November Newsletter 2018

Charlotte County Ostomy Support Group Website www.ccosg.org A 501 (C) (3) nonprofit organization, (tax deductible donations)

Officers President: Jerry Downs……. 629-7568…………..email:fldowns@embarqmail.com

Vice Pres…Bonnie Coker 423-8542

Directors Janice Creutzman;941-639-2370

Secretary: Lovelle Meester….637-8167

David Sandora…..941.828-1076

Treasurer: Lorelie Godbout….603-474-9063

Committees Newsletter: Gloria Patmore & Karen Chalfant

Programs & Education: Jerry Downs

Penny Maki, RNET,CWS, 205-2620

Gloria Patmore, 627-9077

Nancy Frank RN,BSN,CWOCN, 629-5118,

Marie Michel RN,CWCA, CHRN,OMS, 941-626-2607

Visitation: Nancy Frank BSN,CWOCN

Library: Karen Chalfant

Professional Advisors: John P. Rioux, MD, F.A.C.S.

Nancy Frank, RN,BSN,CWOCN

Marie Michel,RN,CWCA,CHRN,OMS

Next Meeting: Tuesday, November 13, 2018, 2:00 pm

South Port Square 23023 Westchester Blvd Port Charlotte Fl

Gables East 2nd floor alcove

Valerie Miller RN Convatec Rep

chance Drawings

Phil’s$10      Morgan’s Café $10      Beef O’Brady PG $20       2 Subs

Since October 7th was Ostomy Awareness Day it was only right that our support group celebrates that fact with an ice cream social at the end of the meeting. The ice cream was supplied by President Jerry and wife Linda. The toppings were supplied by Vice President Bonnie Coker.                                                       

There were 25 of us attending the meeting and hopefully everyone participated in the celebration. If you have an ostomy I’m sure you appreciate it, especially if yours was a cure for ulcerative colitis. A former president, Roger Wilson, always referred to his ostomy as a cure, not a disease. This is the case for many living with an ostomy.
The ostomy has allowed the surgeon to remove a rectum that had cancer, and you have lived with a change in your elimination pattern. It may have taken some time to adjust to the change, but you did it! (With or without irrigation as the situation dictated.)

An ostomy has allowed you to live a much better life than the one you had, when you had ulcerative colitis and were running to the bathroom many times a day, (and worrying that you wouldn’t get there on time.)

And for those of you with a urostomy it was a cure when diseased bladders were removed and your ileal conduit was made.

Yes! A celebration honoring ostomies was definitely an important part of our October meeting.

It was quite fitting to have as our speaker Nancy Frank RN, CWOCN. Nancy Frank is the director of the Wound Care and Hyperbaric Medicine Facility in the Promenade Shopping Center in Port Charlotte. It is part of Fawcett Hospital. It is through the caring and kindness of her hospital and her facility that we have a supply closet to store and dispense ostomy supplies. When the American Cancer Society closed the Port Charlotte Office we were left without a place to store the supplies. Through the caring of the former administrator of Fawcett Hospital and Nancy that we received permission to use cabinets in the storage area of Nancy Frank’s facility. It is great for the person in need to be able to call and have either Jerry Downs or Gloria Patmore escort them to the closet. The Wound Care Facility is a busy place, so to go into the closet an appointment is needed. The need to obtain a pouch may arise because you were sent home with only one or two pouches, or an order to your supplier was delayed, or you may be using more because leaks are occurring for a variety of possibilities.

Unfortunately, the closet cannot be open and available 24hours a day, and not every imaginable item is there, but hopefully what your needs are, can be accommodated. Call Jerry Downs at 941-629-7568 or Gloria Patmore 941-627-9077 to set up an appointment.

Air travel was a topic that Nancy talked about. She suggested that you make a list of supplies that you use, and double the quantity for the time you will be gone. Air pressure changes may cause your pouch to inflate. Change your pouch just before boarding your flight. Be sure your supplies are in your carry on. Since no scissors are allowed aboard to cut your openings ahead. If you do not have a travel card that explains that you have an ostomy, you can secure one online or see Nancy or Jerry for this information.

Nancy also replied to the members who complained the nurses were unable to get their supplies for them when they were hospitalized. The hospital stock of supplies is very limited. Take your supplies to the hospital whenever possible. It is the best way to meet your needs.

There were also complaints about floor nurses expecting the ostomate to handle their own changes. When you are sick and on your back hooked to an IV, you need help. The experienced ostomate can direct the nurse through the procedure most of the time. Not all nurses have had experience in changing an ostomy appliance. Not all comments were negative, however. One person happily reported that her nurse had done an excellent job caring for her ostomy. Unfortunately, not all nurses have had the expertise and experience.

