November 2, 2023

Brielle Benyon

A new survey conducted by the American Cancer Society Cancer Action Network (ASC CAN) found that many patients in active cancer treatment reported being affected by the ongoing drug shortage, with patients insured by Medicaid being disproportionately affected.

“One of the most salient insights that we received here is that this is not affecting everybody equally,” Mark Fleury, policy principal for the ACS CAN said in an interview with CURE®.

The survey, which was conducted in September 2023, included survey responses from 1,222 patients and survivors of cancer who have been diagnosed with or treated for cancer within the last seven years. The findings showed that while 10% of overall patients in active treatment were affected by the chemotherapy shortage, patients insured by Medicaid were more impacted by it, with 18% stating that they were affected.

“We have a very tight supply chain. There’s really no buffer there, so every vial that’s made has to be distributed,” Fleury explained. “There are (cancer treatment) sites that are large enough to have someone keep an eye on shortages, but not every institution has that. … It seems that institutions that are maybe smaller or have fewer resources or personnel to be chasing down these drugs are the ones that are the most impacted. And institutions with less resources oftentimes are serving patients with less resources as well.”

Fleury mentioned that cancer drug shortages put unnecessary stress on patients and their families during an already stressful time, and patient-provider communication is key.

“Patients (should have) individual conversations with their providers about how to move forward, and obviously every patient and every cancer type is different. Some have appropriate solutions, and some don’t.”

Regardless of insurance type, the most common way people were affected by the drug shortage included:

• Delayed or missed treatment (reported by 45% of respondents who were affected, including 38% of this population who faced delays of one month or longer)
• Using an alternate drug (23%; with 68% reporting that they and their medical teams were not able to find an effective substitute)
• Faced difficulty using their insurance to fill a prescription related to the shortage, such as delays in covering an alternative drug (35%)
• Continued the medication with a dose change (6%)

The survey, which was published in October, also included quotes from patients who participated. One individual said, “My doctor’s office only gets enough for one patient a month. I’m currently set to get mine in over six months.” Another person said, “(The shortage) has extended my treatment, which adds to the stress level and horrible side effects.”

However, some individuals — approximately 40% of those surveyed — said that their issues related to cancer drug shortages have since been resolved and their drug is now available to them.

“I think we may be slowly moving away from reducing the number of patients who aren’t able to get the drugs that they need. But I think we’re just going up to that slightly better level where the system is still super fragile. And any additional disruptions … could bring us back and patients not getting them,” Fleury said, mentioning that the ACS CAN is investigating solutions that can fix this problem in a more robust way.

“There (are) short term fixes (for) people who need (cancer drugs) today. … It took us years and even decades to get here. It’s going to take us years to get us out. So we’re looking at both short, shorter and long-term solutions to try and get us away from the brink where we’ve been living, frankly, for quite a while.”

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By Natalie Giocondo

“Early to bed, early to rise, makes a man healthy, wealthy, and wise.” -Benjamin Franklin.

As the last few leaves of autumn fall, and we barrel headlong into the busyness of the holidays, let’s take a moment to welcome the shortening of days and changing seasons. Flowing from a time of harvest to a time of suspension Winter presents us with the opportunity to pause. Just as the animals hibernate and the plants go dormant, we too are invited by the late sunrises and early sunsets to tuck in for some deep relaxation and sleep.

Getting a good night’s rest promotes physical health and overall well-being; unfortunately, it can be a challenge and maybe particularly challenging for MPN patients. According to the National Institutes of Health (NIH), sleep affects every system in the body, and lack of sleep correlates with several issues of interest to the MPN community, including high blood pressure and cardiovascular disease. The NIH also suggests that insomnia is an unmet need in communities with chronic hematological cancers. In 2017, a study conducted by Dr. Krisstina Gowin echoed that unmet need when 52.1 % of her MPN participants reported trouble staying asleep, and another 33.7% said they had difficulty falling asleep, while 31.2% mentioned having insomnia. 

Here are some tried and true healthy sleep habits:

• Stay on a sleep schedule. Go to bed and rise at the same time each day. I, for one, begin heading to bed earlier once the cold sets in and the roosters are crowing a little later in the morning. 

• Create an environment for sleep. Dark, quiet, cool, and without electronics works best. 
• Get enough exercise during the day. If you don’t already have an exercise routine, I highly recommend Justin Grinnell’s Moderate-Impact webinar to get you started. 
• Avoid stimulation. This could be anything from caffeine to nicotine to watching the news or engaging in heated conversations too close to bedtime. 
• Eat early. This point cannot be understated! Some patients with MPNs report digestive issues that interfere with sleep. Giving your body plenty of time to process before heading to bed may be worth a try.

