Topic: new to cc and this site

i have recently learned of this site and have been reading different posts and i have learned so much.my husband was diagnosed in july,2008.initially we were told pancreatic to liver mets then that wasn't correct then a 2nd liver biopsy in a larger medical center confirmed the cc.my husband was not a candidate for a resection because the cardiac workup pre-op identified 2 blockages and he was too high risk for surgery.he had a hepatic arterial infusion pump (hai) inserted and has received fudr via that as well as iv cisplatin and iv gemzar.the cisplatin however caused him to go into renal failure and this will not be used any longer.his kidney functioning is now back to normal.i was wondering if anyone could tell me how often they have afp levels monitored.also,i questioned the physician when another ct of the abdomen would be done to see if the mass is shrinking.his last one was done in july,2008.he's tolerating the iv gemzar o.k.but the constipation issue is just terrible.he takes oxycodone for pain.actually tylenol helps his pain but he can't take it because of potential damage to his liver.also,he seems to be burping,belching alot more than ever.has that happened to anyone else?i'm trying really hard w nutitional supplements to help him gain some weight.thank GOD is appetite is pretty good now.he's also been driving again and running errands.how he's feeling seems to change from day to day.he's very quiet and i try to get him to want to go out to dinner or a movie or something when he's feeling o.k.but he doesn't want to do anything.should i still encourage that?he did meet with someone from behavioral health who do not feel my husband was really depressed and did not need an anti-depressant.this is so hard and frustrating.i want to help and am trying very,very hard to help him.some days i just don't know what to do.the chemo also caused him to be anemic.can anyone suggest good high iron foods they've tried.i'm hoping if his count comes up he'll be less tired.thank-you.........

Re: new to cc and this site

Carolynle....hello and welcome.  You have many questions for which I am sure you are to receive many answers.  Since it is way past six months since your husband had a CT scan I would insist on being scheduled asap. Belching and burping and constipation all are common with this cancer.  Until others have a chance to answer you might want to go to the "Search Function" and use keywords such as: digestion, or constipation, etc.  We have had many discussion regarding this problems with tons of advise coming this way.  Our JeffG would recommend stool softener 1/2 hour prior to a meal and a laxative following the meal. You might want to try this. 
I am glad that you have found us and be assured for plenty of advise coming your way.
Sending my absolute best,
Marion

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

Re: new to cc and this site

Carolynle,

First of all welcome to this site.  I'm sorry you had to come and find us but you will find some of the most caring, loving and compassionate people here.

Let me give a stab at helping with some of your questions.

Here is a link to a very good site concerning lab tests and results: 

http://www.labtestsonline.org/

My Mom's AFP levels are done every time we travel to Duke for her appointments.  (Right now about every three weeks to a month).  My mom is currently taking an oral chemo drug called Xeloda.

Regarding appetite, we have had amazing results with the drug Megace.  She takes a liquid form (Just 20mg one time a day).  It stimulates the appetite and she has managed to maintain her weight beautifully.  (If they ever find a drug to make you not want to eat and lose weight that works as well as this one then someone will be rich!)

In regards to the burping and GERD issues, Mom's oncologist has recently prescribed PROTONIX, which seems to be working well.  She had been using the usual over the counter stuff but it was working less and less.

As to the constipation issue if you can encourage drinking more water that may help.  Stool softeners are also helpful.

There are also drugs that can help with the anemia.  I would try and have a frank discussion with your physicians.

Don't feel shut out when your husband seems to want to withdraw.  He's probably dealing with coming face to face with his mortality and having cancer can mean dealing with the loss of control in your life.  There are some very good articles on the American Cancer Society website as well as the Hospice and Palliative care sites.

Finally, (yes I know this is a lengthy post...lol)  the first rule of caregiving is:  (drum roll here).......YOU HAVE TO TAKE CARE OF THE CAREGIVER FIRST!!!

Take some time for you.  It doesn't have to be major but try to do something nice for yourself every day.  Even if it's only 5 or 10 minutes.  You will feel better.

Your husband is lucky to have you.  We are all here for you and hope you will return often.  We are all just a keystroke away!

Hugs and love to you and your husband,

Pam

My Mom lost her one year battle with CC on April 3, 2009.

"A prognosis is simply an audit of how truly precious each day is.  Live each day to the maximum, celebrate what was, and what is - Don't spend your life looking forward to what will or might be." .... words of wisdom from my beloved son on hearing of his grandmother's CC prognosis.

Re: new to cc and this site

Carolynle,

I really don't have anything else to add to the good information you have all ready gotten, but want to welcome you to the site. You have found the best place to come for help & support when dealing with this horrible disease. We are all here to help & support each other through this terrible journey that none of us wanted or expected to have to be on.  I will be hoping for the best for you & your husband. Take care. You & your husband are in my thoughts & prayers.

Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: new to cc and this site

dear darla,pam,and marion

i cannot begin to thank you enough for the lovely words of support and help already. i will do some searches on this site for my questions and will try the laxative/stool softener suggestions you mentioned.i have also emailed our physician to discuss the ct of the abdomen.i feel like i have a connection with everyone on these message boards.our family and friends are trying to be really supportive however until you are living this in your own home it's hard for everyone to fully understand what it's like.thank you from the bottom of my heart.i feel so fortunate this site is available for help and support............carol

Re: new to cc and this site

Dear Carol,

You are so right. I too have found that most of our friends & relatives have no idea of what we are truely going through.  Everyone here is or has been through what you are now dealing with & we do truely understand & sympathize. I have gotten so much help, support & comfort from all of the wonderful people on this site and am so grateful to have found it.

