Tag Archive for: tingling

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

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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La historia de Yolanda: mi camino hacia un diagnóstico de neoplasia mieloproliferativa

Are There Disparities in Stem Cell Transplant Outcomes

Are There Disparities in Stem Cell Transplant Outcomes?

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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What Factors Affect Myeloma Treatment Decisions?

What Factors Affect Myeloma Treatment Decisions? from Patient Empowerment Network on Vimeo.

Myeloma treatment decisions can vary by patient. Expert Dr. Benjamin Derman reviews factors that may guide induction therapy choices, treatment classes currently available, and strategies for managing common side effects.

Dr. Benjamin Derman is a hematologist and oncologist specializing in multiple myeloma at the University of Chicago Medicine Comprehensive Cancer Center. Learn more about Dr. Derman.

See More from Engaging in Myeloma Treatment Decisions

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Transcript:

Katherine:

There are a lot of available therapies for myeloma. And I’m wondering what factors might impact treatment decisions. You did mention comorbidities. But what other factors are there?   

Dr. Derman:

Sure. And I think in part, it depends on if we’re talking about induction therapy or in the relapsed refractory setting. Let’s focus on induction therapy, right?  

So, there are some drugs that we’re typically going to employ pretty much universally. For those who are inclined to use that CD38 monoclonal antibody that I mentioned, it pretty much plays well with patients of all walks of life. So, that’s one where I feel really comfortable regardless.  

Lenalidomide is a drug that we don’t necessarily know from the get-go if there’s going to be a patient that’s not going to tolerate it well.   

We might reduce doses up front. But for the most part, that’s another drug that we’re typically going to use. I would say the one exception is for patients who have a simultaneous diagnosis of amyloidosis. And we know that in amyloidosis, lenalidomide may not be as well-tolerated.  

But actually, one of the key decisions that I’m often making in clinic myself is around that drug class that I mentioned earlier called proteasome inhibitors. And I mentioned two different drugs. There’s bortezomib and carfilzomib. And they actually come with very different side effects that I think are important to mention.  

Bortezomib is one that is typically associated with a high rate of numbness and tingling, what we call neuropathy in the fingers and toes. And about 75 percent of patients have been reported in the trials to get this. And most of it is what we call lower grade. But I’m not in the patient’s body, and I don’t know what that – what even a grade 1, which would be the lowest grade, really feels like. And if I have a mechanic, somebody who types for a living, a surgeon, somebody who uses their hands or their or rely on their feet for their day-to-day, that’s a scary prospect, right?  

The flip side is this drug, carfilzomib (Kyprolis), is one that does not really cause nearly as much neuropathy, but has been associated with cardiac effects. Heart issues. And so, that can scare people, right? Heart’s important I hear. So, we have to be really careful in how we pick these therapies and talk about it with patients.   

Managing the Side Effects of Advanced Prostate Cancer Treatment

Managing the Side Effects of Advanced Prostate Cancer Treatment from Patient Empowerment Network on Vimeo.

Prostate cancer expert Dr. Rana McKay reviews potential prostate cancer treatment side effects and discusses strategies for managing these issues.

Dr. Rana McKay is a medical oncologist at UC San Diego Health and an associate professor in the Department of Medicine at the UC San Diego School of Medicine. Learn more about Dr. McKay, here.
 
 

Related Resources:

What Is Personalized Prostate Cancer Medicine?

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Tools for Choosing the Right Prostate Cancer Treatment Approach


Transcript:

Katherine Banwell:

Dr. McKay, for these treatment classes, what can patients expect as far as side effects? 

Dr. Rana McKay:

Absolutely. So, I think side effects – discussing side effects is a really important part of the discussion for selecting any one given therapy and in general, I think when we talk about the hormonal therapies one of the side effects that people can get is largely fatigue.  

But a lot of the symptoms are related to low testosterone. And so, that may mean muscle loss, bone loss, you know, hot flashes, fatigue, decreased libido. So, you those are things to consider with hormonal therapies. With the chemotherapies, I think the big ones we worry about are fatigue, risk of infection, blood counts dropping a little bit, people getting tired, numbness and tingling in the hands and feet can occur, some swelling in the legs are common side effects for chemotherapy agents. With regards to the immunotherapy with the vaccine therapy, it actually tends to be a fairly well-tolerated treatment. Maybe some fatigue, rarely some dizziness or some lip – lip sensitivity, numbness with the – the process of kind of collecting the cells. But it actually tends to be fairly well-tolerated.  

The targeted therapies can cause fatigue. They can cause the blood counts to drop and can impact bone marrow function. There can be sometimes GI side effects. Nausea, rash, and then the immune therapy, the pembrolizumab (Keytruda), that is FDA-approved sometimes that can cause immune-related adverse events which is kind of overactivation of the immune system developing, you know, what I’d call it as the itises. Colitis or pneumonitis, which is inflammation of various organs and symptoms related to wherever that may be.