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What Are Follicular Lymphoma Considerations for Watch and Wait?

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What Are Follicular Lymphoma Considerations for Watch and Wait? from Patient Empowerment Network on Vimeo.

What do follicular lymphoma patients and providers need to be aware of during watch and wait? Expert Dr. Kami Maddocks from Ohio State University discusses what factors are monitored during watch and wait, common symptoms to be on the lookout for, and who patients can contact about concerns.

See More from START HERE Follicular Lymphoma

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 What Should Follicular Lymphoma Patients Know About Remission

 What Can Follicular Lymphoma Patients Expect With Remission

Transcript:

Lisa Hatfield:

One person is saying, “I’m in watch and wait currently. Is it possible that I’ll never need treatment, or how long do you wait, and what am I waiting for?”

Dr. Kami Maddocks:

That is a great question. There are patients in watch and wait who will never require treatment. Watching and waiting, we’re watching blood counts, watching the size of lymph nodes. So things that we’re watching for and you’re watching for are changes in lymph nodes size, so are they growing? Are they becoming more symptomatic? Is there a rapid change in them? Are we seeing a change in the blood counts? Are patients starting to have a drop in their blood counts which can happen if somebody’s spleen is getting bigger if they have lymphoma in their bone marrow and that’s progressing, watching for if the lymph nodes are causing a problem, you notice somebody have one in a location like the neck that’s starting to make swallowing difficult or changes in voice, that’s something you want to treat. And then there’s something called B symptoms that we watch for. So if the patient had night sweats…

…night sweats are like drenching night sweats, soak the bed, have to change clothes potentially sheets, fevers, so daily fevers that occur, or significant or rapid weight loss for no reason. All those are kinds of things that we want people to watch for. And we discussed a little bit too if patients start having extreme fatigue, not feeling well, not being able to eat, not having appetites if they have a new pain. And again everybody can have aches and pains. But if you’re having pain that’s not going away or some sort of symptom that’s not improving, those are all things we want to definitely have checked out.

Lisa Hatfield:

I imagine with some of your patients in that mode, there’s what I call the mental gymnastics of thinking, okay, I have this cancer, but I can’t do anything about it, and these symptoms are really vague that come up. So do you allow your patients just to contact you if they’re saying, “I think I have these symptoms, I’m nervous about this.” Can they come in and have a visit with you or contact you at any time?

Dr. Kami Maddocks:

Oh, yes. So we have a 24-hour triage line. I recommend that if patients have a question or concern, it’s better to ask us because if we don’t know about it, we can’t help is the first thing. Usually, we talk to the patient and say, “Okay, how long has this been going on” and see if it’s a red flag like you need to come in right now or is this something that maybe we might recommend getting a set of labs to look at certain labs to see if they’ve changed at all.

We might say, “Okay this seems like something we should actually see you for, but I want CT scans too so let’s order them, so I can have that information when you see me.” So, yeah, I think people should always call with any signs, symptoms, concerns, and then it can be addressed. Now, there are some things that we might say, “Okay, we think based on everything that new cough is probably more likely a respiratory infection. It’s okay to see your PCP.” But we also go through that as well. So yes, I think it’s always best to check in and not let something go.

Lisa Hatfield:

I’m guessing that’s challenging for some of those people in that mode, just thinking, well, I’m just waiting here, so that’s got to be a little bit more challenging.

Dr. Kami Maddocks:

I think you’re absolutely right. And sometimes there’s a benefit to…certainly like rituximab (Rituxan) therapy when there is a disease there, and it is a challenge to think that it’s not being treated.

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When Can Small Cell Lung Cancer Patients Use Palliative Care?

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When Can Small Cell Lung Cancer Patients Use Palliative Care? from Patient Empowerment Network on Vimeo.

When might small cell lung cancer patients want to use palliative care? Expert Beth Sandy from Abramson Cancer Center defines palliative care and shares examples of palliative care support.

[ACT]IVATION TIP

“…there’s even data to show in lung cancer that patients who see palliative care in addition to their primary oncologist actually live longer and have improved quality of life. So we will often pair up with the palliative care team to help our patients maximize their symptom support and their side effect support, and have a good understanding of what their goals of care are with the treatment so that everyone’s on the same page and everyone is having a good experience.”

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

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Overcoming Small Cell Lung Cancer Care Barriers

Transcript:

Lisa Hatfield:

Palliative care is important for quality of life during small cell lung cancer treatment. Can you, first of all, explain what palliative care is, and then also give some advice, any advice you have for patients and their families on including palliative care early on in their course?

Beth Sandy:

So first, let’s define what palliative care is. It seems to be a big word, and sometimes people get a little concerned or confused when they hear that and they think, “Oh, does this mean I’m at the end or something like that?” And it absolutely does not. So palliative care means helping with supportive care or treatment of your side effects or symptoms. So we have a whole different set of doctors and nurse practitioners at my institution who just focus on the palliative care needs.

So, for example, if I have a patient with lung cancer, that’s what I treat, or maybe small cell lung cancer, but if I have a patient with lung cancer who is having a lot of pain and in my visit, I know the basics of the opioids and other medications, but usually we’ll send those patients to palliative care because they will have some other ideas and they can really focus and spend a half-hour just talking about those symptoms, like the pain, the cough, the shortness of breath, the weight loss.

