Back from JH - Stage 4 with mets to Liver

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RE: Back from JH - Stage 4 with mets to Liver

by mjl304 on Fri May 06, 2011 02:05 AM

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Dear PM, I don't come to the website as often as in the past, but your story caught my eye and I thought I should write something.First , I am so sorry that you and your husband had such a bad experience at Hopkins. I have been going there for over 3 years now, but I agree with those who have written to say you should find another doctor, and perhaps another hospital. Second and much more importantly, there is no reason to lose hope at this early point in time. My own story started much like your husband's. More than 3 years later I am still here.I was diagnosed with stage 4 pc in December 2007. At Hopkins. It had spread to the liver and there was no possibility of surgery. My CA 19-9 was over 5,000. I was 64 at the time. My doctor is Dr Le. She sat me down, explained as much as she could, and laid out the alternatives for my wife and me. I could hardly understand what was going on. Just plain numb. My wife tried to take notes and understand. One of the options was GTX. It seemed to us to be the most aggressive possibility and I started it the next day. We never looked back. I was relatively healthy and was able to cope with 3 very strong drugs. Thank goodness for both De Le and my wife Beth. I would not be here if not for their dedication and care and indefinable intuition. When I passed the one year mark I decided I had to share this experience in some way, down to the very last emotional detail. I asked Dr Le whether she would help and together we were able to write a book about what we have gone through. I am sorry your first encounter with the medical world was so distressing, but it is not the end. Good luck, and if I can be of any help, please tell me and I will try. Michael Lippe.

RE: Back from JH - Stage 4 with mets to Liver

by lucky2havemyboo on Fri May 06, 2011 09:31 PM

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private message sent to you,check inbox.

RE: Back from JH - Stage 4 with mets to Liver

by Erika825 on Fri May 06, 2011 09:54 PM

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Hi there,

I would love to connect with you for some positive support. My husband has Pancreatic cancer since Dec 2008 and is still getting treatments @ Cancer Treatment Centers of America. We're doing good and very happy. 

There's great hope- all we need is awareness and the right support group. Hope to hear from you soon. 

  

RE: Back from JH - Stage 4 with mets to Liver

by Capt.Stoney on Fri May 06, 2011 10:52 PM

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Hi Erika,

Can you describe the treatments your husband has been receiving. I was diagnosed a little over a month ago, with early stage.

Thanks

Stoney

RE: Back from JH - Stage 4 with mets to Liver

by Erika825 on Sat May 07, 2011 01:13 AM

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Well, I will try but I have to be honest with you- I don't remember names or details because it serves no purpose for me. But I do know that he goes every other Friday for 5 hours in the infusion room and they started him on a more aggresive treatment which he gets a pump put on and accessed through his port after his chemo treatment is done and sent home with it for an additional 46 hours and then we go back to the treatment center on Sunday to take the pump off.

Hope this much info helps. Where are you getting treatments @? And how are you feeling? I'd love to chat and offer positive support- as I've already passed the worst part back in December 2008. 

RE: Back from JH - Stage 4 with mets to Liver

by Capt.Stoney on Sat May 07, 2011 02:14 AM

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Hi Erika,

It's nice to meet you. You know, I've been here over a half an hour, trying to figure out what to say. You're a very strong woman and I'm sure your husband is proud of you. My wife and I have both been through this with former spouses, so we feel your pain. Tell Luis he is in our prayers.

I was diagnosed last month, evidently I'm in the early stages because an EUS and FNA in October was negative. I'm going to MD Anderson here in Texas, I think they are getting frustrated with me because they want to do Chemo Radiation and surgery. I'm wanting to explore alternatives, because I don't have symptoms and I'm high risk for the whipple. I see you 2 have also explored alternative methods, in your profile you mention the Gerson therapy.  Wednesday I saw a doctor at MDA and while he didn't condone my choice he told me Curcurmin has shown promise. At this stage my body feels fine, it's my head that is not doing well.

I am wanting to get another EUS and FNA done alpng with a few MRIs before making a decission. So far my wife supports me on this.

Keep me posted on Luis.

 

Stoney

 

RE: Back from JH - Stage 4 with mets to Liver

by Kjohnchas on Wed Jul 02, 2014 09:57 AM

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My husband too 20 months ago and doing great. Our local dr didn't want him to travel to ctca,said it wouldn't do any good,but guess what he was wrong. I don't BELEIVE hospitals that aren't cancer centers know as much.my husband had few side effects from chimo and he was on one of the strongest( ciplitan ,it is a hard road ,but stay positive always,can't tell you how much that helps God bless Kathy

RE: Back from JH - Stage 4 with mets to Liver

by Traceyg on Wed Jul 02, 2014 10:10 AM

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Hi Erika825 My name is Tracey I would love to hear your story about your husband and his treatment I'm 50 year old female got pancreatic cancer in the head couldn't get it removed so on chemo goin good so far but it's only early days fingers crossed this will bide me some time as I have lots to do and see in this world yet weddings grand kids to see and a lot more some some support and your story would mean a lot

RE: Back from JH - Stage 4 with mets to Liver

by Traceyg on Wed Jul 02, 2014 10:20 AM

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Hi stoney my name is Tracey im 50 years old female would love to be your friend and follow your story I have pancreatic cancer in the head went in to have Whipple procedure but it was attach to artery so it was to dangerous they decided to do a biliary and bowel bypass instead they said this would help in the long run very painful 2weeks in hospital and- about 6weeks recovery at home feel great now had two goes at chemotherapy all well so far but only early days good luck with your decision that u make would love to keep updated Tracey

RE: Back from JH - Stage 4 with mets to Liver

by murf99 on Sat Jul 05, 2014 06:31 AM

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My wife, Kathy, is a Stage IV pc patient using a therapy from Dr. Ben Chue in Seattle. He is very willing to work with your oncologist to have them administer the "Chue Protocol" for your loved one. Kathy is 58 and was diagnosed on Dec. 23, 2013. After testing (CT, needle biopsy & PET Scan, CA 19-9 = 23,052) she had one full dose of folfirinox at Kaiser in Calif. but they held out no hope for her. Hundreds of hours searching on the internet led to my discovery of Dr. Chue. We left Kaiser for a chance at survival with Dr. Chue, who's longest surviving Stage IV pc patient is 7.5 years after diagnosis and 5.5 years cancer free. Kathy arrived at Dr. Chue's with a CA 19-9 of 40,820 and after 15 weekly treatments (Gemzar & Paclitaxel) her CA 19-9 is  68. Another Stage IV patient there started with a CA 19-9 of 218,219 and after 21 months of treatment has a CA 19-9 of 53. Dr. Chue does not shy away from Stage IV patients. If you'd like more info please contact me at   murf_lef  at  firenza-llc  dot  com. I'd be glad to send you more info.  Murf 

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