Monday, October 29, 2007
That is unbelievable!!!!!!!
This is like winning another lease on life.
THEY ARE GONE!!!!!!!!!!!!!!!!
I am going down to Pittsburgh on November 5th to have a check up and to have a second reading of the Scans to be sure that they read it correctly.
I also will suggest a PET scan to see if there are any hot spots they have missed with the CT scan.
I do have a scab at the original site that bleeds off and on. I would like to know why it won’t heal.
I am not out of the woods yet… but I am on the right path.
Thanks for all your help and prayers.
Sunday, October 28, 2007
Do you (or your group) operate or manage a large number of melanoma patients?
Will you personally be managing my care or will I be followed by residents / fellows ? (Post-graduate MD’s in training)
If you do not have a large experience in melanoma patients, whom do you recommend (or what center) will you send me to?
Are there any alternative surgeries / medical treatments that could be considered besides the one you are offering or suggesting ? (i.e. – what is YOUR rationale for what you are doing)
Should I consider getting a 2nd opinion if the surgery / treatment is complex or controversial?
Possible Outcomes from 3rd Doctor Visit
Agreement on treatment and plan for YOUR therapy Go and have a really nice dinner – then “just do it!” Disagree on treatment and plan Ask about 2nd opinions Ask first from YOUR physician Other resources Other major melanoma centers www.mpip.org (post your concerns)
This is not an all inclusive method for determining YOUR stage of melanoma or the ‘right’ treatment. However, this information is can be helpful for the newly diagnosed (“now what”) patient. The hope is that by giving the overwhelmed and frightened melanoma patient an approach to finding information about their disease and treatment options, they will become an empowered and active participant in their diagnosis and treatment.
Special thanks to Gertude Stein for this Summary.
Important Tip #2
Before starting any surgical or treatment plans (and ESPECIALLY in more advanced disease in which treatments maybe more controversial) – you need to understand your diagnosis and all the various options for your Stage of melanoma.
In other words, before you undergo ANY treatment, you need to do YOUR HOMEWORK and understand YOUR options before deciding with your physician (usually at a 3rd visit) what the plan for YOUR melanoma treatment will be.
Important Information You want to find answers to when doing YOUR Homework” prior to your 3rd (Treatment Phase) physician visit
What seems to be ‘consensus’ for YOUR stage of melanoma ?
Excision, sentinal node biopsy, lymph node removal, etc
What seems to be ‘controversial’ for YOUR stage of melanoma ?
No therapy, adjuvant therapy, radiation, bio-chemotherapy, etc
How do the major melanoma centers approach YOUR stage of disease ?
What is their ‘rationale’ for their suggested therapy
Are the only options for YOUR stage of melanoma ‘clinical trials’ ?
This may apply primarily to advanced stage patients who have already undergone surgery / therapies and are having recurrence of melanoma
Where to go to starting getting the information YOU need
Websites for Melanoma Information
www.nccn.org – National Comprehensive Cancer Network
www.Cancernet.nci.nih.gov – National Cancer Website
www.cancer.gov/cancerinfo/wyntk/melanoma – NCI site
www.melanoma.org – Melanoma Research Foundation
www.mpip.org – Melanoma Patient Information Page
This list does not represent an endorsement of any given website or a complete list of all available resources for melanoma patients
How to approach and organize the information YOU obtain
Make a list of the various treatment options for YOUR stage of melanoma
Compare / contrast how the large melanoma centers treat YOUR stage of disease
Look for consensus in their treatment options
Determine how the various treatment options could affect your life
(ie. Determine side effects of treatment, effect on family, work, lifestyle you are use to)
Make a ‘wish-list’ based on the information / decisions you have reviewed and made
YOUR ideal treatment plan (medical / surgical and length)
YOUR ideal place the treatment will take place
YOUR ideal follow up
YOUR ideal outcome
Prepare this and your list of Questions for your doctor and take to the appointment with you (follow Tip #1 as before too). As this appointment is to talk about YOUR treatment plan – warn your doctor that this will NOT be a short appointment (so they may want to make it the first or last appointment of their day!)
It determines if you need a surgical approach to your melanoma
It determines if you need further testing during your surgery (sentinal node biopsy)
It determines if you will need adjuvant therapy after surgeryIt determines if surgery is not indicated and other therapies (gamma knife / bio-chemotherapy etc) is needed in the place of surgery
Important Tip #1
As it is most likely that you have been in some ‘shock’ given the discovery of melanoma, it is important to bring another person with you to take notes on what is said or suggested during this 2nd physician visit. These can then be reviewed after the visit.
