mlepp0416
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AWESOME – now just get geared up for celebrating for the next four years!
Go with God and KEEP KICKIN’ THAT cancer!
Margaret
Always awesome to hear some good news on this site. My Tom also got some good news today. It appears that his inoperable tumor is also shrinking and the interventional radiologist is going to try to get a stent in next month!
I hope you and Ben enjoy those Jet Ski’s (but be careful!) and here’s to continued good news!
Go with God and KEEP KICKIN’ THAT cancer.
Margaret
I’m thinking that the very worst thing that anyone with this cancer could do would be to ‘give up’! The problem is that most people believe what their doctor tells them…and if I had listened to Tom’s doctor in December of 2009 when he said “There is nothing we can do, radiation and chemo will not help, go home and get your affairs in order” then Tom certainly would be gone today. Instead I pulled Tom up with his bootstraps and told him to pack a bag, we were going for broke and we were getting some more oncologists involved – we went to Marshfield, Milwaukee and choose the Vince Lombardi Cancer Center in Green Bay to FIGHT this monster! And today we got some good news that the doctor feels that he may be able to get an internal stent in by the next tube exchange because the tumor is getting smaller.
Just goes to show that NO ONE should give up and if you don’t like the answers that you are getting from your doctors sometimes you just have to go for broke and get some other doctors involved in your care.
So Diane and Lily —- you go girls! And keep that FIGHTING spirit alive and KICKIN’ THAT cancer! You are correct, the power of prayers can do wonders!
Go with God and KEEP KICKIN’ THAT cancer!
Margaret
We are continuing to KICK THAT cancer! Tom has his biliary tube exchange today and his Interventional Radiologist reports that the tube is only draining part of the liver and he feels that a lot of the bile is getting into Tom’s intestines because 1) His color is so good – barely any yellow anymore! (This is awesome) 2) The doctor can ‘see’ that the tumor has shrunk (And this is even better)
He will attempt to get a stent in next time he has a tube exchange. He did not want to attempt it today because he feels its a bit too soon and does not want to damage anything (bile duct) in the liver. He thinks that in another month he may be successful – and if the tumor continues to shrink he may have ever a more clear path to follow….YEAH! So lets keep on with all those prayers and meanwhile….
KEEP KICKIN’ THAT cancer.
Hugs to everyone!
Margaret and Tom
Yeah! Chemo DONE sounds great! Hope you enjoy your family time in Disneyland! I know that my husband was very happy when he was done w/chemo. You are right, now it’s just a wait and see what happens next. Hopefully your doc’s have a scan scheduled in the future – it’s important to get those scans to keep an eye on the cancer. Tom said that the radiation treatments were actually a lot worse than the chemo, radiation really ‘wiped’ him out.
Go with God and KEEP KICKIN’ THAT cancer.
Margaret
Ken:
Rick was an inspiration to many of us caregivers and CC Patients alike. He will be missed on this board. My thoughts and prayers go out to you and your family and to Rick’s wife and children. Although he is at peace now, the days ahead will be difficult for his family.
Hugs,
MargaretMy thoughts and prayers are with Rick’s family in their time of loss. Words alone cannot express….
Margaret
Nancy:
When my Tom had high amomnia levels, his doctors said that lactulose is the only medication that would bring that level down. Luckily for him it worked and he only had to take it for about two weeks.
Sorry I have no other suggestions on that.
Margaret
When my husband Tom started to loose weight (He was 167 and went down to 105 lbs – skin over bones basically, he is 6ft tall) I did everything I could to encourage him to eat. Started encouraging him to eat 6 -8 very small ‘meals’ a day. Peanut butter is a great source of protein. Apple slices dipped in peanut butter! Crackers w/cream cheese and a small dab of jelly on top! (Yummy)
Boost is also good, but pricey! Your cancer center should have $2.00 off coupons. I know that Walgreen’s runs boost on sale at least once a month. Buy one and get the 2nd one at 1/2 price. Add two $2.00 coupons and you get quite a deal. Your cancer center will often have samples of boost and ensure as well. All you have to do is ask! They routinely give Tom both samples and coupons. When people ask if there is anything they can do to help, ask them to pick up some boost for you. Tom likes the Chocolate the best.