So some people call it palliative care service, other people call it a supportive care service. That’s another kind of term for it. What the palliative care teams often do is what’s called the goals of care discussion, and that can mean a lot of different things to patients. What are your goals with life in general? Not even related to your cancer. Learning about you. Like who do you live with? Who is dependent on you? Who are you dependent on? And then going from there, and what is your understanding of your cancer and what are your goals with the treatment?

Sometimes we use a term called trade-offs. We would say, if the cancer, we’re treating it and it’s worsening, and then we have another treatment for it, and those side effects may be a little bit harder, is that something you want to risk, is being in the hospital and maybe being sick over the holidays or something, or would you prefer not to do that?

So palliative care often helps us with these goals of care discussions, and that can even lead to discussions about do I want CPR and resuscitation and things like that? Some people from the very start of their cancer, even if it’s a curable cancer, say, “But I’m at the point in my life where I have all these other illnesses, and I don’t want to be resuscitated. I want a natural death.” So those are all things that palliative care oftentimes can help with, living wills and things like that. And it’s not to say that your oncologist can’t because these are things I can do as well. But if I’m in a visit with you and I wanted to focus really on the current chemotherapy you’re on and those side effects, it may be better to have a palliative care doctor come on who is trained more in having those discussions.

And I wanted to make one distinction. Is that palliative care is absolutely not hospice care. So hospice care is when we’ve decided we do not want to do any more treatment for the cancer, and we want to improve the quality of the time that we have left. That’s hospice care. Palliative care is not that. Palliative care is when you are still on treatment, and we just want to maximize the supportive care and talk about what your goals are of the treatment. So I think my activation tip here for palliative care is that we often use it in lung cancer.

There’s even a study, there’s even data to show in lung cancer that patients who see palliative care in addition to their primary oncologist actually live longer and have improved quality of life. So we will often pair up with the palliative care team to help our patients maximize their symptom support and their side effect support, and have a good understanding of what their goals of care are with the treatment so that everyone’s on the same page and everyone is having a good experience. 

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What Can Signal Hormone-Sensitive Advanced Prostate Cancer?

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What Can Signal Hormone-Sensitive Advanced Prostate Cancer? from Patient Empowerment Network on Vimeo.

Advanced prostate cancer patients may experience common symptoms, but what are they? Expert Dr. Yaw Nyame with the University of Washington explains the range of symptoms that metastatic patients may experience and common treatments for advanced prostate cancer.

See More from [ACT]IVATED Prostate Cancer

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Transcript:

Lisa Hatfield:

What is advanced hormone-sensitive prostate cancer, and are there specific symptoms or warning signs to be aware of?

Dr. Yaw Nyame:

When we have prostate cancer that has spread beyond the prostate. We define that as advanced or sometimes we call it metastatic prostate cancer. And early on in that process, we can control and often kill many of those prostate cancer cells by taking away testosterone. Testosterone ends up being like the fuel that allows these cancers to grow. And so when we say a prostate cancer is hormone-sensitive, what we mean is it’s sensitive to testosterone, and by shutting off testosterone, we can effectively manage and or kill those prostate cancer cells.

Over time, when we shut off that testosterone, prostate cancers will learn how to produce internally their own testosterone or develop resistance or find ways to still survive in the absence of testosterone, and when that happens, we call that pheromone-resistant or sometimes you will hear the term castrate-resistant prostate cancer.

Advanced prostate cancers are going to be in a category of cancers where people may have symptoms, those symptoms aren’t always specific, they can range from difficulty urinating, having blood in the urine, having fractures of bones that have been invaded with cancer, weight loss, loss of appetite, and so that is sort of a broad spectrum of symptoms that someone could potentially experience with an advanced prostate cancer, but not all folks are going to have those particular symptoms, because oftentimes when you have severe prostate cancer-related symptoms, those are in pretty advanced stages, meaning you have a pretty high amount of cancer that is outside of the prostate.

My activation tip, when it comes to hormone-sensitive prostate cancer that is advanced, is to be informed about the latest therapies that we offer in this space, because it is constantly changing 15 years ago. The mainstay of treatment was just hormone blockade, and we put people on medications that took their testosterone away or offered them surgeries to take away testosterone from the testicles. We then added on these novel testosterone or androgen-blocking medications like abiraterone (Zytiga) or enzalutamide (Xtandi), which people will hear about when they look up the space of what their diagnosis, then we added on chemotherapy in the form of docetaxel (Taxotere), and now we’re doing combinations where we add the hormone blockade and medicine like abiraterone and chemotherapy, what we call triplet therapy as now first-line therapy.

And so this space is changing so much that when you have this diagnosis, you need to take a pause and do your homework so that you are prepared to have a conversation with your medical oncologist about whether you need doublet therapy, one of the two medications or triplet therapy, or if you even need to consider the addition of something like radiation to the prostate. All of these are standard of care, and it’s no longer just a one medication pipeline for treatment is really an individualized and complex therapy.

[ACT]IVATED Prostate Cancer Post-Program Survey

Understanding Follicular Lymphoma Disease Progression Symptoms and Monitoring

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Understanding Follicular Lymphoma Disease Progression Symptoms and Monitoring from Patient Empowerment Network on Vimeo.

How are follicular lymphoma symptoms and disease progression monitored? Expert Dr. Sameh Gaballa explains follicular lymphoma disease transformation, symptoms to be on the lookout for, and frequency of monitoring during watch and wait.

Dr. Sameh Gaballa is a hematologist/oncologist specializing in treating lymphoid malignancies from Moffitt Cancer Center. Learn more about Dr. Gaballa.

