This web page was part of a research study to assess the effectiveness of online support, nurse practitioner Marian Grant, who answered questions on symptoms, treatments and support for pancreatic cancer patients. This page is now closed to questions/comments, but for a list of previously answered questions by Marian Grant, go to the comments section below.
What is palliative care?
Palliative care is specialized medical care for people with serious illnesses. This type of care is focused on providing patients with relief from the symptoms, pain, and stress of a serious illness - whatever the diagnosis. The goal is to improve quality of life for both the patient and the family. Palliative care is provided by a team of doctors, nurses, and other specialists who work with a patient's other doctors to provide an extra layer of support. Palliative care is appropriate at any age and at any stage in a serious illness, and can be provided together with curative treatment.
What is a nurse practitioner?
A nurse practitioner is a registered nurse with advanced training or a master’s degree in a medical specialty. Nurse practitioners work as primary providers of health care. A nurse practitioner can offer information, education, and other support for people with serious illness and their families.
A nurse practitioner is a registered nurse with advanced training or a master’s degree in a medical specialty. Nurse practitioners work as primary providers of health care. A nurse practitioner can offer information, education, and other support for people with serious illness and their families.
Palliative care nurse practitioner Marian Grant is certified in palliative care and has a Master’s degree in Nursing from Johns Hopkins University. She has practiced as a palliative care nurse practitioner in one of the Johns Hopkins hospitals. She also has a doctorate in nursing practice degree from the University of Maryland.
Key words: biliary stent and itching
Hello Marian. Am I ever glad I've found your site. My father was diagnosed with a pancreatic tumor about a month ago. He had a stent put in a week ago. The stent was inserted to relieve the jaundice, specifically the itching, until he meets with a team next week to discuss treatment. The itching is keeping him from getting any rest. There have been 30+ hour periods where he cannot sleep.
If the stent is doing it's job, shouldn't the jaundice be gone by now? Or are we expecting results too soon? He says that he feels like the itching is getting worse. Any advice or resources would be a huge help. Thank you.
Dear Lynn,
I'm sorry to hear that the itching is causing him so much trouble. If the stent is working properly, the jaundice and the resulting itching should be getting better, not worse. The stent may need to be checked and it sounds like he's meeting with the team soon to do that. In the meantime, taking an over the counter antihistamine may help as will putting cool cloths over his skin. His team should know about this problem in case there's anything else they can suggest for him. Best of luck, Marian
Key words: eating after Whipple
My mother underwent a Whipple procedure on May 1,2012. Released from the hospital on May 22,2012 with a j.p. drain and feeding tube. She has orders of nothing by mouth, not even water. Any opinions on when she may be able to eat again? Thank you!!!!!!!
Dear Brandi,
I think when she can eat will be up to her surgeons. I hope she's recovering well from the surgery and that she's feeling better. Best of luck, Marian
Key words: diet and cancer
First of all please allow me to say that what you are doing is wonderful. I am certain that all the folks that come to this board would agree. I left a message a while ago, and I appreciated your response about my brother who has a malignant tumor on the tail of his pancreas that is a little over 10cm long. I am puzzled. He has had no traditional treatments ( or distal operation). As I had mentioned before, he has only had alternative treatments (ozone, mega doses of vitamin C etc.) He eats no fruit, no carbs, or anything with sugar. He basically eats sprouts and vegetables - but only those with no sugar, no potatoes at all. He seems to be doing fine ( other then weight loss, 63 pounds). The only pain he has is a sore neck and shoulder. Do you think that the way he eats is curing him? Thank you so much for any feed back you can offer.
Dear Janice,
I'm glad to hear that he is doing so well. It's hard to know why, however, since there's no evidence that these treatments are effective for pancreatic cancer. However, everyone's case is different and what works for one person might not for another. Whatever is the explanation here, I wish you and him well. Marian
Key words: New onset diabetes type 2
I am 64 female recently diagnosed with diabetes 2. I had an abdom. ultrasound which showed fatty liver, gallstones ( I recently had gall bladder removed) and pancreas looked normal.
My mother died of pancreatic cancer in 1973 at age 48. Is there any kind of testing to see if this diabetes could be a sign of pancreatic cancer? I was not overweight, but did eat a lot of the white foods which I have stopped and lost about 10 lbs. due to changes in diet. I am now 134 lbs and 5feet inches. Thanks for any info. Donna
Dear Donna,
I can appreciate your concern given your family history, but it is unlikely that the type of diabetes you have, type 2, is related to pancreatic cancer. It is not unusual for people to develop type 2 diabetes from having the diet you describe (lots of processed foods) and also being overweight. The fact that the ultrasound you had showed your pancreas looked ok is also encouraging.
