I just heard from Jim out in California that he has launched a website: www.DIPNECH.com.
He's compiled some very good information, and eventually hopes to use the site to compile information about patients. This could be the beginning of forming a registry.
Please visit the site!
12 comments:
Hi everyone,
I noticed that Jim hasn't been back to this site in a while. I hope it is for a good reason like an extended vacation or something fun! My mom was recently diagnosed with DIPNECH. This is the only website that I have come across that has an active blog. So I have put another one together called HopeforDIPNECH.org. My moms doctor (Dr.Wolin) at Cedars was telling me that there aren't enough patients out there to even do research on DIPNECH. So I am trying to put together a data base of patients with DIPNECH to take to him and grant writers and say Look at this, here they are! My goal is to find a doctor that would be interested in doing clinical research on this rare cancer. My mom has been excepted into a treatment center in German, as soon as I can get the blog working I am going to do a daily blog and video blog to highlight our experiences. So please check out my website, and hopefully we can get some experience physicians to answer questions, if not Dr. Wolin will just get annoyed with me asking so many questions.
Thank you!
Hi All.
My mom is also recently diagnosed with DIPNECH. Looking for support for her... is there anywhere that people are still blogging? I also went to the DIPNECH.com website and it said it was not active.
Alli (Oregon)
greetings all....I have had a diagnosis of DIPNECH for the last three years....i'm a 64 year old male. Apparently that is rare enough in a rare condition. I could write a book here but just wanted to let you know I appreciate your blog and am happy to contribute more if anyone is interested. I have this lovely condition on top of Carcinoids in both lung and a history of PE. Lately have noticed cough is increasing and I desaturate very fast. Living in Colorado is not the best for me given altitude but what can you do when you have work and last kid still in school. I take a monthly Octreotide shot which I believe helps but nothing seems to help the need to be on O2 constantly. Regards
Hi, I am a 55 year old female who was diagnosed with dipnech in 2013, at the same time was diagnosed with cardiomyopathy and heart failure. I have been to the Mayo clinic in AZ, which is where it was diagnosed and ther still doesn't seem to be a lot of information about it. My lung Dr here in IN is very willing to learn and had done a lot of research. I am only on oxygen at night but I go to a Pulminary rehab 3 times a week and notice my oxygen level has been dropping lower than before, it gets to 89 now while on the treadmill. My dr has done a new PFT and I guess we will find out more about that. He recently did a CT scan and I have new nodules and some have gotten bigger. I guess this is what happens , can anyone tell me if this has been there experience. Shortness of breath seems worse also.
My wife was diagnosed with DIPNECH in October 2015. She is on 3 liters of oxygen 24/7 and has 26% lung function. Kathy was on the lung transplant list at Mayo in Jacksonville but has chosen to go off the list because she feels really good. Do any of you know of a DIPNECH patient who has under gone a double lung transplant?
My wife Kathy was diagnosed over a year ago with DIPNECH. Her nodules have not progressed at this point. How are you doing?
How are you doing now with DIPNECH? This is such a rare disease and it is hard to find people to talk to about it.
How are you doing now? I am hoping to establish communication with other DIPNECH patients.
Were you able to get the research going? How is your mom doing?
Hello
I was Diagnosed in 2012 with DIPNECH
I'm 54 I'm currently on oxygen with activity and I sleep with it every night.
Hi, It is July 2, 2019 and my Oncologist believes I may have Dipnech.
Are there any sites for support?
If you could write me at paulajgr@yahoo.com that would be great!
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