1.) The overall tone of the meeting was positive and encouraging. The MRI was categorized again as "stable to improving." There is nothing new since April & the area around the resectioning cavity that was highlighed before continues to shrink. Unfortunately there is something on the MRI that shouldn't be there- they don't know what it is and it's too small to remove or biopsy. This is actually the MRI from April but the one from June was so similar I couldn't tell which was which (also I forgot to get a copy of the one from June so this will have to do.) I know this looks tiny and it is small but there is another angle that shows it better and it looks like a miniture version of Morton. It could be swelling from radiation/surgery still, it could be scar tissue, it could be tumor, we don't know we just have to watch it and hope it doesn't get any bigger.
2.) The doctors confirmed that Rion is still having seizures- the "clicking" he hears in his head and the episodes that we have been calling panic attacks (Rion describes it as his thoughts racing, his heart speeding up & smelling a distinct smell of something that isn't really there) are both partial seizures. They have put him on Vimpat in addition to his Keppra to try & stop these seizures. Similar to the Keppra it is a fairly strong medication and has to be gradually increased and can not be stopped abruptly. The side effects are similar- fatigue, dizziness, nausea & suicidal behavior but since Rion has tolerated the Keppra so well we assume this will work just fine. In case you are wondering (as I was) why not just increase his Keppra, we were told that the next higher dosage (3000 mg/day) is likely to cause debilitation fatigue and clearly we don't want that. So we will try the new medication and hopefully get the seizures to totally stop. Rion wasn't told to quit driving but I still worry about him driving, especially if he has a "clicking seizure" because he has a really hard time concentrating on anything else when that happens. Luckily this hasn't happened yet and maybe it never will!
3.) His blood work was good enough to go ahead and start the round of chemo he missed a few weeks ago. He started Wednesday & so far so good. They added a 3rd medication for nausea/vomiting to try & prevent any of the spontaneous vomiting episodes Rion has experienced with the last 2 treatments. He is taking the higher dosage of chemo (375 mg vs 280 mg.)
I know I have mentioned here before that Rion would be on this chemo regiment (5 days on/23 days off) for a total of 12 cycles (12 months) but we are going to possibly change that to only 6 months- 4 more cycles including this one. I have mixed feelings about this- it would be wonderful to have Rion done sooner especially since he had been feeling so good with the extra 10 day off chemo. I can honestly say he has been acting more like himself the past few weeks than he has since his initial seizure last November. He is happy & active & just so full of life- I know it will be great when he is DONE with chemo and able to really resume life without trying to plan it around certain times of the month when he is more likely to be sick. But on the other hand I hate to feel like we aren't doing anything to prevent recurrence. The doctors assured me that there is no hard evidence to support that 1 year of chemo is any better than 6 months with the type of tumor that Rion has. In brain tumor talk there is a lot of emphasis on chromosomes 1P & 19Q- there is an inverse relationship between having these chromosomes & response to chemotherapy treatment ie if you don't have these chromosomes the chemo is more likely to be effective than if you do have them. This week we learned that in Rion's case he has a partial loss. Also, his tumor is composed of 2 different types of cells- one of which tends to respond more favorably to treatment than the other. Wikipedia has some good basic information- read here.
Our game plan for now is to get a fewmonths under out belt of the higher dosage chemo & go back to Duke at the end of August for another MRI & decide if we are going to finish chemo at 6 months or 12. I am already nervous about that trip because so much is riding on it! In the mean time we are going to have lab work done weekly instead of towards the end of each chemo cycle to stay on top of Rion's white blood cell count & platelets since we have seen them adversly affected at lower doses of chemo. If white blood cells get too low there is an injection they can give him to boost production of white blood cells & get them back up to a safe level. If his platelets get too low then he will have to get a blood transfusion to bring them back up. Even with the lowest his white blood cells & platelets have gone, they have never been to these dangerous levels before so we are praying they don't drop too much. But at least if they do we have a solution that we are both comfortable with.
That's all I got for y'all today. We walked away from the appointment feeling pretty good- I tend to focus on the negative but I'm really trying to just follow the doctors advice and live life "as normally as possible and not let this impact and decisions about our lives or our future."
Blessings,
Emily
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