Multiple Myeloma Support Group
Hamilton & District
Hamilton, Ontario, Canada


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SATURDAY MARCH 11, 2006 MEETING

WELCOME

Lori welcomed all and reminded everyone of the IMF Kits. Family members are no longer needed to participate in this program. Patients are still needed. There is no cost to patients. See Lori for more details. Lori made us aware of a new display at the rear of the hall . The product is a food supplement called Two Shakes/ Re Liv. Be sure to check it out.

GUEST SPEAKER

Today will be the first of 2 sessions on Pain Management and Symptom Control.

Laura introduced the guest speaker, Mary Catherine Rilett, a V.O.N. Nurse specializing in Palliative Care since 1992.

There seems to be a negative connotation attached to the words Palliative Care, due to a poor understanding of the meaning of this term. Most people don’t access it in time, feel they are not sick enough or are not ready to acknowledge the end of life. We have all used Palliative Care to make us feel better. It simply helps to manage ANY symptoms of illness, even the flu.

If we are not careful, we will restrict the possibility for those who need it. If not for supportive care, even the common cold would be more miserable. We must try to look at Palliative Care more POSITIVELY.

Pain is one but not the only experience people have with symptoms. We tend to “Put Up” with such troubling symptoms as nausea, vomiting, stress, exhaustion, loss of patience, loss of sleep, constipation, anxiety and depression, to name some. We do not have to bear the whole burden, lots can be done to HELP.

Tools are available to know when to seek aid. Supporters are conscientious of all people surrounding patients who need help as well. Support is provided to auxiliary people who are important to the patient.

PAIN- treat pain early & effectively
-pain can cascade into other symptoms, the bigger pain gets, the more it inhibits
-large number of tools available, different medications, and approaches
-where, when, why, what helps, what doesn’t help, with pain
-side effects must be monitored.

3 TYPES OF PAIN
1. Bone Pain - relatively successful at treating bone pain
2. Visceral Pain - Internal , organ pain, not so specific
3. Nerve Pain - when something is pressing on the nerves - e.g. a tumor

There are tools at hand for all of the above. Through guidelines non-steroid medications are usually tried first. (Tylenol, Ibuprofen ) Next, narcotics or Opiates. The four most commonly used are Morphine, Diloded (a synthetic morphine, 5 times more concentrated), Oxycodone, and Codeine. These medications are taken every four hours to start. They can possibly be stabilized to one or two times per day, hopefully allowing for sleep through the night.

There seem to be two extremes when dealing with pain medications. Some patients cannot tolerate even an increase of 0.1mg. Any increase creates unwanted side effects. Some patients, on the other hand, require 100mg of Diloded every hour. Professionals must find the minimum dose required in order to address pain without nasty side effects.

Addiction is rare. The definition of addiction includes a physical and emotional need for a drug. It is recommended that the dose be altered and not the time interval when trying to accommodate a side effect. There should only be a maximum of four hours between doses. Pain medications need to be tailored to an individual. The right drug can be bumped up for the right pain. No one has to try to "live with" pain.

BREAKTHROUGH

A steady level of pain is medicated all the time. Sometimes a patient needs more medication. If something extra has been done in the day, the patient does not have to wait until their regular dose time. They can have a Breakthrough dose. This is usually between 1/3 and 1/2 of the regular four hour dose.

SPORADIC PAIN

This type of pain is quite rare. If this is truly the case, then the medication can be taken only when needed. If the pain is low grade, then treat it with a low grade dose. People are very adaptive and will tolerate pain without realizing it until the pain is managed and they realize the relief they have achieved.

FUNCTION

Can a patient expect to function with the increase of pain medication. Yes, if the pain is changing. Pain changes as the disease changes. As a disease progresses, so do the symptoms. Stamina is effected and can be brought back to some degree with pain management. Never give up one drug for another. (one may be for bone pain and one for visceral pain) Be prepared for a "cocktail" of medications. This can be adapted to lessen the burden of effects from the cocktail.

