Category: Nurse’s Corner
Comparing Your Mesothelioma with Another Patient’s May Not be Helpful
On Black Friday a lot of people shop, but only after they study the ads and plan out carefully where they are going and what they will buy. For some, it is a fun tradition that kicks off the start of their holiday shopping. For others, it is the comparison shopping and the hunt of a bargain that drives them. Mesothelioma patients often prepare for their treatment in much the same way – studying articles, stories and their treatment options. However, many also compare their mesothelioma with other patients.
Recently, I heard two mesothelioma patients discussing their experiences. Knowing that both had different types of mesothelioma, had different therapy, and were at different stages in their journey, I was surprised at what they had taken away from their experience so far. It is understandable that people want to compare how they are progressing with someone else that also has mesothelioma, but it is important to keep in mind that everyone’s case is different.
There are many studies that support the importance of support groups in dealing with life-threatening diseases. The groups can provide a lifeline and much needed hope to the patient, family, and caregivers during this time. Many survivors of mesothelioma have had more of a positive impact on patients and families than just about anything or anyone else.
It is important to remember that mesothelioma comes in different sizes and shapes. The location of the primary site of the tumor can be pleural (lung), the most common making up around 85% of malignant mesotheliomas; peritoneal (abdomen) comprising around 5% of tumors; and pericardial and testicular, both very rare, making up the other potential cancer sites. Once the location, is identified the type is tested for either epithelial, sarcomatoid or mixed. Once identified, the disease is staged by biopsy of the surrounding lymph nodes. From there the results are compiled and the best treatment is suggested. Some possibilities include chemotherapy, surgery, radiation, complementary therapy, or alternative therapy.
Like the bargains on Black Friday, remember that your specific mesothelioma is different than someone else’s, and that different people respond differently to treatments. Just because a treatment modality did not work for someone else, doesn’t mean it won’t work for you. Be positive and trust your treatment team.
Mesothelioma is no bargain. But neither is advice that is not accurate. Take a lesson from the expert shoppers, compare and study all the facts about what you might accept as fact, and hunt for information from reliable sources.
Mesothelioma Specialists Offer Best Care, According to Nurse Lisa Hyde-Barrett
After last week’s Thanksgiving holiday, I am going to write about being thankful. I am sure it does not take long for all of us to come up with a few reasons to be grateful. Of course, I am always thankful for my family, my friends, and my health. I recently had something happen to me that was not so pleasant, and I was on the other side of the fence. I was not the healthcare professional, I was the patient.
It gave me new insight into just how people must feel when they are dealing with a new medical condition. Most often, people feel out of control and uninformed when they or their loved ones are sick. Perhaps, even powerless. These feelings can be scary and overwhelming. But you don’t have to feel that way.
I work in a big facility that is a world renowned mesothelioma center. Oftentimes people make comments about how aggressive we are as a medical facility. Yes, we are aggressive. We are like other facilities around the United States that are vigilant in fighting this disease. We don’t give up easily, and we are in it for the fight.
There are so many mesothelioma patients who may not think about going to a specialist or they think their primary care physician can give them the best care. They are right, they will get good care. But they may not receive the newest, cutting-edge care specialists can offer who work with mesothelioma patients on a daily basis. When things are not going so well, patients can be thankful that this group of physicians nurses and scientists can brainstorm together.
I always tell patients who come to our facility that one thing is for sure – when you go home you will know that there was no stone left unturned. This group of professionals offers every bit of treatment they can possibly offer. Some journeys are long and stressful regardless of the care you receive. I just recently visited with a patient from three and one-half years ago. Yes, he does have mesothelioma, but he is up every day thanking his lucky stars that he has another day with his family. Of course, he has his aches and complaints, as we all do. Currently, he is receiving radiation and he has started to feel relief. I know every situation is different, and not all end up so favorably. I sure am grateful that I am associated with a top mesothelioma center that is aggressive and in it for the fight.
If you read this, please take yourself to a specialist who knows mesothelioma, and can possibly make a difference. I cannot tell you how many people I cared for that they were told to get their affairs in order, yet here they are living – three, five, even 10 years after their original diagnosis. One thing is for sure – this is your life and you deserve the best care. If you think I cannot travel because it is too expensive or you are too sick, there are avenues to help you. Just contact me and let me talk with you.
If you have questions about your mesothelioma treatment or any aspect of your mesothelioma care, feel free to contact us.
Nurse Encourages Patients to Choose a Health Advocate
Recently, a close family member had a sudden serious illness requiring a prolonged hospitalization and a three and one-half weeks stay in the intensive care unit. During this sudden and unexpected illness, the importance of having a family member to advocate for him, explain what had been done and not done, and what tests had been performed was crucial. I have the distinct advantage of being an ICU nurse which helped the patient, and the other family members deal with his illness, all the questions and the roller coaster of emotions that goes along with an acute illness.
This made me think about mesothelioma patients and their families who often are treated with surgery, chemotherapy, and radiation. More than likely, at some point during the journey the patient will end up in the hospital, dealing with a host of experts and concerned family members. When this happens, it is important for the patient to ask someone to step up and advocate for them and to communicate his wishes and concerns to other parties.
One of the most important roles of an advocate is to capture all the medical information and to get all the facts. The best way to ensure correct, complete information is to get a notebook and write down questions, procedures and tests that have been performed. Keep a journal of what is going on and upcoming appointments. It is important to record the information in context of how it was said and in what sequence it was said. The drugs that are given to the patient can cause amnesia, and much of what a patient goes through will not be remembered. The detailed notes can bring peace of mind to the patient when they are reviewed and explained.
