mlepp0416
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Maria:
I had to chuckle when I read your post! “Scary” doctor brought back a memory of when my husband was first diagnosed. The hospital set up an appointment with a surgeon for my husband and when we met with the doctor I had a 2 page list of questions for him….most of which he either could not answer or gave evasive answers….talk about scary! He had gone ahead and scheduled a day for the surgery, but when we left his office and discussed it on the way home, I told my husband that there was no way that man was touching him! This doc just did not give me any ‘warm fuzzies’ and I called later that day and cancelled the surgery. Keep in mind that this turned out to be a very expensive surgery and hospital stay.
About 15 minutes after I cancelled the surgery, the doctor’s office called back and tried to convince me to keep the surgery as scheduled. I finally had to tell them that we were going to seek 2nd and 3rd opinoins and that this doc did not give me any warm fuzzies (no bedside manners).
Thank heavens we did seek other opinoins and we found a wonderful doctor in Milwaukee who spent tons of time with us explaining the procedure, etc. and had done hundreds of liver resections and liver transplants. She was able to perform Tom’s liver resection and felt that they had gotten all the cancer. For 18 months Tom was fine and we had a wonderful 18 months, but then in Nov. ’09 he started turning Jaundiced. The cancer had returned and this time it was inoperable.
Then his ‘then’ oncologist told him he had 6 months and that chemo and radiation would not help, and there was nothing else to do. This time we again sought 2nd, 3rd and 4th opinoins and basically fired that onc! Tom has undergone both radiation and chemo and the new tumor has been ‘killed’ however it is still blocking the bile duct (or the tumor and radiation has destroyed the bile duct) and they are unable to get an internal stent placed, so he has an external bile drain (tube into the liver and the bile drains out into a bad) which keeps his color more normal.
His prognosis is still the same, he is terminal and will have to have the drain the remainder of his life….
However, my case in point is that NO ONE knows when the end will come as we do not have expiration dates stamped on our butts! We are now nearing the 14th month of life (and he said 6 months, HA) and are hoping for a lot more time together, but look at each day as a blessing.
Hopefully your ‘scary’ doctor has had experience with CC. Tom is on the Gemzar/Cisplation IV chemo and prior to that he did the oral Xleoda.
God with God and KEEP KICKIN’ THAT cancer.
Margaret
Hans, my thoughts and prayers are with you…as I read the posts from Kris and now from you, I only hope that I am as strong as you are when my husbands fight with this cancer takes him from me. We will be celebrating our 10th wedding anniversary in Feb 2011 and I’ve very happy that we did have the time together that we did, just like for you and Kris.
Go with God,
MargaretHi Chris:
Let me join in with the others, welcoming you to the best little CC site on the internet, that no one really wants to join!!!
My husband Tom was diagnosed in March 2008, underwent a successful resection in June 2008 and the cancer returned in Nov. 2009. This time the new tumor is inoperable because of it’s placement (It involves the Hepatic Artery and surgery would be to risky. And since the new tumor is blocking the bile duct, he has an external drain. 13 months ago, his then oncologist gave him 6 months.
As we prepare to enter the 14th month of life, it just goes to show that no one has an expiration date stamped on their butt! Stay strong and when the doctors tell you ‘they can’t’ ask what they can do! After Tom’s onc told him 6 months, we sought 2nd, 3rd and 4th opinoins. We went to Marshfield Clinic and Mayo Clinic. Although all opinoins agreed with the ‘inoperable’ portion, they did not agree with the ‘no chemo/no radiation’ and he underwent 28 rounds of radiation and then started oral chemo, Xleoda. When his tumor markers started climbing in Oct ’10, they started him on IV chemo. He is still here and we are preparing to celebrate our 10th wedding anniversary in Feb!
This is a wonderful site to learn from. Write down your questions as you think of them else you will forget them when you see your doctors!
Go with God and KEEP KICKIN’ THAT cancer!
Margaret
Dear Lots:
When I was unable to go to the visits with my hubby to his oncologist and Radiation doctor, we went to Radio Shack and bouight a digital recorder (about $40) and I was able to listen to everything that was said during those visits. It allowed me to hear first hand what was said and I was able to then write down any questions I had for his next visit.
Best $40 we even invested!
Go with God and KEEP KICKIN’ THAT cancer!
Margaret
Myfathersdaughter:
Where in Wisconsin are you? Tom, my husband who also has CC and I live in Green Bay Wisconsin.
Margaret
Lainy, my brother Bob is from Wisconsin (St. Germain), he was visiting my sister Mary who is in Apacha Junction (she & her husband go there every winter). Right now his car is in the shop with engine issues and he can’t leave until his car is fixed. So that is putting a wrench in the trip back…..
Margaret
All: We met with Tom’s Onc today and his numbers look great, although the tumor markers had been down to 88, but they are now holding at 106. She ‘wanted’ him to have a treatment (IV Chemo) but he declined, stating that he was feeling good and just did not feel like being knocked down again…she was OK with that.
