any one diagnosed with DIPNECH??

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any one diagnosed with DIPNECH??

by Cindi13 on Tue Nov 17, 2009 06:49 PM

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MY little sister has been diagnosed with this very rare lung disease.  we are trying to find any and all of the other 53 people in the world who has this, we need help.  we are not getting answers from the drs, and want to ask you all some questions.  anything, please, help!!!

Laura

RE: any one diagnosed with DIPNECH??

by abigailsumner on Thu Nov 18, 2010 05:15 AM

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Hi Laura,

My mother was diagnosed with DIPNECH last April at the Mayo Clinic in Az.  She is 64 years old and she is doing very well, her health is stable and she feels completley normal now.  If you have any questions please feel free to contact me.

Sincerely,

Abigail

RE: any one diagnosed with DIPNECH??

by Tonis on Mon Dec 27, 2010 03:35 AM

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On Nov 17, 2009 6:49 PM Cindi13 wrote:

MY little sister has been diagnosed with this very rare lung disease.  we are trying to find any and all of the other 53 people in the world who has this, we need help.  we are not getting answers from the drs, and want to ask you all some questions.  anything, please, help!!!

Laura

Hi Laura,

I have been diagnosed with DIPNECH along with Carcinoid Tumorlets. I fall into the catagory that most of the 53 or so people are. I am 55 caucasian female. Never smoked. In 1984 I had gall bladder surgery and contracted a flu-like bug while in the hospital. Don't know if it was the flu or something with the anesthesia but after the surgery I was never the same lung function-wise. The good news is that is normally a very slow disease. I get winded often but added oxygen when I walk and sleep. Lung function normally diminishes with age. I am still in the research faze but there will soon be a public website started by a Dr. from California whose wife has similar symptoms. The National Jewish Hospital in Denver and around Colorado may be doing some research but waiting for funding. I have found that most pulmologists don't know that much about the disease. Most drs. thought I had asthma. Most didn't tell me oxygen would help. Also, when sleeping lung function lowers so your sister may consider oxygen at night. I have a concentrator. This is not the best news for her but there are a lot worse diseases and although no known cure yet one can hope for the future. Write anytime.

 

RE: any one diagnosed with DIPNECH??

by wtrusty on Sat Jan 01, 2011 04:05 PM

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I was diagnosed with DIPNECH 2 years ago after going to National Jewish in Colorado for asthma. Non smoker, I was shocked to learn I had little tumorlets in my lungs.  I'm on sandostatin LAR monthly and that has been very helpful.  Many pulmonogloist don't know anything about DIPNECH, I had to find a doctor at a cancer center, since it was cancer.

Good luck, contact me!

RE: any one diagnosed with DIPNECH??

by kaleidscope on Thu May 26, 2011 04:06 AM

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On Nov 17, 2009 6:49 PM Cindi13 wrote:

MY little sister has been diagnosed with this very rare lung disease.  we are trying to find any and all of the other 53 people in the world who has this, we need help.  we are not getting answers from the drs, and want to ask you all some questions.  anything, please, help!!!

Laura

I was diagnosed with this about 5yrs ago.

RE: any one diagnosed with DIPNECH??

by kaleidscope on Thu May 26, 2011 04:12 AM

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I have never smoked. I has surgery years ago and after that started having trouble with my throat chocking on food easy, then over years the  i was diagnosed with copd, then did further testing and found the DIPNECH. I use oxygen when walking and sleeping. It does help. But cold weather makes the symptons of not being able to breath worse.

RE: any one diagnosed with DIPNECH??

by Joycemf on Sat Mar 07, 2015 06:53 PM

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On Jan 01, 2011 4:05 PM wtrusty wrote:

I was diagnosed with DIPNECH 2 years ago after going to National Jewish in Colorado for asthma. Non smoker, I was shocked to learn I had little tumorlets in my lungs.  I'm on sandostatin LAR monthly and that has been very helpful.  Many pulmonogloist don't know anything about DIPNECH, I had to find a doctor at a cancer center, since it was cancer.

Good luck, contact me!

I was also diagnosed with DIPNECTH 3 1/2 years ago at National Jewish with tumorlets.  I am also getting sandostation/octreatide shots at Mayo Clinic in AZ.  Do you have any side effects from the shots?  Have not had any real change to my breathing and coughing after two shots.

Would appreciate any opinions on this.  Thank you.

RE: any one diagnosed with DIPNECH??

by abigailsumner on Sat Mar 07, 2015 07:04 PM

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My Mother was diagnosed with DIPNECH and passed away two years ago. She was one of the few people who went to the Mayo Clinic in AZ and was in the case study. What really helped my Mom live her life with this disease was steroids (prednisone).

RE: any one diagnosed with DIPNECH??

by Joycemf on Sat Mar 07, 2015 07:16 PM

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So sorry about your mother. She did NOT receive the sandostatin shots?

RE: any one diagnosed with DIPNECH??

by abigailsumner on Sat Mar 07, 2015 07:23 PM

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Thank you. My Mother was kept alive by Prednisone for the 5 years she lived after being diagnosed. They did try the chemo type drug toward the end , it came in a pill form and I'm not sure if it was Sandostatin. I will look at her hospital records to check. This had little to no effect on my Mom, I believe it was too late by the time they tried this. Her heart was in afib in addition to having DILNECH, so after a while her body just couldn't take anymore.
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