Instead, it is the new onset of type 1 diabetes in an older adult that is one possible sign of pancreatic cancer. Nonetheless, I hope your medical provider is aware of your family history. Unfortunately, there isn't further testing to check for pancreatic cancer given your normal ultrasound but I would let your provider know if you develop any new or concerning abdominal symptoms.
In the meantime, your weight loss and better diet is exactly the right thing to do. Some people find that they can control their type 2 diabetes with just diet and exercise. So, keep up the good work on that! Marian
Hello, I just wanted to thank Marian for helping me a year ago with my mother, who lived in Florida. I am in MD. She lived 13 months after diagnosis, and died 8 months ago Sunday. Your assistance made a big difference in her last months, and I see you are still here giving. Thank you, and good luck to all.
Dear Theresa,
Thank you for your kind words but I am honored to be of help and wish you and your family all the best, Marian
Key words: abdominal symptoms, family history pancreatic cancer
My stepdaughter is 49 years old, relatively healthy albeit with a 30-pack-year history of cigarette smoking. Her biological mother passed away from pancreatic cancer in 2009. For the past 8-10 weeks, she has had almost constant diarrhea with abdominal pain. She looks very tired, with dark circles under her eyes and she lacks her usual high energy level. She has also complained of pain in what she believes are her kidneys.
She saw a doctor at our County Hospital 2 weeks ago and he gave her a preliminary diagnosis of IBS, but also ordered a series of tests. She called today to get the results as no one had contacted her. She was told that she had fecal occult blood, blood in her urine, very low pancreatic enzymes and slightly elevated bilirubin. Of course, our family is terrified that these things are same symptoms her mother experienced leading to her pancreatic cancer diagnosis.
Ironically, she works in the ER at the VA hospital, and has for the past 2 years. However, she is a contract employee and as such, has no health care benefits. This makes it much more difficult to get attention from a doctor who will look carefully at history and current symptoms and treat her proactively.
Given the symptoms I've described, how concerned should we be? What other conditions might present this way? Thanks in advance.
Dear Lee,
I can appreciate how concerned you must all be but there are many gastrointestinal (GI) problems that can cause these symptoms. I know her lack of health insurance is a barrier, but she may want to see a gastroenterologist to follow up on her test results and her symptoms. She should also try to cut down or stop smoking, if she still smokes, since that is one risk factor that is strongly linked to pancreatic cancer and, with her family history, she should try to minimize such risks. I wish you all the best and hopes she gets some good answers, Marian
Key words: reluctant to discuss/make end-of-life plans
My 83yr old mother was diagnosed with inoperable pancreatic cancer last may 2011. She has been treated with gemzar since that time and tolerated well. She has lost 30 lbs and has a poor appetite. She has become so frail and weak lately. My questions are: is it normal for her not to ask any questions about her cancer? It is like she doesn't want to know any info about her disease. It makes it hard to talk to her about certain end of life decisions. Also, she resists the next step of coming to live with me now. My sister and I have been staying nights with her since May. But I feel her condition warrants her living with me. I'm worried her time of passing is close and hate to have arguments with her now. Help!
Dear Nancy,
It must be hard to watch her decline and you are right to be looking ahead. However, her reluctance to discuss things or leave her own home is not at all unusual and so it won't help to argue with her. Instead, perhaps her medical team could help bring up these end of life issues with her. Or, since she meets the criteria for hospice, they could refer her to home hospice and that team could start having these conversations. You can even call a local hospice yourself to get that ball rolling. They will be able to help you with your concerns. I hope it all works out that she gets great care and you are able to be with her. Take care, Marian
Key words: treatment for stage 4
My husband has just been diagnosed with stage 4 pancreatic cancer. What treatments can we explore. We were told that it has spread to several organs and surgergy was not an option.
Dear Lisa,
I'm sorry but my expertise is in treating symptoms from pancreatic cancer, not treating the illness itself. My suggestion is that you work with whomever gave him this diagnosis to see what treatment might make sense for him. Take care, Marian
key words: prognosis given ascites and weakness
Dear Marian,
My 75 yr old father was diagnosed with stage IV pancreatic cancer in mid-May. His prognosis was 6-8 months. He declined treatment and entered a hospice program. His health has been declining in the last months, and this decline seems to have accelerated in the last weeks. He has lost about 30 lbs overall, but his appetite remains fairly good. His pain is well-managed with a fentanyl patch and occasional additional pills. He is becoming weaker and has started using mobility aids, but he is not yet bed-ridden. While I was home over the holidays (I live about 1000 miles away), he developed ascites, and it has not been relieved by diuretics thus far. I know the ascites and slowly increasing jaundice are not good signs. Can you guess at a more precise prognosis once these conditions appear?