See More from START HERE Follicular Lymphoma

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Relapsed/Refractory Follicular Lymphoma Treatments and Bispecific Antibodies

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Transcript:

Lisa Hatfield:

Although follicular lymphoma is a slow-growing cancer, can you speak to the signs that the disease is progressing in the body, what signs that patients might want to look out for?

Dr. Sameh Gaballa:

Yeah, absolutely. So, typically we educate the patients to there are some red flags to look out for, not just for progression,but also for another condition called disease transformation. So, follicular lymphoma does have a, there is a possibility that it can transform from a slow-growing lymphoma to an aggressive lymphoma. Now, this happens at a rate of about maybe 2 to 3 percent per year, but it’s a cumulative risk, so meaning if a patient lives many, many decades, their lifetime risk can be up to as high as 20, 25 percent, 30 percent, depending on the different literature, so there is a chance that these slow-growing lymphomas can transform to an aggressive lymphoma.

And when they do know this, there’s no watch and wait for transformed disease. It has to be treated with chemo immunotherapy because the goal of treatment then is to try to get rid of the aggressive component. What are the signs and symptoms to suggest that you might have transformed disease? This is not something that the patient would typically need to look out for. I tell my patients that, “You don’t need to see, do I have transformed disease or not. This is going to come, and you’re going to know when you have transformed disease. Extreme fatigue, drenching night sweats, the fever sometimes that are not going away.”

The patient might have pain if the lymph node is pressing on some important structure. They may have loss of appetite, loss of weight. So again, something that dramatically happens quickly over a few weeks of time. So if the patient feels sick for one reason or another and they’re not getting better, it can all happen within a few weeks’ time frame. This is the time to get checked early on and go see your oncologist, because then we might need to investigate if there is any potential for transformation. So that’s issue number one.

Issue number two is, which is the much more common scenario, which is the follicular lymphoma is slowly progressing. How would you know? I mean, if you notice a lymph node that in your neck or under the armpits or the groin areas, if they’re growing, then that needs to be evaluated. I mean the patients should expect that those will be growing, they will grow. But they grow over months and years. They don’t grow over weeks.

So anytime you kind of are unsure, if you feel that it’s growing faster than usual, this is, again, something to look out for. And then the B symptoms that I mentioned. So like the sweats, the fevers, the weight, loss of weight, loss of appetite, these are also sometimes things to look out for. Not necessarily, they don’t always mean that it’s transformed disease. It can also be that the follicular lymphoma is also progressing and might need to be treated as well.

Lisa Hatfield:

And then just a quick follow-up to that question. So a patient is watching out for these red flags, but are they going through any kind of regular monitoring in your office? Are you meeting with them on a regular basis? And how frequent might that be for a follicular lymphoma patient who’s watching and waiting?

Dr. Sameh Gaballa:

Yeah. So how does watch and wait look? So, and I tell patients always watch and wait does not mean ignore. Watch and wait means that we’re monitoring the disease, we’re looking at it. How do we do that? So typically we would see the patient maybe every three to six months. And then depending on how do we, when we get a sense or tempo of how their disease is progressing, then we’ll know how often we need to see them. I’ve had, I still have patients where I’m seeing them every three months. And I also have some patients where the disease has been stable for years, I only see them once a year. In terms of imaging, that’s also sometimes an area of controversy. Typically, initially for the first maybe year or two years, I do like a scan, like a CT scan every six months, just to get a sense of how quick or how slow the disease is progressing. If there’s absolutely no change at all, then sometimes we either don’t do scans and just go by the patient’s symptoms and blood work and physical exam, or we do maybe once a year scan but not more than that. So this is how we would monitor the patients in a watch-and-wait approach.

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How Is Renal Medullary Carcinoma Diagnosed?

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How Is Renal Medullary Carcinoma Diagnosed? from Patient Empowerment Network on Vimeo.

Renal medullary carcinoma (RMC) diagnosis involves testing that patients may need to follow up on. Expert Dr. Nizar Tannir explains common RMC symptoms, typical imaging tests that are involved, and advice to patients to be proactive to ensure their best care. 

Dr. Nizar Tannir is a Professor in the Department of Genitourinary Medical Oncology, Division of Cancer Medicine at The University of Texas MD Anderson Cancer Center.

[ACT]IVATION TIP

“…follow up after they have that imaging study…I would like patients to be aware and to be informed of what the symptoms mean. And that warning that blood in the urine or pain needs to be followed up and should not be dismissed or assumed that this is an infection or a stone that passed and you’re young, you don’t have to worry about cancer. They need to really follow up if that facility, that physician did not order the test, they need to follow up with their personal family physician and obtain those tests.“

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 What Are the Challenges of Diagnosing Renal Medullary Carcinoma?

What Are the Challenges of Diagnosing Renal Medullary Carcinoma?

Transcript:

Cora:

Given how rare RMC is, we know many people have a long road to diagnosis, like my brother Herman, which can cause tremendous stress. How is renal medullary carcinoma diagnosed?

Dr. Tannir:  

Renal medullary carcinoma is diagnosed by imaging. Symptoms typically include pain, blood in the urine, and, of course, if the cancer has spread to organs, cough, fever, weight loss…so the diagnosis is made by imaging first. And typically this is done at a facility, hospital, clinic or emergency room, with an ultrasound or a CAT scan or an MRI, which typically shows a mass in one of the kidneys. Renal medullary carcinoma arises more commonly in the right kidney than the left kidney and three-quarters of the time it arises in the right kidney. So, but it can arise in the left kidney. So once there is a mass in the kidney, that obviously needs to lead to a biopsy.

