mlepp0416
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Moonchaser: Buy some Boost, they do have it for diabetics. That should give him the nutrition he needs without him having to worry about the sugar. My husband Tom is a diabetic and at this point in his life, I worry more about the weight loss than I do about his blood sugars getting too high. I get the Boost Plus for him so that even when he can’t eat solid food, he is still getting some much needed calories.
Is your uncle Diabetic? If not he should not be worrying about his sugar intake, Sugar gives you energy. If he is not drinking soda and eating other sugary foods then an occasional sugar like what is in Boost Plus should not harm him at all. But, you have to remember that sometimes people are ‘stuck’ in their ways and there may be nothing you can do to change that.
You may want to get him into talk to a nutritional counselor and she/he may be able to give him some better ideas on what to eat and how to eat a better balanced diet.
Go with God and KEEP KICKIN’ THAT cancer.
Margaret
Heather:
So sorry to hear about your mom, but you can use this site to heal from your loss, by offering insight to others, what was tried with your mom and what was successful and what failed. I am going through this cancer with my husband, and often use this site to try and help others, thereby also helping myself to deal with my husbands issues.
We will also allow you to rant and rave when you need to. I’d done this myself and others have always been there to help me through the really tough times.
Welcome and remember you have family here for when you need us.
Margaret
Mark:
I will second the others, sorry you had to find us, but certainly glad you did! Welcome to the best little family all fighting CC and rooting for you. Your story is somewhat similiar to my husband Tom’s. Although he was able to have his original tumor resected (taking out the entire left lobe and part of the right lobe of the liver). But in Nov 09 he presented with Jaundice and was found to have a 2.5 cm tumor in the remaining rt. biliary tree, inoperable because it involves the main hepatic artery.
We will all be rooting for you to beat this cancer! My husband Tom and I are trying to KICK this cancer as well. As you probably are already aware, this cancer presents many twists and turns and bumps in the road.
Have your doctors suggested or tried radiation? With Tom since the new tumor is inoperable, he underwent 28 rounds of radiation to shrink the tumor and has now had 2 weeks of chemo (Xleoda, pill form) and now has 1 week off, then he starts on the 2 weeks on again.
Go with God, prayers from Wisconsin are coming your way!
KEEP KICKIN’ THAT cancer.
MargaretKathyb:
My husband Tom has a 2.5cm tumor in the confluence of the right biliary tree that is inoperable. Radiation did appear to shrink his tumor.
He had a PICC line after his initial surgery. It was in his upper right arm through which I adminstered his antibotics three times a day. He’d rather have a PICC line then an external drain bag for the bile! At least the PICC line can be wrapped with a bandage and then it’s no bother! But the drain bag, Ughhh! It’s a pain to say the least.
Ron, one can only question the ‘quality of life’ when one is going through this cancer and the treatment that is offered. I too tell my husband that he and I are together, but when I look into his eyes there are days when all I see is dispair. We want to be able to kick this thing back into the nether regions, but one’s body and spirit can only take so much and no matter what our loved ones decide, we have to be strong and support their decisions. As caretakers we too can only do so much. Being by their side and supporting them in whatever decison they make is the best thing we can do.
Go with God. Prayers are coming your way.
KEEP KICKIN’ THAT cancer.
Margaret and Tom (my husband and Cholangiocarcinoma)
Phil:
Welcome to the best CC site I have found on the internet for CC survivors and their caretakers.
My husband Tom also has an issue with weight loss. He too did not care for ensure, but has switched to Boost Plus (chocolate) which he tolerates much better and he likes the taste. You may want to try that. Someone else suggested BRATTY (Bananas, Rice, Applesauce, Tea, Toast and Yogurt).
Tom lost about 40 pounds after is initial resection surgery and after his second tumor reoccurance (inoperable) has lost another 30 pounds. We are fighting to get him to gain weight right now, so no matter what it is that he wants to eat we are not worrying about it. I too have been adding eggs, whole milk, cheese to anything that I can when I cook. Anything to add those extra calories!
