Treatment
Methotrexate made me too ill to continue. Acitretin had no effect at all. Now I am moving to regular IV treatment with mogamulizumab. This page follows what each treatment did, what failed, and what comes next.
This Is Where Things Stand Now.
Cancer treatment sounds orderly when it is reduced to medication names and appointment dates. Living through it is much less tidy. This is the treatment path that brought me from methotrexate to acitretin and now to mogamulizumab, and what actually happened with each one.
Diagnosis
Mycosis fungoides
Current treatment
Mogamulizumab
How it is given
IV infusion
This page is not a treatment guide. It is the record of my treatment. Mycosis fungoides can behave very differently from one person to another, and the treatment that makes sense for me may have little in common with the treatment another patient receives.
Getting Here Took a While
For years, methotrexate was part of my treatment for mycosis fungoides. Eventually, though, the problem was not simply whether the drug was controlling the cancer. Methotrexate was making me too ill to continue taking it. There comes a point when a treatment can no longer be separated from what it is doing to the rest of your life, and I reached that point.
Methotrexate was stopped and acitretin came next. This time the problem was completely different. Acitretin did not make some dramatic entrance, good or bad. It simply did nothing. My cancer did not improve. There was no meaningful response to point to and no reason to pretend otherwise.
With one treatment making me too sick and the next having no effect whatsoever, the search for another approach became more urgent. Radiation oncology entered the discussion, specialist referrals followed, and eventually we arrived at the treatment I am moving into now: mogamulizumab.
Methotrexate
Methotrexate was part of my treatment for a long time, but eventually it made me too ill to continue. Whatever benefit it may have offered had to be weighed against how badly I was feeling while taking it.
Acitretin
Acitretin was the next attempt. In my case, it had no effect whatsoever. My cancer did not respond to it, so there was no point continuing down a road that was going nowhere.
Radiation and oncology referrals
Radiation was discussed as another option while I was referred onward to oncology to look at treatments capable of working throughout the body rather than only on individual areas of skin.
Mogamulizumab
I am now moving into treatment with mogamulizumab, an IV therapy used for mycosis fungoides and Sézary syndrome. This is the next major chapter of treatment, and I will be documenting it as it happens.
Treatment Is More Than the Drug
A medication name makes treatment sound self-contained. Take the drug, wait for it to work, move on with the rest of the day. In reality, treatment spreads itself across the calendar and into almost everything around it.
Appointments
Treatment means organizing life around oncology visits, bloodwork, consultations, hospital trips and whatever follow-up comes next.
Tolerance
A drug can be medically reasonable and still become impossible to live with. Methotrexate taught me that very clearly.
Effectiveness
Sometimes the problem is much simpler: a treatment just does not work. That was my experience with acitretin.
Waiting
Waiting to see whether something works, waiting for the next appointment and waiting to hear what happens when it does not are all part of cancer treatment too.
Current treatment
Mogamulizumab
Mogamulizumab, sold under the brand name Poteligeo, is the treatment I am moving into now. It is given by IV and is specifically used in certain people with mycosis fungoides or Sézary syndrome.
After methotrexate became too difficult for me to tolerate and acitretin failed to produce any meaningful response, moving to a treatment aimed specifically at this disease feels like a significant change in direction.
My treatment plan involves regular IV infusions over an extended period. That means oncology is about to become a recurring part of my calendar rather than somewhere I visit only when the treatment plan changes.
Before
Bloodwork, assessment and making sure treatment can safely go ahead.
Arrival
Check in, get settled and have the IV started.
Infusion
The medication is delivered intravenously while I am monitored.
After
Go home, see how my body reacts and learn what recovery from each treatment actually looks like.
The Side-Effect List Is Not a Prediction
Medication information for cancer treatments can be intimidating because the list of possible side effects is often enormous. After my experience with methotrexate, I am certainly not dismissive of those possibilities, but I also do not want to treat a list of potential problems as a schedule of what will definitely happen.
I will document what actually happens to me. If I am nauseated, exhausted, itchy, feverish, perfectly fine or somewhere in between, that is what I will write about.
A treatment can fail because your body cannot tolerate it. It can also fail because the cancer simply ignores it. I have now experienced both.
Two Treatments, Two Very Different Problems
Methotrexate and acitretin failed me in completely different ways.
Methotrexate made me too ill. That matters because treatment does not happen in isolation from the rest of your body. There is a point where the cost of continuing becomes part of the medical decision, particularly when everyday life is increasingly being shaped by how sick the medication itself makes you feel.
Acitretin was almost the mirror image of that experience. The issue was not that it made me dramatically ill. The problem was that it had no effect whatsoever. I was taking a cancer treatment while the cancer appeared entirely unimpressed by the arrangement.
Neither outcome is particularly satisfying. One treatment made life too difficult. The other gave me nothing in return.
The part nobody schedules
Treatment Takes Up More Than Appointment Time
There is the time spent with doctors and at the hospital, but there is also the time spent waiting to find out whether a treatment is doing anything useful. When a treatment fails, you do not simply erase those weeks or months and begin again from exactly where you started.
Meanwhile, cancer continues to affect ordinary life. Eating, sleeping, walking, laundry, going out, spending time with family and planning ahead all become subject to how much energy I have and what my body is capable of that day.
That is the part of treatment I am most interested in documenting here, because it rarely fits into the tidy little box marked “therapy” on a medical chart.
I Still Want the Treatment
Having had bad experiences with previous treatments has not made me opposed to treatment. Quite the opposite. It has made me want something that works without making life impossible in the process.
I can be wary of side effects and still want the medication running through the IV. I can be exhausted by cancer care and still be encouraged when my doctors finally have another concrete plan.
There is no requirement to pretend the process is pleasant in order to want it to work.
Medical note: This page documents my own treatment and experience. It is not medical advice. Cancer treatment is highly individual, and decisions about medications, radiation or other therapies should be made with a qualified oncology team.