kvolland
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WooHoo Matt, sounds great to me. Clean scans, normal Ca 19-9 those are all things we love to hear.
KrisV
Carla –
On the protein bit, one thing that can happen with any liver disease – and this is an liver disease – is that you can get portal hypertension. This is what happens when your liver becomes stiff, hard and difficult for the blood in the portal vein to get through it. This causes a back up blood in your vein which can leak out and cause ascites – edema in the abdomen. Keeping your protein elevated can help pull some of the fluid back in to your veins. No saying that you have or will have that problem but it’s good to stay ahead of it. Plus protein is the building block of our body so any healing or fighting that our body does needs protein including making red and white blood cells.
As you can tell one of my soap boxes is diet and nutrition. There are a lot of theories out there about diet….some are backed by scientific research but a lot is not. We all make our choices to eat regular, be vegan or anything in between but we still need to eat that variety for balance.Hugs,
KrisVMary –
I am glad that depression is not an issue. Anxiety has been my problem and a low dose of anti- depressant helped that too. I have seen Ritalin used for energy for cancer patients. It seems to work pretty well with not a lot of side effects and its pretty short acting so if you have some when you stop it they will go away. On a side note they diagnosed my ADHD as a kid and I took Ritalin for a long time for that….made me spacy mostly.
You may talk to the once about a reduced dose of chemo and maybe the side effects might not be too bad. I know they are reducing Mark’s since his side effects have been so bad.KrisV
Mendi –
Welcome to the sit. Sorry you had to find us but you will be glad you did. As has been said definitely go for the second opinion or third if needed. I would definitely head to MD Anderson, especially if you are close at all.
My husband felt pretty good right up until he turned yellow. He had some fatigue problems but we attributed that to getting older. A lot of people don’t notice anything until it’s quite far along which is why it’s so hard to diagnosis.
Good luck and keep us posted.KrisV
Welcome to the best little family that no one wants to be a part of. 37 is young but unfortunately you will find that there are many on here as young if not younger. I do encourage you to get a second or even third opinion if needed. Many on here have been told that surgery was not an option but then after chemo or seeing another oncologist or surgeon find that it can be. You want to make sure that whoever you are seeing has seen a lot of cases of cc.
As for diet you are right. If you followed some guidelines you would starve to death. I always just recommend to my patients that you eat a good balanced diet with a variety of foods. Protein is very important for many reasons while battling this and often it’s the one we don’t want to eat. Protein can come from meat, dairy and plant sources such as rice and beans or tofu. We do a lot of protein shakes to keep my husband’s up.
You may not have chemo brain so much as stress brain. I didn’t have chemo but I find I struggle sometimes with my memory and a lot of the symptoms you describe. The loss of motor skills could be contributed to fatigue. Even if it is related to the chemo you are young and should recover from it easily.
As for relaxing and getting away from this, it’s tough. We’ve been living this for a year and it’s tough. I suggest doing something for you that has nothing to do with your cancer. Get a massage. Have a spa day. Take a day trip with some friends. Make a rule to not talk or acknowledge the cancer for a day that way your life doesn’t revolve around it. Family gatherings can be tough since everyone wants an update. Are try to do it once then limit talk about it after that. Nights are tough. Using meditation or guided imagery can help push itnoutnof your brain so you can sleep.
Hope this helps.KrisV
Chrisna-
You will find that I am more than willing to share anything that might help someone else with this disease.
Mark was officially diagnosed with his surgery June 4th 2013 but we first heard the words Klatskin’s tumor the middle of May along with cholangiocarcinoma. Even though I am a nurse I had never heard the word before. Didn’t even know what it was.
His first rounds of chemo started in August after healed from surgery. He did 6 months of gemcitabine and oxaliplatin. He didn’t have a lot of side effects from those. Mostly just tired toward the end. He did develop an allergy to it at the end but it was the last dose anyway. The cold sensitivity was pretty tough as he had to drink warm water and all that stuff. He had a little neuropathy but that resolved.
Now we are doing 25 doses of radiation along with 5 weeks of 5FU along with Interferon and a single dose of mitomycin. The 5FU has been rough. In fact we just held everything for a week to give him a chance to recover. He lost some weight, was dehydrated, developed sores in his mouth and couldn’t walk but those resolved once they stopped it. We have two more weeks to go at a lower dose so we will see.
