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How Can Extensive Stage Small Cell Lung Cancer Symptoms Be Managed?

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How Can Extensive Stage Small Cell Lung Cancer Symptoms Be Managed? from Patient Empowerment Network on Vimeo.

When extensive stage small cell lung cancer patients experience symptoms, how can they be managed? Expert Beth Sandy from Abramson Cancer Center discusses collaborative symptom management for ES-SCLC patients for common symptoms including respiratory issues, appetite and digestion, and neurologic symptoms.

See More from [ACT]IVATED Small Cell Lung Cancer (SCLC)

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Transcript:

Lisa Hatfield:

Beth, how do you approach collaborative symptom management for newly diagnosed patients with extensive stage small cell lung cancer?

Beth Sandy:

So when you’re newly diagnosed, it really depends. A lot of our patients will end up having symptoms such as shortness of breath or a cough or even coughing up of blood just because the natural biology of small cell lung cancer tends to be a very centralized cancer, the airways. So symptoms typically are respiratory, and we have a lot of really good treatments to help with things like shortness of breath and cough. To be honest with you, this type of lung cancer is so responsive to chemotherapy that sometimes the chemotherapy alone will help your symptoms because it responds so quickly.

If that’s not the case, we can do radiation also to help minimize the cancer where it may be causing shortness of breath, or certainly if you’re coughing up blood, a lot of times we’re going to go in and do something like radiation. There are other things that we can prescribe such as inhalers or medications that are prescriptions that can help with cough like certain syrups and other pills that can help reduce cough. Those typically are often the main respiratory symptoms. Other things that we may find are things like weight loss and decreased appetite. That can be harder, I will say.

There used to be medications that we used for appetite stimulation. The problem with some of those medications is they were increasing the risk of blood clot, which is already a risk when you have lung cancer, so we don’t have to use them as often. But there are some medications that we can work with, and we work with oncology nutrition a lot as well to help patients, especially when weight loss is an issue. There’s a whole other set of side effects the patient’s going to have once they start treatment, but they usually don’t typically present with things like nausea or vomiting, or constipation or diarrhea. Those things can be side effects of treatment.

Another thing that can be common in extensive stage small cell lung cancer is metastasis to the brain. So sometimes patients will have headaches or neurologic changes, but the good thing is that’s very responsive to steroids and radiation, so the sooner we get people on treatment, really those symptoms tend to improve very quickly. The activation tip for this really would be to make sure you let the nurses and doctors know exactly what sometimes you’re experiencing, because we really do have a lot of good supportive care medications, and truthfully the treatment for the cancer should really help improve your symptoms pretty quickly with this disease.

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CAR T-Cell Therapy | What Are Potential Complications?

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CAR T-Cell Therapy | What Are Potential Complications? from Patient Empowerment Network on Vimeo.

CAR T-cell therapy may cause complications and side effects that their care partners should be aware of ahead of time. Expert Dr. Shambavi Richard reviews possible side effects, including cytokine release syndrome, and how patients are monitored during their hospital stay post-procedure.

Dr. Shambavi Richard is Co-Lead Physician for the Myeloma CAR-T Programs at Mount Sinai Tisch Cancer Center. Learn more about Dr. Richard.

See More from The Care Partner Toolkit: CAR T-Cell Therapy

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Transcript:

Katherine:

Dr. Richard, what are the potential side effects or complications of CAR T-cell therapy? 

Dr. Richard:

So, there are several possible side effects with CAR T therapy.  

It’s a little different from an autologous transplant. And I bring that up just to say because they are both cellular therapies, so are frequently compared and contrasted with autologous transplants which we have had for about three decades now. So, the main side effect after CAR T therapy is something called CRS or cytokine release syndrome. So, that happens when CAR T cells recognize the myeloma cells and kill them. A host of chemicals called cytokines are released in the body. And this can make a person feel like they have a bad case of the flu. So, it may be things like fevers, chills, body pains, headaches, loss of appetite, nausea, fatigue.

So, these are some common symptoms of cytokine release syndrome. But these are the milder forms, so in more severe cases of cytokine release syndrome, you can have things like drop in blood pressure, drop in oxygen levels, needing supplementation with oxygen.  

Or in terms of drop in pressure, they may need fluid resuscitation or sometimes even pressors, blood pressure medications that help to boost the blood pressure. So, that’s one major side effect. Another is something called neurotoxicity.  