Hope this helps!
Prayers coming your husband’s way from Wisconsin.
Go with God and KEEP KICKIN’ THAT cancer.
MargaretTammy:
Welcome to the best CC site on the internet. I, along with others on this site will try to give you guidance and posts information from our own personal experiences.
My husband Tom has been battling this cancer for the past two years, and if there is one thing that I have learned, this cancer journey has many twists and turns and bumps in the road. Tom has lost a lot of weight after his new tumor presented in Nov 09 and has dropped a lot of weight. His issue is that much of the bile that the liver produces is not getting into his intestional tract, therefore although he is eating his body is not getting any nutrition from the food that he eats. (they are unable to place an internal stent to get the bile to flow where it should be flowing, 5 unsuccessful attempts so far).
Tom is a diabetic and Boost Plus is so far the best thing that we have found to give him the additional calories that he needs when he is unable to tolerate solid foods. There is also a Boost for diabetics, but we have not gotten that one yet. Tom had tried Ensure, but did not care for the taste and would not drink it. He does like the Chocolate Boost Plus and he does drink that. (Boost Plus is for those people that need to gain weight)
Your Uncle may never experience ‘throwing up’ from the Chemo. Tom has had 28 radiation treatments and started on Xleoda two weeks ago. So far he has not had any experience with actual vomiting. A little nausea, but his doc gave him an anti nausea pill that he takes 1/2 hour before taking the chemo pills. So far he has not had any side effects from the chemo other than slight nausea and soft stools and going to the bathroom multiple times a day. (if it gets no worse that that we will be thankful)
Here are my suggestions:
1) Write down any questions you / others think of and ask those questions of his doctors.
2) Get 2nd opinoins as to if the treatments are the correct treatments that your uncle is getting
3) Never take no for an answer.
4) Keep in mind that many doctors have never encountered Cholangiocarcinoma and simply do not have any ideas on what is the correct way to treat it.
5) Do your homework. Search the internet for possible treatments. Read the posts on this website and you will be amazed at the information you will find. And these posts are from real life experiences that people with this cancer have gone through, not just the ‘Textbook’ versions.I will be watching for other posts from you. Come back and visit often. Remember that no question is ever a dumb question.
Prayers are coming your uncle’s way from Wisconsin.
Go with God and KEEP KICKIN’ THAT cancer
Margaret (“My Husband and Cholangiocarcinoma” is the information about my husband Tom’s journey with CC)
Oldest Daughter:
Welcome to the best site for CC that I have found on the internet. I’m certain that like many on this site, you did not wish to join (myself included). Prior to march ’08 I knew nothing about Cholangiocarcinoma. Now however, I know more than I want to know and learning more each day.
Given your mom’s age and the fact that she has been fighting this cancer for 7 years, you have to trust that she has made the best decision for her and you have to support her decision.
Making your mom comfortable should be something that Hospice can do. Does she have a morphine pump? Does she have another type of pain medication? If not, contact her doctor’s and insist on getting something to ease her pain. My son-in-laws grandmother recently passed and Hospice had a morphine pump for her which made her final days easier for her.
If the nausea medications are not working for her, contact her doctor’s as they may need to change the medication that they have her on.
I would also suggest that soft music playing in the background or having family members being in the room with her, talking softly may also give your mom peace of mind that people that love her are nearby. We as caregivers do not want to see our loved ones suffering, that is the hardest part in dealing with this cancer. I know that when/if the time comes for my husband Tom I will have a very hard time dealing with his end.
What does one say at a time like this? Keep in mind that your mom has made the decision that she feels is right for her and you have to support her. Just be there for her, even if it’s only to hold her hand and tell her that you love her.
Go with God, prayers are coming your mom’s way from Wisconsin.
Margaret
ARGHHH! Depressed!
