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Welcome to our little but elite community. My husband had a Whipple surgery almost 3 years ago at the age of 72. It was contained in his bile duct valve. They also took out the gall bladder and his duodenum with a resection. It has just appeared now where the duodenum used to be. HE is going for a PET can today and if no other hot spots hopefully will have Cyber knife surgery, the newest non-invasive form of surgery. This started out only for brain cancer and they are now using it on liver and other organs. This cancer is unlike others so unfortunately the same prognosis and forms of treatment do not apply to everyone. The surgery was done in Wisconsin while we were vacationing and all follow up has been done here in Phoenix. All doctors in both cities told us that chemo and radiation will not work on Teddy’s type of cancer. They are also against doing another surgery as it would be similar to the Whipple. We are hoping the cyber knife works. Right now fighting insurance as they sound like they have not heard of it!!! No one expected Teddy to come this far. Everyone and every case is different. The important thing is to get more opinions until you are satisfied with how you are being directed. It is also important to stay hopeful and stay strong. Best of luck. Lainy
Chrissy, my husband is the Miracle Man and I would like to say something about about Vitamin C. My daughter’s fiance was diagnosed with Lymphoma a year ago. He is 48 and in great health otherwise. He had his chemo and decided along with that to do the Vitamin C intravenous after reading up on it. First he went to a clinic here in Phoenix called Envita then switched over to a Naturalpathic doctor and she was half the price. Insurance companies do not cover this. At any rate, he swears by these Vitamin C treatments. This doctor has dealt with patients who had CC and lung cancer and the whole kit and kaboodle. He has met actual clients of hers in the office and the Vitamin C is working for a lot of people. He met a child with brain cancer and a man with lung cancer. GONE! No cancer. Of course I am sure it does not work for everyone but it is certainly worth a painless try. My Miracle Man is going in July for Cyber knife surgery another NEW non-invasive way to kill the monster! Good luck. P.S. The Vitamin C also helps ease the side effects of chemo. Lainy
Jeff…you are so right about the CC mets!!! This Cyber Knife doctor from yesterday, plus the transplant surgeon last week and our ONC said this is the same CC cancer but it is in a different place. Where the duodenum used to be. It is and always will be the same kind of cancer! It was contained in the bile duct valve to start with, they got all that and he was clean and green until this
and even though its been 2 1/2 years it is labeled the same. What can we say? Guess it knows a good resting place when it finds it! Lainy
We can just feel your pain and frustration. My husband jaundiced and had CC in the bile duct valve. We were fortunate that it had not spread and he had a Whipple Surgery. That was 2 1/2 years ago. We found out last week that it has come back where the duodenum used to be. We are seeing a doctor tomorrow who does cyber knife surgeries and hoping he will take Teddy on and do it quickly. The point is this cancer is a silent monster until it rears it ugly head.
We are so sorry you had to join our little community this way but it sure helps to write about it. Lots of very thoughtful, wonderful people on this site.
Our thoughts and prayers go out to you and your family. Lainy
OMG! You all hit me square on today! This is all exactly what I am experiencing. We find out tomorrow when we can see the Cyberknife doctor. In the meantime I also get “has he tried this has he tried that”? I try to tell myself this is the only way people can show they care. But with the stress I am under right now, I just don’t want to hear it. Oh here is a new one to add. From the beginning almost 3 years ago (The Whipple Procedure) I have written explicit e mails to all and phone conversations to all. Just the other day a family member said oh, we thought his liver had cancer!!! Like, how much do we have to repeat and talk about. I feel my brain is consumed with repeating and repeating and then they still get it wrong!!! Like, I just want to turn the world off for awhile. I have found the only ones who really understand and can offer some bit of hope are all the doctors working with us.
Nobody fights as hard or is as strong as we are as care takers and our loved ones who are suffering with this monster. Thanks for letting me vent!!!! Lainy
Jeff, we should call you Lewis, of Lewis and Clarke. Always gong off on new adventures!! Better yet, if Teddy is Miracle Man, you are Superman for all you have endured and your show of strength. Have a great time in Maine and if in the woods don’t pick on scratchy leaves, bring your own soft tissues!! Lainy
Thanks Kris and Karen for your great words! Yes, we are told this cyberknife is highly successful. Who nows maybe in our lifetime we will see a cure for Cancer???? The good part of this and yes there are good parts is the strength we can come through with that we did not know we had. And the many wonderful people on this site you are so thoughtful and kind. Say, maybe we should have one big convention??? And all meet. I like that!
