Dear friends, it is been a long time since I have been active on this blog. It is certainly not been my choice. The problem was on October 2 I had a very severe accident on my bicycle while training for the second annual ride to raise money for the Cecile and Ken Youner fund for Cancer research. I basically got caught in some debris went head over the bicycle and hit headfirst into the ground. This caused an intense contusion to my cervical spinal cord and thus I have been out of commission until this very time. I now will try to return to some of my work to help all of those with kidney cancer out there. If at the same time I can help those with disabilities understand that they can do work even with this those disabilities I will even be happier. Thus I hope this didn’t be only the first of my blogs. I have had to stop my treatment for kidney cancer because of my severe injury. This of course is a great disappointment to me. But I am doing my best to continue to fight on and do what I can with the time I have left to help those like me in the kidney cancer community and now in the New World disability. I hope I can continue working on the a core list and help those patients and continue to answer questions about kidney cancer. I will continue in the fight and I look forward to communicating further with all of my great friends out there in the world fighting kidney cancer.
on 10/2/10 i suffered a freak accident while riding my bike and fell and had severe cervical spinal cord trauma. i almost died but am now at Mt Sinai hospital spinal cord rehabilitation unit. the last month has been hellacious. my beloved daughter without whom I could not have survived is writing this for me. i have made some progress in the past week so I am trying very hard to be positive but it is very difficult. i dont know when i will be able to post next but i truly miss talking to all my fellow kidney cancer survivors. because of the trauma i have had to stop my chemotherapy and i am not sure what will happen. hopefully i will be able to report back with better news soon.
Item #1-I have joined with Lance Armstrong and Livestrong to make my Spokes of Hope:A cancer advocacy ride on 10-10-10 a part of Livestrong Day. Please see http://www.livestrong.org/Take-Action/LIVESTRONG-Action/Livestrong-Day-2010/Event-Details?EventId=3850
Item #2 As more and more people are realizing that integrative medicine-the use of complementary treatment such as acupuncture,yoga,herbs and other supplements) can be important for cancer patients this article on red clover from the Integrative medicine Dept. at Memorial SKCC (http://tinyurl.com/38fjkr5) in NYC notes that some supplements may not only not work but can be harmful. So the message is-if you’re a cancer patient using complementary medicine be sure you discuss it with you oncologist and do some research on it yourself-I would trust a center like Memorial SKCC . MD Anderson also has a complementary medicine site see http://www.mdanderson.org/education-and-research/resources-for-professionals/clinical-tools-and-resources/cimer/index.html
The new website of IKCC-go to http://www.ikcc.org is now up and running . I am extremely proud to be a member of the steering committee of this new organization. We are tying to bring kidney cancer advocacy to the many parts of the world where there is none.
I have been extremely busy getting ready for the Spokes of Hope:A Cancer Advocacy ride that I am leading on 10-10-10. So my blogging has been limited. Once the ride is over I plan on continuing my review of treatment for kidney cancer with the new targeted therapies.
The ride is in memory of my beloved wife, Cecile, who died of acute leukemia while battling stage 4 breast cancer in 2008. All contributions will go to researchers doing pioneering research which will lead to a cure for kidney cancer. see http://www.ckyfcr.org for info. on the ride and I hope that everyone will support our fund raising
I am pleased to say that I was back on the bike today. I did have some soreness in my head in the 4 spots where the screw were inserted into my skull for the gamma knife. Overall the procedure was simple and not painful. This is a tremendous advance for people with brain mets from various types of cancer. It should be done earlier and not later as it is easier to treat smaller lesions-below 1 cm is best but larger lesions and multiple mets can be treated during one session.
My ride today was to check up the NY city part of the Spokes of Hope:A Cancer Advocacy ride that I am hosting on 10-10-10. The ride is in memory of my beloved wife, Cecile , who died of cancer in Nov 2008. 100% of all funds collected go directly to cancer researchers. As medical director of Action to Cure Kidney Cancer I evaluate research for grants. That was I know where the money goes and what the goal of the research is. Please go to http://www.ckyfcr.org for information on the ride. If you cannot do the ride you can order a striking original 2010 Spoke of Hope cycling jersey or make a contribution.
International Kidney Cancer Coalition (IKCC) Sponsors First International Kidney Cancer Patient Conference
New York, NY (PRWEB) September 25, 2010 — The International Kidney Cancer Coalition’s first Annual Conference, “Expanding Circles”, took place from September 10-13, 2010 in Frankfurt, Germany.
IKCC is a cooperative effort to help foster the development of independent kidney cancer advocacy throughout the world while encouraging each country to develop its own kidney cancer advocacy organization that is unique to its local conditions. IKCC feels that only through the development of local support organizations, will kidney cancer patients receive the kind of cancer advocacy that will actually work for them. IKCC feels that no single kidney cancer advocacy/support organization, no matter how dedicated it is, can adequately support people from so many different cultures.
Present at the meeting were cancer advocates from 5 continents. The countries present represented vastly different cultures, values, and medical delivery systems. IKCC recognizes and respects this diversity and feels that it will become one of its strengths. IKCC is a network of independent kidney cancer patient support groups from around the world. It is patient driven and patient focused. IKCC has a strong presence in North America with Action to Cure Kidney Cancer (ACKC), the Association of Cancer Online Resources (ACOR), and Kidney Cancer Canada (KCC) represented on the IKCC Steering Committee and Cancer Care USA participating in the conference itself. All have been active advocates for kidney cancer survivors. Some of the members of the steering committee are actively battling stage 4 renal cancer (kidney cancer). This gives IKCC a unique perspective as to the needs of people actively fighting metastatic kidney cancer.
