Pain Management Expert Dr Yvonne McMaster talks to men: phone-in meeting 24 August 2012

[Admin]

Note: These minutes only cover the part of the presentation given by Dr. Yvonne McMaster

Chairman Tony Maxwell Opened the Teleconference at 9.30 am on Friday Meeting 24 August 2012

Chairman Tony welcomed Dr. McMaster and invited her to the address the group again. Today’s talk to be on Palliative care and one particular area of palliative care is the subject for today.

Dr. McMaster thanked Tony and said it was lovely to be back again and said she spoke about palliative care, in a general sense, a couple of months ago but today wanted to focus on symptom control. One of the very common symptoms she hears about, and a lot of you guys have, is the hot flushes and is very interested in our feedback as she has a number of suggestions to make about them.

One of the things about hot flushes is they are things to do with the valve von motor, things to do with the vascular system so people have tried Beta Blockers. Beta Blockers lower your heart rate and improve the circulation in some way. They can have a bad side effect giving you Asthma if you are Asthmatic. Otherwise they are very low in side effects. Some people use them when going into competitions, even though it is illegal, or if they are going to give a speech or they are going to do something that anxiety producing.

It is if they work against adrenalin. Adrenalin is the thing that makes our heart beat faster and makes it feel up tight in the chest when we are anxious. Dr.McMaster used to compete in Dressage, and it wasn’t illegal for horse riders to take Beta Blockers, so she used to take Beta Blockers before she competed. She found it very successful. You could go into competition calm and not feel up tight.

Now some people have tried it for hot flushes, women and men. (the hot flushes you men are receiving are the revenge of Venus. Laughter) Even though menopausal women have had hot flushes for ages she would not be surprised if men on ADT didn’t experience, in some cases, even worse events.

In some of these things there is no perfect answer and a number of things may need to be tried as different things work for different people.

The other thing that has been tried is the various antidepressants. Now they have an effect on the nervous system and not the vascular system and some people have found them useful. The new SSRI Antidepressants don’t have as many side effects as the old Tricyclics Antidepressants but in general don’t work quite as well as the old Tricyclics.

If you have tried either of those, the beta blockers or the antidepressants, Dr. McMaster would be really interested in feedback from you.

Man #1 said he had tried the Beta Blocker, Metoprolol, been on that for a while and another one before that but (the hot flushes) they are still there. Maybe if I wasn’t on that they could be worse, who knows? Hasn’t tried antidepressants but thinks he is on enough medication at the moment. The other thing that he had heard of is if you stop drinking coffee and alcohol that will help. A few things he is going to try but those two are not on the list.

Man #2 said his history with the flushes is, when he first went on the hormone treatment he had some very serious episodes, waking up and the bed being absolutely soaked, however he hasn’t had those for years since being on intermittent ADT. He might wake up now with a sense of warmness but not the debilitating flushes that bothered him. He was very interested to hear about the interaction with other drugs because he takes a small amount of Timolol which is a Beta Blocker and also on an old anti depressive and it never occurred to him or been told it may minimise the other symptoms. By and large he has a good ride with side effects from the hormone treatment. It wears him out a bit and you get more tired. He has been off the ADT for nine months now.

Dr. McMaster asked Man #2 if his PSA was staying low and he said it was. Previously it would start to escalate after six months so in twelve months he would be back on ADT. He hopes the break may be longer this time round.

Man #3 his urologist originally put him on Androcur, and while it worked quite well, he suffered horrific hot flushes so he had to stop taking it.

Man #4 said his doctor has recommended a natural choice for women, however it has been totally ineffective.

Man #3 has tried evening primrose oil and that has helped a little.

Man #5 said he was on Zoladex and the hot flushes were not too bad. When he moved from Tasmania to Queensland he had to change Urologist and he was put onto Androcur which made him ill in more ways than one and hot flushes were horrendous from that. But even worse than the hot flushes were the cold flushes. He would wake up frozen and he could not get warm even it front of a log fire. These events would last two to three hours. He had to get his GP to take him off Androcur.

Man #1 said the only way for him to beat it a bit was to get under a hot shower for ten to fifteen minutes. Moving around or his partner giving massages didn’t work. Initially they didn’t know what they were.

