heather
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Hey Carrie,
I sent you a private message!! We may be at MDA at the same time, would love to meet up with you guys!!! This is so rare and I think it would be good to be in contact with families who are going through similar experiences…here is my email hwomble@austin.rr.com
Heather
My husband is in the exact same boat, he also is with PCIP and no one can help us with this, because the government doesn’t know what is going on. We enrolled and we are just waiting. My husband is actually going to back to work after short term disability has ended so he can get on works insurance. We still dont know if that is a possibity either….send me your email, mine is hwomble@austin.rr.com. I will send you info I find out and if you could do the same that would be great. I will try to help you anyway i can…
Good luck!!…hugs
Heather
Thank you guys…he was giving the nurses a hard time in the infusion room today, we might need to start praying for them!! LOL
We know it is a roller coaster and yes we will enjoy the postive news. WE have a new normal now and we just have to make the best out of it! I think yall know what i mean!!
Hugs!
Mda does offer proton therapy for bile duct cancer but they do have to evualuate you to see if your a candidate
This relieves us in away to know the shoulder pain is related to the liver….Randi I knew what you meant, because I keep thinking…is it somewhere else? So unfortunely this is something I guess our loved ones deal with
And I feel good to know that others have something on hand just in case.This chemo cocktail must be pretty new, so guys lets pray it works and if it does remember the cocktail!!
hey guys!
I hope and pray that yall get the phone consults!! We love Javle and I mentioned this site and he commented that it is a great resourse!! Keep trying your right, it can be slow…we do alot of hurry up and wait at MDA but its worth it! Good luck to yall!!
ha! What did i do for excitement I schooled my 6 year old!! Apparently we didn’t get finished so that is what we are doing this long weekend
Thanks Lainy, you such a sweetheart!
Well guess what!!!
We had visits with both doctors. surgeon and Dr. Javle. The liver will improve, the tumor did not spread, the biggest concern is infections. So Gordon will start a new regimin of chemo. I will have to get back with you about what the are using, it will include an antibody and its very new so were not sure if it will get approved. (the antibody one)The tumor needs to shrink, no infections and there is no doubt in the surgeons mind that he will for sure have the surgery. He might need radiation but it will just be one day at a time. We had great visits!! these doctors don’t give up at MD Anderson. I totally broke down while in the surgeons office today.
We have hope again… Even if Gordon does not have the surgery, we were reassured that people can live a long time with the tumor being controlled.
yes we will!! My sister and his Dad will be in the appointment tomorrow. That is exactly what they did, put a scope in there. Gordons tumor is 8 cm and the other side of the liver is damaged so it very scary, the unknown…but my father in law is not leaving until all his questions get answered and ironcally he had the sameones i do!! I am blessed with an amazing family.
We have an appointment with Dr. javle tomorrow afternoon and the surgeon on Friday so hopefuly I will come alot more info I was just wondering if anyone knew anything or has experenced this…