Yoga Nidra

A less well-known practice to encourage deep rest and cultivate sleep is yoga nidra. The words yoga nidra mean yoga (to yoke) and nidra (to sleep). It brings up images of a little yogi cowboy lassoing sleep, or a sleep herder. This practice was brought to the US in the 1960s by Swami Satchidadnanda and popularized by practitioners like Nischala Joy Devi (Deep Relaxation), and Dr. Richard Miller (iRest Yoga Nidra).

The practice requires the practitioner to lie in a comfortable resting position while a guide verbally takes them on a gentle journey through 6 phases of meditation: preparation, intention, rotation of consciousness, breath awareness, sensation awareness, visualization, and dropped mind awareness.

While not studied in the MPN population, studies on yoga nidra have suggested benefits such as reduced perceptions of pain, positive effects on blood pressure, pulse, and respiration rates, reduction in erythrocyte sedimentation (which detects the level of inflammation in the body), and has cured chronic insomnia in some people. 

If you are curious about yoga nidra and would like a little taste, please join me on Thursday, November 16th at noon ET, when we will host a 30-minute guided yoga nidra practice. 

October 31, 2o23

Rebecca Testi, MSN, APN, APN-G

Patients with myeloproliferative neoplasms (MPNs) — a rare form of blood cancer — may lack specific met needs when it comes to psychological care. Providers and caregivers can start by validating patients with MPN to help diminish psychosocial needs, according to Rebecca Testi, MSN, APN, APN-G, Hackensack Meridian Health.

“I think education is really key with the patients, you as the nurse or nurse practitioner clinician really need to be able to tell patients, the depression is a side effect of the disease itself. Not you necessarily being sick, but truly like an underlying disease process. So I think it all starts with really good education, about disease process, treatment, support options, things like that,” explained Testi.

With patients who have MPNs, psychosocial help can be rare, causing patients to lack proper resources. Getting patients to normalize utilizing help can go unmanaged.

“I think we as providers could definitely be better about addressing it, explained Testi, who added that although its normal for patients to feel this way, it is important to find ways to help patients manage it so they can live a more normal life.

“Most cancer centers have really good social workers on staff that are designated to that particular division,” she said. “Where I work, we have dedicated social work for all liquid tumor patients, and most institutions will be able to connect you with a peer-to-peer support group. If patients agree, we’ll often connect one MPN patient with another who’s willing to have their information shared so that they can talk to each other share their feelings.”

Testi also highlighted the importance of caregiver support groups.

“Another thing that’s really important is caregiver support groups,” she said. “Their families can interact and share how having a loved one with this defeat disease affects them. It is often just as hard on the family members and caregivers as it is on the patient.”

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October 27, 2023

Ashley Chan

Patients with myeloproliferative neoplasms (MPNs) may experience a number of symptoms, with fatigue being one of them.

MPNs are types of blood cancer and occur when there is an abnormal change in stem cells within the bone marrow, according to Leukemia and Lymphoma Society. This abnormal change can lead to increased amounts of white blood cells, red blood cells and platelets. The main three types of MPNs are essential thrombocythemia, myelofibrosis and polycythemia vera.

MPN-related fatigue can take a toll on a patient’s quality of life, notably because of the change in the blood’s consistency.

“Fatigue has a profound effect on patients’ quality of life. A lot of people don’t realize that if you have chronic fatigue, especially from MPNs, because your condition is unchecked, then a lot of times it can actually be debilitating,” Patrick Buxton, a clinical nurse coordinator in the hematology department at Fred Hutchinson Cancer Center in Seattle, Washington, said during an interview with CURE®.

“(Patients are) not having the energy to go out and work, participate in family events and just (engage with) life in general. And they just don’t really feel well overall,” Buxton said. “And so, it’s important to monitor these patients’ labs to make sure that they stay within the range for their condition to ensure that they don’t end up developing those symptoms again, because when (a patient’s) blood counts become so high that (their) blood basically becomes a sludge, (they) definitely feel it. And it can cause a whole lot of problems centered around fatigue, but not just fatigue. It can cause a lot of inflammation issues.”

To work through the weight of fatigue, Buxton urged patients to hydrate, eat nutritious food and exercise.

“Especially with MPN, patients maintaining good hydration and adequate nutrition is very important. Because once (patients) kind of get stuck in a downward spiral, it can be very hard to get out,” he noted. “So, making sure that … patients are trying to get a good amount of exercise daily, even if it’s just getting out of bed, pushing (themselves) a little bit each day to try to get that energy going again and making sure that (they) eat and drink enough to keep going.”