Man #5 was thankful for that advice. While he does not have the problem as much anymore, he will give it a go if it arises again.

Man #4 said he had been taken off Eligard by his doctor on the eighth of August but the hot flushes have actually increased. He was wondering how long they might go for.

Man #2 There will still be Eligard active in your system for a couple of months at least. Others agreed

Dr. McMaster advised the hot flushes can continue for quite a long time after you have stopped taking ADT.

A long time can be defined as years. (oooooh)

Man #5 suggested Zoladex can have an effect for eighteen to twenty four months after you stop.

Man #8 asked if someone could describe a hot flush to him as he didn’t know what it was. (Lots of laughter)

Man #3 It envelopes his whole body and feels like he is on fire. Very cold in the middle of the night where he lives and he has to take blankets and his clothes completely off then has to stand up simply because he cannot stand lying on the bed.

Dr. McMaster The interesting thing with hot flushes is no one can see it, it is not as though you get all red or anything. It is just inside you.

Man #3 It feels like it is under the skin burning.

Dr. McMaster So the good part is if you are sitting in a group or doing a talk other people cannot tell. Usually they are worse at night anyway.

Man #7 said Dr.Snuffy Myers from the USA has suggested Estradiol patches and he was wondering if other men or Dr. McMaster had any information on that. When asked no one present had any further information.

Dr. McMaster had no knowledge of that remedy but suggested it may be a good idea.

Man #6 The Estradiol patch if used instead of Zoladex or Eligard for example are a lot gentler, kind to your bones but not as strong or effective.

Man #7 understood Dr. Snuffy Myers was using the Estradiol patches in this context, if you were on ADT injections, this was basically a relief of the hot flush side effect not as a substitute for ADT injections.

Man #6 sorry about that. It is used as a substitute for ADT in men over eighty years of age.

Dr. McMaster but it sounds like it could be used for the hot flushes. Dr.McMaster then went on to talk of other symptoms. When she started to do palliative care back in 1975 very little was understood about pain anywhere. She was very lucky to go to the First International Association Study of Pain in Florence. There they did some of the ground work about pain which was up to that time very badly understood. Pain is defined as an unpleasant sensory and emotional experience. Emphasis is on the emotional, associated with actual or potential tissue damage. It is a physiological protection mechanism for us. So if you put your hand in the fire you pull it back. However when you have pain caused by other things, and you cannot pull your hand back out of the fire, we have to do other things. While it is not the case with prostate cancer, about a third of all cancers that are diagnosed it is because of pain.

By the time you get to the end of the road about eighty per cent of advanced cancer patients have pain. The good news is though it can be controlled, and there is virtually no pain now days that cannot be controlled. In Australia the medications are readily available, cheap and most doctors understand very well how to use them. In addition to the medication we have anti cancer treatment which can also work for the pain. So you can take the medication for pain, Morphine, Panadol and others and at the same time continue with ADT, Chemotherapy, Radiation treatment or surgery.

Now in a prostate cancer situation Dr. McMaster is not aware that they have got that far with chemotherapy. You guys would be more up to date about that than she would be.

It is most common with prostate cancer that secondary’s would be in bones. When you have something eating away in bones it usually produces pain and when you move that pain can be worse.

Note, Very Important Message: If you don’t control pain it sets up things in your spinal cord which makes the pain get worse. This can make the pain harder to control. So please don’t tuff it out with pain as you are doing yourself harm. It has been found there are actual physiological and structural changes in your spinal cord that will then make it very hard later on to control the pain. One of the things people think is, you can save up on drugs for pain control now because they will not work for later on.

This is bullshit Dr. McMaster said. The drugs continue to work all through as that is not a problem. Start early as that is when you can get on top of things.

Usually we start with low doses of quite common simple medications such as Paracetamol. Used to recommend Aspirin and Non Steriodials but they are in the bad books but can be used if absolutely necessary they are no longer used commonly. This is due mainly to the cardiac effects and sometimes stomach effects.

