Okay folks, I am in the hotel recovering from a great weekend and some delicious barbeque.  Just a fantastic trip.  If you were a member of our family back in early March you know that our first meeting was all about getting to know each other and doing the intro-to-acro weekend.  If you were not with us yet, I would ask that you go back and read those notes at http://www.facebook.com/group.php?gid=2387429316#/topic.php?uid=2387429316&topic=12390

 

Since our meeting in March, many of our ideas and suggestions steered planning.  Hopefully we will continue to see increased participation and questions/comments when upcoming dates are announced.  As far as medical issues, this weekend we focused on deeper levels of the physical and psychological issues of acromegaly.  The non-patient issues focused primarily on support, essential services, and dissemination of information to acromegalics before, during, and after diagnosis.

 

Panel One Outcomes

[     Emotional

o       Psychologist available at Patient Education Days

o       Webinar content (AcromegalyAnswers.com)

o       Blog Articles at AcromegalyAnswersBlog.com (Multiple bloggers from our panel)- You can use RSS (Really Simple Syndication) to keep you updated on new articles

                                                                                                                                  

[     Raising Awareness (Issues steered by patient panel discussions)

o       Television and Newspaper press

o       Media Outreach

o       Creation of patient checklist (will be posted in a separate message board section, for ease in printing and sharing)

 

[     Ongoing Education Programs

o       Webinars at http://www.acromegalyanswerswebinar.com/ (registration required)

o       Blog at http://www.acromegalyanswersblog.com/ (registration required)

o       Patient Education Days- The next one is on July 10, 2009 at Seattle Swedish Medical Center (http://www.swedish.org/).  If you are interested in attending, please contact me for more information.  I can also arrange for you to have someone to meet personally.

 

 

Panel Two Discussions

 

Medical Insurance Issues

Unfortunately, as most of us already know, the ever-present issue that most patients deal with is related to affordability of medication (insurance issues).

[     Some of the pharmaceutical companies have patient care liaisons.  While we were discussing Somatuline’s patient care services (PACE-Patient Assistance Care Education), if you are not on that, it may be worth contacting your physician or manufacturer to find out about their patient care services.

 

[     Several of the patients were discussing prescription ceiling troubles they were having.  If you are not aware of your insurance company’s ceiling, or if they have one, you may want to check into such issues.

 

[     Another discussion that came up was the difference between Prescription and medical ceilings and co-pays.  Make sure you are familiar with your insurance company rules.

 

[     If you get your insurance through your workplace and feel secure in your employment there, you may wish to discuss your prescription issues with your Human Relations department.  Again, only do this if you feel your job is stable.  (While this was not a part of the weekend I PERSONALLY suggest that if you do wish to talk to your HR department and you have ANY concerns about stability of your employment, research your state’s laws on employment and employment discrimination to make sure that such discussions will not put you at risk.

 

Television

[     Recently the Today Show did a presentation on Acromegaly with a patient who has had difficulty with treatment.

http://www.msnbc.msn.com/id/31502540/ns/today_health

 

[     Since the news piece aired, acromegaly searches online have doubled.

 

Psychologist Dr. Valerie Golden

This meeting was a balance of panel discussion and questions, in addition to Dr. Golden’s prepared presentation.

 

The first major point that Dr. Golden made was very simple:  we all have this illness that complicates your body in many ways.  While we all accept that there are physical issues (tough to ignore), we must understand that psychological issues should be expected and people (patients, family and friends) need to be willing to work with and around our issues.

 

Emotional issues may include:

*Anger

*Depression

*Irritability

 

Diagnosis and Treatment issues provoke anxiety (don’t fight it- the issues are real!)

[     Financial (medical costs and the fears as to how it will impact insurance)

[     Job (stability and long-term success)

[     Relationships (Friends, family, and personal relationships- how do our physical issues impact the people most important to us, and how do we deal with them)

Some typical behavioral issues patients may be faced with

[     Isolation/Withdrawal:  Many patients turn into themselves after diagnosis.

