Back from JH - Stage 4 with mets to Liver

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Back from JH - Stage 4 with mets to Liver

by pmdoughtie on Mon Apr 25, 2011 11:12 AM

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Hi everyone,

My husband and family drove to Johns Hopkins and were very hopeful to get the latest, best advice but...we met with Dr. Sharfman (not our first choice but Laheru was booked for over a month.)  He had another young Dr. ask us all of the normal questions, then he and she went over notes and looked over CT scan.  He came in and talked to us for maybe 5 minutes.  Basically just said there are 3 types of chemo for this and because Chris is just 44 yrs old we should try GTX or the F? (forgot how to spell it.)  He was not happy to answer any questions and the feeling we both got was that there was no hope.  I asked about some things and got very short answers.  I asked about life expectancy and he was saying something like - if the chemo shows an INCREDIBLE result then maybe there is some hope.  Now my husband has lost almost all hope.  Luckily, we go to a good local pancreatic specialist Tuesday.  The JHH doc just said to use GTX. 

Anyway, I saw one or two comments on here where people w/ stage 4 have had good results with treatment -- what other treatments are there?  Can anyone tell me anything good or bad about what to expect?  We would be happy with one year at this point because we are so afraid it's just a few months.  Also, he is in extreme discomfort even with the percoset - the JH Dr. did not address any of the pain issue - just when asked said it was probably the liver tumors and possibly constipation. 

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

by BCinOntario on Mon Apr 25, 2011 12:22 PM

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Hi there,

I am so sorry that you had a less than inspired consultation with this doctor at JH and that he couldn't be more forthcoming with you and your husband. Please don't let his lack of encouragement discourage you. Given that your husband is quite young, there is every reason to bellieve that he has a good chance of doing well with the right chemo protocol, appropriate diet to help boost and support his immune system and to deal with the symptoms of this disease and its effects and taking things like Vitamins B, C & D which can help to keep him balanced and provide energy. Maintaining as normal a routine as possible and getting plenty of exercise and fresh air will also be very important for his sense of wellbeing.

As for GTX or Folfirinox/Folfox, I won't attempt to speak for those who have received these treatments - I am sure that they will come forward and be able to provide you with some valuable information and feedback on their individual experiences. You may have read Markb's posts here. He was diagnosed with stage IV with mets to liver and given only a few months. He was started on GTX and had tremendous results. He is still going strong. You can find him these days at the John Hopkins PC Chat board here :

http://pathology.jhu.edu/Pancreas_chat/

I wish your husband and you all the best and hope that the meeting goes well on Tuesday. Stay strong and believe that there is every reason to be hopeful.   

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

by squand on Mon Apr 25, 2011 12:55 PM

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I had whipple and am currently on folfirinox for monthsand has shrunk mets to liver by 50%.With the kinda of doctor you were  forced I would make a very stern complaint,then run not walk out of their.I am surprised JH is a good hospital.I had my whipple at Mayo Clinic and theredoctors anwsered every question and took all time we needed,we never felt ruhed.  Remember you'r paying the bill here.  Again remember stand up for your rights.

God Bless

Rick

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

by SunshinEday on Mon Apr 25, 2011 01:44 PM

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Rick,

I understand running out of a doctors office.  I had stage four cancer and my doc said there's nothing they can do.  I left when he said he would be right back and never went back.  That was 2 1/2 years ago..  :)   I feel like walking into his office and saying HEY how's it going...Maybe i will bump into him at the grocery store.  That would be great!

Best of luck

Peg from Manchester, PA

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

by squand on Mon Apr 25, 2011 02:18 PM

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Glad to hear of your success.  The nurses who take care of me said I should walk into his office also.  Thing is he takes turns on weekend on call.I hope she takes our advice and gets another Doctor.  Kinda funny the first doc did comercials for the hospital.  Think he wanted to be a movie star.

Good luck to everyone

Just remember we pay the bill here.

Rick

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

by pmdoughtie on Mon Apr 25, 2011 03:23 PM

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Thank you all - I feel much more hopeful after reading the postings on this site.  We do meet w/ a local Dr. this week and hope to start either GTX or F? (sorry!) this week if possible.

I just picked up the copy of the CT report - I posted it on the JH pancreatic board hoping that someone could decipher that thing for me!  Sounds as if there is the 3cm-ish tumor in the pancreas and another slightly larger one in the liver but then there seem to be things going on in other areas and even after googling for awhile I still am confused!

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

by leoleo on Mon Apr 25, 2011 09:10 PM

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Sorry you did not have a caring dr at JH. My husband sees Dr Le and she has been great.  She gave us her e-mail address and i can get in touch with her if i have any questions.  Just got back from there today. His pancreatic cancer has spread to the spine but good news today -has not grown since we were there in Jan. Find a good oncologist that will be upbeat and no doom and gloom. He was diagnosed 20 months ago and had the whipple and never has had any negativity from any dr we have seen there.

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

by RobertaM on Tue Apr 26, 2011 06:18 AM

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A year ago I was dianosed with inoperable Stage 4 with liver mets. I'm 57 years old and had been very healthy up to that time. The first oncologist I saw basically told me to go home and put my affairs in order as I wouldn't be around for long. I changed doctors immediately and found someone much more positive. Have been on gemcitabine alone since then (2 weeks on, one week off). In the past year I have travelled a lot, been back to work and generally led a good productive life. Side effects were minimal.  Recently pain has come back and I feel gemcitabine may not be as effective as it was (scan results not so good) but my oncologist says she has Plan B ready to go (possibly Folfox or abraxane). Don't give up hope. Look for someone who will treat you sympathetically - they are out there.

All the best in fighting this beast..

Roberta (Melbourne, Australia)

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

by pmdoughtie on Tue Apr 26, 2011 02:34 PM

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I will be sure to get him the best care possible.  We really hope the Dr. we see today will have a more hope!  If the treatment is working, we will stay put but I will keep in mind to always seek another opinion when the Dr. gives up.  It is horrifying to hear how many doctors have told people there is no hope -- but WONDERFUL to hear that for many people who wouldn't give up, and got a different doctor with a different outlook/treatment plan, the outcome has been great and proven the other docs wrong.  Thank you all for sharing your stories with us. 

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

by Gretchenmarie on Tue Apr 26, 2011 07:23 PM

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My husband too was diagnosed 2 1/2 years ago with stage 4 pc with mets to liver. He was given 12-18 months to live with treatment. He is 59 years old.  He is on folfirinox now and doing quite well. DO NOT give up hope. Find a good Dr, which your local probably is. At your husbands young age I'm betting he will respond to treatment quite well. There are several protocols out there, and I can't believe some dr's are so heartless as to dimiss a person that is just looking for some chance at life, how ever small. I wonder how they would feel if they were in the same shoes?

Take care, and all our prayers to the both of you.

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