Whipple recovery now CC treatment plan
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Fantastic. I forgot to also mention steroids. They help on so many levels and make you as hungry as a starving dog. I wake up in the middle of the night and HAVE to eat.
Kris
Hi Isisman
Just wanted to let you know that my dad had the same op in January, with seemingly the same results. Here in the UK the standard approach has apparently just been ‘wait and see’ with regard to recurrence.
My dad has got on a trial which tests chemotherapy (xeloda) against surgery alone, which feels like a relief, although of course we have no idea if the chemo will actually do anything…
I believe there more options for the nausea of chemo, it’s just that they are more expensive and doctors can be pressured not to prescribe them – so keep pushing!
Kate
A warm welcome to you Isisman!
I would like to echo all of the above and tell you that by the time you read a “5 year statistic”…..it’s already 5 years out of date!
I can also tell you that because of Margaret (mylepp0416) we have all dropped our pants and verified that we have no visible expiration dates on our collective butts!
When my Mom was diagnosed I decided it was a good time to invoke the “5 minute rule” (The rule states that you do 5 minutes then move to the next 5 minutes!)
This is a scary time for you but it will get better. Take a page from Devoncat’s book, get sassy and be positive. Your husband has already sucessfully come a very long way!
Hugs and lots of prayers coming your way!
Pam
Thanks for all your input. I am going to go with the flow. Whatever the plan is, it is. Roll with the punches. I am not going to go crazy and live on this site since it is not how I would like to spend my time. We are in good hands and whatever time frame he has, that is what it is. I will always be fine. Thanks for your comments and good luck to everyone livng with this mess.
Hi Isisman,
Welcome to the site, although I am sorry that you have to be here. I am glad that you have found us as you will get a ton of support and help from us all. I hope that you will come back often and ask a load of questions as I know that there will be someone here that will help you.
Please try not to focus too much on statistics or survival rates. Think about the now and what you and your husband can do right now.
My best wishes and a load of positive thoughts to you and your husband,
Gavin
Isisman…welcome to the site and congrats on the successful whipple. With CC, some of the stats are bleak but it should be remembered, the analysis is often based on old data. Essentially each patient is unique – your husband joins a growing band of patients with successful whipple’s. That’s a cause to celebrate and take positive from – as you take on the next hurdle. I face a whipple shortly and I’m interested to know how the operation went and how your husband is feeling?
Gerry
Isisman,
Welcome to the site, that NO ONE including me wants to join. But now that you have found this site, rest assured that you will find caring wonderful people here. It’s a ‘stress reliver’ for me knowing that my husband Tom and I, as his caregiver, are not alone.
My favorite saying, as Lainy pointed out, no one has an expiration date stamped on the bottom of their feet (or on their butt!) No one can tell us when the end will come. There are many things that I have learned during my husband Tom’s journey with CC. You can read my husbands story on this site under mlepp0416.
1) Ask all the questions of your husbands doctors that you can. When you think of something, write it down! (there is no such thing as a dumb question)
2) Never take ‘no’ for an answer, ask why! Get them to explain their reasoning in terms that you and your husband can understand.
3) Do your homework, research everything you can get your hands on. The internet is great for that. When you come upon procedures for cancer, write it down and ask his docs about it!
4) Live each day one day at a time. Sometimes we find there is nothing we can do today, but it doesn’t mean that something can’t be done tomorrow
5) Don’t look too much for a ‘time frame’ but rather relish the time that you have together now. Each day is precious, build those memories, let your husband know that you love him and that you will stand beside him. Cancer patients need to know that they have an advocate and the best way their caregiver can do that is to be with them every step of the way.
There are members on this site who, like Teddy have a 4 1/2 year survival rate, there are others with shorter or longer time frames. I do not know how long my husband Tom has but regardless of how long or how short it is, I let him know each day that I love him.
I stopped looking for a ‘time frame’ as soon as his first oncologist said ‘6 months’ cause no one has a right to say how long one has to live.
Go with God, prayers from Wisconsin are coming your way.
KEEP KICKIN’ THAT cancer.
Margaret
Isisman, welcome to our Family. Since Teddy was mentioned by one of his girlfriends, I have to tell you that he is 77, golfs and is looking to go back to work part time. Not that we haven’t had some bumps here and there. Our attitude is, OK, this is what it is, now what do we do.
In the beginning when you first hear the DX you are so frightened because who ever heard of this strange disease? Then you set out to read up on it so you know what you are dealing with. A good idea is to use our search bar and look up Whipple as there are several in our Family who have had one. You can find Teddy’s story under “lainy”. We have never given a glance at statistics
because they are just skewed. As for how long? No one was born with an expiration date printed on their feet. You will find so much help here from wonderful, caring, lovely people from all over the World. And for now? Teddy is a 4 1/2 year survivor! Hear that CC? Put that in your pipe and smoke it! Please feel free to come here and vent, ask or advise. We all care.Isisman….I would also like to welcome you to our board. I think that Kris explained much to you already regarding the possible recurrence of this cancer. I have been told that positive lymph node involvement indicates for the cancer to be present in the blood stream. The question is: will the cancer recur, and if so where, and when? On this board we have seen several positive responses to the various treatment options available presently, and we are always looking for new ones to come our way.
The Whipple is one major step in fighting off this cancer and I am pleased to hear that your husbandWelcome Isisman.
Lainys husband Teddy had the whipple and a reoccurance and is still going strong. Statistics arent that helpful. 1) everyone is different and 2) the lag behind what is currently happening. I have read and read on Pubmed and I was suprised to see that even the statistics regarding surgery are somewhat up in the air because different hospitals use different approaches in deciding how much stuff to take. Yes, the statistics look bleak, but what does that really mean for you?
Statistically I should be either gone or rapidly declining instead I am swimming, travelling and taking 2 classes.
Take the chemo and radiation and then enjoy life and see what comes. When I asked my doctor about statistics he replied that he didnt know if I would get a reoccurance (which I did) nor did he know if I would get hit by the number 63 bus.
Take care and enjoy your husband and hopefully someone with your scenario will come along and give you some info
Kris
I am very confused. After all I read, I can’t really tell what the survival rate is for someone. My husband had the whipple, he had gallbladder, all bile ducts and 1/2 pancreas removed. Didn’t have to touch liver or the two ducts going in there. He had lymph nodes removed and at least one had cancer and the all visible cancer was removed. Now they say cells still exist from pathology test and he needs chemo and radiation for 5 weeks, then a cat scan to follow in 2 months after. They say it has 20% cure after first treatment I believe and then what? All I read is survival rate is 20% up to 5 years. I want to know if anyone has this same scenario…
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