lsisman
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I don’t know and I hate to burst a bubble, this CC affects everyone different and from what I have learned, no oncologist or radiologist will ever tell a CC person they are cancerfree when they complete treatmetn and have clear tests. We were told that with this cancer you have to have clear tests for 2-3 years before you can think of saying cancer FREE. Said if it is gonna come back, it usually rears its ugly head in that time. I agree it is a great article but my husband has this CC and I consider myself very educated on what CAN happen. I hate sounding negative, but this CC is not a good thing, or easy to beat. I do hope the couple in the article never have to have a follow up article !!!!!
Has anyone ever heard of Dr Eason , head of the transplant institute in Memphis TN. He is supposed to be great. He is a surgeon.
My husband’s oncologist said that 5FU has the best results for chemo for this type of cancer. No other options were given. What I find amazing is how everyone is put on something different, or a combo of things and different lengths of time. You could think they all would have the same info and treatment would be very similar. Or is treatmetn different if it is a liver resection, or a whipple, or pancreatis partial removal….Also was told chemo doesn’t really work, but enables radiation so you must have chemo WITH radiation . And radiation and chemo should be a must after CC surgery as insurance to get any microscopic cells if lymph nodes infected or not. People who didn’t have radiation or anything, and had clear margins. GOT IT BACK!. What I have also found is that this CC affects everyone different, meaning you think you are a close match to someone’s similiar case/story but treatment varies and recovery issues vary and some live and others don’t. It can make your head spin. Drives me crazy.
Donna, I can’t imagine what this was and is like for you to go through. All I think about it this darn CC coming back and taking my husband too. He thinks of recovery and living and I think big picture…what if you dont make it. God bless you and I wish you strength to get through this and confidence that you will be okay in days to come. I dread goign through this and deep in my gut, I actually think I will.
I’m devastated by this Teddy news. When I first came on this site, all I read was inspiring notes from Lainy and I always searched this site to find people who matched closer to my husband’s statistics to again, find more inspiring survival stories. I hate this CC,. I do hope that there is a positive twist in all this and you both enjoy life longer and to its fullest.
Well all we have learned is to have chemo and radiation when nodes involved and we have heard too that chemo is not too effective over this type of cancer,after a whipple but is an enabler to the radiation. So you have to get both. My husband was only in the hospital for 6 days after the whipple but the only chemo suggested to us was 5FU and we were told it has the best results. Funny how everyone is put on different stuff so who knows. Unfortunately, my husband is down 80 pounds, he continues to lose weight and is eating and drinking Ensure and putting in the calories. All labs and scans are good so we can’t say he has cancer in him….He is in pain, drugged up, stomach hurts all the time and feels full, we feel he should be on the up and up after whipple was Jan 4th so we are trying to get an appt with the surgeon again since he did the work and may know what is going on. Such a long road and he is so sick of feeling like crap every day!
My husband is 51. Had the whipple, had 1/2 pancreas removed but cancer didn’t head toward liver so the liver was intact. He had 4 of 8 nodes in fected which unfortunately is not good. Seems this cancer comes back to those with node infections. My husband had the whipple January 4th this year. He has lost 8o lbs. Still has trouble eating, pain, can’t keep lbs on, still on a varity of pain meds and other stuff to help with issues. Recovery has been a bitch but he can walk, bend, drive, just not energy to work. I would really like to keep in touch to know down the road, years even, how your friend is doing since it seems like my husband’s case and your freind are a similar match.
Well, did you get the stent replaced? I feel that since your mom seems to have memory loss, they probably felt if they replace it now, they don’t have to argue with her later when she may really not know what is going on. Either way, my husband is young, 51 with all this going on , and after treatments and being sick and on so many Rxs, you get tired of it and just want to stop it all. His wishes will be supported by me no matter what. I don’t believe people should live for others, you should live for yourself or you won’t be completely happy. I will always be ok, if he leaves me. He has lost 80 lbs and can’t keep in calories. He went through treatment and is deemed in good shape and just has to get labs and scans every 3 months, but he looks like a skeleton, lacks, sleep, keeping food down, and still in pain. What a nightmare this is.
