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Index of drugs with clickable links for individuals/patients who needs financial prescription assistance. For the insured, uninsured, and everyone in-between. The links provide information on where assistance may be obtained. Many of these drugs will be familiar to those of you who have received or are receiving treatment for CC. The list that I have provided is only a few of the drugs included. View the link to see the full list.
http://oncpracticemanagement.com/pssguide2016/index-by-drug/
Neupogen
Opdivo
Emend (Aprepitant)
Gemzar
Keytruda
Neulasta
Taxotere
Velcade
Tarceva
and MANY more
Karen, RN, CHPN
Hello everyone on the discussion board!
I wanted to put this link out here for those who may be interested.
https://www.canceradvocacy.org/cancer-advocacy/survivor-stories/share-your-survivor-story/
Share your story with the National Coalition for Cancer Survivorship!
This link allows you to input information on your own personal story of survivorship. I know that many of you may not think of yourselves as “survivors”, but you are because you are working to find the treatments that will keep cancer at bay.
More and more stories of individuals living with cholangiocarcinoma beyond the initial time frame given by your physicians is becoming a reality, and will continue to become a reality. This is not only the case with cholangiocarcinoma, but with many other cancers as well.
Many cancers are being treated as a chronic illness and not a terminal illness, and the voices of those living with a chronically managed disease should be heard, because it is YOU and your families that help to change the way in which cancer patients are treated.
-Karen
You’re welcome, Scott!
Good luck with the port placement, and happy St. Paddy’s day to you too!
-Karen
Hi Scott!
Oh I am so sorry to hear that your PICC is giving you trouble. I know that they can be kind of a hassle if you are a very active person. I understand your frustration….don’t lift anything on this arm, don’t get it wet, be careful that you don’t bump it with anything, etc. etc. Then on top of it, you have to have the dressings changed every 7 days and get it flushed. I would probably be a down in the dumps about it too.
PICCs do serve a very important role in intravenous therapy, but if you are going to be having very long term therapy, a port a cath is a better option in my opinion.Although I have not personally experienced having a port, the port care that I have given it fairly straight forward. Ports will be placed under your skin and you will have tubing going into a major vessel to your heart. All of this will be internal other than the doorbell type apparatus that is able to be felt under the skin of your upper chest.
Here is a link to a post I did awhile ago on ports.
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=13800
After your outpatient procedure to have the port placed, you will have to keep the new surgical site dry for a bit to allow the skin to heal. After healing has occurred, there will be nothing outside of your skin. You will only have two minimal surgical scars. You will be able to swim, shower, bike, and do your normal activities, but I would probably be careful with carrying the wood against your chest on that side. I know that when I stack wood I hold the logs up to my chest and it can get fairly heavy! So my suggestion would be to make more log carrying/stacking trips.
I should mention though that you will still have to periodically have the port “accessed” and “flushed” just as with the PICC. This needs to occur at least once a month if the port is not actively being used.
If you have any more questions, feel free to ask and I will answer them as best that I can!
-Karen, RN, CHPN
Hello Sherry!
Marion asked if I would comment on this thread re: Peripheral neuropathy from chemotherapy, or the numbness/tingling, pain, loss of sensation that occurs with nerve damage from chemotherapy, diabetes, etc.
Here is some info for you:
CIPN (chemotherapy induced peripheral neuropathy) is a common occurrence with different types of chemotherapy medications such as the platinum agents (Oxaliplatin, Carboplatin, Cisplatin, etc.) taxanes (Abraxane/Paclitaxel, etc.). and others.
Dose reduction of the chemo agent can and may be ordered to reduce the severity of neuropathy, or the agent may be stopped all-together.
From what I know, neuropathy may improve over time but can definitely persist (for Abraxane improvement MAY be seen beginning around 3 months post treatment per the National Comprehensive Cancer Network [NCCN] but is also treated with medications such as neurontin/gabapentin, tricyclic antidepressants (amitriptyline and others), pain medications,or lidocaine patches (although I do not really see this).
