Father diagnosed a month ago.

HikeMaitch · Regular Joined: 12 Jul 2006 Posts: 12

hello everyone,
i wish the circumstances were different for all of us 'meeting' like this. this is my first time writing on this board. i have visited in the past while looking up information on pancreatic cancer. like many, i was completely ignorant to any information on it until it was a necessity for me to learn.

backstory: my father (72) had a slip on some ice back in january '06. suffered some pains in the abdomen after that. he believed it to be an ulcer that he used to have a while back. went to the doctors in feb and march and they were treating him for an ulcer. in may he went to the hospital and they did x rays that led to a cat scan that led for him to see an oncologist.

after weeks of testing and such he finally got a biopsy that delivered the sad confirmation that it was cancer of the pancreas. this was in mid june. my family was able to get a well respected surgeon to see him, but he determined that the 4 centimeter tumor was pressed against some nerves and wrapped around the main artery that feeds the legs from the heart. at this time, surgery isnt an option. so now he is in his first week of radiation and chemo combined. hopes are that it will shrink in two months time so that surgery may be a viable option.

the problem is that he is 72 years old. a very competant 72 but none the less age is a factor. he has lost 30 lbs since jan. (the e.r. weight from his slip and fall unitl now.) the pain is constant, the nausea is semi-constant and the lack of appetite is nearly constant as well. he is on an appetite increaser that tastes absolutely horrible to him. he will only eat small portions because the feeling of vomiting approaches while he eats. we try to get the ensures or the boosts into him to get some kind of nurishment.

i am afraid that if they are successful in shrinking it that he will be a candidate for surgery that they will deny him because of his age and health. fear that he wont survive the surgery. he is going through the pain pills quickly. someone suggested going to see a pain management specialist to see if that may help. he is taking oxycontin, oxycodone and now they also have him on hydromorphone. to me, that seems like a lot of pain meds and he still is barely getting relief.

i know consistancy is a huge part of it. consistant with the meds, consistant with the diet, consistane with the treatments. but all of that looks great on paper. the real world is inconsistant and i need to pack some lbs on my father. he is losing weight quicker than he can gain it. we need to keep him healthy enough to survive surgery.

i am hoping that someone else may have some knowlege or some insight they may share with me about the rapid weight loss battle. i am aware of the 'tough love' scenerio and the 'just eat it' motto but what to do when they dont work? its easy to be on the outside looking in and tell someone to just fight through the pain and eat whats on the plate but to be honest, i have no clue what it must be like to be in his position.

thank you in advance for taking the time to read and respond to this thread. i hope all of you are keeping your head above water in your own time of crisis.

reenie · Posted: Wed Jul 12, 2006 5:11 pm Post subject: Re: Father diagnosed a month ago.

Sorry you and your family are going through this.

I'm a fan of the fentanol patch as it gives the steady stream of meds and seems to help reduce the spikes of pain.

We may begin thinking about a TPN so that my husband can get some nutrition direclty through his port. I don't know enough about it to know if it would help in your dad's case but it's probably worth asking about. Our oncologist has said if we get 3 boosts a day into Sam then we are doing well. There is something called boost plus which has an additional 100 calories. There are some others drinks available through mail order mostly one is something called Support drink and tho other is Prosure. They both have omega 3 fatty acids.

So sorry not to have more info to share- I called pan can and they sent me all sorts of info- www.pancan.org. Good thoughts to you and yours,Reenie

HikeMaitch · Regular Joined: 12 Jul 2006 Posts: 12

thanks reenie for the info. i read your post about sam losing 50 lbs. that is a lot of weight to lose. has he gained any of it back? i will most certainly look into the boost plus. any additional calories will help. the surgeon said he didnt care what he ate, just calories, calories, calories. we were even thinking about the weight lifting weight gain shakes sold at GNC's or other health style stores. i believe those drinks are designed to pack on the pounds. have you heard any pros or cons about those?
thanks again.

freeio · Posted: Tue Jul 18, 2006 9:16 am Post subject: A thought or two on nutrition

I come at this from a different perspective, in that I am the patient. From experience, the opiates do a nearly perfect job of causing constipation, and that is the big enemy of getting enough nutrition. If there is no room for more food, it makes it awfully hard not to lose wieght. I have been there. I am down 35 pounds since February, but the loss has pretty much stopped for the last 60 days.

The GI doctor put me on 17 grams of Glycolax, twice a day, which has helped make it so that the water remains in the intestines, so that there is some hope of the contents moving. In my case it moves very, very slowly, but at least it moves, making room for more food every day. This is not a miracle cure, but it makes a very big difference for me.

In my case, the high density (boost) sort of things do not work. They are so dense that they contribute to the constipation. My beloved wife Monica figured out that if she feeds me light meals that they stay down, and that is the first prerequisite. My typical meal any more is soup (I like several of the Progresso ready-made soups) and fresh fruit, to which she adds lots of sugar and cream. I enjoy the taste, it stays down, and does not cuase any gastric issues of its own. Sometimes she makes tiny sandwiches (I cannot eat much at a time) and serves more fresh fruit. Strawberries and blueberries are in season right now, and are nearly irresistible, even though I may feel terrible.

