heather
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Thank you Melinda. He is declining more and more, I just pray it is after Christmas, my little eight year old doesn’t need to have that memory at Christmas time every year however it isn’t my decision. God knows when and I need to start praying more and giving it to God more. Oh how it is so so so hard. One thing I never prepared for was so much company. My sister is coming to stay with us and she will be my greeter and such. I really am okay yall just got my crazy upset self.
There is no need to seek another opinion. Gordon’s liver is failing. Everything has been done that needs to be done. My anger is real but please remember I’m just venting. I’m allowed, I have done everything I can do. No md Anderson isn’t all bad don’t misunderstsnd. But they do give a lot of fluff. This is a dr not the entire place. It’s hard. I’m sad and scared that is all. Md Anderson didn’t do this. My husband is dying at 46 years old. Being raw and wmotion doesn’t mean I need to put my anger to something good it’s just me venting. My 42 and just am over whelmed with so much. I’m sorry if I upset anyone.
Hey there My husband goes do MDA and he had a horrible horrible time with the leaking until they could change it Im saying that to say this…
I can help you with the drain but you will probably need to get the supplies at MDA. It will include a colostomy bag. you put it around the drain with the special adhesive. you dr at mda can get in touch with that dept to help you or go to the 4th floor and talk to the nurses. They saved so much grief for my husband. Please email me if I can help you any further. It will stay on and we wont have to worry about changing it so you can just keep her comfortable and enjoy this time as much as you can. Im so sorry your going through this. My email is hwomble@austin.rr.com.
Best wishes
Oh yeah he takes it, I make sure. Now today we were all off and we do the Tylenol and ibuprofen regularly too. I appreciate you helping….I think all cc patients are “special cases” because there is so much Unknown still. I need to just realize that…grrr
And yes as much radiation as he is getting near his stomach and his stomach is getting a little that makes a lot of sense.
Thanks, yes he has three different nausea pills and he gets his blood work done every week. They did blood cultures too so all of that is great! Were at the end of the treatment so maybe its just accumulating. Gordon is a “special case” they just rule things out. So when the drain is changed out on Tuesday and his temp doesn’t go away then I sure hope it is just from the radiation because that would really scare me if we can’t get this temp under control. He is 45 and was diagnosed a little over a year ago. He would get a temp from chemo but it would never get to 101. He has been on two different antibiotics this time…just weird.
Caroline,
Sorry it has taken me so long to reply, we have been in Houston(MDA)
Folfori hasnt been too bad…he has been on it since september and the tumor is shrinking. It makes him very fatigued, some nausea and it does drop the platlets. sometimes he has needed neutripen shots. Yes Gem/cis was a year ago, it is always the first attack on this cancer. Also ask about the Tarceva pill to go with it, with some people it does have good results. Gordons ins at the time would not approve it.
Anytime,
Heather
my husband is also Dr javles patient and dr cranes as of today. We will see Dr. Aloia for the spacer to be put in. Dr. Crane said this is comparble to surgury, the outcome that is. What do yall think. They said IMRT will be better for his tumor. Gordons tumor was 8.8 and now it is 6.2…from Chemo. The chemo that worked was FOLFORI. But DR. J said he fears there is more cancer elsewhere because of how high his tumor markers are. His liver is a little damaged with a tiny amount of ascities. He was diagnosed Nov 27 2012 and he is still working and doing okay….I to would like to see miraculous heaing but I believe in Gods will and am thankful for all the time we have, Gordon is 45.
Good luck girl!!! Dr Javle is my husbands doc too we go the 18th or so. Big hugs from texas!!’
Heather
Wow!! You have been through it girl!! We are heading to Dallas as in a bit. I’m very curious about these Baylor Drs. My husband is going through Mda right now…and sometimes it seems like they are tip toeing around what they know but don’t want to tell us… I am going to talk to my husband about getting another opinion. Gordon has a 8cm tumor in his liver local lymph nodes involved. Surgery wasn’t a success in August but being re evaluated in a couple of weeks after chemo.
Glad your recovering okay!!! This is a roller coaster ride!!!!
Hugs and prayers to you!!
Heather
What is so frustrating though, is my husband had the genetic testing and then the insurance wouldn’t pay for the meds because there wasn’t any proof to show it would work.
we were so excited about the testing until we got to the insurance part. Just to refresh my husband is 45 w/ 8cm tumor in liver diagnosed a year ago. It’s been chemo chemo chemo. No surgery yet and hoping that is what we find out in a couple of weeks but we don’t have our hopes up for that just praying control. We have a 6 year old that has become a little clingy but we give extra hugs and honest reassurance. A lot of praying, nothing sweeter than a little one praying for cancer to go away 
Heather
Hang on… And I agree when you do have a plan it does seem to ease some anxiety
Just to update,
we recieved some information in the mail yesterday, say enroll enroll in healthcare.gov like its all going to be okay!! I hope it is….. I called MDA asking them to please call me and let me know if they will just drop Gordon? or what will happen. They never called me back…basically the insurance will end on December 31st. but you can also go to a private insurance agency and get insurance, they cannot turn you down.
Im not much help…but just wanted to mention this
Heather
My positive news is my husband, Gordon was diagnosed Nov 2012 and the way the drs talked to us we didn’t know if he would be here today. He is doing great! He is on FOLFORI, just had his forth round, they may do one more. He has been on gim/cis and xyolota and gimzar. They cancelled surgery in August but they reelvuate here in a couple of weeks. We hope but our lives are not wrapped around the words “yes he can have surgery” That was too much last time….Gordons live was just not in good shape but now hopefully that will not be an issue. But I feel it is a blessing that we are coming up on a year. And I pray we have many more!!
Heather