So, you can have neurological side effects from CAR T therapy which when it occurs in the setting of CRS, that’s called ICANS or immune effector cell-associated neurotoxicity syndrome. That’s what that acronym stands for. And it has a constellation of symptoms such as confusion, disorientation, difficulty with some common everyday tasks. The handwriting may go off, attention deficit, things like that. But then in more severe forms of ICANS, you can actually have lethargy, coma, seizures, brain edema, so much more scary things.  

Then there is another form of toxicity called delayed neurotoxicity which looks completely different. Now you have things like Parkinson’s disease or neuropathies. Either cranial nerve neuropathies or peripheral neuropathies, Guillain-Barre which is a kind of ascending paralysis. So, all of these are also possible as neurotoxic side effects from CAR T therapy.

Aside from these, there is another which is called HLH or macrophage activation syndrome or hemophagocytic lymphohistiocytosis syndrome wherein patients can have organ toxicity, a spiking ferritin levels, new fevers, new neurotoxic symptoms, additional lab abnormalities such as liver function test abnormalities. So, these are other forms of just general CAR T-cell toxicity.   

Then in addition to these, you can have infections, prolonged blood count abnormalities, cytopenia as we call it which can affect the white cells or the platelets or anemia and things like that. So, these are also possible. And then finally things like second primary malignancies which can happen, other malignancies that can happen that may be related to CAR T therapy. A lot of these are still being studied. We don’t have a good understanding of how frequently this happens. But these are all possible side effects of CAR T therapy.  

Katherine:

Do any of the complications have to result in hospitalization? Or can patients be treated outside the hospital?  

Dr. Richard:

So, the way things stand now, and this may be slightly different depending on the specific CAR T product.  

But we generally keep patients hospitalized for the first two weeks after the cell infusion. Most of the side effects such as the CRS and the ICANS tends to occur during this hospitalization phase. HLH and delayed neurotoxicities can occur while they’re still in the later phases of the hospitalization, or it can occur late after they get discharged from the hospital. Infections and cytopenias of course can happen for a while following CAR T therapy.

Once they are discharged from the hospital, we ask that they stay close to us, usually within an hour or two of the hospital so that they can quickly come back in if there’s any issues. We see them quite frequently once they get discharged from the hospital. I see them at a minimum of once a week, more frequently at least a couple times a week, or even three times a week depending on what their blood count needs and monitoring needs are.  

So, we have them stay close to the hospital if they are far away. And the sponsor and our social worker, insurance can work together to figure out how to help them with the hotel costs if they have to stay close to us. So, that’s for an additional two weeks after they’ve discharged from the hospital. Following that, patients go back to their homes, but we still follow them quite frequently depending on what their needs are in terms of possible side effects. 

Yolanda’s Story: My Path to a Myeloproliferative Neoplasm Diagnosis

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Yolanda’s Story: My Path to a Myeloproliferative Neoplasm Diagnosis from Patient Empowerment Network on Vimeo.

Latina essential thrombocythemia (ET) patient Yolanda had many symptoms before receiving her ultimate diagnosis. Watch as she shares the symptoms she experienced, her long path to diagnosis, and her lessons learned about patient empowerment.

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Transcript:

My name is Yolanda, and I was diagnosed in my mid-40s with essential thrombocythemia (ET), a myeloproliferative neoplasm. I’m a Latina woman, and my path to diagnosis took an extended time.

Thinking back on my journey, my symptoms began with severe headaches and dizziness that made it too difficult to finish my work. I also experienced debilitating fatigue that would either keep me in bed for a day, or I’d feel like my vision and thinking were in a fog. It all felt very strange, and I saw my doctor about the symptoms, but he prescribed antibiotics for an infection. Then later I felt numbness and tingling in my hands and feet and then pain in my abdomen. Finally, my doctor decided to run full blood work to see which levels might be abnormal, and that was followed with a bone marrow biopsy to further investigate.

When I finally received my diagnosis with essential thrombocythemia, I felt some relief but also a sinking feeling and dread of what might be ahead for me. I feel like one issue with getting diagnosed may have been that I looked healthy. Maybe my doctor would have ordered the blood work sooner if I didn’t look well. But I try to look forward rather than back. An MPN specialist was recommended to me, and he initially put me on low-dose aspirin.

Then I was prescribed hydroxyurea (Hydrea). I’ve been doing well and feel grateful to have treatment options. But if my disease progresses to a point where I need other options, I’ve already decided that I’ll consider participating in a clinical trial. I feel like I’ve been relatively lucky and want to share my cancer story to help others.

