mlepp0416
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Kathy:
My husband did not have any chemo after his ‘successful’ resection because his doc’s did not feel it was necessary because they had clear margins.
18 months later he started turning yellow and I knew something was wrong. They found a new inoperable tumor in the remaining right biliary tree. His new oncologist is telling us that if he had been given chemo he may not be in the position he is in today..so far he has ha 28 rounds of radiation that ‘killed’ the tumor, then he had oral chemo, xleoda for about 6 weeks. After a ctscan and after his tumor markers started elevating, they installed a port and started him on IV chemo, gezmar and cisplatin. His tumor markers are again on the downward trend….because of a severe infection in his liver, the chemo is on hold for now.
Tom’s new team of doctors stated that if they had been in charge after his resection he would have automatically ordered chemo as even with a successful resection with clear margins there can still be stray cancer cells lurking about and the chemo would have zapped those cells.
We are taking it one day at a time now and are thankful for each day that he is here with us. I do not know how much time Tom has left but I will take as much time as I can get! We were concerned that he may not be here to celebrate our 10th wedding anniversary on Feb 11th, but it now is beginning to look that that might be a milestone that we will make! I have been saving a bottle of wine that we got for a wedding present so he better be here to drink it (only a sip for him!) with me! He has also been talking about he and I renewing our wedding vows (how sweet of him) so we have that on the agenda also. We are not letting CC rob us out of our lives….we are proceeding as normally as possible.
Keep on KICKIN’
Hugs,
MargaretKathy:
When my husband was diagnosed about 3 years ago we had quite the discussion with his doctors and I did my own research on this disease. Cholangiocarcinoma patients are less likely to receive a new liver via transplant because for what ever reason, this cancer DOES re-occur with or without a transplant. Liver’s are hard to come by, and many CC patients do not meet the protocol for a transplant. Live donor liver transplants are risky and they also don’t like to do those. The only real cure is a successful resection (removal of the cancer from the liver which means cutting that part of the liver away)
Some of the stats that I recall reading that about 10% of CC patients are eligible for a resection and of that 10% about 5% will re-occur….so I would assume then that is where your doctor got the 50/50 numbers from.
My husband Tom was in the 10% eligible for a resection, and he was in the 5% that re-occurred, this happened 18 months after his surgery, and the new tumor is in-operable. However, here we are 13 months later and he is still with me.
Never give up, keep that fighting spirit going!
Go with God and KEEP KICKIN’ THAT cancer!
Margaret
Andrea:
My husband Tom has had an external drain now for over a year and his interventional radiologist (IR) wants it flushed 1 x per day, along with a bandage change. Bile gets ‘sludgy’ and without the flush it tends to clog up the holes in the drain. With Tom’s tube his IR even modifies the part of the tube that is in his liver, adding many more holes in it, so that it plugs up less often. He currently goes in for a tube exchange about every 4 – 6 weeks, and we are now doing them about every 4 weeks to lessen the chance of infection since he’s had three really bad ones now.
As part of my process for flushing the drain, I first use alcohol swab to clean the line, then attach the flush, let it drain out onto a gauze pad, then use alcohol swab again and put the cap back on. I then remove the bandage, clean the wound with a antiseptic – using q-tips to clean the gunky bile out of the wound (w/ antiseptic on it of course and rebandage, using 4×4 gauze and covering with Tegaderm film. Using this method has worked for over a year and he has never gotten any sores around the opening for the tube – in fact, his doctors have often complimented me on how good the site looks. Bile can break down the skin and cause other complications….but Tom has not experienced any of that…thank goodness!
In fact we just again asked the IR if we needed to continue flushing the tube on a daily basis and his answer “Yes, by all means! That is part of the reason that he is doing so well because that flushing is keeping the tube open longer than it would be otherwise”…..so we will continue (even though at times it seems to be a pain in the a**).
Please don’t focus a lot of the 3-4 month prognosis….Case in point, Tom’s original oncologist with the VA gave him 6 months, with no other options. We did not listen to that and sought other opinoins. After radiation and first oral chemo, then IV Chemo he is still here and in fact has started the 13th month of life! Has it been hard? Yes. Lot’s of bumps in the road such as weight loss, etc. But he is still here and going strong. Enjoy every day with your Dad, build those memories. When he is having a good day, take advantage of it and try to do something special. On his bad days, just spend time with him, watching TV or just talking – sometimes it’s good just to sit there and say nothing! I know that Tom’s chief complaint is that his two children do NOT spend hardly any time with him and right now he needs that. I’ve tried explaining it to his kids but they just don’t get it.