Sorry to hear you didn’t make that touchdown yet but I am sure the coach has some more plays up his sleeve. From what I read about you and your strength of character and your goodness to others, I don’t think he’s going to take you off the playing field for a long time! Us Rookies need a seasoned player like you!
If you are unable to make a touchdown, here and there, gaining a few yards would be very nice! Even if I am on the “other” team…..GO Pack! Thinking of you…Lainy.
A POEM FOR DESTIN & HIS FAMILY
Happy little angels
Layed down their harps one day,
‘Cause word arrived that Daddy
Was coming up to stay.
Now all the little angels
And all the big ones too
Remembered how they’d watched on earth
Things that daddy’d do.
So they did didn’t get the rocker,
Nor his slipper soft and gray,
But gathered all the stars that shine
In the Milky Way.
Some of them were tarnished
And needed to be brushed,
And some were softly weeping
And needed to be hushed.
Many a little angel
Had tales he could tell
Of the many little hurts
That somehow daddy made well.
God gave him lots of patience
And extra energy,
That all his days on earth
He’d serve his family.
So all the little angels
That had things to be done
Clustered all around the daddy
On his celestial throne.
And daddy’s eyes were smiling
And his eyes were full of mirth
For he knew he’d be as happy
In HEAVEN as he was on EARTH.
My thoughts are with your family…..Lainy
Welcome to our club. This club is very unique as all the members are extremely brave, very strong mentally, at times even funny and always supporting one another! My husband had the same type of rapid onset almost 3 years ago. He is now 75 and survived the worst…a Whipple Surgery. His cancer was in his bile duct valve. I won’t go in to our details either, you can find all my posts (Lainy) but he is doing well even though he is having a kidney problem that hopefully will be resolved the end of June.
He also sees the ONC every 3 months as this is the kind of disease that needs to be watched and thats OK, to come up with good results. He is still working full time, golfing and he would tell you that the most important thing is to think positive! And that prayers do work! We will all be thinking of you and waiting to hear that you are doing just fine.
Thank you Marions and Jeff but have you ever heard of this type of cancer “jumping” from the bile ducts to the kidneys? Our Urologist is one of the best but I am uncomfortable with the fact that he has warned me 2 times now that Teddy survived what few do and that its been 2 1/2 years. Like, we know that, so what are you trying to tell me? Honestly the hardest thing was to tell him that he will again have a bag after having 3 before. But you can’t keep Superman down!
Hi all. I wanted to give an update on the hiccups. I had not looked at this in a long time.
A Pharmacist friend of ours told Teddy to try an old remedy. Briochi, its in a blue plastic bottle and can be bought over the counter. Worked on the first try!! Much like ALka Seltzer. Hope this helps anyone with the problem. Lainy
Russ..definately get another opinion. My husband had bile duct surgery August 2006 as it was in his bile duct valve. He had a Whipple and at 74 is doing well. He too had jaundiced and they put a stent in until surgery. Do not know where you are located but there are other choices. Please seek another opinion. In coming to this Board you came to a good place. Good luck Lainy
My husband had a Whipple Surgery October of 2006. He is doing really good now. We were out of town and it was an emergency as his bile duct valve had closed and he was terribly jaundiced. We spent 3 months in Milwaukee WI due to other complications. Upon our arrival home in Phoenix he still needed to be under the care of a specialist and we found Dr. James Cashman who happened to be the director of liver transplants at Banner Samaritan Hospital. He is tops here in Phoenix and the area and also does a lot of Whipple Surgeries. Right now Teddy is under the care of an Oncologist but should the need arise we would call Dr. Cashman in a heart beat.
Hang in and be strong thas the only way to get through this….and with lots of prayers.
You mentioned Southwest so am not sure where but maybe this can help. Lainy
Hi John: My husband had a Whipple surgery 1 year ago and he itched like crazy. Nothing helped until we found a cream called Sarna at Walgreens. It is very strong and you should not use it more than 2 weeks at a time but it really did help where all else failed.
There are some things we just have to find out on our own! Lainy