And ultimately the diagnosis of RMC is made by obtaining a piece of that tumor, whether it’s from the mass in one of the two kidneys or a biopsy of a site that the cancer has spread to. So my activation tip is for a patient who has these symptoms and they seek medical advice at a hospital or a clinic or emergency room, is to follow up after they have that imaging study. Occasionally the facility may report the findings on the CAT scan, let’s say, but patients may not get that report; and, unfortunately, this may not be followed later with a phone call to the patient or family to alert them about the findings. So they need to…

Patients need to be proactive and participate in their care by getting the report, by finding out, by following up what showed up on the CAT scan or ultrasound or MRI, and then follow up further with a facility that is specialist in this type of disease.  So my activation tip is be involved, be engaged, be proactive, follow up after you had a test. And if you..if the patient goes to a facility and they just get dismissed without doing the test, because unfortunately I’ve seen it in my practice time and again, where a patient goes to a facility complaining of blood in the urine or pain, and they’re treated with antibiotics and they’re told that they have an infection and the patient doesn’t follow up and they haven’t done an imaging study, a CAT scan or an MRI or ultrasound.

So I think it is important, I would like patients to be aware and to be informed of what the symptoms mean. And that warning that blood in the urine or pain needs to be followed up and should not be dismissed or assumed that this is an infection or a stone that passed and you’re young, you don’t have to worry about cancer. They need to really follow up if that facility, that physician did not order the test, they need to follow up with their personal family physician and obtain those tests. So that’s really my activation tip for patients. 

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What Are the Symptoms of Renal Medullary Carcinoma?

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What Are the Symptoms of Renal Medullary Carcinoma? from Patient Empowerment Network on Vimeo.

What renal medullary carcinoma (RMC) symptoms do high-risk patients need to be aware of? Respected expert Dr. Nizar Tannir shares common symptoms that can signal RMC and advice for patients to help ensure they receive urgent care when needed.

Dr. Nizar Tannir is a Professor in the Department of Genitourinary Medical Oncology, Division of Cancer Medicine at The University of Texas MD Anderson Cancer Center.

[ACT]IVATION TIP

“…if an individual who has sickle cell trait sees blood in the urine or they have flank pain, that those are warning signs, they need to seek medical attention, they need to contact their physician or go to a local emergency room or healthcare facility, and be checked. They can start with having an ultrasound or a CAT scan to really evaluate the kidneys, to look at the kidneys.”

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See More from [ACT]IVATED RMC

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What Is Renal Medullary Carcinoma?
How Is Renal Medullary Carcinoma Diagnosed
 What Are the Challenges of Diagnosing Renal Medullary Carcinoma?

What Are the Challenges of Diagnosing Renal Medullary Carcinoma?

Transcript:

Cora:

For those who may be considered high-risk, what are the symptoms of renal medullary carcinoma?

Dr. Tannir:

RMC, is the most aggressive type of kidney cancer so as any kidney cancer, the symptoms relate to the tumor in the kidney, so there will be blood in the urine, that’s one symptom another symptom is pain, flank pain or abdominal pain, belly pain, those are the symptoms related to the, these are local symptoms related the finding of the tumor in the kidney, but if there is a spread of the cancer and RMC, the reason it is one of the most aggressive cancers any person can get, and the most aggressive kidney cancer type is because of its propensity to spread to organs, and, of course, if there is a spread of the cancer or RMC to organs, there will be symptoms related to the spread of the cancer to these organs, for example, if they cancer spread to the lungs, the patient or the subject, we have cough or shortness of breath, or chest pain, if it spreads to bone they have bone pain, they may have weight loss and fever, and these are called constitutional symptoms.

So fatigue, so these are symptoms related to advanced cancer as it is with any advanced cancer, but specific local symptoms related to RMC would be flank pain and or blood in the urine. These should be warning signs. So my activation tip is if an individual who has sickle cell trait sees blood in the urine or they have flank pain, that those are warning signs, they need to seek medical attention, they need to contact their physician or go to a local emergency room or healthcare facility, and be checked. They can start with having an ultrasound or a CAT scan to really evaluate the kidneys, to look at the kidneys. So this is an important activation tip for individuals who see, who experience or encounter any of those symptoms I just mentioned.

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Are There Predictors That an MPN May Be Progressing?

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Are There Predictors That an MPN May Be Progressing? from Patient Empowerment Network on Vimeo.

Many people living with MPNs are worried about progression. Dr. Raajit Rampal talks about possible indicators and discusses ongoing research to learn more about disease progression. 

Dr. Raajit Rampal is a hematologist-oncologist specializing in the treatment of myeloproliferative neoplasms (MPNs) and leukemia at Memorial Sloan Kettering Cancer Center in New York City. Learn more about Dr. Rampal.
 
 

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Transcript:

Katherine Banwell:

How do you know when it’s time to change treatments? 

Dr. Raajit Rampal:

Well, I think really two things. One is if we aren’t meeting our goals like we just talked about. But the other aspect of that is if we are incurring toxicities that are just not tolerable to the patient and that’s a reason to change therapy always. 

Katherine Banwell:

Many patients, of course, worry about disease progression. Are there key predictors or tests for progression that patients should know about? 

