kvolland
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They say that great minds think a like and I know we have a bunch of that going on. The first article I read just said cancer but several others said bile duct or cc. I hate that anyone has to die from it but at least they were willing to tell the world what it was. Maybe it will help raise awareness.
KrisV
Heather –
I must have missed your earlier post, I usually try to chime in on these. I wills ay that IMRT can make people sick no matter what the docs say. My husband finished up 25 doses the middle of April although he did do it with a continuous chemo infusion but he was REALLY sick, weight loss of almost 50# and his feeling bad lasted for three weeks after he stopped. I can’t sort through which was the chemo and which was the radiation.
Portal hypertension and ascites are almost always a side effect of liver disease including tumors. It is caused when the liver becomes unable to filter the blood coming fast enough so fluid leaks from the blood vessels into the abdomen. It can be due to stiffness of the liver or tumors pressing on blood vessels. My guess is that his is the later and as the tumor/tumors die off things will work better. If/when the ascites become uncomfortable they can be drained off periodically. I would hope that will dropping tumor markers and probable death of tumors that this should clear up over time. One thing to help with ascites is to increase his protein intake as this will help draw the fluid back into his blood stream. Meats, eggs, cheeses, cottage cheese, whey protein drinks, protein shakes, etc.Hope this helps.
KrisV
Lovely Lainy. You always seem to know what to write.
Know Percy that you are never far from my thoughts and prayers at this time.
Love and Hugs,
KrisVSad –
No matter his insurance situation the hospital has to treat him and at least stabilize him. I don’t know about visiting hours and that although most hospitals will allow a family member to stay in the room. Tomorrow without any hesitation ask to talk to a social worker and do NOT leave until you have spoken to one. Also enlist the help of the hospital chaplain….both of those resources should be available to help you and your girlfriend’s family.
Also before he gets much sicker you need to have someone help with a Durable Medical Power of Attorney so that he can appoint someone to help make decisions and be his advocate. I suggest talking to the social worker about that.
The lack of insurance should not be an issue especially in a public hospital. Most all of those have programs to assist those who cannot pay. The system I work for just has some paperwork and then it’s done. Have your girlfriend be the squeaky wheel and continue to push and ask questions until she gets answers.
Hope things turn around for everyone.Hugs, KrisV
Crissie –
I am sorry about the loss of you dad. I understand your sorrow. I lost my dad six years ago suddenly to an undiagnosed heart problem. I just hits you so hard. I will tell you that cc unlike something like heart disease does not seem to have a genetic link. My husband has no family history of this type of cancer and in fact even as a nurse I had no idea what it is. My suggestion is to put it in one of those file drawers in you mind and lock it away. You can take it out and think about it when you want to but don’t let it cloud your mind or stop you from living.I used to wonder how people who had cancer lived with the fact that it might return. I have to deal that know with my husband…..when will it come back? Will we know? I find that every day life just pushes those worries eventually.
KrisV
Sad –
So sorry that you and your girlfriend’s family are having to go through this. It is tough to deal with but you should know you have found a great support system.Not sure which hospital you were able to get into but I would head to MD Anderson. They are one of the top for this type of cancer. I am sure they have some sort of program for now insurance. Also you need to look at Texas’ Medicaid program which may be able to provide him with coverage. Here is a link to get you started:
http://www.yourtexasbenefits.com/ssp/SSPHome/ssphome.jsp
You should be able to click on the link and get there, if not copy and paste it to your address bar. I really hope this helps.
It sounds like his liver is having difficulty working so he is building up fluids in his abdomen. Often times they will drain this fluid to offer some comfort as the fluid can get quite uncomfortable.KrisV
Dan –
Don’t ever apologize when dealing with any of this stuff. I know that it can be very difficult to diagnosis correctly and brushings done with ERCP cane be negative over half of the time (I think that’s about right). I know for my husband we had MRCP, CT scans and Ultrasound prior to surgery and they based the diagnosis only on the symptoms and the 3 cm tumor they could see. We didn’t know it was cc until the biopsy report came back after surgery.Glad that your dad was able to have the stereotactic radiations and seems to be doing well. I will keep my fingers crossed for August.
KrisV
Peggy –
I wish as much as you do that you and your whole family could get off this blasted roller coaster. It is not one bit of fun. And too many of us have been on it.One thing too look at is all of his medications and make sure that he’s not any that might affect platelets and other numbers. When my husband got so bad a few months ago I took a look at everything and limited him to just the essentials. It would certainly be something to look at. Another thing would be to make sure he’s on a good multi-vitamin if he’s not already. We use PreNatal. It cracks my husband up when I remind him what he is taking but they are one of the best vitamins.
Good luck with everything and keep us posted.
KrisV
And Lainy and Julie – I too have felt a little off the last couple of days. I blame it on the weather (too hot here for me) and then too much thinking about what happened a year ago. I have to stop it.
You are hanging in there Julie. I knew you could do it. I knew you could do it. Glad you go to see the fireworks. We did a little show in our backyard for the grandkids…..we now have 4 with number 5 due next month. Our oldest boy and his wife are fostering three siblings and the 4th sibling will be along as soon as she is born. They are really hoping they get the chance to adopt so we will see. So now we have 6,5,3,2 and almost born.
I am glad it sounds like they are getting the port right. I have to access Mark’s and draw blood then flush it on Monday. It seems so strange to be done with it all now and just be maintaining. You will be there soon.
KrisV
Duke –
Just like everyone else I think all we have is anecdotal evidence and it seems to differ for everyone. Mark was stage IIIb after his resection and I know he had symptoms at least 6 years prior to diagnosis. His tumor was about 3 cm by 2 cm by 3 cm so my guess is pretty slow growing in his case. Guess it’s just whatever mutation the genes have.KrisV
Porter –
Wonderful new to hear. So glad that all looks good. Now to get the pesky port out. Mark could but he shudders to think of blood draws so for now I will keep managing it. I am so very, very happy for you.KrisV
WooHoo!!!! I too love waking up to hear good news like this. Successful surgery is the best news. Congratulations to both of you and may the good news continue.
KrisV
I so want to see the update on where we are for the 100 people registered. i was so sure we would make it the first day.
I am glad we have it up and going. Made me go look for the one for thyroid cancer for my son and find it….I am going to have him register when he comes home next weekend from college. It’s so important for people to do this for any type of cancer.
KrisV
No, you won’t needs scans, labs or any of that to do the process. During the initial process you just basically have to know what went on. What were the first symptoms? How was it diagnosed (ie CT scan, MRI, lab, etc)? What stage? What treatments have been done? And then a review of risk factors, family history and stuff like that. When you are done with that part then they ask you to go in and but in height and weight and then optionally you can put in doctors that have been in on the treatment and then upload scans and labs and what not. So those can be done at a later time which is my plan.
KrisV
I am with Lainy. Did it this afternoon for Mark and it only took just a few minutes. Very little of it did I have to go back and look at records (staging was the big one because I just tried not to remember). I go through it eazy, breezy. I now will go back and scan and upload labs and stuff like that but that will take time.
I am really curious to see how many people signed up in the first few hours. I was betting we blew up the website!And Lainy, you can’t be that computer illiterate, you manage to the boards pretty well. And I know you can email….that’s pretty good.
KrisV