Staying hydrated is essential for patients with MPNs, Buxton emphasized.

“Hydration cannot be stressed enough. A lot of people don’t hydrate with water, as I have come to realize, and so there’s been a lot of education patients have like, ‘Oh, I drink all the soda.’

And I’m like, ‘That’s not really helping. You need to drink water, especially when you have this condition, you need to keep on top of things.’”

For patients with MPNs who experience fatigue, Buxton advised them to have open communication with their care teams.

“That line of communication is very important. And even if the patients don’t think it’s important, they know their bodies very well. So, if something is not working right, communicate that to the team,” he said. “And know that it really is a lot of teamwork with the nurses, the patients, the doctors, that the patient is an integral part of the team; without the patient, we wouldn’t be here.

“So, know that (patients are) the center of all of this, and we are here to help, but if (they) don’t report these issues (to us) and just let them be then we won’t know. So, with that information, be a good self-advocate, because that’s how (they’re) going to get better care is being an active participant. Don’t let small things go because sometimes small stuff adds up to something big. And especially with fatigue — patients know their bodies well. So, follow up. Make sure that you are getting the care that you need.”

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October 26, 2023

Darlene Dobkowski, MA

Understanding which of the three types of myeloproliferative neoplasms (MPNs) a patient has can help guide them to receive the appropriate treatment and management of the disease.

Of note, MPNs are a group of rare blood disorders where the bone marrow creates too many blood cells. This can lead a patient to have an imbalance of red blood cells, white blood cells and platelets, all of which can lead to several symptoms. These can include feeling tired, issues with clotting or bleeding and potentially an enlarged spleen.

Unfortunately, the number of patients diagnosed with MDS in the United State each year is not exactly known, according to the American Cancer Society. The organization notes that estimates start at 10,000 and can increase from there. The risk for MDS increases as a patient ages and diagnosis of the disease is uncommon before age 50, according to the American Cancer Society, with most patients diagnosed in their 70s.

Each of the three types of MPNs have their own set of symptoms and management strategies, highlighting the importance of knowing which disease a patient has.

Polycythemia Vera

In patients with polycythemia vera, the bone marrow produces too many red blood cells, which typically carry oxygen throughout the body. This overproduction of red blood cells can thicken a patient’s blood, leading to issues like blood clots and an increased risk for stroke.

The exact cause of polycythemia vera is often not clear, but it is typically related to genetic mutations in the bone marrow cells, particularly in a gene called JAK2. Diagnosis is typically made through blood tests that reveal elevated red blood cell counts, hematocrit levels and the presence of the JAK2 mutation.

Patients with polycythemia vera may experience symptoms like fatigue, headaches and redness or itching of the skin. Treatment for this type of MPN often involves medications and occasionally procedures to reduce the number of red blood cells a patient’s body makes. In particular, treatment for polycythemia vera may include phlebotomy (removing excess blood), medications to reduce blood cell production and management of symptoms and complications.

Essential Thrombocythemia

With essential thrombocythemia, the bone marrow creates too many platelets, which are the cells that help blood clot. Too many platelets can lead patients to experience clotting and bleeding issues. In particular, blood may clot too easily, which can block blood vessels and cause issues like strokes or heart attacks. Paradoxically, patients may also experience bleeding problems because the blood doesn’t clot properly in some cases.

The exact cause of essential thrombocythemia is not well understood, but it is often associated with genetic mutations, particularly in genes like CALR, JAK2 or MPL.

Some patients with essential thrombocythemia may not have any symptoms or they may experience things like headache, dizziness or red spots on their skin.

Patients are recommended to work with their care team to manage the disease and potentially reduce the risk for complications, both of which may be achieved with medications or procedures like plateletpheresis (when platelets are filtered from a patient’s blood through a machine) to control the number of platelets in the blood.

Myelofibrosis

In patients with myelofibrosis, the bone marrow becomes scarred and experiences difficulty in creating enough healthy blood cells, which may lead to fatigue, anemia, an enlarged spleen and an increased risk for infections. Symptoms may also include pain and early satiety, or feeling full even when the patient has not eaten much.

Similar to essential thrombocythemia, myelofibrosis may also be linked to specific genetic mutations like CALR, JAK2 or MPL.

A patient’s care team may manage myelofibrosis with blood transfusions to manage anemia, supportive care to address symptoms, medications to reduce the size of the spleen or, if necessary, a bone marrow transplant.

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October 26, 2023

Alex Biese

Early satiety is one of the symptoms faced by patients with myeloproliferative neoplasms (MPNs) — a set of blood cancers that cause the bone marrow to overproduce red or white blood cells or platelets. Polycythemia vera, essential thrombocythemia and myelofibrosis are all MPNs.