Dr. Raajit Rampal:

This is a key area of investigation currently. I think one of the things that patients say to us so often when we meet them is what’s going to happen to me. And right now, we don’t have great prediction tools. We can say on a population level well, there is X percent of chance of progression at 15 years. That’s useful if you’re talking about a population. That’s not really useful if you’re talking to an individual. Because if I say to somebody there’s a 20 percent chance of your disease progressing to leukemia, it doesn’t really make a difference. That’s a meaningless statement because if you’re in the 20 percent who progress, it’s not a relevant statistic anymore. 

It’s sort of a binary thing. We’ve got to do better at developing this. This is something that the MPN Research Foundation is really heavily invested in in trying to identify predictive biomarkers. 

If we can do that, then perhaps what we can do is say to a patient this is really what we think your actual risk is. And then, the next step is asking the question if we intervene early, can we prevent that progression from occurring. So, that’s where I think we need to go. We aren’t there yet. 

Katherine Banwell:

What signs or symptoms do you look for that may indicate that the disease is progressing? 

Dr. Raajit Rampal:

The blood counts are often the canary in the coal mine regardless of the disease. They can tell us if ET or PV is progressing into MF or whether MF is progressing to more of a leukemic phase. Changes in symptoms sometimes can be a harbinger of disease progression. So, Patient 2, for example, is doing really well and now, he’s having drenching sweats and losing weight. So, those types of symptoms are a sign that physical findings is the size of the spleen if it’s increasing. All of those things together give us a hint about progression.  

Katherine Banwell:

Well, is there any way to prevent progression? 

Dr. Raajit Rampal:

That is the million dollar question. Again, that’s where we ultimately need to be. We want to be able to intervene to a point where patients don’t get that sick. It would be amazing if we’d come to the point where we can intervene early and nobody progresses to late stage MF. Nobody gets leukemia. And I think that’s a worthy goal. That’s not something that we should think is too lofty of a goal. That should be our ultimate goal here. And a number of groups are investigating this exact question. It’s complicated and it’s going to take time. But I think that’s a worthwhile investment. 

30-Year Acute Myeloid Leukemia Survivor Shares His Journey

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30-Year Acute Myeloid Leukemia Survivor Shares His Journey from Patient Empowerment Network on Vimeo.

What might acute myeloid leukemia (AML) patients experience for symptoms, treatment, and coping with AML? AML patient and Empowerment Lead Art Flatau shares the experience of his AML journey from diagnosis, through treatment and AML survival, and advancements in AML treatments.

Art also shares his empowerment advice for patients and care partners to ensure optimal care and how he has found a sense of purpose in patient advocacy efforts.

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Advice for Acute Myeloid Leukemia Patients Seeking a Clinical Trial 

Transcript:

My name is Art, and I live in Austin, Texas. In 1992, I was 31 and married with two young children. I was in graduate school and working full-time. For a couple weeks, I had been feeling tired and had been running a low-grade fever. I also had a lot of bruises, probably because I was playing rugby at the time. I thought the fatigue was because I was overworked and getting  too little sleep.

On Saturday, I had a rugby game but was too tired to play more than a few minutes. The next day, I was too tired to do much. My wife and I decided that I would go to the doctor on Monday. 

Monday morning, I woke, and there was blood on my pillow as my gums were bleeding. My wife wanted to take me to the ER, but I convinced her to just call our doctor. I went to the doctor later that morning. She noted my symptoms, did a quick exam, and sent me for blood work. After lunch, she called and said I needed to go to the hospital and see a hematologist. I knew I was in trouble.

We talked to the doctor and he said, “We have to see what kind of leukemia you have.” What a shock.  I knew that I was sick with something I had not had before. The fact that it was cancer was a shock. I didn’t know that there were different types of leukemia but soon found out that I had acute myeloid leukemia (AML).

That evening, I received platelets and red blood transfusions. The next morning, I had a bone marrow biopsy, more platelets, and surgery to put in a central line. That afternoon, less than 24 hours after hearing the word leukemia in reference to me, I started chemotherapy. This was all overwhelming. We had no way to understand what our options were or to get a second opinion.

Three-and-a-half weeks later, I got out of the hospital with no hair, 25 pounds lighter, a lot weaker but alive. I had more chemotherapy in the next few weeks and more hospitalizations. A few months later, I was finished with chemo. I regained some strength, regrew my hair, and tried to get my life back to normal.

In early 1993, about 9 months after being diagnosed, we got another shock, I had relapsed. I needed to have a bone marrow transplant. Although we had a little time, a few days to figure out where to go for a transplant, we were again struggling to understand the process. We were also struggling to figure out how to move to Dallas for three more months for the transplant. The transplant was a long grind, a month or so in the hospital, a couple of months of going to the outpatient clinic two to three times a week, but we made it through. 

Now, 30 years later, I’m still around. My children graduated from high school, college, and graduate school and have successful careers. My wife and I are empty-nesters.  I am still working but hoping to retire in a few years. Although I consider myself very lucky to have survived and have had relatively few side effects, I do have some side effects to deal with, including low testosterone.

Some things that I’ve learned during my AML journey include: 

  • AML is a rare disease: The good news is that over the last several years a lot of new treatments have been discovered for AML. These new treatments are leading to more people surviving AML. However, these new treatments are evolving rapidly. It is important to find a cancer center and doctors who treat a lot of patients with leukemia. 
  • Consider volunteering: Advocacy work is an excellent way to help yourself and to support other patients and continued research efforts.
  • If something doesn’t feel right with your health, advocate for yourself and ask for further testing.

