We are whipped and while there is so much to post - so many variables and new bits of information and recommendations to be weighed (and of course photos to be posted, see Dr. M, medical oncologist, left, and Dr. F with his resident (about to scope Matt yet again!) below) but we just can't do it all tonight but here are a couple highlights: - As we posted from the road, Mayo recommended chemo (in addition to radiation) but we (and frankly, no one) are just not sure. The survival improvement percentage does not equate to the misery factor of the combo treatment (radiation plus chemotherapy). We had a good appointment with Dr. H at Methodist today and he does NOT recommend 
chemo - he thinks it is just not worth it, even or especially given Matt's situation (his youth, good health, atypical for this kind of cancer vs. large lymph node, small tumor, positive margins on the tonsil). The adverse side effects, which are many and can be severe with radiation alone, can be doubled with chemo. So, we are meeting with a Park Nicollet medical oncologist next week for the final weigh-in.
- Regardless of whether or not we do chemotherapy, Matt will start radiation treatment next WEDNESDAY, Jan. 13, mid-afternoon. The treatment will be for 6 to 7 weeks, 5 days a week. The actual radiation appointment, each day, is relatively short in duration - Matt will be there for no more than 30 minutes...this to include checking in, undressing, getting aligned within the machine and putting on the treatment map, etc. So we are looking at an end date of mid-March sometime. A start and end date is ENORMOUSLY helpful thinks Cathy.
- In case you care, today Matt was also given the all-clear for radiation from Dr. Ha (teeth) - his mouth is healing great. Yeah!
- As alluded to above, we have an appointment with a medical oncologist from Park Nicollet (our first medical oncologist ever was at Mayo, yesterday, and his perspective was important while unexpected - he recommended chemo right away) also on Jan. 13. Matt will do his first treatment then we will meet with Dr. Oa. The decision to add chemo or not will have to be made within a couple days of this appointment.
- We spent a couple hours in the cancer resource center at Mayo (it is fabulous) and the Drs we saw yesterday - Dr. F/radiation-oncology and Dr. M/medical oncologist - gave us some additional information about studies, etc. Ergo, their rec for chemo. While it is a lot to read and absorb, at first blush it seems like really helpful information....We'll let you know. We are set for bed-time reading for MONTHS for heavens-sake!
- The HPV virus, which was found in Matt's cancer, is cited as the reason that he has cancer, this according to Dr. M. The way he describes it it does make sense. And no way am I going to be able to detail that in this layman's blog! While not "contagious" I (Cathy) am going to my internist tomorrow to talk about the idea of getting vaccinated for cervical cancer - which is directly associated with the strains that Matt has. This is not a huge deal but something to pay attention to, so...we are paying attention!
- One of the frustrations is turning out to be the inaccuracy of important processes such as pathology and scans....Not having a more detailed pathology of the lymph node ("pomegranite") is problematic; and the PET scan appears to be not as well done as some would like....We are getting that nothing is perfect, cancer can be hard to see; no one is 'god' - but this all still would be a little nicer if some of it was better documented - ah well. With that being said, Dr. M was so not-happy with the PET scan of last month that he ordered one done at Mayo (actually, he also ordered and we did it over lunch, another CT scan of Matt's chest for the spots-in-the-lungs check); Matt is going down tomorrow again for a Mayo PET scan - which we think will be a good one to have in general for baseline purposes. Loving that Hwy 52.....
So to summarize....
Matt is evaluating his options, and trying to figure out best choice: yes to chemo or no. He will have to, get to, choose. We have the appointment with the oncologist on Wednesday, but he (Matt) is going to (has already talked to) talk to Dr. Ha, Dr. Doogie...Sue and Mike's ENT expert in Utah....perhaps some other survivors who have done radiation plus chemo (thanks to Coralee and Steve and their friends) to see how the scales should tip. It is going to be a hard but important decision - stay tuned!
We will post more details this weekend so we don't lose them - for those of you that are into detail. It is still all quite frustrating, a little confusing, somewhat concerning - but hey, we will persevere and Matt will be fine on the other side of treatment - we are already persuaded of that.
chemo - he thinks it is just not worth it, even or especially given Matt's situation (his youth, good health, atypical for this kind of cancer vs. large lymph node, small tumor, positive margins on the tonsil). The adverse side effects, which are many and can be severe with radiation alone, can be doubled with chemo. So, we are meeting with a Park Nicollet medical oncologist next week for the final weigh-in.- Regardless of whether or not we do chemotherapy, Matt will start radiation treatment next WEDNESDAY, Jan. 13, mid-afternoon. The treatment will be for 6 to 7 weeks, 5 days a week. The actual radiation appointment, each day, is relatively short in duration - Matt will be there for no more than 30 minutes...this to include checking in, undressing, getting aligned within the machine and putting on the treatment map, etc. So we are looking at an end date of mid-March sometime. A start and end date is ENORMOUSLY helpful thinks Cathy.
- In case you care, today Matt was also given the all-clear for radiation from Dr. Ha (teeth) - his mouth is healing great. Yeah!
- As alluded to above, we have an appointment with a medical oncologist from Park Nicollet (our first medical oncologist ever was at Mayo, yesterday, and his perspective was important while unexpected - he recommended chemo right away) also on Jan. 13. Matt will do his first treatment then we will meet with Dr. Oa. The decision to add chemo or not will have to be made within a couple days of this appointment.
- We spent a couple hours in the cancer resource center at Mayo (it is fabulous) and the Drs we saw yesterday - Dr. F/radiation-oncology and Dr. M/medical oncologist - gave us some additional information about studies, etc. Ergo, their rec for chemo. While it is a lot to read and absorb, at first blush it seems like really helpful information....We'll let you know. We are set for bed-time reading for MONTHS for heavens-sake!
- The HPV virus, which was found in Matt's cancer, is cited as the reason that he has cancer, this according to Dr. M. The way he describes it it does make sense. And no way am I going to be able to detail that in this layman's blog! While not "contagious" I (Cathy) am going to my internist tomorrow to talk about the idea of getting vaccinated for cervical cancer - which is directly associated with the strains that Matt has. This is not a huge deal but something to pay attention to, so...we are paying attention!
- One of the frustrations is turning out to be the inaccuracy of important processes such as pathology and scans....Not having a more detailed pathology of the lymph node ("pomegranite") is problematic; and the PET scan appears to be not as well done as some would like....We are getting that nothing is perfect, cancer can be hard to see; no one is 'god' - but this all still would be a little nicer if some of it was better documented - ah well. With that being said, Dr. M was so not-happy with the PET scan of last month that he ordered one done at Mayo (actually, he also ordered and we did it over lunch, another CT scan of Matt's chest for the spots-in-the-lungs check); Matt is going down tomorrow again for a Mayo PET scan - which we think will be a good one to have in general for baseline purposes. Loving that Hwy 52.....
So to summarize....
Matt is evaluating his options, and trying to figure out best choice: yes to chemo or no. He will have to, get to, choose. We have the appointment with the oncologist on Wednesday, but he (Matt) is going to (has already talked to) talk to Dr. Ha, Dr. Doogie...Sue and Mike's ENT expert in Utah....perhaps some other survivors who have done radiation plus chemo (thanks to Coralee and Steve and their friends) to see how the scales should tip. It is going to be a hard but important decision - stay tuned!
We will post more details this weekend so we don't lose them - for those of you that are into detail. It is still all quite frustrating, a little confusing, somewhat concerning - but hey, we will persevere and Matt will be fine on the other side of treatment - we are already persuaded of that.
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