“Early satiety means that you feel full really soon after you start eating,” explained Amanda Smith, a registered nurse at the Huntsman Cancer Institute at the University of Utah. “There are a lot of implications for this. Nutrition is a really big deal, especially when you have a blood disorder or a cancer, so it’s definitely something to be aware of.”

In an interview with Oncology Nursing News, Smith discussed the impact that early satiety can have on patients with MPNs and the role nurses playing in helping patients manage this symptom.

Oncology Nursing News: What kind of impact on quality of life and nutritional intake can this have on patients? And then how can both of those things affect patient outcomes overall?

Smith: If you are not able to eat, it can be really frustrating. Anyone who has ever had a short period of time where they have been unable to eat, knows how run down you can feel, and the lack of energy. You are not getting energy from food as you normally would. And so, it can compound with other things to make you feel just really extra run down. Nutrition is important for our immune systems and it can really have a spiraling effect if we cannot get it under control.

Part of the reason it happens in MPNs is because of splenomegaly, [which] is when your spleen is enlarged. That can happen for a few different reasons, but one of the jobs of the spleen is to filter the blood. When you have an MPN and you have too many platelets or other types of blood cells, then your spleen is — in the simplest terms— working so hard to try and filter all those cells, and it gets too big. Then there is just not room in your abdomen. There’s not enough room in there. That is why it happens.

Patients with MPNs can go through long asymptomatic periods, which is one of the things that makes MPNs really tricky to diagnose and manage. Can this early fullness be a warning sign for patients?

Yes. I know that our providers ask about it every time, so if it’s important enough that they are wanting to know if there have been any changes in that in that area, then yes. Some people can be very stable with this symptom for a long time. As with a lot of things in medicine, the important thing to watch out for is change. You can have a symptom, and it can be stable and may or may not be something to worry about. But if you’ve had an acute change—if something gets a lot worse—it’s definitely something that we would want to know about.

How can nurses help patients manage this issue with things like maximizing their nutritional intake?

The higher calorie foods that you can get down, we would encourage that. We’re also looking at electrolytes a lot, so we’re wanting to make sure those are balanced. High-protein, high-fat types of things, but also just things that you are able to eat. So, it can be really tricky.

A lot of our medications can help shrink the spleen, so medication adherence is huge. Often people feel so much better that they don’t need to be reminded, [but] it’s so critical to stay on the regimen that the doctor prescribes.

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October 26, 2023

By Patrick Daly

According to a single-center, retrospective analysis in Hämostaseologie, myeloproliferative neoplasm (MPN)-associated arterial thromboembolic events (ATEs) and venous thromboembolic events (VTEs) are frequent, and “while [polycythemia vera (PV)] patients or generally JAK2-mutated MPN patients had a significantly increased risk of such vascular events, this risk was reduced in CALR-mutated MPN patients.”

Lead author Kai Wille, MD, of the Johannes Wesling Medical Center Minden at the University of Bochum in Germany, wrote that patients with BCR–ABL-negative MPN frequently experience morbidity and mortality due to these events; however, few studies have reviewed both MPN-associated ATEs and VTEs across all MPN subtypes.

Uncontrolled MPN at Higher Risk of VTE, ATE

Among 892 patients with MPNs with a median follow-up of 6.6 years (range, 0.0-37.6 years), researchers identified 180 first TEs comprising 105 VTEs and 75 ATEs. The probability of an event by the end of the follow-up period was 36.2%, and the incidence rate for any first TE was 2.43% patient/year.

The most frequent VTE type was deep vein thrombosis with or without pulmonary embolism at a rate of 0.59% patient/year, and the most frequent ATE was stroke at a rate of 0.32% patient/year.

Between the 180 patients with a TE and the 652 without, patients with PV had a significantly increased risk of a TE (hazard ratio [HR], 1.660; 95% CI, 1.206-2.286) compared with other MPN subtypes. Conversely, CALR-mutated MPN had a significantly reduced risk of thromboembolism compared with JAK2-mutated MPN (HR, 0.346; 95% CI, 0.172-0.699).

“In summary, our study shows a significantly increased risk of VTE and ATE (often at “unusual” sites) in MPN patients compared with the healthy population, and this risk seems to be particularly increased in newly diagnosed and/or uncontrolled MPN.” Dr. Wille concluded.

Reference

Wille K, Deventer E, Sadjadian P, et al. Arterial and venous thromboembolic complications in 832 patients with BCR-ABL-negative myeloproliferative neoplasms. Hamostaseologie. 2023. doi:10.1055/a-2159-8767

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