Pancreatic Cancer

Chemo for pancreatic cancer
Hi Karena, My mother is 81 and was diagnosed with pancreatic cancer in 11/08. She is on a program of chemo which is working very well for her. She is not nauseous, she does not throw up, she has not lost her hair. It took about 2 months on chemo to see a BIG change. She had more energy, she got around better, she started doing her own housework again (and even mowed the lawn once or twice), she is driving again and going into grocery stores and occasional shops. She even drives herself to chemo treatments now! Before, we had to drive her and push her from reception room to waiting room to chemo in a wheelchair. (Her cancer is also inoperable because the tumor encases the splenic artery.)

Diane S. said:

Chemo for pancreatic cancer
Hi Karena, My mother is 81 and was diagnosed with pancreatic cancer in 11/08. She is on a program of chemo which is working very well for her. She is not nauseous, she does not throw up, she has not lost her hair. It took about 2 months on chemo to see a BIG change. She had more energy, she got around better, she started doing her own housework again (and even mowed the lawn once or twice), she is driving again and going into grocery stores and occasional shops. She even drives herself to chemo treatments now! Before, we had to drive her and push her from reception room to waiting room to chemo in a wheelchair. (Her cancer is also inoperable because the tumor encases the splenic artery.)

Pancreatic Cancer
Diane,

Can you tell me if your mother goes to a physican who specializes in pancreatic cancer. My husband was diagnosed 6 weeks ago and stil has not recieved treatment. We live in Louisiana and I am trying to find someone who can refer me to an oncologist who specilizes in pancreatic cancer. His cancer has spread to the stomach by the umbilicus and has spots on the liver. We are now being sent to get a biopsy today to see where the cancer originate from. I'm not real happy with our doctor and we've tried to get in with other doctors but they are not taking new patients. We really can't afford to travel outside of Louisiana. If anyone can help us with a referral service we would appreciate it. And, Diane and Karena I hope your family members respond well to the treatments.

Pancreatic Cancer
dbruce-

Our first thought upon hearing the diagnosis was to get in touch with, and fly to, Johns Hopkins Pancreatic Cancer Clinic, as they, obviously, only work with Pancreatic Cancer. They have trials you can become a part of, but only if your cancer hasn't spread. After finally doing a PET scan, they found that my mother's cancer had spread to her liver...so she was out! To tell you the truth, she is happier back here in Syracuse, living in her own home and being around her own people and places. The oncologists here do not specialize in pancreatic cancer...they treat all types of cancers, but what they're doing for her seems to be working. She feels better, and her life has improved, and is extended. The big advice we received in the beginning was to get with an oncologist at a University affiliated hospital...a teaching hospital that is up on the newest treatments and procedures. Hopefully, you have done that. If not, you can always get a second opinion from one during the course of treatment, to make sure you still feel good about your plan, or to change.

Tim_PM said:

Non-operable Pancreatic Cancer
Karena,
I have stage IV pancreatic cancer which has metastazised into several lymph nodes, and probably into the liver, though the spot is still too small to be clearly identified. I also am inoperable, even without the metastasis. The tumor encases major arteries and has also put pressure one the channel that drains the liver. That pressure led to jaundice (yellow eyes and skin) and severe itching. It took a while from that incident to identifying the cancer, but my doctors were very quick to insert a stent to allow the liver to drain. I still have a lousy prognosis, six months without treatment, and with chemo, possibly double that. At sixty one, the timing of this is not great, we haven't completely prepared ourselves for retirement, and my early death makes my wife's financial future difficult, especially on top of what the economy has done to our life savings. Of course all of these life expectancy tables are statistical averages, and mine may be more or less, though as I absorb the information, and assimilate what is happening to me, I just can't get rid of the feeling that I am on the low side of those numbers. Quite frankily, this cancer scares the living daylights out of me, and the treatment is equally intimidating. I have chosen to do chemo to try to extend my life expectancy a few months, but my wife and I have both agreed that if I don't feel the side effects of the chemo are worth the extra time, I will call it off, and let go of life. I have also joined a trial to help the scientists who are helping us fight this disease. I don't expect it will turn into the magical silver bullet that cures this cancer, but I felt it was worth a try for that possible outcome as well as for the advancement or the science. I think the decision is your mom's to make, whether to fight, or just let go. They can make us comfortable for the most part for the months we have left with pain medications as the disease progresses, and without treatment, it is not a terribly long time to wait. Let your mom decide whether she wants to try to prolong her life through Chemo, or whether she would rather just call it a day, and see what the afterlife is like. My thoughts and prayers for your mom, and yourself. She has a difficult decision to make, but your support of her decision will be very important. Best Wishes, and may God hold you both in the palm of his hand.
Tim.

