November 2015

CHARLOTTE COUNTY OSTOMY SUPPORT GROUP
Website  HYPERLINK “http://www.ccosg.orgwww.ccosg.org
A 501(C) (3)nonprofit organization (Tax deductible donations)
Officers
President: Jerry Downs 629-7568……… Email:  HYPERLINK “mailto:fldowns@embarqmail.comfldowns@embarqmail.com
Vice President: Bonnie Coker: 423:8542 … Directors: Jan Doner 914-9063
Secretary: Lovelle Meester: 637-8167            Lorelie Godbout603-474 9063
Treasurer: Karen Chalfant:   623-0088           Joan Huber……941-575-8708
Committees
Newsletter : Gloria Patmore RNET (Retired) & Karen Chalfant
Programs and Education: Jerry Downs, Penny Maki RNET,CWS 205-2620
Gloria Patmore RNET (retired) Nancy Frank RN,BSN,CWOCN: 629-5118
Jill Lindsay RN,BSN,CWOCN 629-1181
Visitation: Penny Maki RNET CWS, Nancy Frank RN,BSN,CWOCN
Library: Karen Chalfant
Products: Bonnie Coker
Professional Advisors:
John P. Rioux MD, F.A.C.S. Penny Maki RNET,CWS, Jill Lindsay,RN,BSN,CWOCN
Nancy Frank RN,BSN,CWOCN
Next Meeting: Tuesday November 10, 2015  2PM
***South Port Square Gables East 2nd floor alcove***
23023 Westchester Blvd,
Port Charlotte
Speaker: Christiana Harrington Registered Dietitian and Psychotherapist
Chance Drawings: Panera Bread $20, Olympia $10, Golden Corral Buffet(2)
Winn Dixie $20, 6” Subway

Charlotte County Ostomy Support Group newsletter for November 2015

***Note that this month we will be meeting at Gables East 2nd floor alcove of South Port Square***

At the October meeting a vote was taken to again have our Christmas Party at the Golden Corral in Punta Gorda. Details will be revealed in the November meeting.

President Downs presented Fran Wilson, Roger Wilson’s widow, with a plaque commemorating the care giving she was able to give to Roger through the years, and recognizing the importance of the caregiver.

Our speaker today was Eric Lubiner, D.O. Oncologist with Florida Cancer Specialists.
He introduced himself. He was born and raised in Northern NJ. He studied Medicine in Maine, and owns a summer home there now. He served his residency in Morristown NJ and he served his Oncology and Hematology Residence in Rutgers in New Brunswick, NJ.
He has been in Florida with Florida Cancer Specialists since 2000. They had started the practice on Caring Way behind Fawcett Hospital and then built their building on Edgewater and Bayshore Rd in Port Charlotte. The practice has satellite offices in North Port for Oncology and Hematology. They are looking forward to expanding further in the next few years.

What is being done in treatment today of both colon cancer and bladder cancer. Treatment is constantly changing. The idea is to kill the cancer cells without harming the normal cells.. Chemotherapy is becoming used less as advancements are made.

Colon cancer treatment when I started 15 years ago was based on whether there was lymph node involvement or not. If there was involvement 5FU was the drug given. They also had Lucophorin and Avastin to use as well. They were given 5 days a week for a period of 4-6 weeks. This was all we had for 20 years. A new drug was found in more recent years and could be combined with 5FU as needed. Another medicine also came out and showed much improved survival.
Then something interesting happened. A doctor in Massachusetts came up with the idea that if the cancer cells cannot get a blood supply they will die because they can’t get food.
Vascular Endothelial Growth Factor to block the signal to blood cells. They work well when used with Chemotherapy. This is being used in Colon cancer, breast cancer and other cancers as well. In stage 4 colon cancer and in returned colon cancers, Avastin is given with their chemotherapy. This is an antibody. The next generation of the drug has been approved. Called Cyramza, it is used with other chemotherapy drugs as needed.

Goloada is a pill form medication of 5FU. It uses an enzyme that exists inside the colon cancer cells. It doesn’t give the side effects of 5FU but turns into it inside the cancer cells.
When people have advanced cancer they may not be able to cure the cancer but treatment can prolong their lives. It may give a prediction of 2 more months of survival, but this isn’t a true picture of what can happen for the individual. Some may live several years more on the medication, maybe even 4-5 years more. For some there may be no benefit at all and they then are taken off the medication and receive a different treatment.
Immunotherapy
Bladder cancer and colon cancer are being given this therapy. Your own immune system is geared up to fight the cancer. Oncologists have always wondered: Why wasn’t the body taking out the cancer cells in the same way that it fights viruses and bacteria. One reason is that cancer cells have a molecule that prevents them from being seen by the immune system.
PD-1 and PDL-1 are molecules that are on the surface of most cancer cells
The cancer cells can grow because they are undetected by the immune system. They have found a way to block the PD-1 and PDL-1 and fire up our own immune system to attack the cancer cells. They have been approved in Melanoma since they approve in the rarer cancers first, and recently in non-small cell lung cancer cells, and just last week approval for the non squamous form of non-small cell lung cancer. These are intravenous given every 2-3 weeks so they do tie down the patient.
There are little to no side effects!