So my suggestion is that rather than going for the maximal caloric punch, try the lighter tasty foods, in small servings. Between meals, try popsicles. They are mostly liquid, but are about 100 calories each.

I hope this helps.

Cheers!

Marty
_________________
-------------------------------------------------
whipple procedure, Oct. 21, 2004
28 days of radiation
56 days of Chemo using Xeloda
diagnosed as progressive recurrent pancreatic adenocarcinoma (Stage IV) Jun. 20, 2006
was treated with gemcitabine, oxaliplatin, and tarceva, which all failed.
Cancer blog: http://diehlmartin.com/cancer.html

HikeMaitch · Regular Joined: 12 Jul 2006 Posts: 12

thank you marty for the response and the information. hearing it from your perspective does offer me hope. i know that each person's situation and body varies but it's a step in a new direction for my family. for that, i thank you. finding myself in this situation with a loved one is a hard dose of reality for me. being in the situation, as you are, i could not even imagine. but you take the time to help the rest of us that are searching for an answer. the answer that will fix all of this. and i know there is no simple answer but it is nice to see people that are sharing so much with new people that are just discovering pancreatic cancer. i am humbled by this board. thank you again for your advice and help.

Cathi · Regular Joined: 26 Jul 2006 Posts: 10 Location: Virginia

Thanks so much Marty, you have no idea what a tremendous help you have been to me.

My dad is 69 years old and has Stage 4 Lung Cancer. He just completed his first go around with chemotherapy a week ago. He has lost so much weight rapidly I could probably pick him up with no trouble.

I hope you do not mind if I ask you a question because I am having a difficult time getting some answers. Here is the problem with his taste buds, he says that everything tastes like clorox, I really don't blame him for not wanting to eat. However, we have to eat in order to survive, and I am just looking for ways to help him. My question is this, does everything, or some things taste like clorox to you? I have paid attention to what you said that you are able to tolerate, and that gives me something to work with. But I wanted to know if you have a clorox like taste in your mouth?

Thanks for sharing your experience Marty, you are a Blessing!

Cathi

freeio · Posted: Sat Aug 12, 2006 3:42 pm Post subject: Taste has not been my problem

For whatever reason, I have not had the taste issues other patients have had. I assume it may have to do with the particular set of medications each patient gets. As a result I cannot advise what works for that.

I am sorry not to be able to help.

Marty
_________________
-------------------------------------------------
whipple procedure, Oct. 21, 2004
28 days of radiation
56 days of Chemo using Xeloda
diagnosed as progressive recurrent pancreatic adenocarcinoma (Stage IV) Jun. 20, 2006
was treated with gemcitabine, oxaliplatin, and tarceva, which all failed.
Cancer blog: http://diehlmartin.com/cancer.html

Cathi · Regular Joined: 26 Jul 2006 Posts: 10 Location: Virginia

Hi Marty,

Thanks and of course, I understand you cannot advise. But, you have helped. After I read your post, I went out and bought some popsicles for my dad and he ate two of them. He said this was the best tasting thing he has had since his chemotherapy. After he ate the popsicle, he ate a bit of spaghetti and drank some cold gaterade. I would've never thought of popsicles, so you did help.

Thanks again and God Bless.

Cathi

HikeMaitch · Regular Joined: 12 Jul 2006 Posts: 12

Hello Everyone,

I do hope this finds everyone as well as they can be given our circumstances. It has been a while and I wanted to throw an update out there.

My father completed his 5 1/2 weeks of radiation and is set to have one more round (his third) of chemo in early Sept. Then we get a scan to see if the tumor has gotten any smaller. My father seems to be slowly losing this battle. He is down to 117 (roughly another 12 lbs) and now he has low blood pressure. Pain management is a bit better when they raised his meds level but its not controlled by any means. Food is still a huge problem. Its both, a lack of appetite and nausea, that complicate his eating. He has meds to help combat both problems but I think they only help a little. Its obvious that his body is using more than it is taking in. We are seriously considering a feeding tube because with his lack of wanting to eat and his stubborness we feel it might be time to bypass his brain and tastebuds when it comes to the food. We know how important it is for the body to be as healty as it can for this fight.

He is also depressed and emotional. I believe its a combination of what he is going through and the meds in his system. My family also knows that the mental health is equally as important as the health of the body.

My question to anyone that may have an opinion is about hynotherapy. It is another avenue we have started thinking about. Supposedly there are programs (so far I have only seen self help discs/programs on line) that cater to cancer patients. Has anyone used a form of this? Does anyone know anyone that has used a form of this and what were the results? Did you find it helpful or did it seem like just spinning the wheels and wasting precious time?

Thanks for taking the time to read this and respond.

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