My dad is in a similar condition
Hi Tim,

We'll add you to our prayer list. My dad was diagnosed with the same stage IV Pancreatic metatstatic cancer last week - also inoperable. Doctor's confirmed it's spread to his liver - only option he has is the chemo, as you mentioned, to possible extend his life. Up until now he'd been quite healthy and prior to this his doctors had actually said that they's seen some 65 year olds in worse shape than he (my dad's 75). He's getting the first bout of Gemzar on Wednesday. He wants to play some golf this weekend if he is feeling ok - try to get out with close friends and close family since we do not know how fast this is going to go since we have no "baseline" as to how quickly it's progressed. Obviously this has been a real kick in the gut, but one's faith can't be tested in the easy times, and it still doesn't change the fact that ultimately God is in control...needless to say, I know these next few months will change me permanently. Fortunately we have been blessed with a close family and the four of us kids along with my mom are doing what we can to keep thing as normal as possible for dad (and my mom). My dad still has his sense of humor and for the time being is maintaining his weight. His pancreas is in essence "out to lunch" and no longer really producing much insuling which requires my mom to give him a shot each day. Keeping his blood sugar down has been huge in terms of improving how he feels. I'm not sure if you mentioned anything like that in your previous posts but if for some reason they haven't validated your glucose levels lately they probably should, especially if you have been exhausted as of late. In any case, keep the faith and get outside and enjoy each day you're feeling well enough to do so. From what I have researched in some medicals journals, light exercise (walking or stationary bike) is supposed to help avoid/minimize some of the side effects of chemo.

Take care of yourself and good luck with your chemo, as I mentioned, you and your family are on the the prayer list. We've had a bunch of folks supporting us and it makes an enormous difference.

Best,
Ken

NH_Naz said:

My dad is in a similar condition
Hi Tim,

We'll add you to our prayer list. My dad was diagnosed with the same stage IV Pancreatic metatstatic cancer last week - also inoperable. Doctor's confirmed it's spread to his liver - only option he has is the chemo, as you mentioned, to possible extend his life. Up until now he'd been quite healthy and prior to this his doctors had actually said that they's seen some 65 year olds in worse shape than he (my dad's 75). He's getting the first bout of Gemzar on Wednesday. He wants to play some golf this weekend if he is feeling ok - try to get out with close friends and close family since we do not know how fast this is going to go since we have no "baseline" as to how quickly it's progressed. Obviously this has been a real kick in the gut, but one's faith can't be tested in the easy times, and it still doesn't change the fact that ultimately God is in control...needless to say, I know these next few months will change me permanently. Fortunately we have been blessed with a close family and the four of us kids along with my mom are doing what we can to keep thing as normal as possible for dad (and my mom). My dad still has his sense of humor and for the time being is maintaining his weight. His pancreas is in essence "out to lunch" and no longer really producing much insuling which requires my mom to give him a shot each day. Keeping his blood sugar down has been huge in terms of improving how he feels. I'm not sure if you mentioned anything like that in your previous posts but if for some reason they haven't validated your glucose levels lately they probably should, especially if you have been exhausted as of late. In any case, keep the faith and get outside and enjoy each day you're feeling well enough to do so. From what I have researched in some medicals journals, light exercise (walking or stationary bike) is supposed to help avoid/minimize some of the side effects of chemo.