I am planning to return home for the last weeks of his life to help my mother care for him and to say goodbye. My dilemma is this: I'm not quite sure when to go. I don't want to go and have to stay for a couple of months or more, but I definitely don't want to be absent when help is needed and time is limited. (I am a stay-at-home mom of a young family and cannot coordinate care for them for more than a month or so.)
What's your take on a prognosis from here on out?
Thank you for your help during these hard times,
Sarah
P.S. I forgot to mention that I planned on going home around Jan. 21.
Sarah,
These are very good questions and I can appreciate how difficult it is to try to coordinate your travel plans. I am glad that his pain is managed and it sounds like he has had a good hospice experience and has benefited from that kind of care for several months now, which is wonderful.
I think your plan to be home around Jan. 21 is a good one. In general, ascites is a sign of the last stage and if the diuretics aren’t helping, which they often don’t, he might only have a few more weeks left. His increasing weakness and the need for mobility aids is also a sign of a shorter amount of time left. It sounds like he probably has weeks rather than months now.
One of the best signs will be his appetite and energy level. Usually, people stop eating and start to sleep more in the last few days/weeks. This is the natural dying process and so, when this starts to happen, you will know his time will be very limited.
I am sure your presence will be a comfort to him and your mother. With the support of hospice you should be able to take advantage of this precious time. I am happy to be of help so please let me know if there’s anything else I can do. Take care, Marian
Thank you so much, Marian. Your reply helps me to sort out these last precious weeks. After reading it, I think I will bump up my travel plans to earlier in the week. I will pass this information on to my sister, as she will need to make travel arrangements, too.
Thanks again,
Sarah
Dear Sarah,
You're welcome. In my experience it’s never too soon to go see someone in this situation. If his time is very limited you will be there for it and, if he has more time, you will be with him while he can enjoy your presence. Hospice can also be a resource about his prognosis so you can also check with them to see what they think. Either way, all the best to you all, Marian
Key words: severe abdominal pain
My mother is 83 years old. She is having pain in her abdomen area and ribs. Says it feels like lightning striking. She actually yells out when this pain hits which is most of the time. If she lies perfectly still it subsides some. She has been hospitalized 3 times since Sept. They have done MRI, c-t scan, x-rays, etc. Can't find anything. Gastroenterologist says can't find anything with stomach. the pain center shot cortisone in back thinking coming from back. Still to no avail. Tests cannot be done with contrast due to Stage 4 kidney failure. She is constantly in pain and practically bed-bound. They have her on Percocet, muscle spasm pills nerve pills and all she wants to do is sleep. Even in sleep the stabbing pains hit her in stomach. She's always been very active and worked entire life. We don't know what to do. Cindy
Cindy,
It must be difficult to see her in so much discomfort. The first thing is obviously to try to get the pain better controlled with medications that don’t make her so sleepy. I would try to work with the pain center to see what they can do. If they are not successful, you could ask if there is a palliative care service at her hospital since they manage symptoms like pain. Medications like Percocet can make people initially sleepy but that usually goes away after a few days. If she’s still sleepy it may be due to the combination of all these medicines, along with her poor kidney function and her age.
Beyond getting the pain under control I can imagine it would be great to figure out what’s causing it but it sounds like she’s had a lot of the diagnostic tests that are usually done and so I hope the answer eventually becomes clear. She will need your support since it sounds like this has caused a big change in her life. I wish you both all the best, Marian
Key words: Large pancreatic tumor
My brother has a 10 cm maligant tumor on the tail of his pancreas. He refuses traditional medicine. Three times a week he gets treatment from an Alternative Dr which includes chelation, ozone therapy, mass dose drip of vitamins as well as vitamin C. He has no symptoms except weight loss (62 pounds) he is skin and bones. His Alt. Dr. says they are on the right track even though the tumor has grown ( 2 years ago it was 7.2cm - 1 year ago it was 9.4 - now it is over 10 cm) he says it has to grow before it dies completely. I know this is a scam - but he believes in this Doc. My question is why, when the tumor is over 10 cm is there no pain? Also, his hands and arms, legs and feet are cold and white - why would this be? Thanks for any advice
Dear Janice,
I'm glad your brother does not have any pain from his pancreatic cancer. Even though the tumor is large, it must not yet be pressing on the other surrounding organs in a way that causes pain.
