nanoknife IRE for pancreatic cancer

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kelizabeth kelizabeth
(Inactive)

RE: nanoknife IRE for pancreatic cancer

by kelizabeth on Thu Dec 01, 2011 04:43 PM

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I appreciate your email so much. Seems like you have been through where i'm at right now. God Bless your mom and i'm so happy she is doing well. Please tell your mom she is a inspiration to me and my mom. Will you keep me posted on how she is doing? I will write more later i'm in a hurry today and have to run but I will catch up later. I will be praying for you and your mom!

RE: nanoknife IRE for pancreatic cancer

by PhilipJax on Thu Dec 01, 2011 06:56 PM

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Time is fleeting. You should NOT be waiting for the next physician consult. You should be making contact with appropriate IRE practitioners immediately. 

Get copies of the records rapidly, and convert them to pdf format, in an appropriate order. Records include: PET and MRI discs (CT only if they are more recent than the PET), PET, CT & MRI paper reports, blood work, overall patient status report, reports on past surgeries.

To learn whether you might be eligible for new therapies, these records should be sent to distant physicians via email, with the discs to follow by overnight.

Also, apart from IRE select a nationally-recognized MEDICAL oncologist and SURGICAL oncologist. He or she will be in practice at one of the major cancer centers. Seehttp://health.usnews.com/best-hospitals/rankings/cancer.& is the best because its medical management team is the most aggressive on earth. Ratings are established by peer-ranking: Physicians across the country are asked where they would seek treatment for themselves. Even you local MD would seek care at MDACC for himself.

For example athttp://www.mdanderson.org/education-and-research/departmen for the head of the treatment team, and review the journal articles published. If initially you pick the wrong physician, it becomes difficult to move to another later. When searching these sites, always right-click and open new window, so the prior windows are not lost.

kelizabeth kelizabeth
(Inactive)

RE: nanoknife IRE for pancreatic cancer

by kelizabeth on Thu Dec 01, 2011 07:18 PM

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Thank you so much. This information is so helpful to me because I did not even know where to start. I really appreciate it!

RE: nanoknife IRE for pancreatic cancer

by LINDAKUN on Thu Dec 01, 2011 07:42 PM

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OnOctober 2, 2009I was diagnosed with stage 4 pancreatic cancer that had spread to my liver with a dozen tumors. At that time I was told I was inoperable and put on chemo.

 

But I had heard about the Nano-Knife through a newspaper article and decided to schedule an appt. I had the procedure done on my liver which worked beautiful and it allowed me to become operable.

 

I had the whipple procedure done and have been cancer free ever since. Praise God!

 

At the time I had the procedure done they were only doing it on the liver but now they are doing the procedure on lungs, pancreas and many tumors located on soft tissue.

 

Recovery was minimal and my Doctor was Awesome Dr. Raj Narayanan at UM Sylvester.

 

Bottom line the Nano-knife allowed me to have surgery and saved my life.

PS. I was exactly your mom's age when my procedure was done.

 

Linda Kuhney

www.lindakuhney.com  

RE: nanoknife IRE for pancreatic cancer

by Clarisax82 on Thu Dec 01, 2011 07:45 PM

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That's AWESOME, Linda.  So you must have been one of the very early people to have it done?  Fantastic!

RE: nanoknife IRE for pancreatic cancer

by PhilipJax on Thu Dec 01, 2011 07:54 PM

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No local referral is needed to contact the distant physicians.  And, do not wait for the local to send the records.  You do it.  And, do not expect the local to suggest any therapy outside his practice or local cooperators.

When someone is hit with a life-threatening condition, a close family member must take time off and spend all time on the needed therapy and finding the best practitioners.

I note that the links do not reproduce well here.  So read http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2989557/pdf/gnl- delay.

Also get a copy of the NCCN guidelines in pdf format at http://www.nccn.org/professionals/physician_gls/f_guidelines the professional version. Begin reading where the text begins, perhaps page 40+

kelizabeth kelizabeth
(Inactive)

RE: nanoknife IRE for pancreatic cancer

by kelizabeth on Thu Dec 01, 2011 07:55 PM

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Linda, your story is amazing!!! I just read it to my mom and I could see her eyes fill with HOPE!

I just contacted Dr. Robert Martin in Kentucky today and her films are being faxed right now. We have a appointent in Maryland where we live at University of Maryland on Dec 15th with Dr. Fred Moeslin. I wanted a back up plan and Dr. Martin sounds amazing too. Thank you everyone for the hope and the success stories!!! I'm praying for you all!!

RE: nanoknife IRE for pancreatic cancer

by PhilipJax on Thu Dec 01, 2011 08:09 PM

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Films are not faxed.  Someone must send the disks.  And, make sure the package of records is complete.

Fred M Moeslein is an iternventional radiologist, meaning he does not do open surgery.  Ask him if he will cooperate with a surgical oncologist to assist during IRE intervention.

Dr Martin is a full surgeon, which has advantages, since he can use a surgical opening to assist IRE in gaining full access to the tumor sites.

kelizabeth kelizabeth
(Inactive)

RE: nanoknife IRE for pancreatic cancer

by kelizabeth on Fri Dec 02, 2011 03:54 AM

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I really appreciate all the information you are giving me. Tomorrow morning I am getting up early and I am going to make sure all of this is done tomorrow. I'm not waiting anymore. I'm going to call and try to get the appointment she has moved up and make sure the other doctors all have the needed films and records. Thank you.

RE: nanoknife IRE for pancreatic cancer

by workinprogress on Fri Dec 02, 2011 06:10 PM

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I had this procedure performed at Stony Brook by Dr Watkins 13 months ago and I strongly recommend it if you are eligible.

While I have colon cancer, my egg-sized tumor was at the head of the pancreas and fooled some radiologists into thinking it was pancreatic. Like some of the people who replied here, it also surrounded a critical blood vessel and was otherwise inoperable. It was this procedure or a hospice. At the time, this was the only tumor we knew about.

Something to keep in mind - IRE is still experimental which is why surgeons will only do it if the other options have been exhausted.

This is what happened to me: 

Before the operation, chemotherapy had to be stopped for six weeks to allow the chemo drugs to be eliminated. This permitted new tumors to develop and one month following surgery new metastaces were discovered in my lungs and another in almost the same spot as the tumor operated on.

Just as bad, there is something about the procedure which in my case screwed up my digestion and I developed immediately unremitting violent diarrhea. The procedure was so new just one year ago, that this unexpected side effect was a surprise. Months went by with many diagnoses proposed and anti-diahrreal treatments tried. Finally my oncologist suggested I try tincture of opium. This has fortunately worked to control the runs but still, one missed dose and I'm back to the races.

Despite the fact that I have cried over the torture of these side effects combined with the usual discomforts of ongoing chemotherapy, I am immensely grateful that IRE came along to give me the extra months of life.

My disease continues to progress and it may be that my tumor is showing signs of displasia ie coming back to life. Possibly my tumor was just too big for this procedure.

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