This video come from CNETS Singapore and its due to Bill Claxton, and the organization
and hard work! Its people like Bill who are helping to make a difference in this disease
worldwide. If you ever see him in one of the conferences, make sure you tell him thanks
for his tireless work (he is a patient himself) in NET disease!
I owe him for helping me during the time I was searching for options AND DYING FROM THE CANCER. He responded to my email right away mailed me with information on how to contact Bad (don't say Bad, say BAAAAAAAAd) Berka (BEDDD R KA)) and Dr RichardBaum.
Without his help, I have no idea what I would have done...soaked in a tub of hot water, taken aspirin and black raspberry powder I guess....... Thank you Bill with all my heart, and what was left of it (I pray this damn carcinoid has not affected it yet)!
This shows how technology and leveraging it is helping people around the world! A USA patient, sees a conference presentation on PRRT given n Germany video, taped in Singapore during their conference, by a German Physician, and within weeks I have a schedule For scanning and treatment! In May I am getting treated with the BEST CARCINOID SYSTEMIC OPTION there is NOW!
The world is getting very small and the Internet has made those of use with a rare disease better off and able to fight!
Acc s20smm2367
LINK BELOW IS THE VIDEO_ CUT AND PASTE ON YOU BROWSER ON TOP_ SEE IT TWICE TO GET THE FULL MEANING! YOUR J A W WILL DROP WITH THE PRESENTATION AND IF YOU ARE TRYING TO FIND A SOLUTION TO A PROBLEM WITH RESPECT TO THE DISEASE, YOU HAVE STARTED ON THE RIGHT PATH.
GREAT THING ABOUT IT IS I NOW HAVE POSTED ON THIS BLOG
ADDRESSES
PICTURES OF TREATMENT
STUDY UPON STUDY INFORMATION
APPEAL INFORMATION FOR INSURANCE- LAURIE TODD BOOK AND RADIO POD CAST
ADVICE ON LOGISTICS TO BAD BERKA AND TRAVEL AND HOTEL INFORMATION
AND JUST ABOUT ANYTHING ELSE YOU NEED TO GET IN TOUCH AND CONNECTED WITH THIS TREATMENT. THERE ARE OTHER LOCATION SO DON'T THINK THIS IS YOUR ONLY OPTION. IT JUST HAPPENS TO BE THE ONE I WENT TO. I DO HAVE A WEB LINK TO ROTTERDAM (MOST OF THE LOCATIONS DO NOT HAVE A WEB SITE SO ITS HARD TO GET INFO, EVEN FROM US DOCTORS)
NET, YOU NOW HAVE THE INFO IF YOU NEED IT, USE IT AND GOOD LUCK.
START BY LOOKING AT THE VIDEO, ALSO SEARCH FOR UALBERTA PAPER STUDY THAT I HAVE AS A LINK AND READ THAT.
LEARN, THEN IF YOU NEED BRING TO YOUR MD AND TALK ABOUT IT WITH THEM. REMEMBER, YOUR MD IS THE KEY!
gold! ahead...:) start here when i use the works "empower yourself"...this is a rare and unknown disease and there are many many many options and one can take many ,many paths to stay alive LONGER with it. I have chosen to take control and do it on my own terms, with the help on brilliant MD;s here in the US and the world and leveraging everything I have at my disposable. remember, one thing you have your Md's don't is time to study and review and learn new options and issues with your disease. Use that time wisely.
I have found, wrong moves, mistakes and treatments are costly in this disease---I am living proof! Don't make the same mistake. It's called learning and findings options and opportunities as you work with your MD. Trust me, if I stay alive long enough, it will be hell on dialysis. There are brilliant MD, surgeons and hospitals that do things which a lot of places can't and you may need to find them........read my story on the nephron sparing surgery. You learn over time, just at that time I was not nearly ready or competent.....again, I am not an MD, but I can spend hours and hours and hours researching options, my disease, reading studies and clinical trials and when I come into an Md office, I am prepared to work in partnership with my MD. just some thoughts and why I think it is so important to watch this video...LEARN IT. It covers everything Good luck!
http://www.itr8.com/hosted/cnets/baum/presentations/20090305-12-20/default.htm
Presenters: Professor Dr. Richard Baum
VIDEO AGENDA
0:00
Bill Claxton's opening remarks
2:57
Dr. Wee's introduction
4:37
Dr. Baum's introduction
8:40
History of receptor binding
13:42
Using receptors to target tumors
16:20
Wide variety of neuroendocrine tumors
18:26
Diagnosis of NETs
22:07
Functional imaging of NETs
24:22
Preparation of radio-isotopes
25:44
Advantages of PET/CT
28:59
Using PET/CT for initial staging
32:49
Using PET/CT for restaging & follow-up
37:08
Using PET/CT to plan PRRT therapy
38:49
Standardised uptake values (SUV)
39:59
Using PET/CT to evaluate response
42:21
Variety of tumors which can be imaged
43:05
Other molecular imaging probes
44:18
Conclusions regarding imaging
45:20
Targeted radiotherapy
48:09
PRRT treatment at Bad Berka
50:35
Increasing number of patients treated
51:55
Personalised treatment at Bad Berka
53:08
Kidney protection
54:08
Dosimetry - quantifying uptake values
57:00
Kidney toxicity is well managed
59:00
Blood toxicity is usually limited
59:11
Results of PRRT therapy at Bad Berka
1:00:06
Good prognosis & prolonged survival
1:02:57
Combined PRRT & external beam
1:04:47
Using PRRT at an earlier stage
1:06:28
Conclusions on targeted radiotherapy
.JPG)
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3 comments:
Thanks for your kind words and for transcribing an outline of Dr. Baum's presentation.
np but does show power on internet and technology to help us- german md from germany, gets invited to singapore, which you broadcast across the world, seen my desparate patient in USA OHIO! I write you in singapore, you respond back in no time, I contact him and less than a month receiving lifesaving treatment.......TECHNOLOGY SAVE LIVES....on how this is done, and banding our small but very NETumor groups together also shows how info can be disseminated to others. And, oh btw, I send Dr Baum my medical data via internet re: my case-surgeries, blood, etc. Rest is history!
Please note a very important fact in your coverage of octreotide. The studies todate use only Sandostatin LAR - the form of octreotide which is encapsulated in tiny beads which are supposed to break down slowly in the body's muscle tissue (usually the buttocks.)
Octreotide also is made in another form, octreotide acetate, most commonly used for sub-cutaneous, self-injection to control the symptoms of flushing, diarrhea and fatigue. This form of octreotide also may be delivered by I.V. during surgery or crisis and in the continuous infusion pump, same as the way diabetics get insulin through a pump.
Some carcinoid specialists believe continuous infusion is the most effective way to administer the drug. It certainly worked better for me than LAR.
Unless and until there is a study of the effectiveness in all forms of octreotide regarding tumor suppression, I don't believe this research is complete. If you have severe symptoms, you have an alternative in the U.S. now. A similar drug called Lanreotide, sold as Somatuline Depot has many advantages over octreotide: it can be self-administered and often can be used by patients who can't tolerate octreotide.
More alternatives are on the way. One will push a pellet under the skin. Another is a drug entirely different from anything on the market now. Treatment in this country still is centered on drugs as the first and often the only form of treatment because most research is done by drug companies - including the "studies" evaluating the effectiveness of drugs like octreotide. Be aware who funds the information you read.
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