These actions (for me) are key to staying on my path to empowerment.

Share Your Feedback About [ACT]IVATED AML

How Is Follicular Lymphoma Diagnosed and How Does It Progress?

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How Is Follicular Lymphoma Diagnosed and How Does It Progress? from Patient Empowerment Network on Vimeo.

Follicular lymphoma expert Dr. Jane Winter explains common symptoms, tests involved in diagnosis, and how the disease may progress over time.

Dr. Jane Winter is a hematologist and medical oncologist at Robert H. Lurie Comprehensive Cancer Center at Northwestern University. More information on Dr. Winter here.

See More from The Pro-Active Follicular Lymphoma Patient Toolkit

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Transcript:

Laura Beth:

Dr. Winter, how is follicular lymphoma typically diagnosed? 

Dr. Winter:

So, most often, it’s because of a new lump or bump that a patient notes, perhaps a lump in the neck, but also increasingly these days, many individuals wind up getting CT scans. Belly pain for which they go to the emergency room or something to evaluate another diagnosis, maybe some blood in the urine related to a totally different issue. But CT scans often reveal, enlarged lymph nodes or lymph nodes that are borderline and of concern. 

And this will lead to investigation, ultimately, a biopsy, and a diagnosis of follicular lymphoma.  

Laura Beth:

How does follicular lymphoma typically progress?  

Dr. Winter:

So, to start with, most commonly, patients have low burden disease these days, but some adverse diagnosis will have very extensive disease, a big mass in the abdomen, disease in the chest, so, highly variable. For patients who begin with low burden disease, small lymph nodes that are not bothersome, we generally observe these patients. 

And over time, these lymph nodes may begin to grow, and sometimes slowly, sometimes more rapidly to the point where they cause symptoms or are of concern because they’re cosmetically unattractive. There are occasional times where it’s a lump in the neck that just results in too many inquiries from others. So, that’s when we start thinking about maybe it’s time to start some treatment. So, progression, enlargement, sometimes it’ll be the beginning of symptoms. So, most patients with follicular lymphoma, at least in North America, don’t generally have symptoms at presentation, but B symptoms.  

So, fevers, drenching night sweats, and by that, I mean sweats at night that lead to changing your T-shirt, changing the sheets or the nightgown, not the typical middle-aged woman with a hot flash. But, by drenching night sweats, we mean drenching. Unintentional weight loss. So, these are some of the symptoms that one can see, we call them B symptoms, we can see in patients with follicular lymphoma and other lymphomas as well that may signal progression. 

Prostate Cancer Shared Decision-Making: How Does It Work?

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Prostate Cancer Shared Decision-Making: How Does It Work? from Patient Empowerment Network on Vimeo.

Prostate cancer researcher Dr. Andrew Armstrong describes the benefits of the shared decision-making process and encourages patients to take an active role in their care.

Dr. Andrew J. Armstrong is a medical oncologist and director of clinical research at the Duke Cancer Institute’s Center for Prostate and Urologic Cancers. For more information on Dr. Armstrong here.

See More from Engage Prostate Cancer

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Transcript:

Katherine:

Patients may have heard the term “shared decision-making” Let’s go into – let’s define it, though. What is it, and how does it work? 

Dr. Armstrong:

Sure. So, if you imagine you’re a patient faced with the daunting task of a new cancer diagnosis and trying to navigate decision-making around treatment, or whether you need a certain test, and those tests or treatments have harms and they have benefits, shared decision-making is really the process of communication. You know, open, transparent communication between the doctor or provider and that patient and their family and supportive spouse and others, significant others, so that everybody has complete information around the risks and benefits of a certain treatment course or management course.  

In prostate cancer, this would mean for a newly diagnosed patient, commonly first giving information about what the risks of their cancer might be, but then what the risks and benefits of various treatment algorithms might be, and explaining in ways that a patient can understand those different journeys.  

Dr. Armstrong:

And ultimately the patient makes a shared decision-making with the doctor that’s in their best interest. 

Katherine Banwell:

In your view, what role do patients have in care decisions and why should they feel empowered to speak up and be a partner in their care? 

Dr. Armstrong:

Sure. Just like there’s many different types of doctors, there’s many different types of patients, and you have some patients that have PhDs, you have some patients that are not even sure what cancer is, and it’s really important to empower every patient to understand at a level that will help them make a decision. And some patients wish to have those decisions made for them. I hear that a lot. Some patients really just want to ingest the information, not make a rash decision 

Maybe get three or four second opinions, travel around to really get the right decision. And sometimes it can take a very long time. But every patient has a different journey, and it’s important for the provider, the doctor or the nurse practitioner or the surgeon, to really understand that patient and their values to help them arrive at the decision for themselves. Because sometimes treatment decisions may have equal efficacy but different side effects.  

For example, in prostate cancer, the most common decision is between active surveillance or a radical prostatectomy or radiation of different forms, or the robot versus the open procedure, or intensity modulated radiation or brachytherapy. And these are complex decisions, and I’ve had patients go for months without making decisions. And the shared decision-making approach really can help patients make a decision as quickly as possible. 

So that they can move on and either be cured from their cancer or make the best treatment decision. 

Katherine Banwell:

Dr. Armstrong, why is it so important that patients tell their doctor about any symptoms they’re experiencing? 