The doc’s were unable to place the Stent in Tom’s liver. The Doc saw two pinholes, but they did not lead anyplace. He said sometimes the tumor can ‘destroy’ the bile duct. However, some bile is getting into his system. Hummm, Tom is a rare guy, he grew a new lateral artery to feed a blood supply to the left side of his heart after his heart attack, so maybe the liver has now grown a new bile duct??? (who knows)
Doc talked about ‘capping’ the drain and seeing what happens but he is worried about compromising Tom’s …health, so he’s not doing that. He said that sometimes when they are unsuccessful here in Green Bay, they will refer the patient to Madison. We have asked for him to refer Tom to Madison. (we’ll see what happens) So for now and for however long he needs it, Tom will still have the external drain.
Tom handled it pretty well but we were both pretty prepared that it would not be successful. The most important thing is that the drain bag and tube are serving a purpose and that is working. As I said to Tom “It’s an inconvenience, but it’s serving a purpose and working so for now, you still have your girlfriend with you where ever you go and we’ll take the next steps whatever that may be”.
Go with God, and we will KEEP KICKIN’ THAT cancer.
Margaret and Tom
Hi Gail:
When Tom had his liver resection, he developed a bile leak from the cut side of the liver. We knew that was a risk going into surgery. But go figure that Tom would have a bile leak! I figure it’s because he’s a rare type guy. He gets a rare form of cancer, gets the bile leak that is generally rare per his doctors, and the average time for a bile leak to heal (per my research on the internet was about 63 days) and he’s so rare that his took over twice that amount of time! He also got three different kinds of infections while he was inpatient. Oh, did I mention that the average time inpatient for that type of surgery was about 5 days, well, he’s so rare that he was there for 21 days! (and I pushed his doc’s and told them we were leaving AMA so they better get home health set up) They got everything set up in record time and we left two days later!
Tom’s VA doctors also said that because he had clean margins there was no need for chemo. All his new civilian doc’s are now telling us that IF he’d had chemo back in 2008 he may not be fighting the fight that he is now going through. And because of his high bilirubin levels with his ‘new’ tumor (inoperable) he has another external drain bag to help lower those levels. He hates the bag, but it’s serving a purpose right now. He’s headed back into surgery tomorrow morning and they will once again try to place an internal stent so the bile flows where it is supposed to go. (They have tried 4 times previously and for various reasons it was not successful). The tumor has now shrunk and some bile is getting through and the interventional radiologist can see the contrast go past the tumor so he feels that he will be able to place the stent tomorrow. Gawd I hope so! All Tom wants to do is to be able to lay on his right side again and can’t do that with the external drain.
We all have something to look forward too! Warm weather is just around the corner for those of us who live in states where winter seems to dump a lot of snow and cold on us. Tom too is looking forward to being able to just sit outside and soak up some sun! He’s been cooped up in the house pretty much since Thanksgiving when he presented with this new inoperable tumor.
You can read Tom’s story under my login name mlepp0416 (My husband and Cholangiocarcinoma)
Go with God and KEEP KICKIN’ THAT cancer.
Margaret
Hi Kathy:
Welcome to the best CC site on the internet. So sorry that you now know what the word Cholangiocarcinoma means. Before May 2008 I had no idea, but now I even know how to spell it and what it means. My husband Tom has been fighting his battle with CC since that time. He was able to have a liver resection in June 2008 with clean margins. We had a great spring summer and fall of 2008 but in Nov 09 he started turning yellow. His original oncologist told him to go home and make his preparations.We did not accept that and got 2nd and 3rd opinoins. His new tumor is unoperable. But with his bilirubin levels rising fast the docs were able to get an extenal drain placed and he started radiation and had 28 treatments and was finaly able to start Chemo two weeks ago. His bili is now down to 3.9 (down from 24.7) and his tumor markers are now below 100. He will be having surgery tomorrow to try to get the internal stent placed (this will be try number 5) and we’re hoping they are successful.