Paracetamol is greatly under rated as a medication. It works differently to any other medication in that it works where the pain is. So it goes to the site of the pain and stops the nerve endings from taking up the different electrolytes that are caused by tissue damage. It does not have any effect on your brain, it does not sedate you and it does not have side effects. You have to take Paracetamol regularly for it to work. You swallow it, absorbed in your gut, goes through your liver into the bloodstream and then it has to get into those tissues where the pain is. That takes time and it takes a continuous dose. So what we try to do get people to take at least four doses per day if they have pain Dr. McMaster said.

There are two basic kinds of pain. There is the pain that is caused by stimulating nerve ends and the second pain comes from the nerves themselves being pressed on, invaded or crushed. The two pains are quite different and I can demonstrate it to you right now.

Pinch yourself on the arm. That is the first kind of pain, nerve end pain. Your pinch threatens to damage the tissue underneath your finger and so the pain is telling you to pull your arm away.

Instead of that, if you bash your funny bone, you know the little funny part near your elbow, bang that against the desk you will get the other kind of pain. The pain you get when you damage a nerve. The Ulnar nerve comes round the inside of your elbow and that is the funny bone. If you haven’t hurt this area recently you may remember as a kid when you hit your funny bone. It gives you an unpleasant sensation down the forearm and into your hand. A tingling, stabbing shooting kind of pain and that’s the kind of pain you get when damage is done to nerves. That is called Neuropathic Pain.

As people tend to self diagnose so you need to be able to sense what kind of pain you have got. So it is a good idea to be informed about this as much as you are about your hormone treatment and all of the other things in relation to the active treatment of prostate cancer. So if you can think about how you tell the difference between your cancer pain, whether it is caused by one, nerve end pain or two nerve pressure or nerve damage pain. Well the one way is think of the funny bone effect the pain that is Neuropathic Pain is damage to nerve is felt at the site of the pain and further on down the back of your leg or down your arm around your ribs. Sciatica pain is a Neuropathic Pain as it comes from some sort of pressure on the nerve in the spinal cord. The reason you need to know about this is that the two kinds of pain have completely different treatments. The pain of the pinch, the ordinary kind of pain where the cancer may be growing in the bone and expanding in the bone and pressing on the bone is quite well treated with the ordinary kind of treatment. Start off with Paracetamol and move up when that doesn’t work. You don’t stop taking the Paracetamol you just add something stronger to it. The stronger things are Opiods that are related to Opium and came originally from Opium but where we have a lot of much more sophisticated development. The next step after the Paracetamol might be an Endone related thing. A long acting form is OxyContin which is taken twice a day and gives a background pain relief.

The next level up then is things like morphine. Morphine is an excellent drug that you should not be afraid of. Don’t be frightened that they will become ineffective or addictive because they will not.

People who become addictive to these drugs are taking them for emotional reasons not for pain. There are pain receptors in the spinal cord which require Morphine to go into those receptors and if you are taking Morphine those receptors are satisfied. We try to give exactly the right dose just to take away the pain and no more. If you take too much you get some of Morphine’s side effects which are usually drowsiness and a bit of blurring on consciousness.

Morphine has a good leeway between what is going to give you pain relief and where the side effects begin.

Don’t be afraid to use these drugs and understand they need to be taken regularly. It used to be that people had liquid Morphine every four hours. Paracetamol used to be like that but longer acting forms are now available such as Panadol Osteo last six to eight hours and Morphine has a longer acting form that will also last six to eight hours as has Endone. We can now take something twice a day so it is much easier than it used to be. That deals with the pinch type pain.

We now deal with the Neuropathic Pain. When Dr. McMaster started doing this in 1974 no one had hear of Neuropathic Pain. She came back from England from Florence all fired up to use Morphine and get patients out of pain. Dr. McMaster had a lady with Carcinoma of the lung with very nasty secondaries in the ribs so the nerves of the ribs were affected or that is what Dr. McMaster believes now what the situation was. So the patient received Morphine every four hours. They kept increasing the dose, increasing the dose to try and get on top of the pain. Ten to twenty milligrams of Morphine was administered every four hours. This lady got up to four hundred milligrams per dose every four hours and her pain was not well controlled. They did not understand this but now days we understand Morphine is not enough for Neuropathic Pain.

