mlepp0416
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Tom has been eating MUCH better this past week. And just when he’s thinking about ‘giving up the fight’ we learn that his tumor markers are down to 120. Previously they had been 194. So, that is good news to some extent. He just does not like the ‘quality’ of his life and believes that the doc’s are only prolonging the inevitable (sp).
However, we continue to plod along day by day and I’m really getting creative in snacks, meals, malts, shakes, desserts and continue to encourage him in every way I can.
You guys are awesome and hugs to all of you.
Margaret
Minnie: I’m one of the persons who encouraged you to ‘go south’ and set up care for Karl in the south! So happy you took that advice, this cancer ruins enough of our plans, but it should NOT rule our lives!
Go with God, enjoy your time in the south and KEEP KICKIN’ THAT cancer!
Margaret
Jeand: Welcome to the site that most people do not want to join.
My husband Tom was diagnosed with CC in May 2008, had a successful left lobe resection, presented w/jaundice in Nov ’09, inoperable new tumor, was given a 6 month diagnosis in Dec. ’09 and here we are in Nov ’10 and he his still with us.You can read his story under my login name (My husband and Cholangiocarcinoma and My husband and Cholangiocarcinoma – part 2)
Just about a month and a half ago they saw new tumors in the remaining bile ductwork and a met to the pelvic area and started him on IV Chemo, Gemzar and Cisplatin.
They were unable to stent the bile duct where the inoperable tumor is, so he does have an external drain with a bag and has had that since Dec. ’09.
Weight loss is his biggest enemy right now, down to 110.9 pounds (from about 185).
I’m certain that there will be other posts following mine.
Good luck in your search, Go with God and KEEP KICKIN’ THAT cancer.
Margaret
Lainy: When Tom had pain in his back, right side, it turned out to be a kidney stone. You may want to have them check for that? An x-ray will generally show a stone if there is one.
HUGS,
MargaretKris: Thinking of you and Hans during this difficult time. I certainly pray that whatever decision is made, it is the best decision for your circumstances.
Go with God and Yea for Chemo!
Hugs,
MargaretLainy: Thank you so much! I conveyed your words to Tom and he was all teary eyed, he wants so much to spend his last days at home. Not sure if he is at that point yet (we’ve not stopped KICKIN’) but when his time comes we will be keeping him at home.
I know that Hospice will help me through the rough times and that in the end, it will be for Tom that I do this, so it will help me get through it all.
Thank you again from the bottom of my heart!
HUGS,
MargaretJohanna;
Tom was dignosed in March 2008, had his resection in Jun 2008, presented with Jaundice in Nov 2009, rad/chemo starting in Jan 2009. His initial tumor was in the left side of the liver and was very small about 2.5cm. His 2nd tumor was also very small but caused a lot of damage/ blockage.
They told tom he had 6 months in Dec 09, and he is still here.
Did you seek another opinoin? Run don’t walk to another doctor or to a center that has experience with CC. Don’t take no for an answer.
You can read more on my husband’s journey under introductions “my husband and Cholangiocarninoma” and “my husband and Cholangiocarcinoma – part 2”.
One thing I have learned is that it’s not necessarily the size of the tumor, it’s the placement of the tumor that can cause all the problems.
Go with God and KEEP KICKIN’ THAT cancer.
Margaret
Johanna: That is exactly where Tom’s tumor is and they tell us that it is inoperable. He did have radiation to kill the tumor, but the dead tissue is still blocking the bile duct or may have destroyed the bile duct, therefore they cannot get a stent in and he has to wear a external drain for the rest of his life. We have been to Mayo twice and even they are unable to get an internal stent in.
If the mass were in either the left lobe, or the right lobe then a resection could be done. Tom’s original tumor was in the left lobe and he was able to undergo a left resection, but his new tumor is right at the juncture you explain and they are unable to do another resection. The main vein that feeds the liver is involved and no one would touch it as he would most likely not make it through the surgery due to blood loss.
Go with God.
Margaret
Tom: As a side note for Ben….I don’t know if he has any hair, but after Tom’s 3rd treatment of Gemzar/Cisplaitin he has started with the hair loss. He’s just a bit ticked off at that cause he said “I’ve spent 63 years growing this hair and I’m kinda partial to it”. I told him that we can buy him a cute scarf (opps I mean hat) to wear!
Tom has not experienced the hic-cups, only heartburn (and hair loss) so far.
KEEP KICKIN THAT cancer.Margaret
Isisman: So sorry to hear of your husband’s passing. Words cannot express….