Aside from hospital discussion: Keep in mind that the wafers on pouches deteriorate in heat, and therefore you should never leave pouches in the trunk of your car. It also best not to store them in the bathroom. Heat and humidity affect the adhesion of the wafers. You would like to feel confident that there will be a firm seal when you change your pouch.

Nancy is a busy nurse with all the responsibilities of her facility but arranged to have someone cover for her there so she could take this time to talk to the group. She is very dedicated and appreciated! Thank you, Nancy!!

Items of note: The Fort Myers support Group has closed because of lack of interest and attendance. They have donated their supplies and their treasury to us. Excess supplies have been boxed up and are being donated to Osto Group for distribution throughout the United States for a cost of $3 plus shipping. Osto Group is a non- profit manned by volunteers.

Our Health Fair to be held in February will be held in the H2U facility in the Promenades. Vendors will be invited and speakers are being invited.

Our Christmas Party will be held in the Olympia Restaurant “party room” across from the Promenades on December 11th at 12noon. Members meals will be paid from our treasury up to $15. Reservations must be made through Jerry Downs at the November meeting. A white elephant gift will be part of the fun.

Although many of you didn’t make the October meeting, I want you to know that it was informative in many ways. New members had the opportunity to talk with others, and to gain the tips of care that are so important to all of you. Sharon Plath and Judi Kahejua attended their first meeting. Hopefully, they received some helpful information.

Our President, Jerry Downs, told of his wonderful experience as he was honored as a five-year survivor along with many other survivors, at Cancer Centers of America in Phoenix Arizona. They were treated royally and put their names on the tree of life. Jerry has had a rough five years through many problems of colorectal cancer and metastatic lesions in his kidneys too. Yes! It does take vigilance to catch any outbreaks along the way, and he has had many trips to the Cancer Center as they have caught any outbreaks and treated them as needed.  He is there for each of you helping you to achieve the joy that life can offer. He is often at our ostomy supply closet in Fawcett’s Wound Care Center helping ostomates find the supplies they need.

He not only has helped ostomates in need but has also worked on putting donated supplies on the shelves so needs can be filled.

This was also a special day for Penny Maki, RNET, CWS. She couldn’t make the meeting because the hospital held a retirement celebration for her at the exact same time as our meeting. Yes, our dear Penny has retired.  The years go by quickly. Hard to believe she is over 65, but that happens before you realize it. Goodness knows that she is still a youngster in my eyes. Hopefully, she will be able to join us at the meetings. Her knowledge from many years of experience benefits many already. We are all so happy for her, and for us.

 

Marie Michel RN, CWCA, CHRN, OMS has completed her study and has passed her Board Examinations to now be certified in Ostomy Care. She is working in the Wound Care Center of Peace River Hospital in Punta Gorda. She has received a scholarship from us and will try hard to make our meetings. She has much responsibility, however, and it will not be easy to get away from the Wound Care Center and the Hospital. Jill Lindsay, RN,BSN,WOCN will be working with her three days a week.

 

We were most fortunate to have Eric Lubiner DO, FACOH an Oncologist with Florida Cancer Specialists, able to come as our speaker. He had seen 24 patients this morning. Although he is a busy doctor he still takes the time to bring us information on cancer treatment.

Today he concentrated on Cancers of the urinary system. Not just bladder cancer but cancers of the Urothelial or transitional cell carcinomas. The lining of the bladder continues all the way up to the kidney. All of the areas are lined with the same type of cells called Urothelial or Transitional cells. Many years ago the only treatment for advanced bladder cancer was a very toxic drug called MVAC. It was difficult to give and very toxic. 10 years ago they found that two other drugs worked just as well without the toxic effect and they were the choice for the bladder cancer patients. There was about a 40% response rate. The tumors shrank and this was at that time the best treatment for this disease.

In the past 3-4 years, a new paragon of treatment has emerged where the patient’s own immune system is revved up and activated against cancer. The cancer cells have PD1 and PDL1 in the immune system. They are made in the laboratory to fight the cancer cells. It is called Pdcentriq. This has just been approved for use in patients who cannot tolerate Chemotherapy. The PD1 and PDL1 cover up cells so that the body can recognize the cancer cells as something bad, and then the immune system can get to work to eliminate the cancer cells. The cancer cells are killed without harming the patient. The side effects of these medicines are very different from the side effects of chemotherapy. In individuals who have immune system diseases such as Rheumatoid Arthritis, the activation of their immune system can cause a flare-up of their disease. The physician must be very careful in those patients who have immune system issues, to begin with. It is an exciting field in that it is changing cancer treatment completely, in using the patient’s own immune system to treat cancer.