His cold hands and feet sound like a circulation problem that could be from the alternative therapies he is getting. Ozone therapy is not a proven treatment for cancer and can damage tissues. (See the American Cancer Society webpage for more: http://www.cancer.org/Treatment/TreatmentsandSideEffects/ComplementaryandAlternativeMedicine/PharmacologicalandBiologicalTreatment/oxygen-therapy )
Also, his weight loss is concerning. This could be from the cancer or his chelation treatments since those are also not proven for cancer and can cause gastrointestinal problems. Here is the American Cancer Society’s information about chelation:
http://www.cancer.org/Treatment/TreatmentsandSideEffects/ComplementaryandAlternativeMedicine/PharmacologicalandBiologicalTreatment/chelation-therapy
However, your brother has made his treatment choices and it is unlikely that scientific evidence, or you, will persuade him to change them. It must be hard to watch him receive them as they are unproven and potentially dangerous, but I would encourage you to be supportive of him nonetheless and to try to enjoy what time with him you have.
Key words: vaccine for stage 4 pancreatic cancer?
hi! My father was diagnosed with stage 4 pancraetic cancer. They had started chemo but stopped because they said that his liver who not be able to take anymore chemo and that he would need to continue taking the medication he still taking and going to the naturopath. I saw a vaccine that they have now for persons with this cancer, is this a vaccine that can be given to a person with the pncreatic cancer at any stage and how much does it cost? Is there anything eles that can be done for him?
Karen,
I am sorry to hear that they feel he cannot tolerate any further chemotherapy. This happens to some patients. The vaccine you ask about is not yet an approved treatment but instead a research trial. Unfortunately, your father does not qualify as the trial is only open to newly-diagnosed patients eligible for surgical resection of their cancer or patients who are within 18 months of Whipple surgery and cancer free. See the link in my response to Dianne below for information on a vaccine trial at Johns Hopkins.
Although there is no further treatment to slow his cancer, there is a lot else that can be done for him. I'm glad he is still going to his naturopath and I would also suggest that you consider exploring hospice care as an option. The hospice team will work with him and you to make sure he is comfortable and has a good quality of life for whatever time he has left. You can call any local hospice for an admission referral or ask one of his medical providers for that. Hospice is covered by Medicare and most private insurance. There is some evidence that people with pancreatic cancer who got hospice care lived several weeks longer than those who didn't.
These may be difficult holidays so please find ways to take care of yourself too, Marian
Key words: nurse practitioners vs physician assistants
Hi Marian, Physician assistant vs nurse practitioner are somewhat the same? I'm kind of confused over here because they can also do what a nurse practitioner do. Hope to hear from you. It's good to know some nurse practitioner who could also help to cure the cancer. Thanks you!
Dear Leonardo,
It can be confusing! Nurse practitioners and physician assistants do do similar things, although their roles vary somewhat depending on the state they practice in. In most cases, they both can see patients, diagnose and treat medical problems, and prescribe medications. However, nurse practitioners can practice independently whereas physician assistants always need to work with a supervising physician. For more information on these 2 roles you can check http://physicianassistantsguide.com/physician-assistant-faq/physician-assistant-vs-nurse-practitioner/
Key words: metastatic pancreatic cancer, pain management
hi,
My mom is 60 and she was just diagnost with pancreotic cancer.The doctor have give her no teraphy.She have a lot off pain.My question is haw to control thet pain and can we do somthing to stop furder spreading bicouse cancer is allready spread to liver and lungs.Apologies for my eanglish ,Im from Macedonia .
Dear Slagjana,
It must be very difficult for you and your mom right now. Unfortunately, there isn't any treatment that can stop the cancer from spreading at this point. Perhaps that's why the doctor did not offer her any therapy. Instead, you might consider hospice care for her. Hospice is for people in the last stage of an illness and treats pain and other symptoms, provides support, and works for the best quality of life for the patient and family. You can call any local hospice to get more information or ask her doctor to order that for her. Her pain can be treated so, even if you don't get hospice, I would talk to her doctor about medicines for that. My thoughts are with you and I hope she can be more comfortable, Marian
Key words: pain after surgery
I had distal pancreatic surgery in August 2011 to remove a baseball size tumor, about 30% of my pancreas, and my spleen. I started chemo (Gemzar only) on October 4. I have been having pain in my lower left side for weeks now, it keeps me awake and is very uncomfortable during the day. My oncologist thought I was still going through the healing process from surgery but I think after three months it should get better, not worse. Could it be from of the chemo?