[     Decreased libido (could be a comorbidity, but it could be a psychological offshoot of depression)

[     Displacing feelings onto others (when we get depressed, we may lash out on those we love most because we hope they will understand or at least be forgiving)

o       This is a disease that impacts everybody in our lives, but most patients feel that the disease ACTUALLY happens to us primarily

 

Chronic Illness:

[     Diagnosis is a major life-changing event and most people will go through the typical mourning steps:

1. Resignation (this differs from acceptance- you feel you cannot do anything about the diagnosis)
2. Denial (This cant be me)
3. Anger (Why me?)
4. Bargaining (I will do A, B, and C to alter my behavior if it will change my fate)
5. Depression (Similar to resignation- Helplessness.  Feelings that I cant do anything about it)
6. Acceptance/Adaptation (You have come to terms with your situation and now your personality, values, and attitude will help you to steer your own treatment and its success or failure)

 

o       Understand that you may not feel these exactly in chronological order.  You may also cycle through illnesses over again.

 

Grief vs. Depression

Grief is a rollercoaster, while depression is constant.  You may feel any of the following emotions.  Realistically, length of time your experience the feelings will impact definition of grief or depression. 

[     Feelings of emptiness or despair

[     Loss of hope or self-worth

[     Thoughts of suicide

[     Inability to function at work, home, and/or school

 

Common Myths of Depression

[     Ignore it and it will go away

[     Just being strong is all you need

[     If you aren’t crying, it cant be that bad

Adjustment takes about a year, and then you should be fine.

 

Remember, depression is treatable with the help of a licensed counselor that you trust

 

Body image issues as an acromegalic

[     Self-esteem

[     Anxiety

[     Isolation/Withdrawal

[     Sexuality

 

How do you handle feelings, fears, and anxieties?

[     There is a direct relationship between loss and level of distress.  Remember, with this diagnosis, you HAVE LOST.  The security of good health is an incredibly considerable loss. 

 

[     Coping will be impacted by non-illness issues:

o       Your own personality

o       Support from those closest to you (family and friends)

o       Education available (and ease of access)

o       Social status (increased social status can make coping more manageable)

o       Coping strategies (the better your coping strategies, the more likely you will be able to manage your illness and its issues)

 

Remember that your normalcy has been altered.  It is normal for you to feel a vortex:  “What is my body doing to me?!”

 

When issues arise:

[     Anticipate your roadblocks.  If you can predict what is going to influence your emotions negatively, plan ahead.

[     Plan responses to stress-evoking situations

[     Use active problem solving.  If you can predict that certain people, behaviors, issues can or may cause stress,  try to avoid such situations… THIS DOES NOT MEAN IGNORE YOUR FEELINGS!  If someone says something that bothers you, speak up.  Keeping it to yourself does nothing to benefit you or them. 

Some ACTIVE problem-solving techniques may include:

• Competence and control is the antidote to fear and anxiety.
• Take small steps towards your own definition of success.  If you don’t succeed as much as you like, focus on the strides you have accomplished
• Set realistic goals for yourself to accomplish
• Be flexible.  Understand that things are going to happen that is not how we plan it. 
• Know your triggers and work your plan.  Bad things will happen, but have a strategy to deal with your triggers
• Humor is a good thing.  It diffuses stressful situations without others feeling the need to compensate (suggestion made was: “you know, it’s a good thing I don’t have any feelings or you may have hurt them when you…”)
• Consider this thought: is appearance too far up on your list of defining factors?  Remember, physical reshaping is part of acromegaly.  If you had a bad elbow, would you determine your self-worth by your bad elbow?
• Avoidance fosters more anxiety.  While facing your fears may raise anxiety initially, once you have faced it down, the anticipated fear and associated anxieties will most likely dissipate.

 

Self-talk/Cognitive Restructuring

• Reality vs. Disaster thinking (Reality is essential.  But if your thinking is that things WILL fail, you are going to naturally inhibit your own potential success
• Fear of not being able to handle issues can be inhibitive self-talk.  Again, focus on your progress when trying to accomplish large goals.
• Life is not all or nothing.  Accept your victories, great and small.  As long as you are making positive progress, you are moving in the right direction.
• We are stuck with ourselves 24 hours a day, seven days per week.  No one wants to be around who is always negative.  If you talk to yourself in ways that are always negative, the long-term will not be successful.  Make sure your self-talk is realistic, but not chronically negative. 
  • If you need to, focus on cognitive restructuring
  • Reframe your negative thinking to accentuate the positives and your successes
• When worried about a potential problem, ask yourself what would happen if you cannot handle a situation?  What would you do?  If you have a plan for success and falling short of success, you can hopefully be less fearful.