Prayers are coming your dad’s way from Wisconsin!
Go with God and KEEP KICKIN’ THAT cancer.
MargaretHans: my thoughts and prayers are with you.
keep her memory close.
we have lost a wonderful person & God has gained an angel.Margaret
ladybug: my husband tom’s alk phosphate level was almost 2,000 in march of ’08 and he is still here battling CC. At one point his billy level was 24.9 but much lower now & his alk is now down to about 900.
i would not focus too much on the ‘numbers’ but more on how he is feeling in general. Cherish each day!
Margaret
Wow, when it rains, it pours. Wrist is painful & I have to wait till Thursday to get into the orthopedic doc. They want the swelling to go down before they will do anything.
Tom’s tube exchange went well, they are culturing the part of the tube that was in his liver because the bile had a foul order. Hoping that we caught it in time & there is no infection.
Then yesterday evening my 62 year old brother Jim, was taken to the ER by his son & after tests they identified a brain bleed & he was taken by ambulance to Theda Clark hospital in Menasha, Wisconsin, where they have a great tramatic brain injury center. He had a three hour surgery today to repair the aneurysm. Great technology there, they use a technique where they go in through the groin with a microcatheter, guided by x-ray imaging up into the brain to the site of the aneurysm, then small platinum coils are pushed into the aneurysm through the microcatheter. This is continued until the aneurysm is fully packed with coils, obstructing the flow of blood. An electric charge at the coiled wires end detaches it & the micro catheter is withdrawn. Blood clots around the coils, stopping the aneurysm from bursting. About 15% of brain aneurysms brust and are fatal within 15 minutes. God was watching over my brother Jim today! Although he is still not out of the woods, the next 24 -48 hours he still has a risk of Neuro-spasms (stroke like symptoms) which can affect his thinking processes and alter his demeanor. He will be in ICU for the next 2 – 3 days, and if all goes well will be released after a week. Prayers gratefully accepted from all my Changilocarcinoma family!
Next thing on the agenda is seeing the ortho surgeon on thursday and getting my wrist taken care of, and I did Tom’s tube flush & bandage change today with no problem, it just takes me a bit longer & he has to help a little bit—-teamwork!
By the way – a baby aspirin a day cuts your chance of a stroke or heart attack by 50% – so lets all start taking one a day!
Go with God and KEEP KICKIN THAT cancer. (HA, I do pretty good typing with one hand & using the mouse with my left hand)
Margaret
Beth:
Go Dave Go! He sounds like a trouper, I am so glad that you got him to the hospital & that they were able to help him!
I’m hoping also that the doc that said his liver is failing is WRONG. Stranger things have happened!
Go with God and tell Dave to KEEP KICKIN’ THAT cancer!
Hugs!
Margaret
Joanie:
Welcome to our wonderful site and know that you are not alone. So sorry to hear of your mom’s passing. However, having said that, her passing may have been a blessing in disguise. Over the past three years I have watched this disease take my once vibrant, healthy husband down to a shadow of the man he once was. Yes, he is still here with me, but what a price he has paid! He weighs in at a whopping 105 lbs and is 6 ft. tall, so you can imagine how very thin he is.
Then there are the never ending surgeries, tests, scans, chemo, radiation, tubes, needles, ports and so on. Am I glad that he choose to fight the cancer? YES! Was it worth the fight? In some ways,yes, but in other ways, no. I see first hand how it has affected him and it breaks my heart.
Your mom is at peace now. Don’t play the “what if” game or the “could of / should of” game because it will drive you & your family crazy. Seek a grief support group or counseling if necessary. Keep your most happy memories of your mom foremost in your mind, not the last month of her life. Do a scrap book with pictures of your mom and her family, this in itself can be theraputic and healing.
Based upon some of the stories that I have read on this site, I plan on keeping Tom at home w/home hospice when his time is near. I do not want him to suffer any more and he will have a morphine pump!
Go with God Joanie and remember your mom’s wonderful memories!
Hugs from Wisconsin!
Margaret
Tom goes in for a tube exchange tomorrow…….and I fell today and broke my right wrist today. I have to go to an orthopedic surgeon to see if they have to ‘pin’ it or just put a ‘real’ cast on it. Humm, this will be a challenge to flush his tube and change his bandgage daily
Go with God & KEEP KICKIN’ THAT cancer!