Keep in touch. I will be hoping for the best for you & your husband.

Love & Hugs,
Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: new to cc and this site

Hi Carol,
Welcome aboard, although I'm sad that you and your husband have to be going through this.  I too had problems burping and an uncomfortable tummy until I realized that my consumption of soda pop was causing those issues.  I'm not sure that will help, but not drinking soda pop has helped me.  As far as constipation, yesterday my doctor recommended I take Metamuci every day.

Re: new to cc and this site

Dear Carol, welcome to the best little club in the world that no one wishes to join! You are so right that no one can believe or understand what our loved ones go through. Pam was right on about it all but I would just like to add that for the tummy we tried Maalox and it worked quite well. Also for burping Brioche, the Italian remedy like Alka Seltzer but better.  Its in a blue plastic bottle at Walgreen's. You must take care of yourself as we can wear down very fast. I found a good out let was to get in the car, drive down the street and yell or cry. What ever. But it was my private time. We are here for you to ask, rant or cheer. Please keep us posted.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: new to cc and this site

hi! everyone
again thank you so much for all of your help and suggestions.i just gave my husband dennie some maalox to see if that helps.i'm also going to try the brioche.lainy,guess what? i do exactly the same thing as you do sometimes.when i'm in my car coming from the store or something i sit in the driveway a minute and just scream or sometimes scream while i'm driving.you're right.it does help.i am a nurse but again when this happens in your own home everything goes out the window.i have researched and read everything i possibly could but have found that i need to individualize everything to see what works for dennie.i'm afraid that dennie now may have taken too many laxatives.nothing has been formed if you know what i mean.it's alot of water.sorry to be talking about this but this seems to be his major discomfort.i'm trying fiber,believe me everything.it seems to have gotten alittle worse over the past 2 weeks.to be honest i'm concerned he may have a bit of an obstruction high up in the colon or progression of his disease.his liver function studies are usually elevated after chemo then come back to normal.they are slightly elelvated now but just had chemo on the 12th of february.boy,the scary part of all of this is that on paper you wouldn't believe he had cancer.he hasn't needed a pain pill for the past 2 days.he gets really upset and uncomfortable if he doesn't move his bowels for 1 day.when he doesn't he gets very anxious and starts taking laxatives.maybe--i hope i'm wrong about the progression of the disease--he just needs to increase walking.we live in western pa and it's very cold and snowy but maybe i can go for walks with him at the mall or something.from morning till night everyday he's fixated on his bowels.i pray to God and st.peregrine every night to give me strength,patience but i have to be honest some days it's real hard........carol

Re: new to cc and this site

Dear Carol I think it is very hard on us nurses as we expect so much of ourselves and deperately try and problem solve everything.If he is not vomiting its probably not an obstruction as such-maybe some pressure.Remember you have to be patient with the laxatives as their effect can take time.Plenty of fluids and incre ased activity even just walking around the house a few times can help.The morphine based medications are very constipating unfortunately    good luck

Re: new to cc and this site

thank-you magic for helping

Re: new to cc and this site

Hi Carolyn
sorry for what you and your husband are going through.  My father has been battling CC for twenty months and we have had far more bad days then good.  Our Gastrointerologist suggest every laxative under the sun, and we tried tons, but the one that worked the most effectivly was something called Magnesium citrate.  It is available over the counter at most Pharmacies.  It is a liquid, and should be taken only once a week, but it does the trick for my dad eveyytime.  I would think if your huband had a blockage or obstruction there would be pain?? 
You have been added to my prayer list
Barbara

The  Lord is my shephard

Re: new to cc and this site

Hello Carol & welcome. You & your husband have been through a lot in a very short period of time, my thoughts are with you.  You have a great team here with a lot of experience, as you can see from the many posts, that can answer so many of your questions- or be simple be there to listen. My Dad has cc & was diagnosed in Nov. 08, the constipation has been a huge struggle for Dad, causing major discomfort & irritability. When he was in the hospital for several days in Dec. & was on a hydration drip, he was more normal than he's been in several months... & while he knows hydration & stool softeners are key- drinking so many liquids is still a very big challenge for him. He also takes milk of magnesia (occasionally) in addition to the Maalox , this had a more immediate impact for the relief of constipation & indigestion for Dad. He starts the 5FU this week, in exchange for the gemzar, & this is may cause diarrhea instead of constipation according to the paperwork.  The burping & indigestion are also causing Dad significant discomfort & he's so very tired all the time.   

Just wanted to drop you a note & remind you, along with the others, that you're not alone.

Here is a link to some iron-rich food sources....  As an aside, the chemo really effected Dad's appetite & we've found that lemon helps to rid his mouth of the salty/metallic taste, so that he can tollerate more. 

http://www.bloodbook.com/iron-foods.html

Hugs to you Carol,
Tess

Re: new to cc and this site

Hi Carol, I forgot to mention that we are not far from you. Dad is being treated at the Robert Packer Guthrie in Sayre PA. He has an aggressive team here that he's very happy with. Should you ever decide that you wanted second options on anything- please touch base & I'll pass on the contacts.

Best,
Tess