The roller coaster dips and rises (long post)

You have often heard me make the comparison of melanoma's journey to that of a roller coaster ride. There do not seem to be any long straight stretches, just peaks and valleys. This week started with the post holiday funk and the after chemo lows. Tuesday sent us further down the hill when the brain surgeon noted 19 more spots on the brain. Standard of treatment for this is whole brain radiation. Three to five times a week for 5- 6 weeks. Couple that with some pretty ugly potential long term side effects and John is saying "No way". OK. I spent last night researching and cybering with other melanoma patients and by this morning we had some options to hit the oncologist with that did not include WBR. A newer drug called temador is a pill form of chemo that is starting to be used for melanoma brain tumors. It is approved for other brain cancers but not melanoma. However it has shown success in treating melanoma and in most cases the insurance will cover it after an appeal is made. It has relatively few side effects and is taken at home. No hospital, not even in-patient. At the appointment today the doc walked in and suggested temador with the ciplatin and vinblastin that John has been getting. The heart tumor has responded to the vinblastin, cisplatin combo and she wants to continue those. But John is so tired and beaten down from the drugs he wants to stop for a month and see what happens. We talk about some other options and all finally agree that the best case scenario for John right now is to do the temodar alone. It should be very doable without the fatigue of the combo chemo. He will get his blood checked every 2 weeks and if the LDL marker starts to rise he will get right back on the combo chemo. We left the hospital all feeling like we had a good plan in place for the next month. Hope now is that the insurance will cover the drug and that John will not have any adverse reaction to it. Then pray that it works to kill the brain tumors. John's blood levels continue to be low due to the chemo so he will be getting transfused tomorrow. His platelets are too low to start the temador too. Hopefully by next week when this should start, all the numbers will be ok. John looked good today and his mood was upbeat. It was a good appointment for Steve and I to attend with John. I think he likes the added challengers to the doctors. We were able to quiz her about some other options that I have researched and she agreed there are some other options to work on when we see where this round goes. She seems to be in the fight again too and we were worried in September that she may have been ready to give up. The response of the heart tumor has kind of turned her around I think.

So that is the bad news, good news. John and Jesi are looking forward to spending the end of Jan and beginning of Feb here in Perrysburg while Steve and I are in Florida. Hopefully they will have to make only one trip to Columbus for medical care and the rest can be handled here. Their house will stay clean and ready for showing and they will be looking at permanent options here. A teaching job for Jesi and probably an apartment. It will be nice for them to have more family and friends in the immediate vicinity.

Faith and hope can be wonderful for the soul, but I know the roller coaster ride continues.