Topic: Recovery from liver resection and time to next chemos?

Hello Everybody,
   We need some advice. For those of you who had liver resections - Butch seems extraordinarily weak (1 week yesterday), and is not eating ANYTHING almost - they are feeding him the most awful food here, and he can't get it down -  did get him some boost, though. How  long to recovery? what about eating? The Dr. said we could leave the hospital tomorrow tomorrow and go to Family House, possibly go home to NY (6 hour drive)  next week and maybe begin the next round of chemo - coming back in 2 weeks after that for appointment. I can't imagine that he could begin chemo in this weakened state - it would kill him. How long did people wait before resuming chemo (Gemnzar and Xeloda)? Jeff - I have read a couple of times where you say sometimes you have to hold off the Doctors - is this one of those times??  Any advice will be appreciated.

Thanks so much - Joyce

Re: Recovery from liver resection and time to next chemos?

Chucks was way too sick to do chemo after resection.  The Doctor told us that there is a three week window after surgery to start the chemo.  If this passes, they might not do chemo.  If you think it will be helpful, I would go ahead and give him another week and start chemo on the third week.  It is not proven if the chemo is beneficial but definitely worth the try.  Hope Butch feels better soon.

Christina

Re: Recovery from liver resection and time to next chemos?

Joyce --

I have no sage advice. But please know so many of us out here are sending every good thought to you and to Butch.

Irene

Re: Recovery from liver resection and time to next chemos?

Joyce,
Post resection, my husband stayed in the Hospital for 3 more weeks.  During this time we concentrated on his breathing deep

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

5 (edited by tiapatty Fri, 25 Jul 2008 08:47:22)

Re: Recovery from liver resection and time to next chemos?

Joyce,

Well, I am sounding like a broken record because I have posted about this elsewhere on the board, but I think your husband's situation sounds like my Mom's and I think you should consider treatment besides chemo/radiation that does not have such extreme side effects.

This cancer comes on very quickly and my Mom was near collapse right before her surgery and she also has a heart condition and has a pacemaker/ defibrillator. After her resection, she was even weaker. She came home but had to go back in the hospital a week later because she had a biloma (an abcess that was filling with bile) and another tube had to be inserted (eventually she ended up with 3 tubes) and then she went to a rehab facility because she needed daily physical therapy. When we were finally able to get her home and to an oncologist, she took one look at my Mom and said there was nothing she could do for her in her condition.

She eventually did get chemo/radiation but it was 3 months after her resection and I think it made things worse and I really wish I had known about photodynamic therapy (PDT) because side effects seem  minimal in comparison and I think my Mom could have tolerated it better. There is an article in the Medical Updates section that says it is common treatment in Europe and may double survival rates, here is the outside link:

http://www.eurekalert.org/pub_releases/ … 041508.php

The article talks about people who are not candidates for resection but I don't see why someone who has had a resection couldn't receive this treatment, unless there is something I am missing. Cancer Treatment Center of America and Mayo Clinic supposedly offer PDT, not sure about others.

Joyce, I see a lot on here about nutrition and I think it is the most important thing, my Mom's friend was battling another type of cancer and her doctor told her she needed 95 grams of protein per day and I firmly believe that if you don't do something that radical, the muscle will never come back and without that strength, the odds are long.

Unfortunately, my Mom won't eat anything healthy and when I asked her doctors about dietary restrictions they said there were none, just to stay away from alcohol, which was kind of obvious. I practically begged them to give her some dietary "requirements" instead and they looked at me like I was crazy. By the way, I think what they serve people in the hospital in this country is just nuts. I heard the woman in the bed next to my Mom order 2 Cokes, some schools have stopped selling soda but you can get it in the hospital? That makes no sense. Then they are telling cancer patients to eat more frequent but smaller meals but they don't feed them that way in the hospital, they bring enormous meals that would choke a horse. Sorry, just venting.

I am also sorry we didn't go to an integrative cancer center that offers different types of supportive counseling (nutritional, etc.), maybe if someone else were giving her a hard time about her diet, she would try harder. Here is an example:

http://www.rush.edu/rumc/page-1160429723857.html

Patty

Re: Recovery from liver resection and time to next chemos?

Hi Patti,

The articles were very helpful and like we have said all along... new stuff is popping up all of the time.  It doesn't look like the PDT is FDA approved yet.  It looks like they are in the process. So that is definitely something we should follow very closely.  Thanks for the research.  Joyce, Patti is right.  Large amounts of protein is very good to have in the body.  I just recently went to a health food store and got a powder protein that has 59 grams of protein and is used to build muscle mass.  Chucks seems to be doing pretty well with this.  Our oncologist said high amounts of protein in the body reduce the risk of blood clots and seems like ppl with this type of cancer are usually very low on protein. 


Christina

Re: Recovery from liver resection and time to next chemos?

Thanks to all of you for the good advice - I do know that nutrition is the key here. And hospitals are the WORST place to be for nutrition - I should have brought the protein powder - will have to buy more. Have been taking in things like V8 Fusion, and extra food - protein bars, etc.  I will look into the PDT treatments, and am going to be talking to the Doctor tomorrow about the chemo plans. As of this afternoon, I think Butch has another infection, though - so - that will slow everything down. He did walk the halls with me today, though - and sit in the chair for all meals, so we are making progress.  Thank God I have you all to glean experience from.