Nausea has off and on been a problem but the meds for it are so much better than they used to be that we have been able to control it with meds for the most part. The fatigue can be more difficult but as long as he sleeps at night I don’t care if he naps a lot during then day. He has lost some weight due to decreased appetite but I keep giving him different high protein stuff like protein shakes and Ensure so it’s not as bad as it could be.
Hope this helps and feel free to email too.KrisV
Mary –
There is no completely right answer to this. It really is your personal decision but that being said you need to maybe ask yourself what is more important – quality of life or quantity of life. That is probably more important than anything right now.
If the chemo is making you so miserable that you cannot enjoy life then it may be time to evaluate continuing. Or maybe seeing if there is another approach that might give you better quality of life with less symptoms and not so much fatigue.
The other things I might consider is if you are taking an anti-depressant. If not it might be something to consider. Being depressed when dealing with something like this is very common (my husband is but won’t let anyone do anything for it). There are several antidepressants out there that work great and help boost energy levels some. Some even help boos the appetite too. It may be something to think about.Hugs,
KrisVChrisna –
As has been said welcome to the family that no one really wants to belong to. I know I didn’t but it was been the best thing I did through all of this.
My husband was not even 50 when diagnosed with his Klatskin’s tumor. It was needless to say a shock and was his second go around with cancer….he had Hodgkin’s lymphoma as a kid. We opted for the surgery since it gave us the best chance of long term survival and he had no chemo before hand.
He was told he had an 8% chance of dying on the table from cardiac complications and an “elevated risk” of dying from the cancer surgery or post-op recovery but we knew he had a close to a 100% chance of dying from the cancer if we did not do the surgery. My husband’s theory was he would rather take the lesser risk.
Yes, it was a long surgery – 14 hours – and a difficult recovery -12 days in the hospital – but he can through it well with negative margins and one positive lymph node. We have done 6 months of adjuvant chemo and now 25 doses of chemoradiation.
Every one is different on what they want and how they tolerate the surgery so it’s a very personal decision.
Does you friend have any other major health complications like heart disease, diabetes or lung disease? That could play into the concerns about surgery too.
I would definitely look at second and third or ever fourth opinions, the more information you get the better off you will be.
Hang in there and keep us posted. And remember we are here so you can ask questions and pick out brains too.KrisV
Nancy –
Sorry that you were not able to keep him at home but now you will be able to be his wife again rather than his caregiver. Being the caregiver takes a lot out of you and you sometimes don’t have enough energy to be a spouse again. Now you can be there, hold his hand and provide the emotional support that is needed. You can also take care of yourself which slips when you are a full time caretaker. Enjoy the time together.KrisV
I really don’t see any reason why not as long as everyone communicates and the insurance does not have a problem with it. I know people who have done kidney dialysis while traveling and the way people are so mobile any more I would think it shouldn’t be an issue.
KrisV
Matt –
One of the things my husband noticed after his surgery was that everything seemed different. He spent most of his time constipated even after he stopped taking the pain pills. One thing that was pointed out to us by the Radiation Onc was that because the left half of his liver was gone, his insides meaning his stomach and even parts of his small and large intestines had shifted more to the middle instead of off to the side. He says that now he feels things in different places that he ever did before and nothing feels “right.” He is ten months out now.
The other thing I always tell my patients, is remember they just cut you open and “played” with your guts, it takes time for all that to heal, something even longer than the 10 weeks you are post-op. There is a lot of swelling and that does take time to go away.
Hang in there and realize that your insides will never be the same as they were before surgery. I still encourage you to get everything checked out for your peace of mind but as you get further out you will get more used to the new normal.
As for the scan anxiety, I don’t know what to tell you. I get it every time we start even talking about one and it’s not me that has to do it. Sometimes I even get a little anxious about the labs.
Hang in there.KrisV
Talked to the Onc today and because his mouth is so sore and tore up they are going to stop it all for a week – radiation and chemo. It’s kind of sad because it just means we are going to have to go a week longer but maybe his mouth will heal. Doc said that the feet we would just live with but when the mouth gets that bad they stop so he will be able to eat and drink. Kind of a relief.
The only bummer is trying to figure out how to deal with my work – they have stopped being nice recently and I am frustrated with all of it. I have finally used up all my FMLA and not eligible for anything else. I could go back to work for a few days but they don’t want me to since I am off…..it’s all so complicated. As if I need one more thing to worry about.
But on a positive note, he is feeling better.
KrisV