Malts or shakes will help to gain weight. Use Whole milk (not skim or 2% or 1%) is you are loosing weight you need the whole milk. You can also make the malt or shake with Half and Half….more good protein. Add a banana cause bananas are good for you. You can also make the malt or shake with boost rather than milk. Add extra eggs, cheese, milk, half and half to everything that you can when cooking!
Make pancakes or waffles, again using whole milk or half and half. Add an extra egg to the batter. Use real butter rather than margarine. Make home made peanut butter cookies, great for protein. Protein is the key cause if you’re loosing weight protein will help you gain weight, or at least hold your weight steady….
Make home made cream soups! Again using whole milk or half and half. These can be frozen in small portions and heated in the microwave. When Tom asked for soup, with 10 oyster crackers, I’d put 20 oyster crackers in! (he noticed after a week and commented on it…lol) Pretty much I doubled whatever he asked for. If he asked for one poached egg w/1 piece of toast, I either made 2 poached eggs w/1 piece of toast, or 1 poached egg w/2 pieces of toast. Most times he ate whatever I gave him but first he’d preface it with “I can’t eat all that” to which I would answer, “Just eat what you can” and wonder of wonders, he’d eat it all!
Needless to say – it has been hard, but as of today’s date, Tom is gaining weight and is up to 120 pounds. So, it can be done, but as a caretaker, you have to continually be on top of it, you have to encourage, cajole, tease, be prepared to make whatever the CC patient feels like eating that day.
Funny enough, it seemed as if one day Tom would crave something, so I’m make enough for two meals and the next day he would say “Ughh, I can’t eat that”….and yesterday he loved it! Go figure, eh? So I learned that even though one day he would be craving something, it could be that the next day it would turn his stomach. I blame it on the Chemo cause I know that chemo will change a person’s taste. For the longest time even the thought of an egg would make Tom gag….then one day he asked for a poached egg, and ate them every day for three weeks…now he hasn’t asked for a poached egg in weeks!
It’s a tough job, trying to get someone to eat, when everything to them just does not sound good, or smell good or taste good. I know firsthand, but it’s important to find what the CC Patient can tolerate. Boost is good instead of snack if the solid food is too much. It has all the nutrients that the CC patient needs and can even take the place of a meal. Boost Plus is even better, but agin more pricey than the normal Boost.
Hope these suggestions help somewhat.
Go with God and KEEP KICKIN’ THAT cancer.
Margaret
Hi Lourdes:
Welcome to the best internet side for CC patients and their caregivers. No one really wants to join this site, myself included. But now that you have joined, be prepared to welcome a whole new family into your life. You will find that it’s a family who cares, who understands and who will give you guidance and support when you need it.
Since your dad was just diagnosed, I would advise you to read, read, and read some more about this cancer. You can do that just by reading the posts on this site. As you encounter things it will raise questions that you should WRITE down for your dad’s doctors.
Where is your dad’s cancer? Is it one tumor or multiple tumors? Is it contained within the liver or has it spread? How old is your dad? Is he in good health otherwise?
Both your dad and his caregiver need to educate themselves about this cancer. And you need to ask a lot of questions of his doc’s. Make sure that his docs are familiar with CC and don’t be afraid to seek 2nd, 3rd and 4th opinoins as sometimes that is necessary.
Where does your dad live? Are they any major cancer centers closeby?
Since my husband Tom was diagnosed three years ago I have learned way more about this cancer than I ever thought possible. In fact some of his doctors have asked me if I’m a doctor! (Ha, I wish)
Things to tell your dad….never take no for an answer, instead ask what else they can do. Keep a POSITIVE attitude. Ask for help when it’s needed and graciously accept help when it’s offered!
The never accept no for an answer is important. In Dec. ’09 my husbands ‘then’ oncologist told him that the new tumor that he presented with was inoperable. When I asked about radiation and/or chemo that onc told me that nothing could be done, that my husband should go home and get his affairs in order, that he would be dead in 6 months. As we drove home that afternoon, I told my husband that we were not accepting that. We got those 2nd, 3rd and 4th opinoins. The next three specialist we saw all agreed that it was inoperable, but they all thought that radiation and chemo could be helpful.