CIPN is a side effect that seriously impacts quality of life and unfortunately, does not have many good treatment options and persists for many individuals.
I have read about clinical trials using Glutamine
https://clinicaltrials.gov/ct2/show/NCT02215083 and there are also some actual publications on this treatment.Here is something from Dana-Farber as well:
http://www.dana-farber.org/Health-Library/Alleviating-Peripheral-Neuropathy-Symptoms.aspxThe Oncology Nursing Society has some great information here: https://www.ons.org/practice-resources/pep/peripheral-neuropathy
This link gives you information on scientifically proven methods of managing CIPN, treatments that MAY be helpful, treatments that are highly unlikely to be helpful, and treatments that should not be used.For the rash, cream with benadryl may help, or emollient lotions like bag-balm, or another unscented lotion.
I would love to hear more about your husband’s acupuncture treatments! I think it is wonderful to try other methods of healing.
-Karen RN, CHPN
Hi Donna,
Not to negate the advice that Lainy has given you, but here is another thought to help out:
As you are on Xeloda and Gemzar…..are your physicians routinely checking your lab tests? You could very well be anemic.
Anemia will also give you shortness of breath, fatigue, weakness, increased pulse rate, etc. etc. You stated that you have had some sensitivity to these medications, so you may just have a low hemoglobin and hematocrit, aka, anemia.
Keep us posted!
KarenD, RN, CHPNhttp://www.cityofhope.org/blog/cancer-pain-tips
BREAKTHROUGHS
7 TIPS FOR MANAGING CANCER PAIN: FIRST, CONTROL IT EARLY
September 4, 2014 | by Nicole White RSS“There’s more to cancer care than simply helping patients survive. There’s more to cancer treatment than simple survival.
Cancer patients should report their pain to their caregivers, and enlist their doctors to help them manage it. Pain does not have to be part of daily life, even during cancer treatment, says City of Hope’s Betty Ferrell and other experts in palliative care.
Constant pain should not be part of conquering cancer, insists Betty Ferrell, Ph.D., R.N., director of nursing research and education at City of Hope. She wants patients and caregivers alike to understand, and act on, this principle.Ferrell, an international expert in palliative care, and her colleagues have spent years investigating pain management and the barriers that prevent patients from receiving the help and medication needed to manage their pain. Overcoming these barriers starts with understanding that pain management is vital. Even when people are fighting cancer, their day-to-day lives should not hampered by physical pain.
“Patients and caregivers need to understand that pain is important,” she said. “Pain has a tremendous impact on quality of life. There is an urgency. If pain is not controlled, their lives are out of control.”
Patients and their caregivers must know how to assess and talk about pain, Ferrell said. She and other experts in palliative care are committed to helping patients and caregivers address fears and misconceptions about pain medication and management.
“We can have the most effective drugs in the world, but if people aren’t taking them, they’re not going to help,” Ferrell said.
Of the seven tips on managing cancer pain, two are crucial.
1. Control pain before it becomes severe.
2. As a cancer patient, you deserve the best pain relief.
Other tips for cancer patients experiencing pain:
3. Quantify your pain. Rate pain on a 0 to 10 scale, with zero being no pain and 10 being the worst pain. Track when the pain started, what makes it better or worse, where it’s located and how long it lasts. Be able to describe the kind of pain sharp: shooting, dull or burning. The description will help caregivers treat it effectively.
4. Call your nurse or doctor about pain. Do not hesitate to reach out to your caregiver if your pain is new, if it is getting worse or if it is keeping you from your everyday activities.
5. Remember that you have many treatment options. Doctors have many pain-controlling medicines at their disposal, and they can be given in many ways. If one doesn’t work well, patients and doctors can try another kind.
6. Do not let fear of addiction prevent you from taking medication to manage pain. Ferrell says a common fear patients and their caregivers have is that they will become addicted to their pain medication. She stresses that patients need to understand the difference between normal physical reactions to medication and drug addiction.