Important 2nd Visit (Diagnosis Phase) Questions for your Physician
What is MY Stage of melanoma ? (and what does that mean)
Given my Stage of Melanoma, what are you recommending will my 1st treatment (or surgery ) be?
Will my surgery / medical treatment be done here or at another center?
Simplified Melanoma Staging / Treatment Plan ChartStages of Melanoma:
Stages of MelanomaTreatment Plan(s)
Stage O (in situ) ExcisionStage I(primary < 1mm) Excision (Some centers will doCXR +/- lab work)
Stage II (deeper invasion) Excision + SNB? * Adjuvant therapy
Stage III (LN involvement) * Excision? * No therapy? * Adjuvant therapy
Stage IV (Diffuse melanoma) * Depends on site(s) Involved? * Surgery vs. Biochemo,? * Radiation, gamma knife, etc
* Note that all the these therapies are somewhat controversial as to which is the “RIGHT” therapy for advanced stage melanoma patients.
1. You have been given a diagnosis – NOT a death sentence
2. Melanoma survival statistics describe a ‘group’ of similar patients…. but they may have NOTHING to do with YOUR chance of survival
3. In advance Stage melanoma, there is NO one “RIGHT” answer (or “BEST” treatment) option for your melanoma
4. The BEST melanoma patient is an ACTIVE PARTICIPANT in his or her treatment (not a PASSIVE RECIPIENT)
"The ‘phases’ that most melanoma patients seem to go through (in this author’s opinion) are:
DISCOVERY, DIAGNOSIS and finally TREATMENT. These ‘phases’ very closely linked to physician visits when the information about melanoma diagnosis and treatment are shared with the patient. While superficial melanoma treatment is fairly straight forward, more advanced stages of melanoma (again in this author’s opinion) require more physician and patient interactions (“visits”) especially in the DIAGNOSIS and TREATMENT “phases”.
The following Question / Answer format will help you find the information you need about your diagnosis and treatment as well as provide you with links to important sites for more information on melanoma.
Important 1st Visit (Discovery Phase)
Questions to ask your Physician
Why do you think I have melanoma?
What is MY melanoma Stage ?
(Has it been determined?)
Do I need more tests to determine MY Stage ?
If I need more tests – what tests are they ?
Possible Tests that you may undergo:
CT Scan - looks for melanoma in abdomen (bowel + liver) and chest (lungs and lymph nodes)
PET Scan – looks for ‘metabolically active’ areas in the body which may be melanoma
MRI Scan – Used (primarily) to determine if the brain has any melanoma involvement
Bone Scan – uses radioactive material to find if any bone involvement with your melanoma
Blood Work – non-specific indicator that melanoma maybe involved in several organ systems
Sentinal Node Biopsy – looks for involvement of lymph nodes that melanoma may spread to from its primary siteUltrasound – use of sound waves to try to make a diagnosis of melanoma (usually in solid organs)
Simplified Staging Guide to Melanoma*
In situ melanoma
No ulceration (<>Stage II > 4 mm depth (with or without ulceration)
Stage III- >Lymph node involvement
Stage IV- >Distant mets to skin, subcutaneous or lymph nodes; or mets to any visceral Organs (lung / liver / brain / bone / etc)
* American Joint Committee on Cancer Staging System for Cutaneous Melanoma J Clin Oncol 2001; 19:3548-3636. Lippincott Williams & Wilkins.
Friday, October 26, 2007
1. I needed a support group! I told all our friends and family about my situation. I wasn't looking for pity. I was looking for any assistance they might be able to give me, prayers, Internet, medical advice, tell me and my wife that we would be ok. Help if we ever needed any. You are our angels. And we have lots of them. Melanoma is not something you should hide under a basket. Tell the people that are important to you.
2. The Internet is FULL of treatment possibilities. It's important that you understand the medical jargon. Then you can begin to understand the treatments that are out there. There are a number of melanoma and NCI sites you should be following frequently. I'll be happy to share what I followed and picked up on.
3. It's important that you have an oncologist who sees you as a partner in finding and following a course of treatment. This is your life at stake. How you feel and what course of action you think is best for you is most important. If you do not have this kind of oncologist, have a heart-to-heart with him/her, be blunt and make your feelings known. If they cannot work this way - CHANGE ONCOLOGISTS! I did.
4. Select the program of treatment you feel is best for you and sail forth into it. Do not look back! You gotta believe in your plan.
5. At the same time, be on the lookout for a "Plan B." What will you do just in case Plan A doesn't work?
6. I can't say enough about being at peace within yourself. Our bodies are all one huge complicated organism. And all the parts communicate with one another. If one part is under duress, it affects the rest. I really believe my cancer was caused by me getting stressed out about work for a years, lowering the efficiency of my immune system. Whatever reduces your stress level - running, yoga, tai chi, reading, praying, listening to music - do it often. I'm not a doctor, but my experience tells me being at peace is critical to healing.