I know that my husband wants to die at home and after reading your post, I’m not so certain about that anymore.
Hopefully your good memories will erase those memories of his final days and you will be able to remember him as he truely was, not the man that CC turned him into. I hope you will return to this site as you work through your grieving process.
Hugs and Prayers coming your way.
Margaret
THANKS EVERYONE!
I did make the ‘threat’ of a feeding tube and he very quickly declined that.
So then I gave him the very ‘wifely’ talk – it went something like this….”You are 63 years old, and I am not your mother, I am your wife. I can’t make you eat, all I can do is make food for you. You know I will make anything you want to eat and will go buy stuff to make what you want if it’s not in the house. You are a big boy, pull on your big boy pants and tell me what you want to eat or you will eat what I make. If not, you will continue to lose weight and you will not be here for Thanksgiving, Christmas or little Tommy’s 2nd birthday and I will be planning your funeral, so what do you want for breakfast?”
He wanted instant oatmeal with Raisins, Dates and Walnuts. Usually he eats 1 pack made with water. Today I made 2 packs made with Whole Milk. He said “I can’t eat all this” and I told him to eat what he could. He ate it all except for 2 small spoonfuls. About 1 pm I asked him what he wanted for lunch, his response was 1 piece of french toast…..so I made him 2 and he ate all of it! We’ll see how supper goes tonight….but maybe my ‘wifely’ talk got him on the right road.
Thanks for everyone’s support.
Lainy, I REALLY like your idea….I think caregivers could use some illegal substances (and I know where I can get some, my brother is from the ‘hippie’ generation). HA! Let me tell you that watching Tom go from 185 down to 111 is certainly depressing. As you can imagine, he is nothing but skin and bones.
Marion: Too bad we live in Wisconsin, it is not legalized here yet for medicinal purposes, but I too would support that!
Sunshine: His doc did prescribe something to increase his appetite, we just have to go pick it up. (will be doing that later today)
Tom: Whatever you do, please have a talk with Ben about eating and to keep eating as his body needs the nutrition to fight the CC and he will need to keep his strength up so he stays at a healthy weight, this is too terrible to watch someone waste away.
Go with God and KEEP KICKIN’ THAT cancer.
Margaret
Minnie, infections seem to be a way of life with CC. My husband Tom has been hospitalized twice with severe infections during the past almost three years, one of which I was certain that we were going to lose him. However, with good antibotics he has always ‘pulled through’. Now they have him on Levequin which he takes every other day just to ward off infections.
Since he has an external drain tube, I am super careful when flushing the tube and changing the bandage because with the open wound and the tube going directly into his liver….well you get the picture.. Gloves, antiseptic, alcohol wipes, etc.
I don’t know that I would put my life on hold due to infections, CA has good hospitals and doctors as well. Just check with insurance to make sure that hospitals and docs in CA are in network and he then would want to hook up with a specialist in CA. He can have his records transferred out to CA for the time that you would be there. And when you come back home had any ‘new’ records transferred back so his doc’s back home know what transpired during the time he was gone.
I just re-read your post and am not so sure about what his doc said about the cancer causing the infection? I don’t believe that cancer can cause an infection.
1) Wash hand after using the bathroom…..many infections are caused by bacteria from your hands.
2) Sanatize, door handles, facuet handles, cupboard handles, Flush handle on toilets, etc. Lysol wipes work great for that
3) Get hand sanitizer and everyone coming into the home MUST sanatize their hands!
4) Clean, clean, clean the house, toilet, all surfaces in the house 1 to 2 times weekly. You would be amazed at how many germs are lurking around the house just waiting for a chance to go cause havoc on someone who has a supressed immune system.
5) If your hubby has a favorite chair that he always sits in, spray it with Lysol spray at least 1 -2 times a weekThese are the things that we do in our household to help ward off infections for Tom.
Most people can fight off those nasty little germs, but a person with CC cannot combat them cause their body is already working to try and fight off the CC.You also stated that your insurance would not pay for home health care? I work for a health insurance company and that does not seem right. Have you called our insurance company and questioned that? Home health care is a lot cheaper than being hospitalized. I would double check that.
In any case, your hubby has prayers coming his way from Wisconsin.
Go with God and KEEP KICKIN’ THAT cancer.