For example, tolerance to a drug – requiring an increase in dosage when the body adjusts to the current medication – is normal and is not addiction. Physical dependence is also not addiction. Anyone taking opioids (morphine-like medicines that are commonly used for pain) is likely to become physically dependent for a period time. If you stop the opioid abruptly, you will experience withdrawal symptoms, such as shaking, agitation, fear and chills. This is why it’s important not to stop the medication abruptly and to taper off the dosage.
Normal, physical reactions to necessary pain medication are different from a psychological addiction, Ferrell says. Addicts crave drugs to satisfy physical, emotional and psychological needs – not for pain relief.
7. Follow directions when taking pain medication. Communicate with your doctors, nurses and caregivers when you have questions about how to take your medication, encounter problems getting your medicine, feel the medicine doesn’t work, experience side effects, or have concerns or questions about using pain medication.
**
Caregivers should also note that sometimes their loved one will be reluctant to report their pain.
“People will often say ‘I have cancer, so of course I have pain,’” Ferrell said. “We have to constantly emphasize that there is much that can be done.”
The hopeful message of Ferrell’s research: Pain can be managed, and these barriers can be overcome. Misconceptions can be dispelled through teaching and support.
“So often, the public, patients, even medical professionals only think about pain in advanced disease,” Ferrell said. “People are doing so well surviving cancer, and many survivors have ongoing pain problems.”
Palliative care – care that focuses on quality-of-life issues – isn’t only for people with advanced disease. All patients and survivors – and their caregivers – should have care plans and survivorship plans that emphasize quality of life, and that includes a daily life without physical pain.
Cancer patients and survivors do not have to settle, and should not hesitate to enlist their doctors, nurses, a palliative care specialist and pain specialists to get them the treatment they need to stop pain.”
Annie,
I have read through the study that you posted, and it is a very interesting study. Thank you for sharing it with all of us!
I so wish that I could give you an answer that would be of help to you, but I just do not have one. I remember very well feeling frustrated with the lack of clear diagnostic information when my mother in law was diagnosed. I felt I should have seen that something was wrong, that her physicians must have missed something, that there had to have been some sign that she had cancer.
Unfortunately, there are currently no early diagnostic tests, tumor markers, or anything of the sort that would flag someone as having developed cholangiocarcinoma…or at least none that I know of. I must say that I feel if there were a clear association between gallstones/cholecystectomy and bile duct cancer, that the incidence rate would be rising exponentially. Unfortunately, the current evidence does not strongly suggest that this is the case. But this is just what I know, and I am certainly not an oncologist or a researcher. I am however, someone who has been where you are, and I too continue to look for information that may lead me to a greater understanding of this disease.
It is important to know as well that researchers have taken notice of this disease within the last few years. Work is diligently being done to discover why this disease develops, and how it can be treated.
Again, I am very sorry that I cannot give you a clearer answer.
-Karen
Hello Tony,
I am so sorry to hear that you wife is experiencing pain such as you described. I will ask you just a few questions about her pain, and will also suggest that you keep in close contact with her oncologist or a palliative care physician as they are skilled in cancer pain control.
In the U.S. we ask individuals to rate their pain on a 0-10 scale. 0 is no pain, and 10 is the worst pain imaginable. How would she score herself on this scale? Is her pain interfering with her regular daily activities? Is she experiencing any new loss of sensation, numbness of tingling in her feet/toes/legs? Is she having bowel of bladder control issues that are new, or loss of balance?
Has she taken any opioids like morphine before? Physicians generally follow an analgesic ladder to treat pain. She could ask the oncologist if taking an NSAID such as ibuprofen would be alright, or perhaps Tylenol if her liver functions are fine. If her pain level is anywhere above a 4-5 on that 0-10 scale though, she should seek assistance from the physician to prescribe a short acting opioid. It is best to treat her pain earlier rather than later. It is much more difficult to control pain when it has become severe, and as research has shown, early pain control will decrease the occurrence of nerve sprouting and further increased pain episodes.