 

Reality vs. Disaster thinking: 

Yes, acromegaly is a tough diagnosis and some of its side-effects are rough.  BUT… is it really the end of the world?  That is up to you!

 

Handling other people’s anxieties

• Social anxiety is an issue of self-esteem.  Counter-productive feelings include:

§         Feelings that you are ugly

§         Others see it

§         They must think… (fill in your greatest insecurities here)

 

Guidelines for Personal Management

 

Self-Care

• Face your feelings honestly
• Watch your diet- good food makes you feel better physically, but will also help acromegalics with weight issues
• Get exercise.  If your joints inhibit your abilities, do what you can!  Light exercise is always better than bemoaning what you would like to do.
• Focus on stress-reduction.  You know what causes your stress.  Work to reduce it.
• Change your environment.  If you are in a rut or there is something you do not like, work to change it; no matter how briefly.
• Get rest and relaxation.  This is always helpful when dealing with stress or emotional issues.
• Manage your time and energy effectively.
• Work to manage your anger rather than it controlling you.

 

Anger Management

• Relaxation
• Change your thinking: thinking when stressed is overly colorful.  It leads to dramatic emotions.
  • Be rational
  • Avoid words like Always and Never (it alienates the other person)
  • Use logic- be rational and less inflammatory
  • Translate your demands into desires (we want what we want, but we cant necessarily effectively demand it)
  • The world is not always fair.  Don’t expect it to be.  Work around it.
• Work on problem solving
  • Some problems are simply not solvable
  • Anger can be a natural and healthy response to certain situations, so don’t punish yourself
  • When faced with a problem with no real solutions, focus on quality of management, rather than how to close you are to fixing the issue
  • Fix the issues you can, and forgive yourself on other, longer term issues.
  • One of the patient discussions on anger dealt with spousal relations when two of the patients sympathized with the spousal complain “you always blame the tumor…”  This situation might be more common than we all know or can appreciate.  Unfortunately there are no easy answers.  If you are in a relationship where one of the two people is acromegalic, the hope is that the family is sympathetic and the patient works as hard as possible to deal with his or her anger management issues.
• Communicate your ideas better
  • Don’t say the first thing that comes to mind, especially if it is hurtful.  Sit on your negative thoughts and decide whether sharing those thoughts will help.  You can always share your negative emotions at another time.
  • Listen to what your underlying feelings are
• Change your environment
• Sense of humor
  • This is always great for diffusing rage.  You cannot be angry when you are laughing.

 

Relax

• Breathe from your diaphragm 
• Use imagery.  When upset, visualize a more pleasant place that you would rather be.  While this may seem overly basic to some people, it will help when stressed.
• Yoga (if your joints cant handle it) or Tai Chi

 

 

Daphne Adelman, RN

 

Understanding IGF-1 Levels and Comorbidities

 

• GH (Growth Hormone) secretion pulsatile and governed by GHRH (Growth Hormone-Releasing Hormone), somatostatin and IGF-1 (Insulin Like Growth Factor-1)
• Excess GH leads to an overproduction of IGF-1

 

• The endocrine/pituitary system is so complicated that when something goes wrong, it is difficult to specifically pinpoint what caused the problem.
  • This may be a factor in why 20% of diabetics have acromegaly

 

• A normal IGF-1 is 200-300.  If you can stay within the normal range, testing has shown that acromegaly patients will live full and healthy lives
• A patient asked whether high or low end of normal is best.  The answer was that the lower end of normal is ideal

Pituitary issues can impact:

• Prolactin: Mammary Glands
• GH: Adipose Tissue (connective tissue made of fat cells), muscles, bones
• Gonadotropins (ovaries and testes): FSH (follicle-stimulating hormone) and LH (luteinizing hormone)
• ACTH (Adrenocorticotropic hormone: a hormone produced by the pituitary gland that stimulates secretion of cortisone, aldosterone, and other hormones)- Adrenal cortex
• TSH (Thyroid Stimulating Hormone)- Thyroid

 

 

Patient Question from the board:

Are acromegalics able to donate organs?