Some of the things I’ve learned on my MPN journey include:

  • Empower yourself by asking your doctors questions about your MPN and what to expect before, during, and after treatment.
  • Learn about clinical trial options. There may be programs that will help you with travel, lodging, and other uncovered expenses. And clinical trials may provide an option for your MPN if you’ve already used all other options.
  • You are the person in charge of your health. If you feel like something is wrong in your body, advocate for yourself. Ask for more testing to find out what is wrong.
  • Be careful about where you look for cancer information. Use credible sources like MPN Research Foundation, The Leukemia & Lymphoma Society, and Patient Empowerment Network.

These actions were key for staying on my path to empowerment.

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Stage IV Metastatic NSCLC Shares Key Learnings on Her Journey

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Stage IV Metastatic NSCLC Shares Key Learnings on Her Journey from Patient Empowerment Network on Vimeo.

Lung cancer patient Carol shares her journey with stage IV metastatic non-small cell lung cancer (NSCLC). Watch as she discusses the symptoms she experienced, how she pushed when her symptoms were dismissed, and key learnings that empowered her on her journey.

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Transcript:

My name is Carol, and I was diagnosed with stage IV metastatic  non-small cell lung cancer (NSCLC) at the age of 53. My initial symptoms were dismissed, but I advocated for myself to receive an accurate diagnosis.

My lung cancer journey began in an emergency room right after New Year’s Day 2022 with severe headache symptoms of head pressure, pain, and vomiting. I knew it was not a normal headache. The ER team started to treat me for a migraine and wanted to send me home. I pushed back and explained that I’d been experiencing symptoms of fatigue, frequent headaches, dizziness, and a weird buzzing sound in my ear over the last few months. I knew that I didn’t feel right and insisted on getting a brain scan.

After waiting hours to get in for the brain scan, they were shocked to find 10 brain metastases. Then a PET scan uncovered the root cause – a tumor in my lung and multiple metastases throughout my body, including leptomeningeal disease. Back when I started having symptoms, I tried to book an appointment with a neurologist, but there wasn’t an opening until February. I shudder to think what would have happened if I had left the ER on January 3 to wait until February. We know our bodies best and need to make sure we push for answers when we know there’s something more to the story. This pushing can be uncomfortable, because no one wants to be labeled “a difficult patient”, but it’s our health – and sometimes our life – at stake.

Following my diagnosis, I received one round of chemo until my genetic testing came back with the EGFR exon 19 deletion result. Then I was switched to a more targeted medication and still receive monthly infusions for bone mets.

Physically my treatment allows me to live an almost normal life enjoying my previous activities of golfing, hiking, and  gardening. And I’ve been surprised by my mental strength and positivity in the face of this horrible disease. Sure… I have times when helpless or sad or angry feelings come up, and I need to embrace and FEEL them, but overall I feel thankful and hopeful.

Some things I’ve learned during my lung cancer journey include:          

  • If something doesn’t feel right with your health, speak up and don’t stop pushing until you get answers.
  • Pay attention to your body when you experience multiple symptoms.
  • Focusing on helping others is another way to take your mind off of your own worries.
  • My friends and family are a big source of emotional support, and we are all going through this cancer journey together. So, I find that it helps them to feel useful when I give them small tasks to do, so they feel like an active part of this journey.

These actions are key to staying on your path to empowerment.

Living With an MPN and Being Your Own Best Advocate

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Living With an MPN and Being Your Own Best Advocate from Patient Empowerment Network on Vimeo.

 MPN patient Rita experienced an extended path to her diagnosis. Watch as she shares her patient journey of varied symptoms, how self-advocacy and self-education assisted in her care, and her tips on how to empower yourself as a patient. In Rita’s words, “Don’t feel bad about advocating for yourself. Your doctor has many patients, but you have only one you.”

See More from Best MPN Care

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Transcript:

My name is Rita, and I was diagnosed with polycythemia vera in March 2019 after nearly three years of wide-ranging symptoms. Like many patients, my path to diagnosis was long and required me to self-advocate.

I was generally healthy until my symptoms of polycythemia vera began. I first experienced one episode of neck, jaw and chest discomfort, and the hospital blood test showed somewhat elevated platelets, and elevated red cell distribution width (RDW); but the doctors weren’t concerned. Next, I started getting optical migraines that were also dismissed. These were followed by incidents of feeling weak and sweaty; some days with headaches, dizziness, and fatigue; and also looking like I had a sunburn on my face with bloodshot eyes. I dismissed these symptoms. Then I started feeling short of breath at times, especially lying down, and experienced intermittent stabbing underneath my left lower chest area.