It is funny reading all the comments back to me. Ofcourse I’m educated in this, and we have an oncologist who will answer his cell phone EVERY time, even when he is out jogging. We can call and ask about every little thing that doesn’t seem right. Still no alarms that we are “in trouble” but a 230 lbs guy down to 155 is really upsetting to see. He drives, does quite a few things, barfs whenever , mostly after meals due to pain pills, yes he takes enzymes and a bunch of other things to help with issues, Everything you suggest I know, do, ask or on top of and so is he. He must have up to 6 Ensure a day (it is like Boost) and he doesn’t barf but still shrinking. Calories are going in but no weight maintained. To be honest I think he is winning on this sight for most weight lost. Please be assured that Every thing related to BM is regular and we are headed to Destin Friday for a week with the kids. I NEED IT !!! But he’ll drive.
Gosh, I still feel that if the nodes are affected the risks for this ugly CC to return are higher. It seems like all the survival success stories lie mostley with those that didn’t have nodes affected. We can only hope. My husband WAS 230 adn 6’1″. He had all tests come back looking good after chemo and radiation but he continues to lose lbs. He is 155 now. I think he can wear my pants!!! I’m ill over it and he doesn’t look good physically, he eats as best he can and takes suppliments, still barfs here and there, maybe do to some meds upsetting him…still in pain after whipple, 5 months later and stomach doesn’t hold much . This is such a long road of recovery and it is upsetting that there is just no reason for such continued weight loss
My husband’s oncologist said that they best results for this cancer comes from getting 5FU chemo. I agree that from what you read, different things work for differnt people, but if there is a “standard of Treatment” then I would assume everyone would be getting the same thing and they aren’t.
My husband is 51. He had the tumor near his pancreas too. He had a whipple and went through chemo and radiation and will get results of tests in two weeks. Hopefully cancer free. Make sure your friends gets treatments afterwards even if they say they got it all. It is your insurance policy so it won’t come back,,,since it always seems to. Also, my husband had his whipple on jan 4th. He lost 60 lbs and is still in pain and his stomach is still a mess and it is 4 months later. He is not able to work, Sleep is messed up, eating, so many Rxs to try to help issues. Granted everyone handles this differently, but the whipple is a huge conconstruction. 6 weeks wasn’t even close to when my husband was up and about. Good luck. If you need to email for any details of what to expect after whipple, how to handle when they pull out the drain tubes etc etc…let me know. linda.sisman@ipaper.com
Welcome and yes you bring us all Hope. Funny about you shaving your head. Our doctors all made sure myhusband knew that in treating CC you don’t lose your hair. But I’m sure a new style is refreshing and easy. Keep us all posted. My husband is on his second week of 7 day 5FU drip into his port, for 5 weeks, so that is like 35 days straight chemo drip and then radiation 5 days a week for 25 visits. Week two, he is wearing down and man, he lost 60 lbs and is so cold and weak, I’m amazed that some people can continue to work. Keep us all posted.
There is someone who I exchanged emails with you had their cancer wrapped around their portal vein. They did get treatment and all their test results are great two years later. Here is her email. Maybe you can chat with her. debrahdci@aol.com. Chemo is the way to go. Even for people who said they were told they didn’t need it due to clear margins after surgery, it came back and people who get the chemo as a safety net seem to come out ok for the years to follow surgery. I have read on this site, many doctors who tell peple NO OPTIONS but after other opinions they just go for broke or find someone who will try something. You have nothing to lose but my gain time. I love the humor in your writting, I have said to my husband, we made a deal, if we ever split up YOU get the kids and he has CC and the future is unknown and OMgosh, I could be stuck with the kids ! haha Stay positive, be optimistic, live each day to the fullest. Someone on this site once said to not be stupid, for lack of better words.. and it means, shoot, my husband just may not make the 5 year mark and I have to know that it is a possibility and not ignore the facts. I too believe that none of this is God’s doing nor do I believe God is going to heal anyone, what I do believe and what I have seen is how God uses people for good. My husband, through this cancer and his faith, have touched so many people that God would be proud of him and he is an example to everyone around him to live for God and you know what, when he goes to heaven, I will know he is loving it.
