mlepp0416
Forum Replies Created
-
Posts
-
Kathy: My husband Tom just started chemo with 5 – FU and he has been experiencing nose bleeds also. So far, nothing major so I’m not too concerned (yet) but if it happens again this week (He just had chemo again today) I will have him mention it to his doctor. He also has some swelling in his abdomen but so far not enough to drain. The have to have a large enough pocket of fluid in order to be able to tap it, else they could puncture the intestines or the bowels.
Keep us posted!
Go with God and KEEP KICKIN’ THAT cancer.
Margaret
Cathy: If anyone misses Tom’s port then they would have to be blind! He is so thin that his port really sticks out and the three points are very prominent! Think of a 6ft tall man, medium build, but weighing 115 lbs soaking wet. You can see all his bones, ribs, etc cause he is so thin. Then there is this large lump in his right chest just below the collar bone. Can’t miss that darn thing. Now if he were a heavyweight then I could see it. So far no one has missed his port! In fact we have to keep a close eye on his port cause he is so thin that they are now worrying about those three points poking through his skin. If that happens I don’t know what they will do except to perhaps install a new one lower on his chest, closer to his ‘breast’ area, cause there is a little bit of meat there.
You are right, about this site being a place where we can share experiences, rant and rave, ask for suggestions, cry, laugh and love!
Pam – feel free to ask any questions you need answers on, I’m always happy to share experiences, knowledge when ever I can. And if it’s something I don’t know about, then most certainly there is someone on this site who would be able to answer or give some type of experience! That is what this site is all about…keeping ourselves educated and informed on this evil cancer!
Go with God and KEEP KICKIN’ THAT cancer. Round 3 of 5-FU for Tom tomorrow. I hope all goes well this time around.
Hugs,
MargaretThanks everyone. The tube exchange went wonderful…he has a great doc for that!
Pam: An IV ‘PUSH’ is when they use a syring to PUSH any medication (including chem) into the body rather than letting it drip into the body from the bag hanging on an IV pole. As you watch the Eob’s (Explanations of Benefits) come in for Lauren you will be shocked at how much some of the treatments and procedures cost and also at how much the insurance companies discount the claims! Some are discounted more than 50%, good for the insured…but not for doc/hospital! And you will learn the lingo – faster than most laypersons, because you have a daughter going through itl Tom is well pat 1.5 million already and more with his newly discovered tumor.
Hugs,
MargaretWe are off to the hospital again, we were there Monday cause Tom has something going on in his lungs. They are going to be culturing a specimen to see if they can tell what it is. Today is his monthly tube exchange.
Pam – I can’t believe that someone who is specifically trained in accessing a port could miss it. There are three little points that stick up in the center of the port and that is where the needle goes in. I know that not everyone can access a port UNLESS they are trained on it. Lauren is correct in insisting that someone who can do it right does it. Here’s to hoping that Lauren does not experience anything like that again! As for her experience with the biopsy….I am flabbergasted with that one.
I did speak to Tom’s pcp on Monday and he said in a chemo situation they should not have done a push with 50CC of the anti-nausea drug. They only do that in a inpatient or ER situation when it’s urgent. In a chemo situation it’s meant to drip in slowly so that the person getting it gets the most benefit from it. You don’t get that with a push. And he recommended that we question it at the cancer center.
I hope that everyone has a WONDERFUL day.
Go with God and KEEP KICKIN’ THAT cancer.Margaret
Grover: Welcome! My husband Tom’s Alk Phosphate was at about 1500 when we first started his journey with CC. His cancer was in the left lobe of the liver and they were able to do a left resection but they also took part of the right lobe of the liver along with the gall bladder. About 70% is now gone. His A.P. was holding pretty steady at about 1258 for many months. Then it dropped to 958 and just recently went to about 659. The nurse at the oncolocy center was so concerned with that 659 for A.P. that she was wondering if he could undergo chemo. I asked what it was, and when she showed me the printout I started laughing (so sorry, but it was funny)….I let her know what his A.P. has been and that I was so happy to see it at 659 cause that’s the lowest it’s been in 3 years! And in that time he had a resection, reoccurance of a tumor, turned jaundiced, had an external bile drain inserted, underwent 28 rounds of radiation, 6 cycles of oral chemo, had a port installed, gets a tube exchange every 4 weeks and underwent about 4 rounds of IV chemo….and after all that because he now has a new tumor that is growing and his doc wants him on 5-FU chemo, the nurse is questioning if chemo would be safe for him cause his A.P. is at 659? He did receive the chemo! Sometimes people just put too much emphasis on the ‘numbers’!