STEROIDS

Steroids are seen as a double-edged sword. They can increase appetite and energy, which is positive. They also induce leg weakness and cause swelling, which is negative.

SURGERY

Surgery may be ordered for pain control . If a broken bone has occurred due to a tumor , for example, then surgery may be performed to put pins in to reduce pain.

FENTANYL PATCH

This does have a role, although it must be approached with caution. It is very difficult to know how people will respond to it. A 25mg patch is equivalent to between 35mg and 125mg of morphine. This is a very large spectrum to interpret. However, a patient can put the patch on today and it is effective for 3 weeks of pain relief. It is tricky to adjust the dose, and care must be taken not to cause a pain crisis. The patch is effective when a patient can no longer swallow pills, but it is important to know that there are still other options such as a butterfly (under the skin) or a pump (continuously delivers medication).

VOLUNTEER SERVICES

1. Community Care Access Center - this is an arms length Government Agency who provides care in the home. The patient can be referred by ANYONE! They will provide all kind of services including visiting nurses, shift nursing (limited - must need some kind of injectable medication to get up to 35 hours), personal support help (laundry, dishes, meal preparation), physiotherapy, occupational therapy, nutritional therapy.
2. Dr. Bob Kemp Hospice
3. V.O.N. - can help with child care, memory things, etc.

The Community Care Access Center defines palliative as uncontrolled symptoms and would you be surprised if the patient is alive in one year. If you are symptomatic, ask for an assessment. If you are at home and struggling, ask for support.

CONSTIPATION

Medication can cause it. Pain can cause it. Immobility can cause it. Pain, Constipation, and Breathing are the three most common and troublesome symptoms. A bowel aid should be prescribed with pain medication.

FATIGUE

Fatigue is a result of the disease progression that may not always be fixable, but suggestions can be given to help in dealing with it. It is important to sleep when tired.

NAUSEA & VOMMITTING

Sometimes nausea and vomiting can occur from a blockage (mechanical), sometimes from chemotherapy, sometimes from drugs or sometimes from anxiety. Once the reason has been identified the right anti-nausea can be given.

BREATHLESSNESS

This can be scary to watch and to have oxygen can aid in helping. Often just putting a fan in the room to move cool air , or sitting the patient up can make a difference. Opiates can take away the sense of air hunger and won't change breathing, but will provide comfort.

ANXIETY & DEPRESSION

Anxiety is relatively easy to diagnose. Depression, on the other hand, is the most under diagnosed symptom. Talk to someone. Supporters can help by just list ening and with the aid of medications. VERY IMPORTANT - Only the patient knows what matters, what hurts. Pain is transient and cannot be understood on behalf of others. As the patient, you MUST relay information regarding your needs. Tell someone what you would have to do to them physically to make them feel your pain. (for example, punch them in the stomach)

SYMPTOMS

Questions can get symptoms brought up, but patients must share what is troubling them.

CONCLUSIONS

A lot of medications are used for needs other than their primary purpose. Don't be alarmed by this. Sometimes a medication's best use for a particular patient is a secondary function.

Messages to take home with you today are: Please ask for help. Please know we care. Please know Palliative Care is just "a bowl of chicken soup".

Laura thanked Mary Catherine for coming and educating the group.

Lori informed everyone that the Ontario Government has officially turned down Velcade, but the fight continues. Anyone with and e-mail address who hasn't given it to Lori, Laura or Marnie, please forward it to one of them. Revlimid - Laura has stopped taking Velcade as it has ceased to work for her. She has been on the Revlimid for 2 weeks. It is available (on trial) through Princess Margaret Hospital. It is similar to Thalidomide. It is from the same family as Velcade.

NEXT MEETING

The next meeting will take place on Saturday, May 13, 2006 at 1:00 p.m. at the Linden Park community Church.