Thanks
Dear Tom,
I’m sorry to hear you are having pain. Unfortunately, sometimes people have pain for months after this kind of surgery. If the pain started after the surgery or is getting worse, you should continue to keep your oncologist updated about it as chemotherapy normally does not cause pain. I would also recommend working with your oncologist to manage the pain if it is affecting your life or activities. Pain can interfere with healing by causing stress to the body, and so should be treated if so. I hope you at least get some relief if not answers to what’s causing it. Best wishes, Marian
Key words: family predisposition to cancer, getting second opinion
My sister-in-law, who is in her early 40's, was just diagnosed with colon AND pancreatic cancer after extensive testing and the removal of a portion of her colon. The pancreatic cancer has been identified as stage 4. This comes just 3 months after her brother was diagnosed with stomach cancer. Both decided to be treated by our local hospital, which does not specialize in cancer. My brother-in-law has recently completed chemotherapy after having his stomach removed. He is doing well, but doctors found a blood clot in his leg and he is extremely distressed over his sister's illness, so he was again hospitalized.
My sister-in-law underwent genetic testing and all 4 of her remaining healthy siblings are in the process of scheduling coloscopies and endoscopies. We are still awaiting the genetic testing results, but they are all trying to be proactive, as this is all such a shock to the family. I find it interesting and quite frightening on the JHU website where it states "Hereditary Non-polyposis Colorectal Cancer (HNPCC) is characterized by the inherited predisposition to develop colon cancer, endometrial (uterine) cancer, stomach cancer and ovarian cancer. Patients with HNPCC may also have an increased risk of developing pancreas cancer."
The local hospital oncologist says her case is one-in-a-million. Because of this, several of her relatives and friends (including myself) have been trying to get my sister-in-law to seek a second opinion or at least seek treatment at an established "cancer hospital." She is very comfortable where she is and likes her doctors, who seem very nice. However, each time bad news was delivered, the doctors waited until my sister-in-law was alone. She is single and has no kids, but she has a million friends and a very large family. We have been with her almost around the clock since she was admitted 3 weeks ago. Do you find it odd that the doctors wait until no one else is nearby for support? Also, do you have any advice as to how we can gently persuade her to consult another oncologist at a more qualified facility? And finally, do you believe there is anything else the family members should be doing at this time?
Any help you can provide would be wonderful and very much appreciated.
Thank you.
Dear Lori,
This is certainly a lot of bad news for one family and it’s good that you’re trying to help her. Let me try to answer your questions:
1. Family predisposition- it is indeed true that some types of cancer run in families and so it’s good that other family members are having themselves tested. There is a family registry for pancreatic cancer at Johns Hopkins and they may be interested in your family given this unfortunate history. The link is http://pathology.jhu.edu/pc/nfptr/who.php
2. Giving bad news to her alone- Ideally, the medical team would have asked her who she wanted present before giving her any bad news. If not, they may have wanted to talk to her alone since they are required to keep patient information confidential. I’m sorry if it would have been better for you all to be there, but it sounds like you are now and giving her support.
3. Second opinion- This is tricky since your sister-in-law needs to be treated where she feels most comfortable. Given that she has just gotten this news, you may want to give her a little time and then possibly bring up getting a second opinion. I would suggest, however, that you not gently persuade her of anything. This is her health, her life, and she needs your support for whatever decisions she makes. In the meantime you may try contacting a Pancreatic Action Network patient liaison associate at http://pancan.org/section_facing_pancreatic_cancer/oneonone_support/ for information on other pancreatic cancer treatment centers and possible clinical trials. Unfortunately, none of the treatment for stage 4 will cure it and, although it might add some time to her life, will also come with side effects to consider.
4. What you can do- It sounds like you should all prepare to help make her remaining time as comfortable as possible. If her hospital has a palliative care service I would suggest asking her medical team to consult them, as there are many opportunities here to support her, her brother, and the rest of the family. She may even be a candidate for hospice and that could be one of the options to consider at the appropriate time.
Please let me know if I can be of any further help. Take care, Marian
HI Marian- my 57 yr old sister has given been given very bad news regarding PC. She has been going to the doctor for 10 months now and just got diagnosed with PC. She went because of symptoms: abdominal pain, vomiting for no reason, low energy and weight loss! CT in May stated pseudocyst in pancreas, Aug CT described metastatic disease with liver involvement. I would have hoped that even if CT said 'cyst' the other symptoms should not have been ignored. She has been told that even if correctly diagnosed in May the same outcome would apply! Do you think if chemotherapy was started in May she could have had a better outcome?? She is now stage 4 and is offered chemo to "try and slow the growth down to buy her some more time"...chemo has not started, your thoughts?
