My Miracle Drug

Endometrial cancer is an estrogen-dependent tumor. So conservative treatment focuses on creating an environment that is high in progesterone and thus low in estrogen.  I am being treated with megace (megestrol acetate), a synthetic progesterone. I take it by mouth. On March 2, I started megace at 40mg twice a day. About 2 weeks later, I had done a lot of research and learned that most patients take either 80mg twice a day or are increased to 160mg twice a day.  At that point I had not had any side effects and figured that the higher dose could only help beat this thing. I emailed my doctor and her PA and we increased to 80mg twice a day. After my procedure in June showed complex hyperplasia with atypia, the dose increased to the max, 160mg twice a day.

There are other oral progesterone preparations that can be used. Additionally, a progesterone IUD can be inserted but there is not a lot of data on this yet. The benefits of the IUD are that the effects of the progesterone act locally on the uterus but there are fewer systemic side effects than when you take progesterone by mouth.

Fewer side effects would be wonderful. I have had a lot and I will tell you about them. I think I mentioned before that megace is used in advanced cancer and AIDS patients as an appetite stimulant to make them gain weight. I now understand why.  At first I didn't really notice an increase in appetite. When I started the medication last March I was determined not to gain weight. I bought a scale and A LOT of cucumbers and celery.  I worked out as much as my crazy schedule would allow. I still gained weight gradually. Until I started the max dose...  Now it seems like no matter what I do, the numbers on the scale just keep going up.  And it's significant - I am up 25 pounds!  I have had to buy all new clothes.  And I have definitely noticed the appetite stimulant effects. All I want to do is eat and eat mostly sweets.  I have always had a sweet tooth but this is extreme!  I do my best to avoid them and try to let a tiny piece of dark chocolate satisfy the intense cravings. It is not easy.

In April, I started to have heartburn frequently.  It got worse and worse.  It kept me up at night so that I was trying to sleep sitting up.  It made me nauseous throughout the day.  The only foods that tasted good were burgers and salty things like pretzels and pop chips.  My primary care doctor started me on heartburn medication that didn't really help. Then she started me on a stronger one, prilosec, and it helped a little.  We increased the dose to twice daily and it helped a lot.  Now I only have heartburn occasionally but I am still taking prilosec twice a day!  Also in the GI system... constipation.  I have never been the most regular person in the world but on this medication it got a whole lot worse.  With lots of fiber, a stool softener, and a strong probiotic I have it mostly under control these days.

Exhaustion...  Last spring I was definitely feeling a little more tired than usual but it is hard to sort out when you work a resident's hours.  By the time I maxed the dose of megace I was tired all the time.  When I reworked my schedule so that I could sleep in (instead of getting up at 5ish) and take naps when I needed to, I felt a world of difference.  If sleep is what I need to beat this, then I will sleep!  Except when I can't...  Off and on I am up half the night and nothing seems to work to get me back to sleep.  Reading, solitaire on my phone, going downstairs to watch TV, etc.  Since I maxed the dose, I wake up in the middle of the night, EVERY night and have to pee (urinary frequency is listed as a side effect...) which contributes to my tossing and turning.

I have crazy blonde (ok not as blonde as it used to be) curly hair.  My husband has always given me a hard time for clogging the drain but these days the hair in the shower seems to have doubled.  I run my hands through my hair and out comes a lot.  At least my hair was always thick so I guess I had some to spare.

Have you heard of a "buffalo hump"?  It is a hump between the shoulders, just below the neck.  People on steroids (like prednisone) often develop this.  Mine started last summer.  I think it is because progesterone is a steroid hormone.  It's nothing a turtleneck or big sweater can't cover but it's not my favorite part of my new body.

There are other scary side-effects that I have not experienced, thank goodness.  Things like blood clots, changes in vision, horrible headaches, etc.  But as you have probably gathered, this medication is kind of kicking my butt.  I am willing to do pretty much anything for the chance to have a child so I have stuck with it but I do not want to be on it any longer than necessary.

Getting Back Into It

I am sorry that I have not blogged since my procedure in June.  I know that I probably left you hanging without giving you the results.  Before my D&C last June I was really optimistic.  I really hoped (and to some degree thought) that the cancer would be gone and that we would be able to move on with fertility treatments.  The carcinoma improved to complex hyperplasia with atypia but this was only a small step in the right direction. 

After that I was really down.  I was working crazy hours, 12+ hour normal days plus up to 24 hour in-hospital calls.  I just couldn’t handle it all.  I would randomly start to cry.  I started a rotation on our in-hospital pain service and had to round on my doctor’s patients, many of whom had just had hysterectomies.  This was not good for me (although our epidurals managed their pain well).  My husband and I talked a lot and decided that I needed to make some changes.  This was not going to be a quick, easy process.  I needed to take care of myself and give us the best possible chance for me to get better and for us to have children.

So I made a lot of changes.

First, my program director and chief residents helped me reorganize my residency schedule.  I stopped taking call.  The prospect of spending every night at home in my own bed was therapeutic in itself.  I would also have weekends to rest and spend time with my hubby.  With the help of an amazing co-resident, I worked half days for the rest of my month on the pain service.  I went in at noon and left around 5-6.  I was able to get sleep, exercise, and make healthy meals, most of which are not part of a resident’s average day.  After July, I started to do research time instead of clinical time.  This allowed me to work from home, make my own schedule, and really take care of myself.  I knew my next procedure and news would be at the end of September so I scheduled research until then, with the option of adding additional time afterwards. 

Second, I explored other options to take care of myself.  I saw oncology nutrition and incorporated their suggestions into my diet.  I started acupuncture treatments.  I read a book on meditation and started practicing.  I have always tried to exercise consistently but my schedule did not always permit it.  With more time on my hands I went to yoga and spinning classes frequently and spent time at the gym otherwise.  I was not sleeping well, occasionally being awake for hours at a time at night, so I let myself sleep in or take naps when I felt like I needed to. 

It is now the end of January and I am “hanging in there.”  After the June procedure I doubled the  megace dose to the highest level.  I had another procedure in September that came back as complex hyperplasia without atypia, another small step in the right direction but not normal.  And another in January that just came back as a small amount of atypical glandular proliferation.  Per my doctor this is close to normal, but still not normal.  We are not clear for fertility treatments but I am continuing on hormonal therapy with megace.

I think blogging helps me organize my thoughts and emotions so my goal is to get back into it.  I also hope to provide insight for others who battle this disease.  I will try to fill you in on the events of the last few months and keep you posted as we go forward.