Margaret
All:
Well, Tom was able to have his Chemo yesterday, so that is the good news. The bad news is that he is down to 111 pounds so he’s had about a 7 pound weight loss. His Onc is very concerned about his weight, as I am. She told him that he HAS to eat.No matter what I suggest, he says ‘uck, I can’t eat that” – so I finally said, “If you don’t start eating you won’t be here for Thanksgiving, so quit making plans!” He is 63 years old and I can’t “make” him eat (but I still try) and I don’t know what else I can do! (Can you hear the frustration in my voice?)
Some days it is just so frustrating living with CC that I just want to scream at the injustice of it all. I just want to go back to my life before CC (but know that it would mean that Tom is gone then) so I really don’t want that!
So here’s the deal, I need some suggestion on what other people with CC who are on IV Chemo (Gemzar and Cisplatin) can eat and what they can tolerate. On the UP side, the doctor has prescribed something that will increase his appetite but the side effect is blood clots and we have to watch for swelling in only one side of his body can it can mean a blood clot, go figure eh?
I told him he should just start smoking some illegal substances cause rumor has it that will increase his appetite. He says that he doesn’t want to do that cause it will show up in his blood work. To which I say SO? What are they going to do to you? Throw you in prison?
I guess I will just have to continue prodding him along and trying to get some food into him so he doesn’t continue to lose weight. Looks like I have some arm twisting to do! Anyone wanna come help hold him down while I force feed him?
I will KEEP KICKIN’ THAT cancer if I have to insert a feeding tube….hummm that’s a thought….he didn’t like the ‘tube’ after his kidney stone, I think I will go discuss a feeding tube with him, maybe that will convince him to start eating cause he HATES tubes!
Go with God,
MargaretCocoa, welcome to the site that no one really wants to join. My husband Tom is currently on a combo IV Chemo of Gemzar and Cisplatin. He just completed his 2nd chemo and so far, no hair loss, no nausea. So far he has said that Radiation was far worse than his oral chemo that he was on the first time and worse than the IV chemo combo that he is currently on. The only side effect that he has noticed is that his taste for food is ‘off’, and about three days after his IV chemo, he sleeps more than usual. Other than that, he is doing good.
He has not had any experience with theraspheres, but I do know that there are others on this site who have. If you type theraspheres in the search at the top of the page, you should get some posts regarding that.
I’m certain also that others will be posting regarding your questions.
Go with God and KEEP KICKIN’ THAT cancer.
Prayers are coming your way from Wisconsn.
Margaret
Manish: As others have said, welcome to the site that no one really wants to join. My husband Tom was 61 when he was diagnosed with CC in May of 2008. He underwent a left lobe resection of the liver. He had no chemo or radiation as they had clean margins.
18 months later, Dec. ’09 he presented with jaundice, a new inoperable tumor in his liver. His oncologist told him that Chemo/Radiation would not help, gave him 6 months to live and sent him home.
We sought 2nd and 3rd opinoins and as a result, he underwent chemo and radiation and the inoperable tumor is now dead. However, they were unable to stent the bile duct, so they put in an external drain bag which relives him of his high bili level which was at 24.9 in Dec. ’09.
At his last CTSCAN, about 4 weeks ago they found 5 new tumors and a met to the pelvic area.
Tom has had one bout with Ascites just after the CTSCAN which was relived with parenthesis (draining of the fluid).
He is now undergoing IV Chemo therapy and at the last blood work, his tumor markers were lower and his bili has gone from 22 down to 17.
So, my advice would be to get a 2nd opinoin if possible. Do your homework and research (This site is a great for research) and when the docs say “NO” or “We can’t” then you need to ask Why/Why Not/ what else can we try?
In my humble opinoin, everyone should have chemo with or without a resection. Tom was first on Xleoda (pill form) and experienced no nausea, no hair loss and very little fatigue. He stated that the radiation was far worse then the chemo. Now that he is on IV Chemo he still has no ill side effects and also states that the IV chemo is not as bad as radiation. However, each person is different.
Remember too that NO ONE has an expiration date stamped on their butt! Doctors can only ‘guess’ as to what they think with happen. Above all, a positive attitude certainly goes a long way in helping a person with CC. Tom will be entering his 12th month of life since the original oncologist told him that he had 6 months! Each day is a blessing and we are building memories that will last me a lifetime.
Tell your father to not put his life on hold, when he is having a good day – enjoy it, do something special. When he is having a bad day, sleep or be lazy and enjoy being pampered, snuggle up on the sofa with a blanket and snooze or watch tv or read a good book. Spend time with loved ones. Build memories.
Please come back to this site often and keep us updated on your dad.
Go with God and KEEP KICKIN’ THAT cancer.
Prayers are coming your dad’s way from Wisconsin.
Margaret