MargaretHans,
Thank you so much for the update in Kris. Prayers are coming her way from Wisconsin!
Tell Kris “One day at a time, One moment at a time if necessary”. Hang in there kiddo!
Hugs,
MargaretCarollynn: Welcome to the site that no one really wants to join. Did your mom’s doctors suggest chemo? If not, ask why. My husband had a successful resection where they removed over 3/4’s of his liver and he had clear margins. That was in June 2008. We did question about Chemo, but the doc’s figured that since he had clear margins he did not need chemo. In hindsight and after many hours of research (on this site and on others) even with clear margins one should have a few rounds of chemo (to slow down any progression of the cancer and to kill off any stray cancer cells floating around).
My husband Tom’s new oncologist are saying that if he would have had chemo after his resection he may not be in the position he is in today. He presented with a new inoperable tumor in Nov. ’09, and his oncologist gave him 6 months. We did not accept that and sought 2nd, 3rd and 4th opinoins. Although they all agreed that the new tumor was inoperable, the disagreed with the no radiation, no chemo opinoin of the first oncologist.
He underwent 28 rounds of radiation and oral chemo. When his tumor markers started to climb, they started him on IV chemo (Gemzar and Cisplatin) and here we are today, just ready to start the 13th month of life since the oncologist told him he had 6 months.
I do not know what the future will bring, I don’t know how long Tom will be with me, but I do know that he does not have an expiration date stamped on his butt! Has it been a tough road? YES. Has it been worth it? YES. If we had to do it again, would we do it differently? YES, we would insist on some type of chemo, EVEN if they told us they had clear margins. Chemo will attack and kill off any stray cancer cells.
So my advice would be to ask all the question you can. Write them down because you will forget them otherwise. If your mom’s doctors don’t give you answers, ask them to research it and get back to you. Never take ‘no’ for an answer, instead ask what else can be tried or what else can you do.
Tom and I will be celebrating our tenth wedding anniversary on Feb. 11th 2011 and I just know that he will be here with me for that. And I’m hoping that your Mom will be with you for a long time to come!
Go with God and KEEP KICKIN’ THAT cancer.
Hugs,
MargaretMinnie305:
I think that getting the internal (or external) stents (or tubes) changed out on a fairly regular basis will ‘slow down’ the chances for infections. But probably will not ‘stop’ them entirely.
Margaret
Nancy: Please do not feel that you ruined everyone’s day! You DO ‘have’ two children, even though your son has passed away, as a parent, he is still your child. I can only imagine how incrediably sad it is for a parent to loose a child, as it is just not the natural order of how it should be.
My brother had an infant son who passed away some 30 years ago, but when he discusses his ‘children’ he always says “I have two sons, Jamie who is 38 and Scott who would have been 36 but he passed away when he was an infant”. And that works for him, so Lainy’s suggestion is a good one.
Hugs,
Margaret
Hi Pam:
My husband Tom has an external drain (because his tumor blocks the bile duct, inoperable) and his doc’s had him on Levaquin as a long term antibotic, to lower his chances of getting an infection from the external drain tube. However, that did not work and he continued to get recurrent infection.
After his last bout (and inpatient hospital stay) they called in the ‘infectious disease team’ and he has now been on three different IV antibotics to (hopefully) get rid of the infection. The infectious disease doctor told him that he would probably never have a ‘normal’ white blood count and their goal is to simply keep him out of the hospital. She said that if they can keep his white blood count below 15,000 then they are happy with that, however, that might require periodic IV antibotics.
When Tom did have internal stents in the liver, they had to be ‘changed’ out for new ones about every 6 weeks to prevent infections, and now with this external drain tube we are finding that a tube exchange has to be done about every 4 weeks to prevent (or slow down) infections. It is what it is I guess! Evidently infections are just a way of life for anyone with any kind of tube for long term use….
And, you are right, an infection for a CC patient can be deadly. Since they already have a supressed immune system (because of chemo, etc.) their body cannot fight off germs like a healthy person can and therefore can cause a lot of harm, including death. That is why you have to learn to recognize the signs and get your loved one to the doctor. Things that we watch for are fever over 100, (not always present), more fatigue than normal, general feeling of overall sickness (what I call gloom and doom syndrome)….then I know it’s time to consult w/docs.
Go with God and KEEP KICKIN’ THAT cancer.
Margaret
