Sorry for the delay in posting. I’ve been busy doing a lot of research over the past two weeks, trying to reach a decision that we can be comfortable with.
Per my last post, we have been given a decision to make – try a chemotherapy option, called Intracystic Interferon treatment, or go directly to radiation. It’s an impossible decision, with no clear winner, but we’re forced to somehow choose.
Jason had always leaned toward the Interferon option, while I have had more reservations about it. After doing a lot of research, and talking to multiple doctors across the continent, I’m leaning toward Interferon too.
There just really isn’t much on it. I found two studies, completed in 2004 and 2007, with a grand total of 30 patients treated with Intracystic Interferon. It is a drug that is used frequently to treat other cancers, just not this one and in this manner.
I also found a comparison of Bleomycin (the drug initially suggested) and Interferon, which showed that Interferon did seem to have some advantages. Mainly, there were fewer side effects if the drug were to leak out of the cyst.
The studies that have been done appear to be promising. It doesn’t work for everyone, but when it does, it buys a median of just over a year until radiation becomes necessary. Of course, it’s a very small sample size, so it’s impossible to say how much time it will buy for us, if any.
I received one report back from the Craniopharyngioma support group about the use of this drug. Although it didn’t save their son’s life from a very aggressive form of the tumor (it metastasized after two bouts of radiation), it did shrink the cyst and provide him some relief from headaches during his last few months.
I spoke with Dr. Merchant at St Jude’s about the treatment, and he was under the impression that this course of treatment had been abandoned. He referred me to a doctor in Vancouver, B.C., who had actually written the comparison article I mentioned above. Her response was that it certainly does still have a place in treatment for Craniopharyngioma, but that it’s only appropriate in select cases. Summer’s case is one of them. Most people aren’t diagnosed this young, and the risks of going straight to radiation are lower, so it’s just not an appropriate treatment step for them.
After looking into it further, I started to feel more comfortable with the treatment itself, but just wasn’t sure I wanted to take the risk of allowing the tumor mass to continue to grow. What if the tumor spouts off another cyst and we’d have to go back for another surgery? What if the tumor causes pituitary problems that wouldn’t be a direct result of the radiation, like Diabetes Insipidis?
We decided to get a second opinion from Massachusetts General Hospital, one of the places we might end up for radiation at some point anyway, to make sure they felt comfortable holding off on proton therapy for a while, assuming the Interferon treatment works. I spent a week working with Children’s to collect all of her records and send them off to Boston. The nurse practitioner we work with on the HemeOnc team, Katie, was immensely helpful with this task, and we were able to get everything to them by yesterday afternoon, in time for the cutoff to review Summer’s case today. We should hear back from them today or tomorrow.
In the meantime, we also had a few appointments at Children’s. Last Wednesday, we had an Ophthalmology appointment to check her eyesight. We were happy to find out that her visual acuity (how well she sees when she’s looking directly at something) has actually improved since her last vision appointment after the first surgery. She’s well within the normal range for her age.
Just this morning we had another VEP test (the one with the electrodes), and Summer was very cooperative for it! It showed a bit more optic damage from the cyst growth, but you certainly wouldn’t know it from watching her. She doesn’t bump into things or seem to have trouble seeing things. We do know that her peripheral vision is still damaged, as she’ll often startle as if something just jumped out at her, when it had been there the whole time. Luckily, she’s so young that she won’t ever know anything different.
We won’t know how big her visual field is or what level of contrast she can see until she’s old enough to do some more extensive testing that would require her to verbalize what she’s seeing.
Last Friday, we had a wound check with neurosurgery (everything looks great, she’s healing well!) and an appointment with Dr. Geyer to talk more about the options. After speaking with him, and going over our concerns again, we have decided to move forward with the Interferon treatment as long as Mass. General agrees that we can hold off on proton therapy for a while longer. We’ll probably start treatment in the next week or two, and we’ll monitor with MRIs every six weeks. The first will be at the end of September.
Dr. Geyer reiterated that he thinks either choice will be the right one. It’s simply a matter of weighing the risks and figuring out which ones we’re comfortable taking. Choosing to go with Interferon means that we’re willing to risk another surgery in order to give Summer’s cognitive functions a little more time to develop before radiation.
Even if we went to radiation right away – and that’s still a possibility if the Interferon doesn’t work – she would still be a pretty normal kid. She just may have a little more difficulty with some subjects in school than she would have without radiation. We would never know for sure. But, we do know that we want her to have the best chance in life possible. If that means another torturous couple of weeks from another surgery, we think it would be worth it in the long run to know that we did everything we could.