If you are a family member of a patient dealing with mesothelioma, remember to take care of yourself as well. It is not easy to see your loved one with tubes and undergoing painful procedures. Talk to someone about what you are going through, and trust the staff to take care of your loved one.
Remember, mesothelioma is a journey with bumps along the way, and it is a difficult time for everyone. Staying by your loved ones side can help ease the stress for him, and will also help the medical team by allowing them to focus on the patient’s care.
For more information about health and wellness, please visit www.wellsource.com.
Mesothelioma Caregivers May Benefit from ‘Talking it Out’
“I had no idea that my husband would be this sick.” “No one told us that he would have to go to rehab.” “We never would have imagined that this would happen.”
Recently when listening to a patient and his family talk, it reminded me that everyone needs to tell their own story. Just as every mesothelioma diagnosis and journey is unique, so too, is everyone’s story. We all bring our own perspective and expectations with us. Whether those expectations will become reality is out of our hands.
The next time a family member, friend or co-worker asks you what can they do to help, it might help to just talk to them. Tell them your experience, tell them how you felt when the treatment plan did not go as planned, how the symptoms are progressing, or how things are going better than expected. It can give you the strength to continue.
A mesothelioma patient and his family are told beforehand what the risks and benefits of all procedures are – it is required by law. When hearing the list of risks, no one wants to think it could happen to them or to their family member. When the plan goes off course, it is doubtful that you were not told of the risks vs. benefits of the treatment plan. Rather you hoped and prayed that you or your loved one would not be whom the doctor is talking about when told of the possibilities.
When things don’t go according to plan, or according to your plan, it is a good idea to take a step back and realize the caregiver may need a lot of support. Often times it is the caregiver that needs so much. This is not a time to do this alone. Let people in and tell them how you are feeling. Possibly you are scared, overwhelmed, sleep deprived and not well nourished. This all sounds so minimal but it is so important to pay attention to the caregiver and take care of them.
Trust me if the patient is in the hospital or under the care of physician he or she is well cared for. It is important to keep things in perspective and hard to if you are not well cared for. Please allow people to help. As stated before maybe you just need someone to listen to you.
Know more about Mesothelioma and how you can deal with it.
Treatment Plan Includes Pain Management for Mesothelioma Patient
Pain management is an important part of the medical management of mesothelioma. Over fifty percent of mesothelioma patients report they suffer from pain at some time during their battle with the disease. The most common pain-related symptoms reported by patients with malignant pleural mesothelioma are general pain, back pain, and chest pain. Patients can get pain from several different sources, which is why the assessment of pain needs to be thorough and extensive.
Pain can be managed if it is included as part of the mesothelioma treatment plan. Pain and palliative care specialists are experts in pain control. Palliative care specialists treat the symptoms, side effects, and emotional problems of both cancer and its treatment.
There are different types of pain from malignant mesothelioma – tumors can infiltrate the intercostal nerves (nerves which arise from the thoracic nerves, and run between the ribs) causing a painful syndrome known as neuropathic pain syndrome. If a patient has chemotherapy, they might develop a peripheral neuropathy. If they receive the chemotherapy through an abdominal port, they can experience pain at the port site and diffuse abdominal pain.
Some patients who undergo surgery, either a pleurectomy or an extrapleural pneumonectomy can develop post-thoracotomy pain, neuropathic pain localized to the region of the thoracotomy scar. This can be experienced months post-surgery. The pain is often described as an aching or burning. A small percent of surgical patients can also develop post-operative frozen shoulder which is limited shoulder range of motion usually caused by untreated thoracotomy pain and inadequate rehabilitation.
Treatment for mesothelioma pain depends on the source of the pain. For pain caused by the chemo agent cisplatinum, which can cause peripheral neuropathy, corticosteroids, tricyclic antidepressants, and alpha-2 agonist may be used. Specific medicines that may be used are Gabapentin, Pregabalin, Phenytoin, Carbamazepine, Dexamethasone, Prednisone, and Amitriptyline. For patients with thoracotomy syndrome, lidocaine patches—worn for 12 hours per day—have been found to help. Other treatments shown to be effective are trigger-point injections, nerve blockers, and neurolytic procedures.
According to an article in Cancer Investigation, “It is estimated that chronic pain in patients undergoing cancer treatments range from 33 to 50 percent, it is considerably higher (over 70 percent) in patients with advanced disease.” If someone is having continuous pain, opioids (narcotics) will be ordered. Opioids consist of Morphine, Codeine, Oxycodone, Hydromorphone, Oxymorphone, Fentanyl, and Meperidine. They can be taken by mouth, injection, intravenously, rectally, transmucosal- lollipops, or by spinal infusion.
The most important thing to remember is that pain can be managed effectively with help from your medical team. However, you play a critical role by describing the pain, keeping records of when the pain happens, communicating with your team, and being honest about the effectiveness or lack of relief from the treatment.
Free Mesothelioma Patient & Treatment Guide
We’d like to offer you our in-depth guide, “A Patient’s Guide to Mesothelioma,” absolutely free of charge.
It contains a wealth of information and resources to help you better understand the condition, choose (and afford) appropriate treatment, and exercise your legal right to compensation.
Download Now