Yervoy is another new medicine being used to treat Melanoma. Another target CTLA-4 and another antibody.
Another medication that came out about 2 years ago, Styvarga, blocks a signal inside the cancer cells called Epidermal growth factor. We have had antibodies against these for the past couple of years. New medications work inside the cell to block the cancer. It does have some side effects such as nausea and diarrhea but is generally tolerated fairly well.
Exciting things are taking place in cancer treatment.

Questions and Answers:
Lymphoma comes in 2 categories: Hodgkins Lymphoma and non Hodgkins Lymphoma, which is divided into 42 sub types. Low grade lymphomas people can live with for years. They can succeed in getting the lymphoma into remission, but don’t succeed in a cure.
In the high grade, lymphoma can cause many problems if no treatment is given. With the use of the available chemotherapy they can successfully treat 85-90% of them.
There is a new antibody out for treatment of Anaplastic large cell Lymphoma that brings that brings a chemotherapy molecule bound to the antibody right to the cancer cell and kills the cancer from the inside, and there are few side effects. Treatment has improved.
For the lymphoma that recurs they can treat with a Radioactive drug that needs to only be given yearly as against more frequent doses otherwise.

Bendamustine came out of East Germany for treatment of certain lymphomas with very few side effects. New drugs are constantly being discovered.
A normal cell lives its life and then dies. Treatment for cancer targets cancer cells because they continue to grow and don’t die. Treatment targets this fact.
In brain cancer it is not the brain cells, but supporting cells in the brain where the cancer occurs.
White blood cells multiply rapidly. We actually turn them over 3 times a day. Lining of your gut turns over about every 8 days. Hair follicles grow rapidly. Chemotherapy often causes hair loss. Mouth cells turn over rapidly and which is why chemotherapy causes mouth sores.
Your blood count goes down because bone marrow cannot replace the cells rapidly. Every cell in the body does turn over but the cancer cells do not. This is the reason that cancer therapy drugs have their side effects.
Skin Cancer
Three types: Melanoma is the most serious because it is the one most likely to metastasize.
Squamous: Can metastasize, but uncommon.
Basal cell doesn’t metastasize, but can need to be removed.
When surgery is done to remove any skin cancer the doctor is looking for clean margins on the pathology report to be certain that all of the cancer has been removed.

The cost of Cancer Treatment:
Developing new drugs, and all that is entailed in bringing them to use, comes with a high price. The consumer needing these drugs finds coverage through Medicare and Medicaid and private insurances. Drugs in Canada are cheaper but are hard to get. Most medications are now Generic so the cost is not terrible. Canada has national health care and the cost of drugs is lower. Our government is also at fault for the cost of drugs since they are willing to pay the price. Reimbursement is often given when the physician writes a letter explaining his rationale for prescribing the medication. There have been many individual challenges for patient coverage of medications, and the life span for each individual is brought into the picture when immediate coverage is not available. It is a circle as to how much is charged for an individual medication. When reimbursement is available the charge will be as high as the drug company will find that will be paid for that drug.
When a drug has been discovered and men were eager to receive this particular drug for treatment of Prostate cancer they organized a protest at a large meeting in Chicago in order to have it approved. The protest was held at the McCormick Center in Chicago where there are 2 parts to the center with a bridge in between. The protest took place on the bridge. The drug did get approved but it didn’t prove to be as helpful as it had been hoped. It is a vaccine. The patient needs to go to a blood bank and give a sample of their blood. It is sent to Atlanta where it is tagged with immune cells. It comes back and is injected into the patient. It is supposed to make the prostate cancer patient live longer. Each dose is given three times two weeks apart and each dose cost $30,000. An extremely expensive treatment for very little benefit with extending life for about 2 months. In some people it does work. In the practice of Oncology they try to be cognizant of the cost of treatment., but they are advocates for their patients.
Clinical trials are particularly important to the Oncologists. They are looking for what is the next best thing. They have 30-40 clinical trials running looking for what is the next best thing. Every clinical trial must be registered and can be found on the Web Site. (Clinicaltrials.gov) put in your disease and what state you live in. Your doctor will help you sort through them.
Dr Lubiner was much appreciated by all attending. He is available for any cancer related questions through his Email:  HYPERLINK “mailto:elubiner@flcancer.comelubiner@flcancer.com or by calling 941-766-7222

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