7. Last... Whatever you believe will happen to you... Probably will. If you believe you will die - you probably will. If you believe - I mean really believe - you will live. You have a good chance of living. This is not pie-in-the-sky believing. It's the hard-nosed belief that you have taken every step you can take and are ready to take others if necessary.
Melanoma is not for the faint of heart. You gotta want to live and do whatever is necessary to live to have a chance. And even that may not be enough...
What good have I gotten from melanoma?
What a crazy question! Good - from melanoma?
Every day is a fantastic gift. A day I didn't think I would get. I can get goose-bumps at a sunrise! Seeing my family grow - seeing my nephews, nieces, friends and family... I remember the days I never thought I'd see, these things. It colors, everything about the world. I'm a huggy sorta guy by nature. But getting and giving hugs is a gift of immeasurable worth to me now. Time is so precious to me.
No one ever promised me tomorrow... I guess I always knew that - but it didn't mean anything like it means now, with melanoma. All we have is today. If I really believe I have only today, how would I live it?
Monday, October 22, 2007
Sunday, October 14, 2007
I ask you to prayer for Bill and his family, that their hurt turns into comfort knowing that Bill out of pain and in the Almighty Hands looking down on them. Bill was truly a family man and will be missed by all, but his memory will live forever.
Greetings to One and All
It was he, who showed me How to live and give back. He was wise beyond his years.
Jimmy and Dee
My Profile as of 2009
- Last July (2005)I was riding my bicycle to work at the Eastman Kodak Research Labs about 3 miles from home. I was wearing a knapsack to carry my things to and from the labs. I started noticing an ache on my back. So I decide to go to the dermatologist. To make the long story short, it was cancer. I knew from my research that I would be needing adjuvant therapy. So I started communicating with Sloan Kettering, University of Pittsburgh Cancer Center, and a couple of others including the Wilmot Cancer Center at Strong. I realized that by telling my story, I might help someone else out there in a similar situation. So to all who are linked by diagnosis or by relation to someone with melanoma, I wish you well. Stay positive, read as much as you can (information helps to eliminate the fear associated with the unknown), and live for today, as no one can predict what tomorrow may bring. Jimmy B. posted 12/15/08
Only your physician/Oncologist can make medical decisions and treatment plans that are appropriate for you. But, An Educated Consumer is a Smart consumer.
As Dr. Casey Culberson Said:
"The BEST melanoma patient is an ACTIVE PARTICIPANT in his or her treatment
(not a PASSIVE RECIPIENT)"
Melanoma and the “Magic Bullet” (Monoclonal Antibodies)
It is 33 pages long and may help you in your quest for the Yellow Brick Broad. Just to let you know it is only the first draft. Revisions are sure to come. I wanted to get it to the people that need it the most, the Melanoma Patients.
So, where does Interluekin-2 (IL-2) come into play? According to Byung-Scok et al and recent reports, IL-2 is not needed for developmental CD4+ CD25+ Treg cells in the thymus but does play an important role in the maintenance and function in the peripheral.18 Peripheral is defines as secondary system outside the bone marrow and thymus. It entails the site of antigen, immune system interaction. IL-2 is required for the peripheral generation of Tregs based Abbas’s and colleagues research.19
IL-2 prevents the spontaneous apoptosis of the CD4+ CD25+ Treg cells. It has been reported that patients with multiple advance-stage tumors have elevated levels of Tregs within the tumor microenviroment.20 Interluekin-2 is the survival factor for CD4+ CD25+ Treg cells.21 If the addition of IL-2 is on or before the maximum propagation of the CD4+ T cells, the Tregs population can increase 5-fold in a 96 hour period based on certain growth mediums.
By controlling the addition of the endogenous IL-2, one has a knob to turn and can lead to the control of the expansion of the Tregs. When you combined this control with the anti-CTLA-4 blockage, you can shift the balance of the immune response.
Now here is the catch. The maintenance and function of the CD8+ T-cells require CD4+ cells which secrete IL-2. So we don’t want to deplete the CD4+ cells, we want to control the expansion of the Tregs which are a subset of the CD4+ cells. It has been postulated by some researchers that the Anti-CTLA-4 blockage also suppresses the Treg function in a different mechanism. By using IL-2 as the rate limiting factor, we can suppress the CD4+ CD25+ Treg cell expansion by controlling the concentration and timing of the Inerluekin-2 at the tumor microenvironment.
