Hi again Mimi! Here's in brief (well i try...) what's going on with my husband:
- dx with rectal cancer 07/08 at age of 37, several metastases (biggest the size of a fist) in liver and lymph nodes, inoperable, CEA over 6000, doc said 3 months without treatment or 9 months tops with treatment.
- Eloxatin (oxaliplatin) plus Xeloda from 07/08 for around two months, then Avastin added
- in September CEA had halved to just over 3000 and CT showed tumours had decreased in size so basically without Avastin, so Oxaliplatin worked for him
- In November CEA just over 200
- In February 2009 CEA down to 110, but oxliplatin taken out so that it would not cause "long term damage" (what does long term mean if you have been given 9 months tops? :) with nerves in fingers and toes
- Feb-April Xeloda+Avastin only and in May CEA to 180 and indications that tumours growing in CT so change of chemo to Camptosar (irinotecan) + Xeloda + Erbitux so he goes in for IV once week.
- Problems with low platelet counts so some chemo rounds of Camptosar dropped, but still CEA went down to 60 in July, August 40, October 30. CT scan shows still several big lesions but some have completely disappeared and the big ones left are probably necrotic (dead) inside.
So he's been on Erbitux for six months and it is still causing a rash which I guess is a good sign. They haven't said when they'd stop giving it. I guess if the cancer starts to grow again. He is not in remission, or I guess it depends on how you define remission. But his cancer is an aggressive type so I doubt they will easily consider him "in remission" and give him any holidays from chemo. Maybe if CEA goes down to 1??
I guess why they don't put Avastin and Erbitux always on the first line is exactly what you say, even though docs know they are efficient they are also soooo expensive... We are lucky in that where we live the health care is public so the medicine is practically free and there's no insurance company wo could try to deny us treatment. But of course teh hospitals have budgets here too so if a therapy does not seem to work they will not continue it forever and ever.
And in any case, cancers are so individual that for the time being it is quite difficult to know which chemo will work for who, unless you try. Oxaliplatin+Xeloda was efficient for my husband, Avastin+Xeloda alone wasn't, but I know it is for many. I am sure in just 10 years they will know so much more abut who will benefit from what therapy, there's so much research going on. Unfortunately it does not help us yet but maybe we are helping others in future! Sorry, I should not say "we", I don't have cancer myself, but sometimes it feels like I do as it is somehow practically on my skin all the time... (I have even had two colonoscopies to make sure, we have two young kids so I don't want to take chances).
But anyway, my husband is doing great, occasionally of course tired and some problems with stomach etc. but Emend takes care of nausea and atropin of camptosar diarrhea quite well. We haven't done any special diet but have heard of budwig etc. We just basically try to eat healthy like avoiding additional chemicals in food, buy organic, eat a lot of vegetables and fruit, wholewheats (rye especially), take additional vitamin D, red meat also to keep blood values up etc. But my husband does have a sweet tooth as well... Enjoying life and doing regular excercise is also very important (even scientifically proven).
Again, wishing you all the best with your excellent PET result, I love to read these success stories!
Mousey