I am so sorry to hear about this. It must be very upsetting for all of you to get this bad news after months of testing. However, pancreatic cancer is not easy to diagnose. That's one of the reasons it is so dangerous. CAT scans (CT) can't always show exactly what is going on and her symptoms, although concerning, were not unique to pancreatic cancer.
Unfortunately, the reality is that even if they had discovered the cancer in May, it is unlikely if chemotherapy would have bought her much more time. There were likely cancer cells already in her liver then that couldn’t be seen yet on the CT. This is a very aggressive cancer and chemotherapy usually cannot extend people's lives by more than a few months. And it comes with its own side effects, which can sometimes make the remaining time uncomfortable. I can appreciate how upset and angry you all must be, but I would encourage you now to try to focus on how to make the best of her remaining time.
As she is at stage 4, that time is very limited (see link for prognosis by stage http://www.cancer.org/Cancer/PancreaticCancer/DetailedGuide/pancreatic-cancer-survival-rates. There you will see that survival for even the earliest stage is not good and drops significantly from Stage 2 on.) She may even want to consider foregoing chemotherapy and instead explore palliative care or hospice to give her the best quality of life for however much time she has left. In one study, people getting hospice care for pancreatic cancer lived a month longer than those who didn't (http://1.usa.gov/o4Ujrx ).
It is wonderful that you care so much for her and she will need your help and support more than ever now. Focus on her and her needs and this precious time might be more valuable than you ever imagined. My heart goes out to both of you, Marian
Key Words: Neuroendocrine Tumor
Someone recently emailed me this question and allowed me to post it here: "I was diagnosed with a 4 cm. neuroendocrine tumor, on the head of the pancreas this spring and had a laparoscopic Whipple surgery. The surgery went very well. My doctor said that I was a “success story” and that I am cured. They took some lymph nodes and there was a trace of cancer in only one of those. They were able to get clear margins and saw no evidence of any cancer anywhere else.
I was feeling pretty good about being “cured” until Steve Jobs died last week. I have read that he had a similar type of tumor and that he also was told he was cured. I know the doctors can only tell me what is true for now. And right now, as far as we know, I am cancer free. But I still feel worried and upset by this news. Am I right to be concerned? Does this type of cancer tend to come back? Thanks for your help"
I’m glad that you had successful surgery, that can be a challenging operation. I can appreciate, however, that all the coverage about Steve Jobs makes you wonder about your future. It must make your good news about a cure bittersweet. However, we don’t know the specifics about his case and everyone’s case is different. You got the right treatment and I would check with your oncology team to see what kind of follow up they recommend and what they think the possibility is that your cancer could come back.
It may be hard to keep your spirits up between check-ups, but I would recommend that you focus on maintaining your health and doings things to make yourself strong, like eating well, getting enough rest, and regular exercise. These will help your spirits and are good for anyone to do! My best wishes that you continue to get good news about the cancer being gone in the future, Marian
Key words: weakness
I have PC for 11months now , and fighting hard so far I'm not able to have the whipple done because of a vessel and the portal vein my question is my muscles seem to be weak , in my legs , my lower back and having a hard time to standing up once I'm up then I can move and I'm always on the move can PC cause these problems and what can I do to improve this problem?
I’m sorry to hear about this problem and am not sure what the cause is. You don’t say if you have lost a lot of weight but, if so, you may have lost some of the muscle mass in your lower body, which could cause weakness. Have you had any chemotherapy? This can sometimes affect the nerves in ones extremities, which might lead to weakness.
Pancreatic cancer on its own does not typically cause weakness in just one part of the body, so I would follow up with your medical team to see what they think. Physical therapy can also sometimes be helpful to strengthen muscles so that you can continue your daily activities. A physical or occupational therapist can also suggest more efficient ways to do things like standing up. I wish you all the best.
Glad to hear back from you sorry I have not stated that I did have chemotherapy, target radiation and now I'm on a break from chemotherapy my cancer is stable and the tumor is shrinking , I do see a doctor where I take my chemo. I also lost 43lbs one year ago when I started with my adcnocarcinoma cancer so I may have lost a lot of muscle.The most pain is in my lower back and go to the legs , well thank you have a great day.