Go with God and KEEP KICKIN’ THAT cancer. I hope both you and Tom live to be 110. He is going to be 65 this coming Feb. So he’s got a lot more years to get to that age. He has outlived the 6 months that they gave him, today we celebrate 2 years since we heard those words. Stay POSITIVE.
Hugs,
MargaretHeather, in two days it will be exactly two years since my husband’s ‘then’ oncologist told him “you have maybe 6 months to live and chemo/radiation won’t help”. Just goes to show that there is no doctor that can tell you how long you have, only your God knows that.
Tell your dad to hang in there, and go with God and KEEP KICKIN’ THAT cancer. Tom is still fighting even with a new tumor causing some issues and he is currently back on chemo…but he’s not ready to give up yet.
Hugs,
MargaretMichael: Tom had a left resection in 2008 and they took out about 70% of his liver, the entire left lobe and part of the right lobe. I don’t think they would even consider him for this type of stenting as there is no ‘junction’ left anymore. And with his overall health, he most likely would not be able to survive any type of major surgery. He is 6ft and weighs 112 lbs or so. Just not a good candidate for any more invasive surgery.
They have even tried to get past the tumor by one doctor going down the inside of his body (ERCP) and the other doctor accessing the live from the outside of the body….their wires came within milimeters of each other but with the tumor between the wires. They suspect that the bile duct that has the tumor has been destroyed by the tumor or that the radiation could have destroyed it as well. So I believe that there is no way around having that dratted external drain bag. Mayo clinic has also tried twice to get an internal stent in, and my thought is that if the Mayo clinic doctors cannot get the stent in then on one can.
Although the external drain is a pain in the butt, we’re OK with it as it is keeping his bilirubin level manageable.
Thanks for the advice though!
Hugs,
MargaretHebrown: Your post brought tears to my eyes. You are so young to have lost a parent. As others have stated, he would be so proud of you for finding this site and posting on it. Please come back often and let us know how you and your family are doing. You will find a lot of caring and compassionate people and we are all here for you, your mom, your brother. It may help them if you let them know about this site as well. They are all free to post as well.
I lost my father when I was about 22 years old and that was very hard for me. Although he and I often ‘butted heads’ when I was younger (age 15 – 17) he became one of my best friends just shortly before he was diagnosed with pancreatic cancer. I am now almost age 60 (gosh- how did that happen?) and to this day I miss him and think of him often. My mother passed away about 16 years ago and I still miss her and think of her as well. It’s never easy to lose a parent, but we all have to go through it one day.
Stay strong, talk about your loss to others, even if it’s only on this site. One day your heart will heal and you will remember the good times you had with your father. You may want to think about creating a ‘memory book’ about your father for yourself and your family. If you know anything about scrapbooking, that is a great way to do a memory book. You can put pictures of him and your family into it and write down what the picture was about. This will also be a healing procedure for you to help deal with your loss.
Hugs and my thoughts and prayers are with you and your family.
MargaretElsie: Welcome to the site that no one really wants to join. My husband Tom is in a similiar situation. He did go through a resection in June ’08 and had a (almost) great 18 months then started w/jandice. He has an inoperable tumor now and is on his third time with chemo. This time they are giving him 5-FU and he is very tired and weak. Walking is very hard for him and he has lost a ton of weight.
But on the flip side, in a few days it will be two years since his ‘then’ oncologist told him he’d have less than 6 months. We are no longer with that oncologist because he didn’t seem to be able to do anything other than to sit at his desk and stare at the computer.
Tom now has a great team of doctors looking after him. Although they have told us that they can’t ‘cure’ him, they gave us options which is what we were looking for. And they would not give him any indication of how long they felt he had left, that is up to God, not doctors. For which I am grateful because that is what I needed to hear and what I thought all along!
Please come back to this site often, as you will gain a lot of knowledge and also get comfort from knowing that you are not alone with this evil cancer. We have a lot of caretakers posting on the site, as well as CC patients. We all learn from one another and we all get moral support as well. Only the people that are dealing with this cancer really understand what we go through!!!
Your partner is going to have good and bad days, just like my Tom does. One day he is bright and chipper and the next day he sleeps all day. However, he has been on the 5-FU chemo for only two weeks and it really seems to be doing a number on him as it seems like he is sleeping more and more and is really tired all the time. It could just be that the 5-FU is too strong for him as he only weighs in at 112 (He used to be 180) and he is 6ft tall. (very thin now!)
Take it one day at a time, never accept ‘no’ for an answer, ask what else can be tried/done. Make them think outside the box. Make sure that the docs are familiar with CC. Take notes and write down your questions or you will surely forget to ask them. Do all the research you can on CC as the more informed you are, the better questions you can ask! (I was so well informed that I had a Mayo Clinic doctor ask me if I were a doctor!)
