“Palliative Care for Advanced Cancer”

“Palliative Care for Advanced Cancer” (Tom Smith) [#32] Brad Power November 2, 2022 “Be honest with yourself, and be honest with your providers about symptoms you're having. If a bone hurts, please tell somebody about it. If you're short of breath, please tell somebody about it.

” – Tom Smith Meeting Summary Advanced cancer patients experience many mental and physical symptoms from the disease, including pain, depression, anxiety, nausea, constipation, neuropathy, urinary problems, and sexual problems, and their family also experiences mental stress.

To relieve these symptoms and improve quality of life for both the patient and the family, palliative care provides medications, nutritional changes, relaxation techniques, and emotional and spiritual support. Dr.

Tom Smith has a unique perspective on how people experience advanced cancer because he is not only a physician treating patients with breast cancer, but he is also a prostate cancer survivor. He has been a pioneer in bringing palliative care to cancer patients and to the mainstream of medical practice. What is palliative care?

Palliative care can be thought of as addressing three circles of services around the patient and family: 1.Symptoms (physical and mental): such as pain, depression, anxiety, how you're coping, nausea, constipation, urinary problems, sexual health problems, erectile problems. 2.Support: Who's supporting you on this journey? Do you have enough support? Who's family for you?

Are they available nearby? Do you need help with activities of daily living? Do you have a religious or spiritual community? 3.Advanced care planning : Do you need a living will? Do you have an Advanced Directive? If you got so sick that you couldn't speak for yourself, who would you want to make medical decisions for you? What are the benefits of palliative care?

When cancer patients are seen by palliative care alongside their oncologist they live longer, and they live better. You've got this whole team whose job is to relieve your symptoms. They may check in with you once a week. Are you bothered by pain? Are you bothered by shortness of breath? Are you bothered by nausea?

Fix those things, and people live six months longer than if they didn't have the palliative care team involved. The data also show that palliative care does a better job when it is involved early in the care of patients, rather than waiting until the last three or four days before they are going to die and scurrying around trying to relieve their pain.

Every advanced cancer patient should be seen by palliative care within eight weeks of diagnosis.

“Palliative Care for Advanced Cancer” (Tom Smith) [#32] How should I behave to best manage my symptoms? Be honest with yourself, and be honest with your providers about symptoms you're having. Be open. If a bone hurts, or if you're short of breath, tell somebody about it. If you're having feelings of depression, anger, or frustration, it's much easier to sh

ould I behave to best manage my symptoms? Be honest with yourself, and be honest with your providers about symptoms you're having. Be open. If a bone hurts, or if you're short of breath, tell somebody about it. If you're having feelings of depression, anger, or frustration, it's much easier to share those with somebody. Get some help with them.

Some people don't want to be a bad patient, and they think that if they complain too much, then the doctor is going to stop their therapy. That's not the case. The providers need to know so they can help. What are some tips for addressing various physical and mental symptoms? ●For neuropathy: menthol, scrambler therapy, auricular acupressure, or ear acupressure.

●For hot flashes: Oxybutynin (Distropan) works for men and women. Other drugs, such as Gabapentin (Neurontin), Duloxetine (Cymbalta), and Venlafaxine (Effexor), work for women but have almost no effect for men. Embr Wave bracelet . Structured breathing. Stellate ganglion block. ●For anxiety: Gabapentin, mental health care professional. ●For orgasms for men: silicone-based lubricant.

●For total pain management : yoga, meditation, meditation apps, e.g., Calm, ThisIsKara. ●For androgen deprivation therapy : exercise.

The information and opinions expressed on this website or platform, or during discussions and presentations (both verbal and written) are not intended as health care recommendations or medical advice by Cancer Patient Lab/Prostate Cancer Lab, its principals, presenters, participants, or representatives for any medical treatment, product, or course of action.

You should always consult a doctor about your specific situation before pursuing any health care program, treatment, product or other course of action that might affect your health.