Take care of yourself and good luck with your chemo, as I mentioned, you and your family are on the the prayer list. We've had a bunch of folks supporting us and it makes an enormous difference.

Best,
Ken

My sister
My sister is 78 and was diagnosed in April with pancreatic cancer. She had the whipple surgery May 1st and spent the next month in the hospital. Bottom line was that her stomach never "woke up" and they sent her home to die. They referred her to hospice and she and her husband decided to spend the rest of her life at home. She receives her sustenance by a liquid thru' a tube and pump into her small intestine and has a tube (drain) from her stomach attached to a bag. She is in her third month of this daily routine with no control of pain and continuous nausea. Hospice is ineffective, coming only three times a week. How can a surgeon destroy a person's insides and then say, "Sorry, didn't work. Go home and die now." And, not have any follow up because she is under the control of hospice.

Tim_PM said:

Non-operable Pancreatic Cancer
Karena,
I have stage IV pancreatic cancer which has metastazised into several lymph nodes, and probably into the liver, though the spot is still too small to be clearly identified. I also am inoperable, even without the metastasis. The tumor encases major arteries and has also put pressure one the channel that drains the liver. That pressure led to jaundice (yellow eyes and skin) and severe itching. It took a while from that incident to identifying the cancer, but my doctors were very quick to insert a stent to allow the liver to drain. I still have a lousy prognosis, six months without treatment, and with chemo, possibly double that. At sixty one, the timing of this is not great, we haven't completely prepared ourselves for retirement, and my early death makes my wife's financial future difficult, especially on top of what the economy has done to our life savings. Of course all of these life expectancy tables are statistical averages, and mine may be more or less, though as I absorb the information, and assimilate what is happening to me, I just can't get rid of the feeling that I am on the low side of those numbers. Quite frankily, this cancer scares the living daylights out of me, and the treatment is equally intimidating. I have chosen to do chemo to try to extend my life expectancy a few months, but my wife and I have both agreed that if I don't feel the side effects of the chemo are worth the extra time, I will call it off, and let go of life. I have also joined a trial to help the scientists who are helping us fight this disease. I don't expect it will turn into the magical silver bullet that cures this cancer, but I felt it was worth a try for that possible outcome as well as for the advancement or the science. I think the decision is your mom's to make, whether to fight, or just let go. They can make us comfortable for the most part for the months we have left with pain medications as the disease progresses, and without treatment, it is not a terribly long time to wait. Let your mom decide whether she wants to try to prolong her life through Chemo, or whether she would rather just call it a day, and see what the afterlife is like. My thoughts and prayers for your mom, and yourself. She has a difficult decision to make, but your support of her decision will be very important. Best Wishes, and may God hold you both in the palm of his hand.
Tim.

Pancreatic Cancer
Hi Tim, im really saddened to hear your story. My husband was diagnosed with Pancreatic cancer last week as yet we dont know what stage it is. We do know that up to last week it hadnt spread to his liver it is at the head of the pancrease and therefore inoperable. as it is covering the main blood vessel into his stomach and creaping into the lymph nodes that join this vessel. Like you his bile duct was blocked and they put a stent in to push the tumour out of the way to allow the bile to drain to where it should be. For a few days after he felt a little better but last night it was as if hed gone back to square one. His colour is slowly returning but he is still being sick, he hasnt eaten anything for well over 2 weeks. I was wondering if you could tell me if you experienced this after your procedure. Im really worried about his state of mind as well, its almost as if he has given up before the fight. Im giving him all the support and strength I can but he can be so upsetting some times as he is very narky and irritable. I would be greatful for any advise or words of encouragement that I can give him.