One thing that I have learned througout Tom’s journey is to ask a lot of questions. When someone says ‘no’ ask why! Write down your questions, cause else you will forget them. Seek more than one opinoin. Remember that there are many oncologists and doctors who have NEVER encountered cholangiocarcinoma and they don’t know anything about it. (like Tom’s first oncologist) He gave Tom 6 months and in 10 months when Tom is still here fighting, I’m going to make that oncologist eat those words!
Go with God and KEEP KICKIN’ THAT cancer.
Prayers are coming your way from Wisconsin.Margaret (my husband and cholangiocarcinoma)
Swissgirl:
Welcome to the best site for CC survivors and their caretakers that I have found on the internet. I’m sure that you, like me, did not want to join or ever hear the word cholangiocarcinoma.I agree with what Pam said, as in today’s world, without those forms and because of HIPAA, you may not be given a lot of information.
Everyone on this site is wonderful and always more than willing to share their experiences and their advice. Reading posts can often be a boost that can lift your spirits when you are having a bad day. Also there is so much information on this site that it’s unbelieveable! And rather than like reading a textbook, everything comes from real live experiences.
Prayers are coming your dad’s way from Wisconsin.
Please tell him to Go with God and KEEP KICKIN’ THAT cancer.
Margaret
Jim and Darla: There is nothing wrong with obsessive sentimentality disorder. I will most likely have it some day also! I think I even have a small touch of it already. I think the slide show of pictures set to music is an awesome idea!
On a side note, Tom went to his doctor visit today and his bilirubin level is down to 3.9 and his tumor markers which were well over 300 seven weeks ago are now less than 100. His doctors comment was “Wow, this is the best your color has ever been!”
So we’re all prepared for his surgery (internal stent placement) tomorrow and Tom is going to tell Dr. Dempsey that the people with him are his “Lynch Mob” and he (the doctor) won’t make it out alive if he doesn’t get that stent placed. At least he still has his great sense of humor!!
If the doc is successful, I’m telling him that I want the drain tube and drain bag cause we are having a tube burning party at the campground this spring and we’re throwing that thing into the FIRE!!! Party on!! (That’s what we did with the last drain tube) We have to follow tradition!
Go with God and KEEP KICKIN’ THAT cancer!!!
Margaret
Wow – that’s all I can say. Thank you everyone for your comments and well wishes and prayers for Tom. Teddy, thank you for lighting the candle for Tom.
I admit I was feeling the ‘pressure’ yesterday when I made my post, but have re-grouped and looking forward to Friday and a successful stent placement AND a day off of work (even though sitting at the hospital is no joy!) Then we have the weekend and Tom does not have to take any chemo all next week so that will give his body a chance to re-group as well.
I finished his VA Compensation claim and dropped it into the mail today, so we’ll see how we make out on that one. Not certain of the time frame before the VA makes any kind of determination and I am prepared for them to deny it. Hopefully because Tom is still alive and it’s not just his widow making the application, and we are not claiming that his CC came from Vietnam, but rather from the PCB’s that he was exposed to in the green army paint…well, lets just say that we’re hoping that the VA pulls their head out of their A*s, and makes a good decision! Tom tells me that if they deny it, he wants me to appeal it, and appeal it again. Which I will do because maybe, just maybe, it will help some other veteran down the road that presents with CC.
I plan to be a lifelong member on this site so that I can continue to give others comfort and help them through their trying times when they are helping a loved one fight CC. Even if all I can offer is moral support, I plan to be there for others, as others have been here for me.
Go with God and KEEP KICKIN’ THAT cancer!
Margaret
Gail:
Thoughts and prayers coming Bill’s way. You’ll be amazed at what you can do! Been there, done that all with my husband Tom. Do you have to track the drainage? I had to do that for 7 1/2 months with Tom after his surgery with his bile leak drain. Does Bill have a JP Drain?
Go with God and KEEP KICKIN’ THAT cancer.
Margaret