I hope this will help you both! Increasing levels of pain significantly impacts a persons quality of life, so please do not hesitate to insist on aggressive pain management from her providers.
Karen, RN, CHPN
Hello Tony,
I am so sorry to hear that your wife is experiencing pain such as you described. I will ask you just a few questions about her pain, and will also suggest that you keep in close contact with her oncologist or a palliative care physician as they are skilled in cancer pain control.
In the U.S. we ask individuals to rate their pain on a 0-10 scale. 0 is no pain, and 10 is the worst pain imaginable. How would she score herself on this scale? Is her pain interfering with her regular daily activities? Is she experiencing any new loss of sensation, numbness or tingling in her feet/toes/legs? Is she having bowel or bladder control issues that are new, or loss of balance?
Has she taken any opioids like morphine before? Physicians generally follow an analgesic ladder to treat pain. She could ask the oncologist if taking an NSAID such as ibuprofen would be alright, or perhaps Tylenol (or Paracetamol in Europe) if her liver functions are fine. If her pain level is anywhere above a 4-5 on that 0-10 scale though, she should seek assistance from the physician to prescribe a short acting opioid. It is best to treat her pain earlier rather than later. It is much more difficult to control pain when it has become severe, and as research has shown, early pain control will decrease the occurrence of nerve sprouting and further increased pain episodes.
I hope this will help you both! Increasing levels of pain significantly impacts a persons quality of life, so please do not hesitate to insist on aggressive pain management from her providers.
Karen, RN, CHPN
Dmr1965,
I’m sorry to hear of the problems that you have been having with your biliary drain, pain, and constipation. This must be so very frustrating for you!
My name is Karen, and I am an oncology nurse who is involved with the foundation doing various activities. Marion contacted me about your specific posting to see if I could add any information for you.
As far as your drain goes, I have cared for people with external drains that are capped and or attached to a drainage bag. I have always flushed drains at least once a day with 5-10 ml of saline to assess patency and reduce the chances for occlusion.
It is not uncommon for the biliary drains to leak at the insertion site, and I’ve had to do many dressing changes on people with this issue. Have you or do you ever attach your drain to a bag for drainage? Have you tried this to see if leakage at the site of insertion subsides?
Are you bilirubin levels checked often, and are you free from jaundice?You mentioned as well, that you suffer from abdominal pain, bloating, and so forth that it managed with narcotics. Has your oncologist or gastroenterologist ever suggested enzyme replacement? Here is a link to an old thread on digestive enzymes: http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=9106
I will do some more searching around for you for reputable, peer-reviewed articles that may be of help for your stent leakage, or pain issues as well as searching for drain care from the major cancer centers. My personal experience though, as I mentioned, is that leakage is bothersome but not uncommon.
-Karen
NuclearNikki,
I read through both of your posts about your dad, and I am so very sorry that he has been diagnosed, and to hear of the struggles he and your family are having. I understand completely, as my mother in law (who was 61 when she was diagnosed and passed away from cholangiocarcinoma) experienced a steady decline in cognition as well. It was something that she noticed, but she just didn’t understand what was happening and it was very hard. I feel that her very first symptoms of this cancer were periods of forgetfulness, depression, “fogginess”, etc. a full year or more prior to diagnosis. These symptoms did progress, even wax and wane at times after her treatment started and she became more ill.
Your dad may also be experiencing depression. Men may exhibit depressive symptoms differently than women…..such as the “grumpiness” you mentioned.Some of the symptoms you are describing in your dad may be due to the chemotherapy as well, which can cause something that those who get chemo, or give chemo call “chemo-brain”. It’s forgetfulness, fatigue, a lack of mental sharpness, that sort of thing. It should pass after he has a bit of a chemo break.
You said your dad also had tumors in his lungs, and outside of his liver near his stomach. I know professionally as an oncology nurse, I have seen paraneoplastic type symptoms occur in those who have cancer involvement in the lungs, liver, and peritoneal cavity (in the abdomen).Now to try to explain what your dad’s oncologist is talking about with having to stop the Gem/Cis due to toxicity…..chemotherapy drugs do often adversely affect the recipient’s body. Gemzar can cause shortness of breath (dyspnea), or a chronic cough that worsens. It can also affect the liver and kidneys, although you said his liver/kidney function was ok.