Dr. Armstrong:

Certainly symptoms may or may not be related to the prostate cancer, and doctors are well-trained to sift through all of that. You know, back pain could be from a herniated disc or arthritis, but it could be a sign of metastatic disease. Weight loss could be a sign of other metabolic problems, but it can also be a sign of really advanced prostate cancer. Urinary symptoms could just be a sign of a big prostate, may have nothing to do with the cancer, or it could be a big tumor that’s blocking off your bladder.  

So, being transparent and open and just describing what symptoms and letting that physician sort through that with you to help understand what symptoms may or may not be related to the cancer, that’s really important.  

What Are Common MPN Symptoms?

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What Are Common MPN Symptoms? from Patient Empowerment Network on Vimeo.

Dr. Jeanne Palmer, an MPN specialist, reviews the most common symptoms associated with essential thrombocythemia (ET), polycythemia vera (PV), and myelofibrosis (MF).

Dr. Jeanne Palmer is a hematologist specializing in myeloproliferative neoplasms (MPNs) and bone marrow transplant at the Mayo Clinic in Arizona. Dr. Palmer also serves as Director of the Blood and Marrow Transplant Program and is Vice Chair and Section Chief for Hematology. Learn more about Dr. Palmer, here.

 

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Transcript:

Katherine Banwell:

Would you walk us through the common symptoms of each of the MPNs? Let’s start with essential thrombocythemia. 

Dr. Jeanne Palmer:

Right. So, there are a number of shared symptoms throughout all the diseases and when we start to figure out how to categorize them, they call into several different categories. The first one is inflammation-related symptoms. We know that the inherent pathway that’s dysregulated or that causes these diseases to happen can also result in significant inflammation in a person, that can result in things like fevers, night sweats, weight loss, and overall feeling really fatigued and poorly, which is something that it seems to be much more prevalent in patients with MPNs, all sorts of them, actually. 

The next set of symptoms is related to microvasculature, so all the little blood vessels. And sometimes we think, oh, maybe that’s because there’s too many red blood cells or platelets and the blood become viscous. It’s probably more related to the actual dysregulation of that JAK2 pathway, which is inherent to all the myeloproliferative diseases and as a result, the little blood vessels can clamp down and that can give people headaches, visual changes, numbness and tingling in the hands and feet, and even can cause sort of a painful rash called erythromelalgia in the body. 

So, these are things that can happen that are probably less appreciated side effects of the disease. And finally, there’s spleen-related symptoms. The spleen is in the left upper quadrant of the abdomen and it’s an organ that generally is about 12 centimeters in length, 10 to 12, but in patients with myeloproliferative diseases it can be enlarged. And as a result of an enlarged spleen people can have feeling like they get fuller early. So, if you’re eating a meal, all of the sudden you can only eat half of that meal versus the whole meal. 

Discomfort or pain in the left upper quadrant. Sometimes it’s much more noticeable when you like bend over to tie your shoes. And then sometimes people can actually, when the spleen gets really big, the blood flow can be impaired towards the end of it which can cause some of the spleen tissue to die, and that can be painful. So, these are things that if somebody does start to notice that they’re having fullness in the left upper quadrant, pain, stuff like that, that that may be related to spleen symptoms.  

Katherine Banwell:

What about PV or polycythemia vera, what are the symptoms? 

Dr. Jeanne Palmer:

So, all of these sorts of relate to all of the myeloproliferative diseases. So, one other one that I didn’t mention, and this is actually more in PV than others, is itching. Itching can be absolutely unbearable when somebody has PV. It’s particularly noticeable after taking a shower. So, a lot of times I’ve met patients who are like I haven’t been able to take a shower in years, because it causes such a high degree of itching. 

Katherine Banwell:

Why a shower? Is it different from having a bath?  

Dr. Jeanne Palmer:

Water on the body that can cause the problem. So, if people take hot showers, it’s even worse. Although I think that people sort of react to it differently. Usually what patients end up doing is more like sponge bath type of things, rather than actually being exposed to the water. 

 Taking colder showers or cooler showers can sometimes help mitigate that. But the itching, and even in the absence of a shower, people can have pretty severe itching, and that can also be one of the major side effects. 

What Is Advanced Prostate Cancer?

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What Is Advanced Prostate Cancer? from Patient Empowerment Network on Vimeo.

When is prostate cancer considered advanced? What are the symptoms? Expert Dr. Rana McKay explains.

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.
 
 

Katherine Banwell:

What does it mean for prostate cancer to be considered advanced? 

Dr. Rana McKay:

So, generally what that means is that the cancer may have spread outside of the body – outside of prostate to other parts of the body such as the bone or the lymph nodes which is a common location where prostate cancer can go. Additionally, it may mean that the cancer may have come back after it was initially treated with an intent to cure a patient. But then you know the PSA demonstrates, that you know, there’s a rise in the PSA, and the cancer is recurrent.  

Katherine Banwell:

Right. That makes sense. What are the common symptoms of advanced prostate cancer?  

Dr. Rana McKay:

So, you know, I would probably say there common symptoms and just because somebody has these symptoms doesn’t mean they have prostate cancer. But fatigue, weight loss, urinary symptoms, trouble urinating, you know, benign prostatic atrophy is one of the most common symptoms or most common conditions in men and –  

Katherine Banwell:

What does that mean?  

Dr. Rana McKay:

So sort of benign enlargement of the prostate. You know that’s a common phenomenon that happens with age, and it can affect somebody’s ability to urinate. 

