Data for Nanoknife procedure

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Data for Nanoknife procedure

by Cathyvalentine on Sat Mar 24, 2012 04:16 PM

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Hi, I am a 59 year old female who just had the Nanoknife procedure done on my Pancreatis. I couldn't have the whipple surgery because the tumor is wrapped around my major arteries. I believe I am stage 2 and 3. Don't know if those numbers went up higher or not. I went threw Chemo and Radiation and have been off Chemo going into the fifth month. I was looking all over the internet trying to find so info about the Nanoknife procedure and to my surprise didn't really find any Data on it. I know some people had the procedure done, but they never followed up with us to let us know how they are doing post op. I also found out that many of the Univerisitys preforming the procedure don't follow up either! No wonder there isn't any data! So, I have decided to be the data alot of you are looking for. I had the procedure done in a Major Univ. out of state. I heard they were great! They told me that I am their 13th patient. Kind of scary, but I know I needed to try something and we needed the data to see if this is a new breakthrew to save lifes or prolong life. Three weeks ago the procedure was done. I was suppose to stay for 24 hrs in a holding area to make sure all went well. I was under General Anes. for four hours. It was done CT Scan guided. Three electrobes were place threw my stomach to reach the Pancreatis. The site was just below my right breast on my stomach. When I awoke from the procedure I was very sick which I believe from the Anes. and had severe pain in the middle of my chest and back. I had a foley cath in and a NGT as well. They did a cardiac work up to make sure the pain wasn't my Heart. My Heart was fine. Then they did a repeat CT. Scan and it showed a shadow on the stomach that wasn't there on last CT. Scan. They were concerned that just maybe they ablased my stomach wall by mistake. They told me that if it was the outer part of the stomach, it would heal on its own, but if it was the inter part of the stomach, then I would have problems. I was told to repeat the CT. Scan in a week to see if the stomach was ok. I was still having severe pain and as soon as they took out the NGT, my pain went away. Maybe the NGT was hitting a nerve and giving me all that pain. I was placed on a PCA pump with heavy pain meds at the time. I stayed in the hospital two days. On the third day I was able to eat food and hold it down with no problems and I was walking around with little discomfort from the procedure site. I was told that the mild pain I am having could last six to eight weeks. I went home on the third day and did well. I have a tooth that needs to be pulled now and had some blood work done to make sure my WBC'S and RBC's were ok to have the tooth pulled. All my labs were good except the CA19-9. It is almost up to 400. I don't know if my count was up that high before the procedure or if its a false neg results from them working in that area. I will be followed up by my Cancer doctors in April. I am hoping they get the data and follow up with me so others will know. I will update when I get different news on the procedure. At this point I have no idea if it made it worst or better or just didn't do anything. I might have to start back on Chemo soon. Just remember that each case is different. Talk to you later and have a great day!

RE: Data for Nanoknife procedure

by PhilipJax on Sat Mar 24, 2012 07:09 PM

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Cathy, use Google to search two terms: nanoknife and philipjax.  You will find all my postings.  Among them is the following.  But, read all the posts in the thread.  Philip

For Pancreatic Cancer, first undertake Nanoknife (Irreversible Electroporation, IRE), then the Whipple Procedure.

For journal articles on IRE prospects see the publications list at the bottomofhttp://clinicaltrials.gov/show/NCT01369420. Alt publications describe intervention by Radio Frequency Ablation (RFA), IRE may be expected to produce similar or better results. A fine article on the workings of IRE isathttp://www.ncbi.nlm.nih.gov/pmc/articles/PMC2989557/pdf/

Most IRE and RFA procedures are performed by interventional radiologists, not surgeons. It is better if you can find a surgical oncologist who utilizes the technology, because he will then be able to use it during open surgery as well, and he has better surgery perspectives. A related story isathttp://commcgi.cc.stonybrook.edu/am2/publish/General_Uni profile isathttp://uhmc-echoiisp.uhmc.sunysb.edu/echonet/physicianre

Do not waste your time on radiotherapy, such as Cyberknife. It is unlikely to gain any lasting benefit.

Much IRE work has been done at the following institutions:

·       Baptist Health,Little Rock,AR:888-227-8478www.baptist-health.com;

·       Valley Baptist,Harlingen,Texas 956-389-1854;

·       University ofMiami,Sylvester Cancer Center,Florida,https://www.med.miami.edu/patients/sccc_nanoknife.asp;

·       PiedmontCancerCenter,Atlanta,GA, 404-425-7925,http://piedmontcancer.org/oth/Page.asp?PageID=OTH000418;

·       Banner Health Good Samaritan,Phoenix,AZ, 602-839-2000

·       Special consideration should be given to Robert Martin, MD, PhD, FACS at theUniversity ofLouisville, 502-629-3355, who is an oncological surgeon.

·       To Fred M Moeslein, MD, PhD, Assistant Professor, Diagnostic Radiology,University ofMaryland,School ofMedicine, who is an aggressive interventional radiologist.

