Tag Archive for: MPN testing

How MPN Providers Want You to Prepare for Telemedicine Visits

How MPN Providers Want You to Prepare for Telemedicine Visits from Patient Empowerment Network on Vimeo.

What are some ways myeloproliferative neoplasm (MPN) providers want patients to prepare for telemedicine visits? MPN expert Dr. Jamile Shammo shares advice to avoid common obstacles to optimal telemedicine visits.

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Related Resources:

Pros and Cons of Telemedicine From an MPN Patient Perspective

Pros and Cons of Telemedicine From an MPN Patient Perspective

Using Telemedicine to Help MPN Clinical Trial Enrollment After COVID-19

Using Telemedicine to Help MPN Clinical Trial Enrollment After COVID-19

Can Mobile Health Apps Lower the Burden of MPN Symptoms

Transcript:

Lisa Hatfield:

Do you ever wonder what your doctor wishes you would do before having a telemedicine appointment with them? After all, they are meeting with patients almost daily for telehealth visits so they know what makes a successful appointment. Listen as Dr. Jamile Shammo shares her advice on how to prep to make the most of your time together: 

Dr. Jamile Shammo:

When preparing for a televisit, I think it’s so important to know whether or not you would have a connectivity issue. A lot of times, I’m trying to connect with the patient and then we realize that their phone isn’t equipped to handle the televisit and that is kind of disappointing to find that out a minute before you try to connect then that visit becomes a telephone encounter, which is again, less satisfying for some patients. I mean it does the job, but again, it doesn’t provide me with the exam…part of the exam that I’d like to do, at least in that way. 

Lisa Hatfield:

If you are unsure on what platform to use for your appointment or if you have to download an application, it is worth asking your care team ahead of time as Dr. Shammo says. Most institutions have a person that can assist you with setup prior to the appointment, especially if it is your first virtual appointment. 

Dr. Jamile Shammo:

It would be helpful to make sure that you have a blood draw or if your physician would like to have a blood draw in my case, I always like to have a CBC beforehand or perhaps a chemistry or maybe ion studies or what have you, to have that so that there will be something to discuss. Make sure that your physician has had those results before you have the visit. Sometimes it is also disappointing that the patient thinks I’ve received those results when I actually haven’t and I have no control over that, so that would be the other piece.

Lisa Hatfield:

Take control of your visit by asking staff ahead of time if you can have a blood draw or other testing and that those results are shared with the doctor prior to your visit, that way you can discuss them live. You can typically request this by calling or using a patient communication portal. Just like with in-person visits, have your questions ready or items you would like to talk about in order to utilize your time effectively. 


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First New Treatment in a Decade for MF Patients

This blog was originally published by PV Reporter on August 16, 2019, bDavid Wallace, here.

INREBIC provides new, once-daily oral option for patients affected by rare bone marrow cancer

SUMMIT, N.J.–(BUSINESS WIRE)–Celgene Corporation (NASDAQ: CELG) today announced the U.S. Food and Drug Administration (FDA) has approved INREBIC® (fedratinib) for the treatment of adult patients with intermediate-2 or high-risk primary or secondary (post-polycythemia vera or post-essential thrombocythemia) myelofibrosis.1

Celgene Fedratinib FDA approved for Myelofibrosis“The approval of INREBIC is another important milestone for Celgene and underscores our commitment to people living with blood cancers,” said Jay Backstrom, M.D., M.P.H., Chief Medical Officer for Celgene.  “We are excited to provide INREBIC as a new treatment option that may be used in patients with myelofibrosis, including patients previously treated with ruxolitinib.”

“Myelofibrosis can cause patients to suffer in many ways, including experiencing debilitating symptoms,” said Ruben Mesa, M.D., FACP, Director of the Mays Cancer Center at UT Health San Antonio Cancer Center MD Anderson.  “There has not been a new treatment approved for this disease in nearly a decade.  With INREBIC, physicians and patients now have another option available for myelofibrosis.”

The INREBIC development program consisted of multiple studies (including JAKARTA and JAKARTA2) in 608 patients who received more than one dose (ranging from 30 mg to 800 mg),1 of whom 459 had myelofibrosis,1 including 97 previously treated with ruxolitinib.1 The JAKARTA study evaluated the efficacy and safety of once-daily oral doses of INREBIC compared with placebo in patients with intermediate-2 or high-risk, primary or secondary (post-polycythemia vera or post-essential thrombocythemia) myelofibrosis who were previously untreated with a JAK inhibitor, had enlarged spleens (a condition known as splenomegaly), and had a platelet count of ≥50 x 109/L (median baseline platelet count was 214 x 109/L; 16% <100 x 109/L and 84% ≥100 x 109/L).1,2 In the JAKARTA study, spleen volume was reduced by 35% or greater, when assessed from baseline to the end of cycle 6 (week 24), with a 4-week follow-up scan, in 37% (35 of 96) of patients treated with INREBIC 400 mg versus 1% (1 of 96) of patients who received placebo (p<0.0001).1 INREBIC also improved the Total Symptom Score as measured by the modified Myelofibrosis Symptoms Assessment Form (MFSAF) v2.0 diary2 (night sweats, itching, abdominal discomfort, early satiety, pain under ribs on left side, bone or muscle pain) by 50% or greater when assessed from baseline to the end of cycle 6 in 40% of (36 of 89) patients treated with 400 mg, versus 9% (7 of 81) of patients who received placebo (p<0.0001).1

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PV Reporter was the first to report Fedratinib by Celgene, offered on Expanded Access Program for Myelofibrosis patients in November, 2018.

 

MPN Resources

These resources were originally published by MPN Cancer Connection here.

Resources

One of the first recommendations for the newly diagnosed is to see an MPN Specialist. This also applies to patients who have never seen an MPN Specialist. Financial difficulties can make this a difficult task. Before you begin treatment, patients and caregivers should meet with a financial counselor at the facility providing treatment. The counselor will assist in determining coverage and estimate out of pocket expenses. You might also consider an Oncology Nurse Navigator who helps provide support services, coordinates elements of care and helps you learn about additional cancer resources.

Molecular Mutations in MPNs: Impact on Treatment

This video was originally published by MPN Advocacy and Education on March 1, 2018, here.

 

Dr. Jason Gotlib, MD, MS – Molecular Mutations in MPNs: Impact on Treatment