Key words: uncoordinated care
Someone recently emailed me this question and gave me permission to post it: "My mother has pancreatic cancer, a totally chaotic, fractured team...and no "point person." She's not in pain and is healing from surgery...still trying to find an oncologist for the next steps. But she needs a "point person" to sort of "run the show". She's super depressed, won't eat and won't walk and just wants to sit and do nothing. She thinks she's at end stage (which she's not...she's stage 3 which the doctor told her but she forgets) and she's feeling "lost”.
So....what do we do in this situation? She doesn't even really have a primary care person...she was between primary care folks when she was diagnosed, and the last one she had knows pretty much nothing about cancer."
Fractured or disjointed care is a big problem with our current healthcare system. I think you need to help her find the right resources and I would start with a primary care provider. If the one she has isn’t great, I would suggest looking for a geriatrician or geriatric nurse practitioner. They will know something about cancer, since the incidence is higher in the elderly population, but, more importantly, they will have a more holistic perspective in working with your mother. It sounds like her issues at the moment are less physical and more emotional and people trained in geriatrics are experts at addressing that. They can either coordinate her care or help you find a case manager who might be able to do so.
In regard to her sense of being at the end stage: it is difficult to know if her spirits are just down because she’s had surgery or because stage 3 is not good news. She is not curable at that stage, see link to the American Cancer Society webpage with information on survival by stage: http://www.cancer.org/Cancer/PancreaticCancer/DetailedGuide/pancreatic-cancer-survival-rates . So, addressing her sadness is important as she may feel the need to put her life in order and make emotional preparations for her eventual death from this illness. Hopefully the right support resources will be able to help you and her with that.
Key words: increased abdominal pain
Someone recently emailed me the following and gave me permission to share it here: My husband was diagnosed with Stage III PC. He has been dealing with a biliary catheter which they put in because of his jaundice. It has been changed twice and then he had a stent put in. He has always had pain...he says it’s an uncomfortable feeling or pressure in his lower abdomen area and rates the pain on a 2-4/10 level, although this past weekend the pain was 5-7/10. He’s on several medications but they are not working and the pain medicine works only sometimes. He’s lost a total of 70 lbs since all this started, but he’s lost 10 lb in just the last week. He’s only eating oatmeal, eggs, soup and sometimes fish. No appetite and can’t sleep at all. Naps all day and gets 2 hr naps at night. He’s also developed ascites.
We are waiting to hear about possible radiation and surgery, but I am just so concerned about his constant abdominal pain and don’t know what more I can do. Any suggestions to combat this pain that he is experiencing in his abdominal area?
Whenever someone’s pain increases like this it should be checked out. Has the pain increased since he has developed ascites? That fluid collecting in his abdomen could be one reason the pain is worse or a contributor to the pain. Have you called his GI or oncology team to let them know of this latest change? There are stronger medications or doses that can be tried to control the pain but, ideally, they need to see him to try to figure out why the pain is suddenly worse.
Also, his loss of appetite and weight over the past few days is concerning and another reason he should be checked out. Again, these symptoms could be related to the ascites, but may also be caused by something else.
I hope his doctors can address these issues as they may interfere with possible future radiation or surgery if he becomes too weak/debilitated to tolerate those treatments. He may also benefit from referral to a palliative care resource in your area to help manage these symptoms so that he is strong enough to tolerate future treatment. I wish you all the best, Marian
Key words: nutrition problems with pancreatic cancer
Hi Marion.
I have a dual diagnosis of pan can (stage 2b) and hepatitis c. Nutients/food is a challenge, since the two conditions have different exclusions. IM stuck as to what to eat and have lost more then 25 per cent body weight with what seems like cachexia. Eating and fat seems out because of digestive problems. Eating any gluten is also out -- as well as meat of any kind. Beans cause outlandish gas. I can't identify gh calories to effect the muscle wasting. Any ideas for me?
Dear Linda,
What a challenging situation! Pancreatic cancer can affect how the GI system works and then the hepatitis C affects the liver, which helps break down fats and carbohydrates. Cachexia is the muscle wasting that you can see with people with cancer or other serious illnesses.
My suggestion is that you find a professional nutritionist to work with you on this. I have had very good experience with them in the past for people with pancreatic cancer who are having problems digesting/absorbing food.
You may find one through your oncologist or primary care provider or have to contact one on your own. Here's a link to the public page of the American Dietetic Association (http://www.eatright.org/public/) that has a "find a registered dietitian" link on the upper right.
