nine weeks, and I’ve lost at least five in the week I’ve been off it.  Now, I’m hoping that with being careful about diet, along with walking and working out, that I’ll be able to control this weight gain.  But I’m not going to beat myself up over it anymore than I did the high cholesterol . Out of my control.

Today I went back on that reduced dose of Lorlatinib.  I’m really hopeful that it will not cause neuropathy at this dosage.  Two fellow ROS1ders have been through this and the lower dose worked for them.  My oncologist really pays attention to the balance of fighting the cancer and quality of life.  He was concerned about how the neuropathy was limiting what I could do and affected my sleep. We didn’t discuss options for if the lower dose still causes neuropathy.  Fingers crossed (and hope they don’t fall asleep)!