Kind regards

Jan

Janj13 said:

Pancreatic Cancer
Hi Tim, im really saddened to hear your story. My husband was diagnosed with Pancreatic cancer last week as yet we dont know what stage it is. We do know that up to last week it hadnt spread to his liver it is at the head of the pancrease and therefore inoperable. as it is covering the main blood vessel into his stomach and creaping into the lymph nodes that join this vessel. Like you his bile duct was blocked and they put a stent in to push the tumour out of the way to allow the bile to drain to where it should be. For a few days after he felt a little better but last night it was as if hed gone back to square one. His colour is slowly returning but he is still being sick, he hasnt eaten anything for well over 2 weeks. I was wondering if you could tell me if you experienced this after your procedure. Im really worried about his state of mind as well, its almost as if he has given up before the fight. Im giving him all the support and strength I can but he can be so upsetting some times as he is very narky and irritable. I would be greatful for any advise or words of encouragement that I can give him.

Kind regards

Jan

Attitudes
Jan,
I haven't had any side effects from the stent procedure, except that the yellow went away, and so did the itching. It took longer than I would have liked for the itching to get really trounced, but it was worth the wait. My appetite is fine, and I even went on a little eating binge when I was first diagnosed, since so much that I read said that PC patients tend to lose weight during Chemo. I put on about 12 pounds in short order. Then I found out that the quantity of Chemo they give you is predicated on your height and weight. I was already in trouble since I am about 6'6", and the 12 pounds just compounded the issue. This is really just joking around, since I probably can't tell the difference between what they would have given me if I hadn't gained the weight, and what they are giving me since my weight is up. On the serious side, your husband should try to eat something. His body needs resources to effectively battle this cancer. You might try ensure, though if he has to watch sugar, this drink has a fair amount of sugar, so be careful. Also, Ensure seems to be pretty pricey. I haven't found anyplace that sells it for less than a dollar a bottle. I will keep looking though.
Perhaps some of what I am about to say will help with you and your husband. I don't expect to beat this disease, it is just too unrealistic, especially at stage IV. But I wouldn't mind beating the statistics, and adding several months to my life expectancy. And if I succeed in doing that, I want those months to be as enjoyable as possible. I am into making memories for my wife and friends. Being irritable is counterproductive, though I understand why your husband might feel that way. He probably considers that he has just received a death sentence, and quite honestly, that is probably the case, especially if his cancer is inoperative. But the timing of that death is still uncertain, and the journey will be what you and he can make of it. I suspect that there will come a time when I will become introverted, trying to put my life and death into perspective, and I will pull away from loved ones somewhat. I have seen that in my parents, and father in law. Don't let that get you down, you are not at fault for anything, it just seems to be a part of the process of death. But I think your husband is letting down a little too early. Let him know how hard it is to be supportive when he is irritable and "narky". Best wishes, and many prayers for you and your husband. I need to rush off for Chemo right now. If you want to exchange comments in a less public arena, I would share my personal e-mail with you. Or there may be a less public way on this bulletin board, I haven't explored that possibility yet. Bye for now.

b616 said:

cancer pancreas
Hi Nancy

I had gall bladder surgery in March, Dr. discovered an obstruction in bile duct.
After much checking at UVA they discovered a tumor in pancreas, it was cancer.
I had the Whipple procedure at John Hopkins, had Dr. John Camermon (the best).
Just finished 25 radations and Xeloda Chemo, whoo! I had so many side effects,
down to 110 lbs, weighed 146 in March. Feeling better now, they are giving me a month off then want me to start chemo Gemzar, Do you now much about Gemzar and its side effects. Dread
starting something else when just starting to feel human again.
Barbara
b616