 

Dr Lubiner then explained how clinical trials are conducted to be able to derive changes of medications and treatments.

There are 4 phases to clinical trials.

Phase 1 is purely looking for side effects. A dosage is given to the first 3 patients, and then an increase in dosage for the next three, and so on until patients show side effects. Then they go back to the side effect free dosage.

Phase 2 is an efficacy trial, based on how well the drug works. The individuals in this trial would all receive the same dose of medication. Each would be tested for how the tumor shrinks and how many are doing well, and how many had to switch to other treatments, how many had to go off treatment because of side effects.

Phase 3 clinical trial is what is needed to get the FDA to approve the drug. The new drug is compared to the old treatment. 100 patients may be in this study with 50 on the new drug and 50 on the old drug. They look at who does better, who lives longer.

Phase 4 is called the post-marketing trial. A lot of the drugs may work great but do even better when combined with chemotherapy. Different combinations may be used for best effect.

If the doctor thinks a patient may be a good candidate for a clinical trial he gives the patient a consent form to sign. The patient must consent in writing to participate in the clinical trial. Dr Lubiner compared this consent form to a real estate agreement where you need to read and initial each page. The consent form needs to list every possible side effect that can happen when you are on this trial. Included on this consent form is the statement that if you require hospitalization while on this trial the trial does not pay for that. Some patients are scared away by this statement when it is read.

In the history of trials many years ago experiments were conducted on prisoners or patients in mental hospitals without their consent.

It is so very important that the physician understand the consent form that Dr Lubiner attends yearly a special session to remain informed for his patients. When the many side effects are listed they are possibilities that the patient is made aware of even when the possibility may be very small.

Florida Cancer Specialists has 200 doctors associated with it. 90 are associated with the Sarah Canon Foundation Research Institute. There are 30-50 Clinical Trials being conducted at all times.

Dr Lubiner also talked about the invasive cancers that once it progresses to muscle tissue it is invasive, and when it has progressed to the lymph nodes it is then metastatic.

Drug companies do studies working with cancer cells in the petri dish and seeing what the drugs being tested do to the cells. From there they progress to animal studies, before the drug ever reaches a clinical trial.

Tests are done on cancer patients to test the CEA levels. Elevation doesn’t necessarily mean that the cancer has returned. Sometimes it will fluctulate.

We all appreciated the information brought to us by Dr Lubiner. I hope I have related it well for you. Call him if you have questions. He is so very caring! 941-766-7222

Life begins with an Ostomy(From past UOA info.)

Crazy you say? Let’s analyze. Before you were told that you would have to live with an ostomy, how often did you reflect on life? Your family? Your friends? The environment? The beauty and wonderment of a sunrise or the magnificence of a sunset? For the first time, the possibility of your brief visit to life might end. Suddenly all senses become heightened, and appreciation of staying alive and living, become important.

Think back to all the time that has been wasted when sitting doing nothing, daydreaming, arguing about nothing, putting off to the next day, and worrying about the things that never come to pass. Never does one wish more, that they could have the time to do the things that are important; to accomplish tasks, mend personal relationships, and make peace with God. Life and the meaning of life comes into clear focus, and the frivolous aspects fade out of sight.

Each person reacts differently to these realizations; some positively and others negatively. Some adjust and live. Others lament that which may never come to pass.

Since we only visit this earth once, it is important to make every moment count. A moment allowed to be wasted can never be recaptured. Some view their ostomy as a death sentence, a situation with which they cannot, or will not, tolerate. What a waste! I wonder how many of these individuals before they were told they were going to have an ostomy, stayed at home worrying if they left the house they might be struck by lightning or run over by a Mack truck? Yet, now they have been told they have an ostomy, and they fold up and stop living!

An ostomy is a ticket to live. Without it you cannot live. It gives a second chance to assess your priorities and start living the important sides of life- To enjoy each day for itself and waste not a minute. It opens the blinds and lets the sunshine in on one’s life.

As a person with an ostomy you have lots to offer others. With your insight having looked into the problem of life and death, you are able to give insight and advice to others who may undergo the surgery, to teach them how to live with an “appliance” and with the post-op adjustment and the future. Remember this is an area where you are an expert. You survived!