After having blood tests done, I had to call to find out my results that showed high hemoglobin, high red blood cells, and high hematocrit levels. After I Googled my test results, the first thing that came up was polycythemia vera. Experiencing additional vision issues, abnormal blood test results, chest pressure, and “foggy headedness” that frightened me, my doctor finally referred me to a hematologist who confirmed my suspicions with a PV diagnosis.

Some things I have learned during my MPN journey include:

  • We need to feel comfortable advocating for ourselves, and we need to make sure our doctors are open to being our partner in healthcare rather than our ‘boss’ in health care.
  • We also need to educate doctors that what looks like “dehydration” on a CBC could actually be a rare blood cancer. 
  • Get copies of your own blood test results, X-rays, other medical reports, etc., and, within reason, try to learn what they mean.
  • Diagnosed patients should be allowed to self-refer to an MPN specialist rather than be dependent on their physicians to do it. 
  • We need to self-advocate as “women of a certain age” to make sure we’re not medically or symptomatically reduced to “it’s menopause.”
  • Be careful how you express yourself to your doctor, because a careless comment may throw off your path to a correct diagnosis.
  • Don’t feel bad about advocating for yourself. Your doctor has many patients, but you have only one you. 

These actions are key to staying on your path to empowerment.

What To Expect When Starting MPN Inhibitor Therapy

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What To Expect When Starting MPN Inhibitor Therapy from Patient Empowerment Network on Vimeo.

Changing a treatment approach for your essential thrombocythemia (ET), polycythemia vera (PV), or myelofibrosis (MF) can be intimidating. Dr. John Mascarenhas, a myeloproliferative neoplasm (MPN) specialist, shares tips and advice for beginning a new therapy.

Dr. John Mascarenhas is Associate Professor of Medicine at the Icahn School of Medicine at Mount Sinai (ISMMS) and the Director of the Adult Leukemia Program and Leader of Clinical Investigation within the Myeloproliferative Disorders Program at Mount Sinai. Learn more about Dr. Mascarenhas, here.

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Transcript

Katherine Banwell:

And we have another question from Craig that we received earlier. “I’m currently receiving regular phlebotomies for PV, but my doctor is considering switching me to inhibitor therapy. What can I expect, and are there side effects that I should be concerned about?”

Dr. Mascarenhas:       

So, for some patients, therapeutic phlebotomy is all that they need, and they do very well with it, and they don’t need to take a therapeutic like a JAK inhibitor or hydroxyurea, which is a non-specific treatment.

But some patients do. So, some patients where if their risk score is higher and their risk for thrombosis, that may be an appropriate indication. And some patients have a lot of symptoms with their PV. So, not all PV patients present and behave the same way. Some patients have a very low symptom burden. Some patients have a very significant symptom burden. Itching, for example can be a very annoying and very troublesome symptom for patients with PV.

And, if you don’t have PV or you don’t know someone with PV, you may not understand or realize the negative impact of having intractable itching, often associated with taking a shower or warm water.

And, that can really detract from quality-of-life and cause a lot of anxiety. So, that’s an example of where sometimes a JAK inhibitor like ruxolitinib can be really lifesaving in terms of restoring quality-of-life and functionality to a patient.

Usually, drugs like ruxolitinib are very well-tolerated too, which we’re fortunate about. There’s not a lot of toxicity associated with them. So, for example, nausea, vomiting, diarrhea, hair falling out with chemotherapeutics, you really don’t see with ruxolitinib or Jakafi. Easy bruising, headaches and some dizziness up front sometimes may be seen. They’re usually low-grade and they’re usually fleeting. And usually, the benefit, the feel-good aspect of it outweighs toxicity that can be seen with the drugs. They are immunomodulatory drugs. So, ruxolitinib or Jakafi may increase, to some small extent, but likely, real extent, infectious complications like shingles, urinary tract infections, upper respiratory infections. So, sometimes there is this increased risk. It’s often outweighed by the benefit of the drug.

But there are risks that are associated, and of course the results are not guaranteed. So, I always warn patients, be careful when you look at the package inserts or talk to the physicians. Risks are risks. They’re not guaranteed. So, most patients don’t have these toxicities, but one is at risk for toxicity whenever they take any medication.