·       ToStephen B. Solomon, MD, Chief of the Interventional Radiology,MemorialSloanKetteringCancerCenter.

·       ToSandeep Bagla,MD, CVIR Department,InovaAlexandriaHospital,Alexandria,Virginia, who is an interventional radiologist;

·       ToSteven J Citron, MD, Radiology Associates ofAtlanta,Atlanta,Georgia.

·       The most IRE work on humans, though not Pancreatic, has been done by Dr Govindarajan Narayanan, Chief Vascular Interventional Radiology, University of Miami, Miller School of Medicine (avoidJose M. Yrizarry, MD, of that institution).

Overall the best institution for Pancreatic Cancer care is MD Anderson Cancer Center inHouston,Texas, but it surprisingly does not utilize IRE as yet. Pancreatic Cancer will metastasize to the liver. Steven A Curley, MD, of MDACC is likely the best liver surgical oncologist in the nation. He is a developer of RFA techniques. RFA, as Dr Curley has recently shown, has a high cancer recurrence rate, which makes it surprising that MDACC has not acquired IRE (Nanoknife) equipment.

Do not hesitate to travel, thinking it inconvenient. Death is far more inconvenient. This cancer is a swiftly moving parade, one misstep, and one cannot go back to take a path forsaken earlier.

One final note: If you are accepted for therapy by an IRE practitioner, and he wishes to delay work to await the outcome of a previous procedure, do not wait. Have the IRE done immediately.

Philip

RE: Data for Nanoknife procedure

by shelby1 on Sun Mar 25, 2012 01:59 PM

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PhilipJax

Did Dr. Watkins at Stony Brook stop? We had ours there and I think he was the first to do surgical Nano on the pancreas as he also is a gastro/oncologist/surgeon. I see the number of surgeons are increasing and there is a lot of info on the net. You are correct in that it's what you Google that counts. We found our info here and under Nanoknife on Google, under Dr. Watkins name, along with Dr. Martin and Moeslein's names.  I Googled  Places that do Nanoknife. centers. There is personal info on here about Nano but it is not much. We are still here after surgical Nano (I.R.E.) and we have answered any questions on this board about it in the past. Every one is different and our decision was based on our situation. We had a partial Whipple with the Nano, stayed on chemo at least 6 months and are presently "clean". Surgery is at least 3 -4 days in the hospital, we stayed 10 because of C-Diff (had it before) but no real surgical complications. It is Major Surgery if done this way. We had a metal stent which complicates just going in with probes. The Whipple part was a billiary/duodenum  bypass.. We were back on chemo one month later as a precaution for 6 months. This is surgery and recovery is personal. There was also a drain that comes out before we left and we walked out with staples that were removed the following week.  No chance previously for tumor removal because of location so Nano seemed the right thing to do. Tumor is "dead". we say zapped. scar tissue still there as it shows up on the scans but so far so good. All 3 doctors offices responded to our inquiery. promptly  Dr. Watkins office took a little longer  because we had to call back to have them call..  Biggest decision was Radiologist or surgeon. Mental stent and hernia settled that!  Good decision for us.There is info out here but it's not everyday so people have to go back on this site. Lots of ours has been private reply but there is stuff here. We still have not found long term information so maybe, wishing, we will be what we're looking for.  We did have it, we would do it again, it is major surgery by "surgeon" but not if by Radiologist, recovery depends on person, follow up is ongoing. Chemo recommended for 6 months by our Dr. others may be different., No full Whipple but we had gallbladder removed and stomach bypass in the ppast from failed Whipple.. Billiary bypass with Nano.  Pancreatic Head tumor "encasing" artery and veins considered "inoperable". Enzymes every day along with probiotic, no animal fats, low fat dairy tolerated, hamburgers OUT, fried foods OUT, daily test of food, adding more each day, but not together.  We are tired but may be from "everything" and side effects of chemo. Platelets low. We know from the net, that there are at least 50 people out there who had surgical Nano, and many more who went with Interventional Radiologist but as stated before not many googling about it.Any more info is availlable from us if needed.

Pat

             

RE: Data for Nanoknife procedure

by Cathyvalentine on Mon Apr 09, 2012 02:33 PM

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Thanks Pat for the great info about the Nanoknife procedure. Please keep everyone informed on progress after the procedure. I went to my Chemo doctor and he wants to wait one more month for me to heal before doing a CT scan to see how it worked for me. I am hoping that this procedure freed the tumor from my arteries so I can have the whipple surgery as well. I have heard of great results after whipple surgery. I have been off Chemo going into five months now. That is kind of scary. I feel good, with only mild aches and pains so far. Still having diarrhea. I was hoping the procedure would of opened up the duct so I can get the enzymes I need, but that didn't happen. I wish I could of found the data you found or was told about by your doctors. I searched high and low for it and had others do it as well. I strongly do recommend that if you choose a place to have the procedure done, make sure they can tell you how many they did and how they patients are doing so far . Because I had to fly to Florida for my procedure, I had to wait almost five weeks for it to be done because of insurance reasons. They kept changing the dates on me. Had a great time in Florida anyway while waiting. That's for keeping us posted.