“Palliative Care for Advanced Cancer” (Tom Smith) [#32] Meeting Notes SUMMARY KEYWORDS palliative care, people, patients, months, hot flashes, symptoms, oncologist, year, cancer, androgen deprivation therapy, gabapentin, minutes, meditation, coping, pain, prostate cancer, doctor, stay, oncology, psa SPEAKERS Tom Smith (65%), Brian McCloskey (10%), Anonymous Caregiver (9%), Kevin Fordney (8%), Rick Stanton (5%), Mike Yancey (3%).

Brian McCloskey (0:03): We are honored to have Dr. Thomas Smith from Johns Hopkins join us today. He is going to be speaking to us about palliative care. What makes Tom so unique is that he is not only a physician, but he is also a prostate cancer survivor. If anyone can understand what patients go through, certainly Dr. Smith can from both sides of the fence.

Often patients don't necessarily want to talk about palliative care because we always have hope. That's why this topic is so important because we are in a serious situation where palliative care may very well be part of our future. Tom Smith (1:18): Let me tell you a little bit about my prostate cancer story.

why this topic is so important because we are in a serious situation where palliative care may very well be part of our future. Tom Smith (1:18): Let me tell you a little bit about my prostate cancer story. I was on an active surveillance trial here at Johns Hopkins because my PSA was rising steadily. It got to 5.8 when I was 66, so I had a radical prostatectomy. Open procedure.

I went for a jog the next day and ran a 25K in the mountains a month later, with a hemoglobin of about 10 and a half – maybe not the smartest thing to do. I had a recurrence within a year. My PSA started to rise. It turns out I have an ATM mutation, the ataxia telangiectasia mutation, a deleterious one, which means it's likely to behave badly. In mine, so far it has behaved intermittently badly.

So it came back within a year. I got androgen deprivation therapy with leuprolide (Eligard and Lupron Depot both contain leuprolide as the same active ingredient.) and bicalutamide (Casodex) that you take for six months, and then I got eight weeks of radiation therapy. I had a really difficult time with the androgen deprivation therapy.

It made me depressed, and I couldn't sleep because I had hot flashes that were terrible. I would wake up every 45 minutes at night. So I went seven or eight months with no sleep, which also contributed to my depression. The depression got so bad at one point that I actually admitted myself to the hospital so I wouldn't kill myself. That can happen.

I had depression when I was a resident, but I hadn't had it for 40 years. And suddenly, when my testosterone dropped to zero, it came back again. Interesting. And then the bicalutamide gave me pretty significant interstitial fibrosis of my lungs. I'm the eighth reported case of it in the literature. Along with my medical oncologist, I wrote up my story.

It can cause inflammation of the lungs in about .03% of people. I was one of those people. It dropped my pulmonary function from about 100% of normal down to about 50% of normal.

“Palliative Care for Advanced Cancer” (Tom Smith) [#32] ultra marathon runner to somebody who couldn't go up a flight of stairs without stopping and huffing and puffing. It's recovered about 70%, which is enough to jog at a 14 minute mile pace for a couple of miles, but it's not enough to do any of the things that I used to do.

Then, unfortunately, within a year of the radiation therapy, I recurred again, with my PSA rising, and it has continued to slowly rise. I had such a difficult time with the first therapy and nearly died, that I am not anxious to do any repeat therapy. I have had a Prostate Specific Membrane Antigen scan. The good news is that it didn't show any lumps or bumps that could be radiated.

We did the Orioles trial here. They somehow configured the trial name to be Orioles where they irradiated all the little spots that could be seen as oligometastatic disease, as it's called.

scan. The good news is that it didn't show any lumps or bumps that could be radiated. We did the Orioles trial here. They somehow configured the trial name to be Orioles where they irradiated all the little spots that could be seen as oligometastatic disease, as it's called. (Oligometastatic prostate cancer is generally defined by presence of five or fewer metastatic sites on imaging.

It is a transitional state between localized and widespread metastatic disease.) That seemed to delay the rest of the disease from coming back. They didn't find any spots to radiate. The bad news is that I'm sure it's in my bone marrow, and I'm going to end up with multiple bone marrow mets sometime within the next year or two, or three. Brian McCloskey (5:36): Do you know what your Gleason is?