The medications that have been found for this are the medications that have an effect on nerves and those are the ones that are Anti Epileptic drugs. Epilepsy is a kind of excessive firing off of neurons in the brain and the medications used for Epilepsy over many years started to be used for Neuropathic Pain and worked. More and better ones have been developed so now Neuropathic Pain is no where near the problem it once was. It took years after that lady died before that was realised.

A little more on the side effects of Morphine, the one side effect we have to think about is constipation. As soon as we start to use any of the Opiods you have to start taking something for constipation. Generally if you need advice about this as nurses are better than doctors. Some doctors turn away from thinking about bowels.

Man #5 told of his experience of being diagnosed with Metastic Prostate Cancer four years ago and suffering a lot of pain during that period up to a couple of months ago. During that time the pain was excruciating at times and he was popping more and more pills. Asked his GP about palliative care because he thought his number was up. The GP advised you have plenty of time to live and you don’t need palliative care until you only have three months to live. Man #5 insisted and the doctor gave him a referral and the new doctor put him on Fentanyl Patches starting at a very low dose working up to Fentanyl 50mg. He has been at this level for about six weeks. He said he had only one break through tablet since then. While he still gets a bit of pain the severity is nowhere near what it used to be and does not last as long. He wishes he had been referred to a palliative care specialist in the very early days.

Dr. McMaster was disappointed to hear of suffering but was pleased to hear Man #5 has things under control now. Fentanyl is one of the new Opiods.

Dr. McMaster questioned Man #5 about his pain level now and asked if it was pain when he moved or where is your pain?

He replied the pain he has now is in his spine but sometimes when he is walking he has pain in the shoulder area. That pain is like a red hot poker at times and lasts three to four hours. Dr. McMaster suggested he talk to the palliative care specialist about that in case it is Neuropathic Pain. Neuropathic Pain can often feel burning and you would need to say exactly the distribution of that pain to know if it is in the distribution of a nerve or not or just local.

Man #5 It starts just to the right side of the neck goes right around the whole shoulder and it seems to move around.

Dr. McMaster sounds like it could be Neuropathic Pain from a nerve in your back so you need to talk to the palliative care specialist and you could well respond to one of the newer treatments. Asked if he was on regular Paracetamol, he replied no. It was suggested that may also help.

Dr. McMaster said she would be very interested in following Man #5s progress by email.

Man #1 just on a side issue with this given the state of palliative care that you have described it would seem fairly easy to die at home rather than a hospital.

Dr. McMaster Absolutely. It can be done. Most people want to stay at home if they can. That is one of the things she is advocating for, sufficient funds to provide services to allow people to stay at home. Palliative care doctors and nurses , physio’s and social workers can come and visit at home and do for you whatever needs to be done. Community nurses can come when you can no longer get out of bed and nurse you in bed. Another thing she is advocating for is twenty four hour service for palliative care. So if someone in the middle of the night gets into some difficulty they can ring up, and if it is not something that can be dealt with on the phone, then a nurse can come out to the home. This would be so much better than calling 000 and going to a hospital going through all that has to happen there.

Dr. McMaster has been talking to the Government in NSW about this scheme and hopes to have it finished at the end of this year. Then Queensland. She was heartened to hear Queensland was having a enquiry into palliative care.

Chairman Tony asked for some specific details.

Dr. McMaster The palliative care in Brisbane have told her if you are in South Brisbane or the Gold Coast you have a good chance of having good symptom control and good palliative care. Anywhere else in Queensland you are up against it. There are a few palliative care doctors scattered up the coast but very thin on the ground. So it is far from ideal. If you live in the eastern suburbs of Sydney you are in clover anywhere else in Sydney is not ideal.

Man #2 made the observation that oncologists may be a bit reluctant to seek palliative care for patients as they would rather try a new or different treatment.

Dr. McMaster agreed that can be the case and there can be a couple of reasons for that. There isn’t enough quality palliative care available. Oncologists are good people but sometimes they just don’t want to frighten their patients because palliative care is associated with dying. That should not be the case as it should be associated with living well. It has been shown that good palliative care lengthens life. Most palliative care is in the public health system.

Jim Marshall will be contacting Dr. McMaster to have a talk about the Queensland situation.

Chairman Tony thanked Dr. McMaster for her contribution and expertise. On behalf of all the men thanked her, as the content of the talks are very valuable to the men and appreciated by them. (Here here).