RE: Data for Nanoknife procedure

by BlessedDaughter on Mon Apr 09, 2012 08:17 PM

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On Apr 09, 2012 2:33 PM Cathyvalentine wrote:

Thanks Pat for the great info about the Nanoknife procedure. Please keep everyone informed on progress after the procedure. I went to my Chemo doctor and he wants to wait one more month for me to heal before doing a CT scan to see how it worked for me. I am hoping that this procedure freed the tumor from my arteries so I can have the whipple surgery as well. I have heard of great results after whipple surgery. I have been off Chemo going into five months now. That is kind of scary. I feel good, with only mild aches and pains so far. Still having diarrhea. I was hoping the procedure would of opened up the duct so I can get the enzymes I need, but that didn't happen. I wish I could of found the data you found or was told about by your doctors. I searched high and low for it and had others do it as well. I strongly do recommend that if you choose a place to have the procedure done, make sure they can tell you how many they did and how they patients are doing so far . Because I had to fly to Florida for my procedure, I had to wait almost five weeks for it to be done because of insurance reasons. They kept changing the dates on me. Had a great time in Florida anyway while waiting. That's for keeping us posted.

Thank you, Cathy, for the update.

I am praying your CT results are great! Please keep informing us of your progress.

God Bless!

RE: Data for Nanoknife procedure

by shelby1 on Tue Apr 10, 2012 06:49 AM

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Cathy,

Hope your scan comes out clean.

We are 2 months out of chemo and we will be having a CT scan in May. Our last one was in Feb. and things are O.K. Our first scan was 6 months after the Nano, but it was a Pet scan and an EUS.

No full Whipple here because of radiation burns and scarring so the pancreas is still intact We've been told that the Nano causes a slight heart irregularity just for a couple of days after, I guess our bodies don't like electricty going through them! Our tumor is deemed "dead" not removed but dead. We are on "watch" status every 3 months. We never did the CA 19 before but now we will.  No diarrhea here as we take a  extra strong probiotic and the max on the enzymes at each meal.NO FRIED FOODS and NO ANIMAL FATS they come back with revenge each time. We found the extra enzyme at night time to be very important.

Is your tumor considered dead?  Our doctor's people say they have someone 18 months out from Nano. Our doctor did 26 that we were told  as of last year but as an open surgery.  We did not have a completed Whipple, so indeed everyone is different. There is someone here who had the same thing as you and is doing well. Look up kellilizabeth on here.

We are not in any pain and are fully healed but tired from low platelets which may or maynot be related to the Nano as we have a blocked duct from the liver to the Spleen immediately following the Nano. Again, we had open, major surgery without whipple Nano to kill the tumor, with a biliary bypass by a surgeon  not Radiologist and so far we are well.

Here's crossing our fingers that both of our Scans are "clean" next month!

Pat

 

RE: Data for Nanoknife procedure

by Cathyvalentine on Sun Apr 22, 2012 03:09 PM

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On Tuesday I have my CT scan and will know the results on the 30th. So many people want to find out if the Nanoknife procedure worked for me. I can't wait either! I have been having horrible pain below the waste area. They think it's a nerve pinching and I might have to have another nerve block. I did feel better then I am feeling now. Don't quite know what is going on at this point. Have to wait for the CT scan to see what is going on. I was on percocet for the pain, but got very sick from it and now I don't know what I will do for pain control. I have tried different pain mess, but I don't do well with them. No sleeping good at all. I will keep everyone posted to let you know how my procedure went. Have a great day!

RE: Data for Nanoknife procedure

by shelby1 on Sun Apr 22, 2012 06:25 PM

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Hi Cathyvalentine,

We had an "open" Nano so our experience is different for the Nano but not the results. We have no pain at all, no nerve block either, unless you're speaking of per surgery pain. Been off chemo just 3 months and are anxious every day. Every scan is a nervous day! Best experience with Interventional Radiologist Nano(I.R.E.) on this site is via kelilizabeth who is very willing to discuss her experiences. Go back to Jan to find her. I think she is six months out from Nano. There are other Nano experiences on here back to last Oct, Nov. and Dec  2010 and thru 2011 for anyone looking. Good Luck!

Pat    

RE: Data for Nanoknife procedure

by MiracleMarty on Sun Apr 22, 2012 11:21 PM

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Well just read your article about your Nanoknife procedure and wanted to know how you are doing.  I hope you are doing grrreat!!!  My prayers are with you.  I am a 63 year old women with stage 4 pancreatic cancer.  I had the whipple procedure but 6 weeks after the  surgery the cancer went to my liver.  I have been on chemo almost a year now and seem to be doing good.  I still have it in the liver but praying I can find something that will kill those last two small lesions in the liver.  God Bless You  Miracle Marty

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