Tom Smith (5:40): I was 3 plus 4. Not something that you would expect to recur, but it's that ataxia telangiectasia mutation. I had a germline mutation, meaning one normal and one abnormal gene. When we looked at the actual cancer, there was no ATM protein whatsoever. The cancer had lost the other normal ATM gene, which means it's probably going to be pretty aggressive when it starts to grow.

My PSA is only up to 1.8. But I'm sure it'll be 3.6 in six months, and then 7 after that in six months. So that's where I am prostate-cancer-wise. I see a lot of prostate cancer patients here in my clinic because I'm an oncologist, as well as a palliative care doctor.

It's like seeing the ghosts of Christmas past, present, and future, but not having Jiminy Cricket, so that I can change the future. I got interested in palliative care about 30 to 35 years ago. It grew on the shoulders of hospice. Hospice was started in the 1950s in England by Dame Cicely Saunders , who was a nurse and then a doctor and a social worker.

She set up residential hospices, when people were dying, like when they had six months or less to live. There wasn't much in the way of treatment. You would come, and you would stay there, and you could get morphine, and there was a chaplain for all faiths. I have a picture of the English coast with the wind blowing through the white curtains. A really nice place to be.

In the US, when it was set up, President Reagan expanded the hospice program, and Secretary of the Interior James Watt set it up as a home-based program. You would have specially trained nurses come out to your house under the direction of a doctor to manage pain symptoms and things like that. But you had to have a 50/50 chance of dying in the next six months in order to qualify.

They didn't hold you if somebody lived seven months, but if somebody lived a year then you might be disenrolled from hospice.

“Palliative Care for Advanced Cancer” (Tom Smith) [#32] pain, depression, how people were coping, how their families were coping, making sure that if there were life events that needed to happen that those life events were talked about and made

rolled from hospice. They really paid attention to

“Palliative Care for Advanced Cancer” (Tom Smith) [#32] pain, depression, how people were coping, how their families were coping, making sure that if there were life events that needed to happen that those life events were talked about and made to happen.

About 30 to 35 years ago there were four or five of us in the oncology community and a couple of geriatricians, Diane Meier in particular, who said, “Why should you have to wait until your last six months of life to have somebody pay attention to pain, coping, depression, anxiety, all those things?” We were clearly the lunatic fringe of oncology back then.

The idea that you would tell somebody that they had a terminal illness, oh, my goodness, 40 years ago, that was verboten. Then ideally, you would give somebody some notion that they might die so that they wanted to go back and see where they grew up, if they had to make up with their long lost brother, their kids that they were estranged from, get their financial house in order.

People didn't do that because they didn't have any idea what was going to happen to them. So we thought, “Why not have open and honest communication? And let's talk about symptoms and try to fix everything that we can.” So now when I think about palliative care there are probably half the patients that we see who are not dying of their illness at all.

I see a lot of people with chemo-induced neuropathy, and we have some special ways to treat that. We see a lot of people with nausea and vomiting. We see everybody who gets a heart transplant and everybody who gets an artificial heart. Because you have a whole team coming in – doctors, nurses, nurse practitioners, social workers, chaplains, pharmacists – and saying, “How can we help?

What are the things that are bothering you? And how can we help?” What's not to like about that? So I'm trying to move away from palliative care being just hospice, and for the last couple of weeks of life, to palliative care. I think of it as three circles around the patient and family because the family is always involved. The first is symptoms.

it's pain, depression, anxiety, how you're coping, nausea, constipation (anybody who takes a good pain medicine is going to get constipated), urinary problems, sexual health problems, erectile problems. I didn't mention all the things that I had to do with urinary and rectal incontinence and inability to get an orgasm and all the things that they never told me about and radiation therapy.

So that physical stuff and mental stuff first. The second layer is support. Who's supporting you on this journey? Do you have enough support? Who's family for you? Are they available nearby? Do you need help with activities of daily living? Do you have a religious or spiritual community? That's part of taking care of you. The third big layer is advanced care planning. Do you need a living will?

Do you have an Advanced Directive?