Go with God and KEEP KICKIN’ THAT cancer.
Prayers are coming your partner’s way from Wisconsin.
Hugs,
MargaretTrevor:
1) Take it one day at a time, one hour at a time, or one minute at a time
2) Be thankful for the things that you do have and for the things that you can still do, like the Tango! (I’m jealous, I can’t do the Tango!)
3) Enjoy each day, take joy in the sunshine on your face, the wind in your hair, the rain on your face, the smell of the air after a rain shower, the smell of freshly mowed grass, the smell of the flowers, the color of the leaves in the fall.
4) Spend time with your family and loved ones. Make memories together, take lots of pictures.
5) When you are feeling well, do something fun, implusive, silly.
6) When you are not feeling well, sleep, rest, curl up on the couch with a blanket and pillow and watch a good movie.
7) Don’t be afraid to ask for help when you need it. If help is offered, accept it graciously. Let family and friends be there for you, let them assist you, there is no shame in that.
Don’t be afraid to cry, to let your emotions come out. Stay positive, don’t take no for an answer, ask instead what else can we do or what else can we try.
9) Don’t be afraid to ask questions! Write down your questions and ask those questions of your doctors and make sure that they give you answers that you can understand.
10) Turn to your faith, put your trust in your self, your family, your oncologist and doctors. Stay true to yourself, stay positive. Don’t have a pity party.I could go on with more suggestions as to how to make it through each day that God has chosen for you to be here on earth. Come back to this site often and you will gain knowledge and strength from all the other CC patients and their caregivers on this site. Welcome to our little family. We are all herre for the same reason…because either someone we love has CC and we are their caretakers, or because one has CC and wants the emotional support that we get from this site.
Go with God and KEEP KICKIN’ THAT cancer.
Hugs,
MargaretTom’s blood work was fine today (I was wrong) and he did not need any red blood cells! He had his 2nd round of chemo 5-FU today and is really wiped out today.
1) The anti-nausea drip bag was not working right, so the nurse pulled it out into a syring and ‘pushed’ it into his port in 30 seconds or less. Tom immediately felt nausea and thought he was going to throw up.
2) The 5-FU push is supposed to take place 1 hour after the medication bag starts running, but the nurse did not do it until 1 1/2 hours after the bag started, therefore he only had 1/2 hour of the medication (rather than an hour) that is supposed to protect his kidney’s after the 5-FU push
For heaven’s sake, this is a cancer center where they are supposed to follow protocol to a T and they make mistakes like this?
They will be getting a call on Monday from me to ensure that it does not happen like that again.
And I told Tom that he has to learn to SPEAK UP FOR HIMSELF!!!
He knows the drill and HAS to tell them that they cannot push the anti-nausea medication into his port EVERY AGAIN, and one hour into the kidney medication he has to let them know that it’s time for his 5-FU push! (Wifely talk time again) As he is NOT a little kid and he has to stand up for himself as I can’t be by his side for every minute of every day!
Go with God and KEEP KICKIN’ THAT cancer!
Hugs,
MargaretPam: The tattoo is a pair of Eagle wings, with a green ribbon (liver cancer color) between the wings. Tom written on the left side of the ribbon and Margie on the other. Then “On Eagles Wings” written above the wings.
LOL Gavin! No I’m not “planning” on getting any more tattoo’s! But my youngest daughter thinks I need to get one for my children and says she’ll design one and once I see it she thinks I’ll want to get it. But I’ve got the one I want so am not thinking about getting another. Who knows eh?
I was surprised that it didn’t hurt all that much either. More like a burning sensation if anything!
I’m sure that whatever Tom has today (chemo or red blood cells) he will do fine!
Hugs,
Margaret
Wow ! Michael that is just AWESOME news. I know how much Tom would love to ‘loose’ his external tube and bag, but they have tried about 7 times to get a stent internalized, and Mayo Clinic has tried twice – all attempts were not successful
so we just continue on with the external drain tube. He will have that for the remainder of his life – unless by some miracle, the tumor simply gets reabsorbed into his body and allows the doc who does the tube exchanges to get his wire past the tumor. (He checks every time) The doc would also love to get an internal stent in.I’m so happy for you because I know what a pain in the behind dealing with an external drain tube can be!
Go with God and KEEP KICKIN’ THAT cancer.
Margaret
Tom goes in tomorrow for his second round of Chemo 5-FU but I really don’t think that they will be doing chemo – after last week all he has done this week is to sleep almost all the time. I thing the 5-FU really knocked him down. I’m betting that he will be getting a red blood cell transfusion tomorrow rather than chemo.
Did you check out my tattoo yet?
Hugs,
Margaret