The meeting agenda for the Annual Conference was quite comprehensive. IKCC started with a “kidney cancer for ordinary people” session, run by advocates themselves. IKCC feels that the strongest patient advocate is one with a good understanding of kidney cancer. Following this session, the basics of starting a patient advocacy group (PAG) was covered, and we reviewed the steps needed to develop an independent national PAG.
IKCC acknowledged the need for a Code of Conduct that, while recognizing each country’s unique laws, will also follow international standards. IKCC recognizes and follows a completely transparent and ethical Code of Conduct, which can be found on our interim website,www.IKCC.org. Among other things, the Code governs our relationship with industry. IKCC requires that all funding for patient advocacy groups be unrestricted, and that there be no influence on IKCC policy by pharmaceutical companies. Another session stressed the necessity for keeping all patient information secure and totally private, and we heard from a lawyer who specializes in medical and health law about ethical practices for PAGs and how to safeguard patient information.
IKCC heard from PAGs from different countries including India, The Netherlands, Poland and Nigeria. It immediately became clear that there are many cultures with differing value systems with disparate access to medical care. This reinforced IKCC’s view that kidney cancer advocacy must come from national kidney cancer PAGs familiar with their own culture. No one organization can understand the challenges of the vastly differing countries around the world. IKCC will help each group to be independent, to grow and flourish within their own environment.
A number of scientific sessions were held where presentations were made by experts in kidney cancer. Contributors included Dr. Thomas Powles from the UK, Dr. Michael Jewett from Canada, Dr. Eric Jonasch from the US, Dr. Kumar Prabhash from India, and Doctors Jutta Hubner and Victor Grunwald from Germany. Topics included new targets and pathways of treatment, upcoming trials, tumor banks, and registries, complementary therapy, dealing with the side effects of the current treatments used for metastatic cancer, and patient participation in clinical research.
With the role of the internet in all aspects of medicine and the emergence of the “e-patient” and “e-doctor”, IKCC had sessions on utilizing the internet to help educate patients and future advocates. The impact of social media was noted as a powerful force for patient advocacy groups.
We finished with a round table discussion of all attendees. The conversation was animated and energizing. IKCC will strive to be a collaboration of kidney cancer organizations on a global level with a goal to improve the lives of kidney cancer patients everywhere. We welcome every organization that has an interest in kidney cancer advocacy and support, and will continue to extend an open invitation to all such groups to become a part of our international network. IKCC also welcome individuals who are motivated to initiate kidney cancer support groups in their own countries.
IKCC intends to be focused yet broad, open to divergent views yet directed, individual yet collaborative. The goal is clear. A collaborative effort toward the betterment of kidney cancer patients worldwide.
Kenneth D. Youner MD
IKCC Steering Committee
Action to Cure Kidney Cancer
IKCC Steering Committee
Action to Cure Kidney Cancer
Yesterday I had my gamma knife radio-surgery for my brain metastasis from my clear cell kidney cancer at MD Anderson Cancer center in Houston Texas. It was a breeze. Gamma knife is an approach where high dose radiation is given to a single area (or multiple single areas) in the brain at a single session. A specialized MRI-called a volumetric MRI gives a three-dimensional view of the grain lesions (s),. The beams of radiation are focused on the abnormal tissue. Each of the individual beams provides a relatively small, harmless dose of radiation yet, when the beams converge on the target, the radiation is very powerful. I had a lightweight headpiece, made of titanium (just like my bike frame) screwed into my skull under local anesthesia. I only felt the sting of the local anesthetic going in. This was to make sure that my head did not move during the radiation treatment. I was able to eat while I had the head-fame on as I was waiting for treatment to begin. Gamma knife is one of 3 basic types of stereo-tactic radio-surgery that can be used to treat brain mets. The others are
– Linear accelerator (LINAC) machines, found in many area around the world. They deliver high-energy x-rays, also known as photons. The linear accelerator can do radiosurgery on larger tumors in a single session or during multiple sessions, which is called fractionated stereotactic radiotherapy. There are manufacturers make this type of machine, which have brand names such as Novalis Tx™, XKnife™, and CyberKnife®.
Proton beam or heavy-charged-particle radiosurgery
Each system of treatment has advantages for certain types and location of lesions. More detailed information can be obtained on http://www.radiologyinfo.org/en/info.cfm?pg=stereotactic
With the large number of metastatic sites that can be treated with the gamma knife (another patient being treated the same day as I was being treated for 20 brain mets from lung cancer. His treatment took 4 hours mine took 30 minutes) I would highly favor using this kind of radiation for brain mets over whole brain radiation. As the major dose of radiation-I had 20Gy to each of 2 lesions-is directed in a 3-d conformational fashion-most of the brain is spared a major dose of radiation. Thus side effects, such as neurological changes, are less than when using whole brain radiation (WBR). I will have an MRI in one month to see what response I have had to the gamma knife. If I develop new brain mets than I can have additional radio-surgery treatments as needed. This is another advantage over WBR.
I was able to go back to my hotel near MD Anderson after the treatment. Today I feel fine with only some soreness at the sites of the screws that were placed into my skull. I made sure that I have no loose screws left! I have included a gallery of pictures from my gamma knife session. I thank my fellow patient and my radiation oncologist for allowing me to use their pictures.
<img src="https://drkens.files.wordpress.com/2010/09/dscn16712.jpg?w=300" alt="" title="titanium frame for gamma knife" width="300" height=”214″ class=”alignleft size-medium wp-image-210″ />