Tom underwent 28 rounds of chemo, then onto oral chemo, Xleoda and he is still here and we just started the 20th month of life since that onc told him there was nothing that could be done. Tom has a external bile drain that keeps him from being so yellow, but other than that, all of his number’s look good. Not normal but a new normal for him.
We have had a lot of firsts since that day in Dec. ’09. Three more birthdays, three more holidays, a new grandson who carries Tom’s name, three more years of marriage.
It’s not always easy, granted, but when Tom is down, I am his moral support. A CC patient needs someone who can be there for moral support if nothing else. He needs someone who can speak up for him if he is not capable of doing it himself. He needs someone to go to his doc visits and someone to journal what is being done, when it is being done so that he has good records and those questions that are asked can be answered.
Is your dad a candidate for a resection? Tom has a successful resection in June ’08, but presented with a new inoperable tumor in Nov. ’09. We have hit some very low points during our journey but we are currently in a holding pattern and are lovin every minute of it.
Feel free to ask any questions on this board and feel free to email me any questions. You can read more about my husbands journey by searching for my login name, mlepp0416, ‘My husband and Cholangiocarcinoma and then My husband and cholangiocarcinoma – part 2’.
Go with God and tell your dad to KEEP KICKIN’ THAT cancer.
My thoughts and prayers are with your dad as he begins his journey.
Margaret
Welcome to our little ‘family’ Jukka:
I agree with you about 2nd and 3rd opinoins! My husband was on oral Xeloda then progressed to Gem/Cisplatin. He is currently considered to be in ‘remission’. He did have 28 rounds of radiation before chemo as well.
Currently he is on very little medication – nothing for cancer right now and all his numbers look pretty good. He was able to have a successful resection but presented with a new inoperable tumor 18 months later. One onc told him to go home and get his affairs in order that he had maybe 6 months. Thank heavens we did not listen to that onc. 20 months later he is still here with me! Just goes to show that no one has an expiration date stamped on their butt.
Keep that positive attutide, that is half the battle.
Go with God and KEEP KICKIN’ THAT cancer.
Margaret
Elephantmask:
Welcome and our thoughts and prayers are with your dad. Hang in there and remember that no one has an expiration date stamped on their butt!
Go with God and KEEP KICKIN’ THAT cancer.
Margaret
To all:
Those ‘friends’ and ‘family’ who do not come around anymore? It happens to all of us and my take on it is that THEY are the ones who are the losers! They lose the time that they could have had with the person with CC. They lose a friend, brother, sister, mom, dad, uncle, cousin or whatever the patient was to them.
In the end all that matters is that the person experiencing CC will KNOW who their true family and friends are! It’s the person that stops in for a quick visit, who brings the paper over for you to read. It’s the neighbor who stops over with a dish of dessert that they know you like. It’s the person who NEVER stops caring just because you are sick.
As for the others, maybe your life is BETTER without the person who stopped coming around. CC patients need POSITIVE people in their lives, they need people who really CARE about them as a person.
Nuf said.
Margaret
Hi MaryD:
Welcome to the site that no one really wants to join, but now that you are here be prepared to find a whole new bunch of friends that you can laugh with, cry with, vent with. We are all here for support for one another. It does not matter if you are the patient or the caregiver, we treat everyone as family!
You’ve beaten the ‘hard’ part, the re-section and the chemo! Yes, there is always the fear that the cancer may return, but as you say then you’ll fight again!
My husband Tom had a resection in June ’08 and in Nov ’09 he presented with a new inoperable tumor and jaundice. His ‘then’ onc told him to go home and do nothing that he had 6 months. We just started the 20th month of life because we did not listen to that onc. He underwent radiation and chemo and we have had a lot of ‘firsts’ since that time. One tiny new granson named Thomas after his papa, three more birthdays for Tom as well as three more holidays!
Prayers DO help and also a fighting spirit helps too!
Go with God and KEEP KICKIN’ THAT cancer!
Margaret