The Interluekin-2 plays another role in this Melanoma Maze. In a study by Janas et al, Il-2 increases the expressions of the perforin and granzyme A, B and C genes in the CD8+ T-cells. This increase expression causes the CD8+ T-cells to mature into Cytoxic T Lymphocytes (CTLs). The exogenous IL-2 is required for the granzyme proteins. As stated previously, CTLs have cytoplasmic granules that contain the proteins perforin and granzymes. A dozen or more perforin molecules insert themselves into the plasma membrane of target cells forming a pore that enables granzymes to enter the cell. Once in the tumor cell, these enzymes are able to breakup (lyse) the cell and destroy it. This is the beginning of the end for the cancer cells. The tumors begin to shrink and the rest is history,
On the other hand, prolong therapy with Il-2 can result in causing apoptotic death of the tumor- specific CD8+ T-cells.23
Clearly in a clinical setting, timing, dose, and exposure to these drugs play a major roll in the immunotherapy, and can have dramatic effects on the outcome.
All it takes is that one magic bullet to start the immune reaction..
Melanoma And The Magic Bullet (Monoclonal Antibodies)
Public Service Announcement
"We continue to see a high rate of clinical responses in our cell transfer immunotherapy treatments for patients with metastatic melanoma", Dr. Rosenberg said.
"We are actively seeking patients for these trials and any note of that on a patient-directed web site would be appreciated."
If you would like to apply for his trials, here is the website and information.
Dr. Rosenberg's information
Dr. Rosenberg's Clinical Trials
The Melanoma Research Alliance has partnered with Bruce Springsteen, the E Street Band, and the Federici family to alleviate suffering and death from melanoma. Please view Bruce Springsteen’s public service announcement inspired by Danny Federici. Danny was the E Street Band’s organist and keyboard player. He died on April 17, 2008 at Memorial Sloan-Kettering Cancer Center in New York City after a three year battle with melanoma.
Source Fastcures blog
Join the Relay for Life!!!
Dear Family and Friends,
I’ve decided to take a stand and fight back against cancer by participating in the American Cancer Society Relay For Life® event right here in my community! Please support me in this important cause by making a secure, tax-deductible donation online using the link below.
To donate on line now, click here to visit my personal page.
Jimmy B AKA Melanoma_Missionary
Relay For Life® is a life-changing event that brings together more than 3.5 million people worldwide to:
CELEBRATE the lives of those who have battled cancer. The strength of survivors inspires others to continue to fight.
REMEMBER loved ones lost to the disease. At Relay, people who have walked alongside people battling cancer can grieve and find healing.
FIGHT BACK. We Relay because we have been touched by cancer and desperately want to put an end to the disease.
Whatever you can give will help - it all adds up! I greatly appreciate your support and will keep you posted on my progress.
Keep the Fire Burning!!!
Signs of Melanoma Carcinoma Skin Cancer
Delcath Systems Granted Orphan-Drug Designations for Cutaneous and Ocular Melanoma
Delcath is actively enrolling patients in a Phase III clinical trial testing its proprietary drug delivery system, known as Percutaneous Hepatic Perfusion (“PHP”), with melphalan for the treatment of ocular and cutaneous melanoma metastatic to the liver.
This NCI-led trial is enrolling patients at leading cancer centers throughout the United States. Commenting on these orphan-drug designations, Richard L. Taney, President and CEO of Delcath, stated, “These favorable designations are important steps in our efforts to secure Delcath’s commercial position upon conclusion of our pivotal Phase III trial for metastatic melanoma. We remain steadfast in our commitment to become the leader in the regional treatment of liver cancers and we continue to enroll patients in this study, and advance our technology and the promise that it offers to patients with these deadly forms of melanoma and other cancers of the liver, all with limited treatment options.”
Orphan drug designation, when granted by the FDA’s Office of Orphan Products Development, allows for up to seven years of market exclusivity upon FDA approval, as well as clinical study incentives, study design assistance, waivers of certain FDA user fees, and potential tax credits.
Current Trial Centers
Phase I Study of Hepatic Arterial Melphalan Infusion and Hepatic Venous Hemofiltration Using
Percutaneously Placed Catheters in Patients With Unresectable Hepatic Malignancies
James F. Pingpank, Jr., MD, FACS
Associate Professor of Surgery
Division of Surgical Oncology
Suite 406, UPMC Cancer Pavillion
5150 Centre Avenue
Pittsburgh, PA 15232
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Call For Melanoma Patients!!!!
Dr. Rosenberg Has a New Clinical Trial.
Our latest treatment has a 72% objective response rate with 36% complete responses.
We are currently recruiting patients for our latest trial.
Is there some way to post this “Call for Patients” on the web site?
Dr. Rosenberg's Clinical Trials
(For a copy of the research paper.. see My Shared files)