There may be some kind of supplemental liquid nutrition combined with pancreatic enzymes that would work for you, but I would talk to an expert for guidance about that. Best wishes! Marian
Key words: surgery for elderly person with pancreatic cancer?
Someone recently emailed me and gave me permission to share this question: My 83 yr old mom was recently diagnosed with pancreatic cancer and surgery appears to be an option. I'm confused, though, by the statistics. It seems that both surgery and chemo/radiation have about the same prognosis as far as life expectancy. So with all the pain and risk of surgery, what is the advantage? her main concern is quality of life...any thoughts?
Surgery theoretically can cure pancreatic cancer, but only if it is caught at the very earliest stage, when the cancer is confined to just the pancreas. So, I would ask the surgeon if they feel that surgery for her will cure her cancer. If they say no, then you are correct, it is a major procedure that can come with significant complications, especially for someone her age. Most patients who get the surgery are also recommended to get chemo and possibly radiation, meaning that they may go through all 3 challenging treatments. So, if her concern is quality of life and they tell her she may not be cured, then maybe the surgery and other treatments aren’t in line with her quality of life goals.
Key words: cummulative effects of chemotherapy?
My husband just finished his 4th treatment of Cisplatin/Gemzar for stage IV PC on Friday. This time it hit him much harder (and longer) as far as the fatigue and "flu like symptoms" that we were told to expect. He had no fever (I checked), drank lots of water, and started eating somewhat yesterday. A little better again today. I have heard that the effects of chemo can be "cummulative" .. Is it that common to have it get worse with each treatment?
It is unfortunately not uncommon for the side effects of chemotherapy to increase over time, and I’m sorry if he was hit harder after this last round. The reason for that is that the chemotherapy drugs, in trying to kill the cancer cells, are also killing normal cells. This causes stress to the body and side effects, which can increase over time as more normal cells are killed. See the following link for more information on chemotherapy and side effects: http://www.cancer.gov/cancertopics/coping/chemotherapy-and-you/page5
It is good that you are checking his temperature and encouraging him to take fluids and eat, if possible. If he starts to feel worse, or develops additional problems, please let his oncology team know as there are many things we can do to help patients deal with the side effects of chemotherapy. I wish you both all the best, Marian
Key words: link to other posts
Here's a link to a previous version of this service. You'll find more questions and answers about pancreatic cancer symptoms and issues there: http://bit.ly/qw2iCh. Marian Grant
Key words: timing of vaccine for pancreatic cancer
Hi Marian. Do you think the vaccine is going to be ready in the next 5 years or is more than 10 closer to what we should expect?
I do not work in that area, but it is always difficult to predict how long something like a new vaccine will take to be ready for broad use. I would suggest continuing to monitor the Hopkins website at http://bit.ly/hgFzEH or the PanCan website at http://bit.ly/n07xlA for more information. Marian
Key words: High blood sugar
Hi! My brother had pancreatic cancer several years ago and had the whipple procedure done. Now he has a spot on his liver that is yet to be dx as cancer could you tell me if this would cause his blood sugars to run high? they aren't the are with normal ranges but he is experiencing weight lost and he goes to his cancer specialist soon I am a nurse and I was just wondering if that would affect his sugars? thank you!
Dear Cindy,
I'm sorry to hear that your brother is having problems now. The liver plays a role in releasing glucose into the body and so, if it is not working properly, blood sugar levels can be higher than normal. That and the fact that he is also losing weight are cause for concern and so I am glad he will be seeing his cancer specialist soon. It sounds like you are being both a good sister and a good nurse to him and I'm sure he appreciates your help and concern. Best of luck to the both of you, Marian
Key words: Vaccine for pancreatic cancer?
This is the most growing disease that spread all over the world today and still no vaccine to cure this illness. All we can do is to have a healthy foods to avoid cancer.
Actually, the incidence of pancreatic cancer is not increasing, but you are right that there is not yet a vaccine to cure it, although work on that continues. (Here's a link for an update on the vaccine http://www.hopkinsmedicine.org/kimmel_cancer_center/centers/pancreatic_cancer/treatments/pancreatic_cancer_vaccine.html).
The modifiable risk factors for pancreatic cancer include smoking and obesity. The evidence on diet suggests that diets high in meats, cholesterol, fried foods and nitrosamines may increase the risk of developing pancreatic cancer. See the Johns Hopkins webpage on causes of pancreatic cancer http://www.hopkinsmedicine.org/kimmel_cancer_center/centers/pancreatic_cancer/pancreatic_cancer/ for more information. In the meantime, eating healthy foods and getting exercise is the right thing to do for many reasons!
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