Organ donation SHOULD be okay.  Any organ is better than no organ, so long as the organ is not damaged (so you may not be able to donate your gall bladder or other organs directly impacted by meds)

 

Most of the organs that had enlarged prior to being treated for acromegaly do go back to their normal size, but not all of them.  Unless the organs were somehow damaged, for the most part, organ donation is still possible even with acromegaly -- unless you have other conditions that make the organs nonfunctional.

 

Comorbidities (illness or disease patients suffer because of original diagnosis)

 

1.   Hypertension  (abnormally high blood pressure)

• Cardiomyopathy (enlargement or rigidity of the walls of the heart)
• Valvular Disease

 

1.        Respiratory Complications

• Sleep Apnea: there are two types of apneas
  • Central (often occurs in people who are seriously ill.  Disease or injury may effect normal breathing)
  • Obstructive or Enlarged Pharyngeal Tissues (part of the airway is closed off (usually at the back of the throat) while trying to inhale during sleep)

 

3.   Glucose Intolerance/DM

diabetes mellitus: (the pancreas does not produce enough insulin.  Symptoms include frequent urination, lethargy, excessive thirst, and hunger)

 

4.   Colon Polyps

(bleeding from the anus, constipation or diarrhea that lasts more than a week, blood in the stool)

 

5.   Arthritis

 

6.   Gonadal Dysfunction

(Sexually limited or lost interest)

 

7.   Cerebrovascular Events (Stroke) and Headaches

 

Monitoring Side-effects

***Pay attention to your baseline of “normal” after you recover from surgery

 

• Take the opportunity to seize opportunities while you can- even if you cant go for as long as you used to do an activity, still do what you can!
  • A patient discussed the pleasure of exercise, but was frustrated that they could not do as much as they used to do.  The answer was that the person should do what they can because “its like an ad for freedom”.  We all have our obstacles.  Listen to your body when it tells you that you are doing too much, but do what you can when you feel up to it

 

• If you want to exercise but joint pain is an issue, you might want to try swimming since gym exercise can be tough on your joints

 

• Patient question on diet

There is no acromegalic diet like diabetics have.  Just follow guidelines of moderation.  You know your weight issues.  Be smart.  Our hearts don’t need more stress!

 

Foods and beverages can impact your body though.  Remember, things like coffee can effect your body.  Caffeine releases adrenaline, which is why the body craves it.

 

§         Patient question on exercise

Exercise does not negatively effect GH or IGF. 

 

§         Patient question on when is the best time to do a Glucose Tolerance Test

o       Testing is most accurate early in the morning after fasting, which is why the first test is done then.  After diagnosis, time is less of an issue.  But just remember, GH levels are pulsatile (they can change throughout the day)- even non-acromegalics can test positively later in the day

 

o       Make sure you do your tests consistently at the same lab.  Different labs have different thresholds for normal, and this can effect what is reported back to your physician, leading to inappropriate changes in treatment

 

§         Patient question on symptoms

You can by symptomatic even when levels are within range

 

§         Patient question on female diagnoses and issues

o       There is a lack of information on female diagnoses

 

o       Most women who are diagnosed, are diagnosed after menopause

 

o       If you become pregnant, you should go off your meds while pregnant- it will not have a negative impact on the child

 

§         Patient question on Gamma Knife

o       It CAN cause memory loss, but it is also better than other forms of radiation for acro patients.  Improvements are also constantly being made with this treatment method.

 

o       Long-term data is difficult to track on body parts because finding volunteers for testing is a challenge

 

o       Somatuline is recruiting patients for Phase IIIB Testing on their Autogel.  Speak with your doctor about SODA (Somatuline Observational Data Analysis)

 

§         Patient question on treatment impacts

When treated properly, 50-70% of patients will be normalized

 

 

 

While we did discuss a great deal of medical information, we did spend a considerable amount of time discussing sharing information with patients and potential patients.  If there is something you would like to see that is not currently provided (or you do not know how to access it), please let me know so I can pass on your message.

 

The ultimate goal is to be most responsive your wants and needs.  Help us make your lives easier!

 

 

 

Until the next meeting…

 

 

I hope this information is helpful.  Feel free to share it with anyone including your physicians or other specialists.

 

Wayne