Gemzar
Hi Barbara,
I'm glad your're finally done with your radiation/chemo. My husband Len just finished 20 out of 25 radiation treatments and chemo 5-Fu, pump 5 days a week, and once a week oxaliplatin. One more week to go. He had terrible gas and diarrhea and extreme fatigue. It really did a number on him. He had his Gemzar first. Three treatments once a week, then he had a week off before starting the radiation/chemo. He had almost no side effects with the Gemzar. His white counts went too low the second week and he had to get a shot. He had a slight rash that we controlled with benadryl and some cream to rub on his rash. He wasn't tired or anything. I don't know how it will be for you after just completing your other treatments. Hopefully the month off will allow you to build back up. Len has lost 50 pounds so far, but he had it to lose so that part is O.K. He had a buddy in the onco's office who had nausea from Gemzar. Everyone is different. Good luck. Nancy

Pancreatic Cancer
My mom was also diagnosed with pancreatic cancer August 2009. She had been having a lot of back pain and had thought that she had hurt her back working. She went on like this for probably a couple of months but the pain became constant and after taking meds for back problems that did not help she eventually became jaundiced and started itching really bad. Another trip to the doctor and more tests gave the cancer diagnosis. She is 64 and has worked for about 45 years. Never been sick. Unfortunately for her, she had retired a few months early to help care for her parents and she, for probably the first time in her life, had no insurance which makes it hard to go to the top notch hospitals and get that all-important second opinion. Her surgeon at first seemed reluctant to do the surgery.
He was concerned that because she was having so much pain that the cancer had spread to the nerves in her back. After doing another scan that did not show that the cancer had spread, he agreed to do the surgery. I do not know how many Whipple procedures he had done before but with no money or insurance we felt lucky that he was kind enough to do the surgery at all.

My mother had the Whipple procedure on Sept. 3rd. The surgeon had told her to expect to be in the hospital from 10 days to 3 weeks after surgery. They removed the tumor(3cm)from the head of her pancreas and did not see any more visible signs that the cancer had spread. She came home on the sixth day after her surgery. The pathology report found that 2 out of 13 lymph nodes removed did show cancer. All things considered, she is doing well now I think. She has those same problems that most people do with having no appetite and she doesn't feel good a lot of the time but she is not even two weeks out from surgery yet so I think that is to be expected. She is scheduled to start chemo and radiation in 3 weeks. I am hoping she will eat between now and then as I am afraid that it will make her too sick to eat. They have told her to drink Ensure whenever she can.

With everything you read and hear about this cancer it is hard not to fear the worst but we are trying to stay positive and thank God for the good result she has had so far. I wish all of you the best of luck. I know it is very hard on both the patient and caregiver. We are just taking it one day at a time.

Similar situation
Hi Karina,

My father was diagnosed with Pancreatic Cancer two months ago. He was inoperable as the tumor was lodged between the pancrease, bile duct and liver and due to his age (86) the doctors said the whipple surgery would be too hard on him with more risks than a possible benefit. So he opted to go with chemo. He has finished his first round with Gemzar. He goes in once a week for three weeks and then rests the fourth week. I must say that he didnt have any side effects at all (just as the dr said). He did get EXTREMELY weak by the 3rd week but it's been two weeks now with no chemo and he is back to himself again. He just had his stent replaced from a temporary one to a permanent metal one and while the dr was in he did say the tumor had gone down in size.So after just one full round of Gemzar it did seem to help. As for the quality of life- the first weeks weren't bad. The last week was horrible! But after rest and plenty of good eating my dad is holding up fine.

Also-we did have a hard time with his appetite. There was a point where he just did not want to eat anything. I did some reasearch and found a prescription called Megace and asked dr to fill it. It's been a month since my dad's on it and he has GAINED 11 pounds! Not sure why the dr didn't tell us about it but I'm just thankful that I found it!

Best of luck and remember that ultimately it's not your responsibility to decide what your mom will do. It's her decision-but it is your responsibility to provide her with the right information so that she can make her decision based on the right facts. I had to accept this myself as I used to loose sleep over what my dad's choices were.