As for Cisplatin, this chemotherapy drug is from the platinum family of chemo drugs. It most definitely affects the kidneys, so I am glad to hear that your dad’s kidney function is ok. It can also be neurotoxic causing symptoms (which may be permanent) such as numbness and tingling of the hands/feet, decreased balance, loss of strength, muscle cramps, pain,etc. These symptoms will be seen in many people receiving Cisplatin, but especially when the person has received what we call a cumulative dose beyond 400 mg/m2. (dosing of chemotherapy drugs are done based on weight, and body surface area, and other factors). Your dad may be very close, or over that dose limit leading to the oncologist stopping treatment at this time because more of the cisplatin would hurt your dad.The nurses and the oncologist may have noticed symptoms too that indicate your dad is experiencing toxicity from these drugs, and deemed it necessary to stop at this time as more of this chemo would cause more damage which would seriously impact quality of life for your dad. He may also have blood counts that are not improving quickly after treatments, such as white blood cell (WBC) counts, platelets, hemoglobin or hematocrit. If a person receiving chemo has low WBCs, they are very prone to developing dangerous infections. If they have low platelets (especially from the cisplatin) they may bleed and not be able to clot like normal. Low hemoglobin and hematocrit may cause him to be short of breath, fatigued, pale, and so on.
I cannot say for sure the toxicity that your oncologist is speaking of, but I’m guessing it’s the cumulative dose of the Cisplatin. The best thing to do, of course, is to ask him/her, or the infusion nurses. They are there to help, and as Lainy mentioned, maybe you (or another family member) should offer to go along to the next visit. Write questions down prior to the visit so that you are organized and prepared. Demand time with the doctor, your dad’s time is valuable too!
It’s great though to hear that your dad has an appointment for a second opinion/clinical trial. I wish him well and hope he is able to be enrolled!
Please keep us posted!
-Karen D.
Hi 6gonzalez6,
There are many individuals on this discussion board with personal experience related to port-a-caths that may be able to give you more detailed info.
From my experience as an oncology nurse, here are some brief answers to your questions:
1. What has worked for you to sooth the area before treatment?
Nurses can apply a cream to the site of the port-a-cath (which is implanted under the skin) prior to accessing the port with a needle. (Accessing is when a huber needle is inserted into the hard part of the port under the skin). This cream is called Emla cream.
2. Any possible issues or things to look for?
The main issues to watch for are signs of symptoms of infection at the site of the implanted port. A new port will have two incision areas that are generally closed with some internal sutures and dermabond, or a type of skin super glue. Signs of infection at the site would be: redness, swelling, pain, or drainage from the incision that is profuse, yellow/white/green. Also after treatment of blood draws when the needle is inserted into the port, any swelling around the needle is cause for concern. A lack of blood return (the ability of the nurse to draw blood back into a syringe from the port) or difficulty flushing saline or fluid into the port when it is accessed should be investigated.
3. Any special care?
When the port-a-cath has a needle in it, it will be covered with a sticky clear dressing that should be kept dry. After the site has healed, there will be two small scars on the chest and slightly above the port insertion site and no special care will be needed.
4. Does it ever need to be changed?
The port a cath will not have a needle in it unless it is being used. That needle is changed (along with the dressing) every 7 days. The caps on the tubing are to be changed every time blood is drawn from the port. Your wife will perhaps remain accessed if she is getting chemo in an outpatient infusion department, and she is coming for a number of days. Sometimes the nurses will leave the needle in, and remove it a few days later after consecutive days of chemo. They may also remove it after the infusion, then re-access the next day.
I hope this helps!!!
Here is a helpful link for you as well along with a picture of what the new port a cath sites looks like right after the procedure to place it.
-KarenD