Joyce

Re: Recovery from liver resection and time to next chemos?

Chrissy,

Even though it is not FDA approved, I think you can get PDT here, though insurance might not cover it. I called Cancer Treatment Center and they said they do it in Tulsa and someone else said they do it at Mayo Clinic.

Patty

Re: Recovery from liver resection and time to next chemos?

Joyce.... You need to go with your gut feeling.  One week out of not eating a proper diet I would consider half way normal.  He needs to drink and eat a little bit more as he can and more importantly he needs to be walking and kick those muscles back in gear.  He needs to be exercising those lungs as it is known for patients not to want to eat because of residual anasthesia(SP).  They shoud have given him one of those blowing toys I called it.  If he has not be doing so, could explain sluggish and lack of appetite.  During the week at the Family house you should se things pick up a bit better due to all the stimulation.  He is most likely having depressional emotions right now as well. I know I remember the exacts words I said to my wife . That I felt like my body had been violated and I did not know if I pull my self back up out of this hole.  I know as soon as I got out of the hospital my attitude changed.  I then had to be readmitted back hope because of abig bag of staff infectional fluids had to be drained under ct guidance followed with isolated room for seven days. Lots of loving reminders and and setting some daily goals.  As far as chemo 4-6 weeks is my opinion at least let the liver heal and completely regenerate it's capacity to function as a whole liver again.  Follow the discharge instructions as far as what to watch out for or if Butch has just a hint that something is not right go to ER and get scanned or xrayed, If I had not followed my gut instinct when I got back home I would have been a goner for sure.  Actually a Hospital can be very depressing and like total Isolation feeling.  Like Marion posted , breathing deep exercises, walking, eating a little more slowly. Make sure he is peeing, they should have been monitoring that. If not he might need to be relieved again by use of cath tube. His blood work must be okay if they fell he is ready for discharge. Joyce I lost 45 lbs in two weeks or less. It took me 6 months or more to gain my weight back.  Things should get better one day at a time. It'll seem like forever but when you look back it'll seem like time flew.  One last thing is a little bit of light massage. Just gently massage his upper chest with only your first two fingers in a circular motion.  Ask him first as it might frustrate him. But I loved being pampered.  I feel all hospitals should do that for patients free of charge.
Bless Ya Guys!
Jeff G.

Take it to the Limit,One More Time! (Eagles)

Re: Recovery from liver resection and time to next chemos?

All excellant suggestions - In addition, I am playing cd's with a portable player with earphones - his favorite - Johnny Cash! We are still at the hospital because of a nasty infection - Dr. Gamlin says 2 more days (he is an optimist, I have found!), and he has an irregular heart beat, which they said will go away, and one weak kidney - Jeff is right - we need the numbers to be good before we leave, BUT - the longer we stay, the more work to do when we get out. We do have one of those funny little breathing things - he plugs away at it, and - we are walking the halls. Right now, he is a wee bit confused - they say it is from the infection, but - all in all, he is still a trooper.

God's Strenth,

Joyce

Re: Recovery from liver resection and time to next chemos?

Hi Joyce I haven't been here for several months but right away saw your question about liver resection...My husband had a resection Jan 2007; he was weak and didn't have much appetite for several weeks.  Was in the hospital 10 days.  After he came home, I and friends who came over would have to remind him to eat or drink.  One nurse who helped a lot with the info she gave said that people with this drastic surgery plus all the anesthesia after effects, for awhile their hunger and thirst seem to be disabled.   So we have to keep offering little bits of whatever they will eat or drink, and water on a schedule.   My DH couldn't drive for a couple of months and even then it was just around the block, then a few blocks.  We would go out for walks and each day go just a little bit further.  The drs didn't advise chemo as the follow up tests didn't show anything but a lung spot that had been there a long time and didn't seem to be growing.  He did have radiofrequency ablation to that spot six months later, and then rfa again this past March.  Your post got me thinking back to those rough post-surgery weeks, and how I worried about what he was eating.  He would go through phases of not having much appetite for a year and even now occasionally he doesn't feel like eating anything for dinner except some soup.  I hope your husband continues to gain strength...From our experience the lack of appetite is normal and as long as he will take some of what you offer in the nourishing food and drink, and you just keep at it, he will eventually regain appetite.  My DH said that for months everything "tasted like the hospital" or just had no flavor, except for certain ice creams that he liked.

12 (edited by tiapatty Sun, 27 Jul 2008 13:32:29)

Re: Recovery from liver resection and time to next chemos?

We are doing music therapy with my Mom, she doesn't know a lot about opera but the music has always moved her so we are playing a lot of that for her.

I just posted somewhere else on the board about the confusion and another post recommends treatment for it, see:

http://www.cholangiocarcinoma.org/punbb … php?id=806
(look at the last posting from Sudhir)

http://www.cholangiocarcinoma.org/punbb … hp?id=1661

For nutrition, I found some more books:

The Dysphagia Cookbook: Great Tasting and Nutritious Recipes for People With Swallowing Difficulties, by Elayne Achilles

Blender: perfect sauces, soups, pur