So the plan now is to have a scan done in three weeks then make a decision to continue chemo or to just wait and see some more to see what this dratted cancer is going to do. He is gaining some weight back, he’s back up to 115 lbs. Yipee!
And a side note, I went to the orthopod and he stated “I don’t believe that the bone is broken. I think we can just take that cast off. You don’t have any bone fragments that are going to go floating around…..you can just wear this brace instead…” So he cut the cast off, and now I’m sporting a brace on the right hand. It still hurts terribly, but I can go back to work on Monday. That is a good thing cause else I would not have any FMLA hours left for Tom! And it appears that my brother Jim will be coming to stay with us for a few days until my younger brother Bob can get here from Arizona to help care for him. My plate will be overflowing, but then again, that is what family does for one another, right?
Go with God and KEEP KICKIN’ THAT cancer.
Margaret
Harmony – your blog is awesome! You, in spite of having this terrible cancer, have a zest for life that just amazes me ! thank you for the insight into your world.
Keep KICKIN’ it !
MargaretEXCITED FOR YOU! I was excited cause my hubby Tom’s tumor markers were down to 106. If they ever tell us that they are 30.5 I would have to do a Happy Dance!
YOU KEEP KICKIN’ THAT cancer!
Margaret
Rick:
If you have ascites that DOES NOT NECESSIARLY MEAN THE END IS NEAR! My husband Tom has had two bouts with it. The first time they drained it off w/parentheses (a small incision in the lower belly then a tube sucks the fluid out) The second time they put him on a high dosage water pill which did the trick.
Ascites is caused by a protein inbalance in your body which causes your artieries to leak fluid into your abdomen (your bodies way to try to compensate for the lack of protein.)
The best thing you can do is to increase the protein in your diet. Eat high protein foods such as eggs, cheese and even Boost Plus. This has helped tom greatly. You can search the internet for ascites and you should be able to find a ton of information.
Go with God and KEEP KICKIN’ THAT cancer.
Margaret
CM:
When Tom had back pain, it turned out to be a Kidney stone. I would mention it to his doctor.
Margaret
Good new today! Tom’s oncologist called to let us know that his tumor markers were down to 106. (They had been 195)…..so I’m thinking that they will be stopping Chemo for now. We see his onc on Friday so we’ll just have to wait & see what her game plan is going to be.
HUGS to everyone!
Margaret & Tom
All:
Just an update! My brother Jim is out of ICU and in intermediate care. He had to have another procedure to medicate the brain because of all the Neuro-spasms he was having, but the worst of the danger is over. He is still pretty sleepy and falls asleep at the drop of a hat, but that is OK cause they want him pretty quiet.
Tom went in and had blood work done on Friday. His bili is back down to 7 which is amazing. His alk phosphate and tumor markers are down from where they were 4 weeks ago as well. His oncologist has put chemo on hold for now, and he hasn’t had any now for over three weeks (this is good? I think?) He will have more blood work this coming friday and then more decisions will be made.
I’m coping quite well with my right arm in a cast, still off work as a full day of typing I will not be able to do! Not certain if they will allow me to have short term disability but I hope so cause otherwise I will have no PTO time left for Tom by the time I get my arm out of this cast, and frankly that would not be good. I do have FMLA for myself (just waiting for the paperwork to arrive) and if necessary I will go back to work….my boss has already said that she will come up with some things for me to do that don’t involve as much typing as my normal job. Typing one handed (trying to use the right) just does not cut it and the right arm/hand get VERY tired quickly.
Will post more as I know more!
HUGS!
Go with God and KEEP KICKIN” THAT cancer!Margaret
lmcnish
When my husband Tom starts w/an infection….he rarely has a fever, so in his case we watch for him being unusally tired and worn out. Chills is another sign we watch for. He was on long term medication, Levaquin (YES it is very expensive, Cipro not so much) but after his latest bout with an infection in the liver, they have decided that the long term antibotics are not working for him, so now we are having his external drain tube changed out every 4 weeks, in the hope that it will cut down the rate of infections.Anyone with any kind of an indwelling tube runs the risk of getting an infection and it’s generally from the tube. Each time they have tested Tom’s blood, urine, sputum which all are fine, then I have to suggest that they test the contents of his bile drain bag….and sure enough that is where the infection is! (I could be a doctor!) Common sense should prevail and they should know that 9 out of 10 times it is going to be the bile!
A person can be on long term antibotics for any length of time, however, you then run the risk of the ‘germs’ becoming super germs (super bugs) that are resistant to antibotics. After Tom’s last infection they had him on a three week regime with three different HIGH / SUPER strength IV antibotics and the infectious disease team told him that the levaquin was doing nothing for him and recommended that he stop taking it.
Not sure what the answer is for sure, each person is different and each person’s doctors have different ideas. Hope this has helped somewhat!
Go with God and KEEP KICKIN’ THAT cancer!
Margaret