But, you know sometimes with prostate cancer it can also impact somebody’s ability to urinate. Their stream, their flow. They may have rectal discomfort. They may feel tired, boney pains. Usually, I tell patients you know persistent progressive symptoms that are just, you know, not going away, not getting better. Those need to be looked at by a physician to evaluate further. 

What Is the Role of AI in Telemedicine for MPNs?

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What Is the Role of Artificial Intelligence (AI) in Telemedicine for MPNs? from Patient Empowerment Network on Vimeo.

How does artificial intelligence (AI) fit into the myeloproliferative neoplasm (MPN) care toolbox? Dr. Kristen Pettit from Rogel Cancer Center explains the current role of AI, her hopes for the future of MPN care, and what she considers the ideal model for MPN care.

See More From the MPN TelemEDucation Resource Center

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Transcript:

Dr. Kristen Pettit:

I think the role of artificial intelligence and telemedicine in MPN fields is going to be evolving over the next few years. I think one thing that will be very interesting that I’m very interested in seeing is whether we’re able to incorporate things like data from wearable devices, for example, like your Apple Watch or those sorts of devices directly into your healthcare to be able to monitor you on a more continuous basis and virtually, I think more things of that nature will be coming over the next couple of years.

I think that incorporating telemedicine into MPN monitoring is a relatively safe thing to do for most patients, very rarely things will come up in an in-person visit that might not have been reported or caught on a telemedicine visit, for example, slight changes in spleen size that we may be able to feel in the office that might not be symptomatic to the patient at home or might not be noticed at home could happen. Other things like weight loss that a person might not necessarily have noticed at home, but that we would hopefully pick up on it.

An office visit might be another thing to think about, but both of these situations, I think are relatively uncommon, I think the most important thing is for a patient and their family members to know their body, know their symptoms, keep an eye out for any changes, while they’re at home, and as long as that’s being done, really, I think telemedicine is relatively safe to incorporate in MPN care. Ideally, I think that would be done sort of intermittently or alternating between virtual visits and in-person visits with an individual patient.

Why Should CLL Patients Speak Up About Treatment Side Effects?

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Why Should CLL Patients Speak Up About Treatment Side Effects? from Patient Empowerment Network on Vimeo. 

How can chronic lymphocytic leukemia (CLL) patients benefit from speaking up about their treatment side effects? Dr. Lindsey Roeker explains how these important discussions can impact a patient’s quality of life.

Dr. Lyndsey Roeker is a hematologic oncologist at Memorial Sloan Kettering Cancer Center. Learn more about Dr. Roeker here.

Download Guide

See More From INSIST! CLL

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Transcript:

Katherine:                  

Why is it important for patients to speak up if they’re experiencing side effects? I know that they sometimes feel like they’re bothering their healthcare team.

Dr. Roeker:                 

Thank you for that question, because it’s really important point. Side effects are easiest to manage when you catch them early. So, when people have, for instance, muscle pain or joint aches, I have lots of tricks up my sleeve to help people, but I need to know about it. So, if people don’t tell me until they have joint pain that’s so bad that they’re not able to exercise or not able to get out of bed easily in the morning, that’s taking it – it’s gone on for a while at that point, and it’s pretty far down the line.

First of all, you wouldn’t have had to suffer for that long because we have ways of fixing it, and second, it’s always harder to fix a problem once it’s further down the line than earlier on. So, I talk to people about what side effects they might experience and what to expect, and then we talk about different management strategies to really nip it early so that we’re not dealing with a really huge problem down the line.

How Can I Tell if My CLL Treatment is Effective?

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How Can I Tell if My CLL Treatment is Effective? from Patient Empowerment Network on Vimeo. 

How is chronic lymphocytic leukemia (CLL) treatment effectiveness monitored? Dr. Lindsey Roeker discusses the potential symptom improvements that can manifest and what she looks for during examinations with her patients.

Dr. Lyndsey Roeker is a hematologic oncologist at Memorial Sloan Kettering Cancer Center. Learn more about Dr. Roeker here.

Download Guide

See More From INSIST! CLL

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Transcript:

Katherine:                  

How do you monitor whether a treatment is working?

Dr. Roeker:                 

So, a lot of it has to do with the CBC, so your normal blood count, and what we’re looking for is improvement in hemoglobin and improvement or normalization of platelet count. And for many people, those, either anemia or low platelets, are the symptoms that drive people to be treated in the first place, so we’re looking for those parameters to get better.

With a lot of people with CLL, totally understandably, because it’s the number that’s the most abnormal, really focused on white blood cell count. 100 percent understandable.

I always tell people that that’s actually the part of the CBC that I care least about, and the reason is that, for patients on BTK inhibitors, we expect to see the white blood count actually get higher before it gets less high. That’s actually just a sign that the drug is working and it’s pulling CLL cells from the lymph nodes into the bloodstream. So, that’s actually a good sign that it’s working, and that lymphocyte count, at least in the beginning, isn’t a great marker of how well the drug is working.

The other thing that’s important is the physical exam, so looking for whether any lymph nodes that were enlarged have normalized or gone away, and also feeling the sides of the spleen, because the spleen can become enlarged with CLL, and it’s important to make sure that’s normalizing, as well.

And then the last piece is talking to people, so making sure that if they were having fatigue, or fevers, or night sweats before they started treatment, to make sure that those symptoms have gone away. And that’s kind of the three things that I use. I use the blood counts, the physical exam, and the interview with a patient to really understand how their disease is responding.