For those with Pancreatic Cancer

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For those with Pancreatic Cancer

by mmarsh on Tue May 06, 2014 10:43 PM

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HI All,

Some of you have read about my mom's pc. Today she was told to try "Plan B". She's already had Gemzar for 11 weeks, along with about 12 radiation treatments, yet her CA 19-9 levels rose to 2400. They told her she has 6 mos. to a year, maybe, but if she tries the stronger chemo, it will not prolong her life, just prolong side effects of the cancer. By the way, they cannot "see" any cancer yet. She has another CAT scan on Thursday. She is going through all the horrible feelings of anger, depression, crying (they put her on prozac today for her crying spells) - you know. She is 73, she looks great and would never know she is so ill. We all hoped that the distal surgery (they removed the tumor in December, but she had 1 positive node) followed by the chemo and radiation would do the trick. She does have a second opinion meeting at City of Hope next Friday. She is currently with Kaiser. Any of you out there with similar CA 19-9 levels who are in remission or still here, devying odds of time given by the physicians? Any hope helps! Thank you!! 

RE: For those with Pancreatic Cancer

by PunkyD on Wed May 07, 2014 08:22 AM

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Dear Mmarsh,

I just responded to another post of yours from April 30th.  I remember it really frustrated me when they couldn't "see" her cancer.  I can only assume that means it has spread, and that there are tiny unidentifiable cells in several places.  I'm so sorry. A second opinion is always good. 

Besides the emotional rollercoaster, how is she physically?  Mobile?  Eating?  Is she losing weight?  Is she in pain?  I found these to be critical factors in what was to come. 

I'm here if you need me.

Punky

RE: For those with Pancreatic Cancer

by debistalnaker on Wed May 07, 2014 06:31 PM

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So sorry to hear. You may want to look into Low Dose Naltrexone, it super boosts your immune system. I have done a lot of research about this very low cost drug. I would be happy to provide you with the info I found and physicians that will prescribe. The side effects are negligible. I can email you the info if you give me your email address, it is too lengthy to post.

My Best,

Debbie

RE: For those with Pancreatic Cancer

by Gretchen72404 on Sat Jul 12, 2014 11:15 PM

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On May 06, 2014 10:43 PM mmarsh wrote:

HI All,

Some of you have read about my mom's pc. Today she was told to try "Plan B". She's already had Gemzar for 11 weeks, along with about 12 radiation treatments, yet her CA 19-9 levels rose to 2400. They told her she has 6 mos. to a year, maybe, but if she tries the stronger chemo, it will not prolong her life, just prolong side effects of the cancer. By the way, they cannot "see" any cancer yet. She has another CAT scan on Thursday. She is going through all the horrible feelings of anger, depression, crying (they put her on prozac today for her crying spells) - you know. She is 73, she looks great and would never know she is so ill. We all hoped that the distal surgery (they removed the tumor in December, but she had 1 positive node) followed by the chemo and radiation would do the trick. She does have a second opinion meeting at City of Hope next Friday. She is currently with Kaiser. Any of you out there with similar CA 19-9 levels who are in remission or still here, devying odds of time given by the physicians? Any hope helps! Thank you!! 

Hi.  How is your mother doing now?  My husband had the Whipple Procedure and Nanoknife in December 2011.  His CA 19-9 fell to as low as 3, but is now over 1500.  It has been rising for over a year now, but no signs of recurrence. 

RE: For those with Pancreatic Cancer

by justferg on Sun Jul 13, 2014 05:18 AM

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Hi I'm sorry to hear about the cancer. I have stage 4 pc in my liver and spleen also, was given 2 months at most.  It has been 17 months.  I take Abraxane and Gemzar.  I was told it was most mild chemo for this palliative care treatment.  I also make a tea from a mushroom. I believe this mushroom is what is allowing my body to heal itself. Going for pet scan this week because my Ca 19 is 37, NORMAL, and doctor doesn't know what to do.  I thought there was only one other treatment called something 5 cocktail.  

RE: For those with Pancreatic Cancer

by JBUFKIN on Sun Jul 13, 2014 05:37 AM

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Hi, I'm new to this site, my husband has PC and had the whipple 12-04-2013.  His CA19-9 only dropped by half, the same amount of his pancrease that was removed.  From what I have read, this test is not specific for PC and will be elevated due to an inflammarory process as well.  If she has been on chemo, this test may be elevated due to the effects on her pancrease.  I am a clinical laboratory scientist, but I'm not an MD... just hope you remain hopeful.  There is a % of people that live through this and someone has to be that %.

RE: For those with Pancreatic Cancer

by mmarsh on Sun Jul 13, 2014 10:47 PM

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He Gretchen! Thanks so much for your email. Mom tried 1 apt. with the super strong chemo (starts with an "F"), but it put her in the hospital for 6 days. Stomach pain, vomiting, etc. Upon being discharged, she opted for no more treatment. She just felt it's been too painful and too much. She had been on morphine and does wear a pain patch daily. They've stopped running her CA 19-9 levels and say she might have 6 mos. now. She still looks amazing and at home she gets around well. We all went out for dinner last night. This one chemo did have her lose all of her hair though, so she is now wearing a wig. She's bummed about that, but she's alive! Her crying fits are much improved. She's now on Paxil vs. Prozac. along with Ativan. I am soooo happy for you and your husband - having no sign of recurrence. I wished we had news like that. I think it's awesome to hear that CA 19-9 levels can rise, yet you can have NO cancer. How old is he? I pray he continues to thrive. Thank you for writing! -M.

RE: For those with Pancreatic Cancer

by mmarsh on Sun Jul 13, 2014 10:52 PM

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Hi, thank you for writing!!! I am thrilled you are doing so well. 17 mos.? Wow!! Good for you. How often do you do the Abraxane and Gemzar? Mom did it, but her CA 19-9 levels continued to rise from 1500 to 2400...not sure where they are at now. Would you be willing to share your mushroom tea information? Mom tried 1 apt. with what they call the super strong chemo (starts with an F), but she ended up in the hospital for 6 days with pain, vomiting etc. She ended all treatment after that. They say she may have 6 mos. tops. I think your story is amazing and I will pray that you continue to heal!! Thanks for the mushroom info!

RE: For those with Pancreatic Cancer

by mmarsh on Sun Jul 13, 2014 10:57 PM

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On Jul 13, 2014 5:37 AM JBUFKIN wrote:

Hi, I'm new to this site, my husband has PC and had the whipple 12-04-2013.  His CA19-9 only dropped by half, the same amount of his pancrease that was removed.  From what I have read, this test is not specific for PC and will be elevated due to an inflammarory process as well.  If she has been on chemo, this test may be elevated due to the effects on her pancrease.  I am a clinical laboratory scientist, but I'm not an MD... just hope you remain hopeful.  There is a % of people that live through this and someone has to be that %.

Hi, and thank you for your email!! Mom tried a stronger chemo, but only lasted the one apt. She ended up in the hospital for 6 days after that with pain, vomiting, etc. She also lost all of her hair. She opted for no more treatment after that. We are now not sure how long she has at this point, the Drs. say maybe 6 mos. I agree with you, someone has to be in that percentage!! Is your husband doing well? What treatment is h in now? Not sure what mom's CA 19-9 levels are at now, but she did lose 3/4 of her pancreas, now takes enzymes and insulin and had 1 positive node out of 4 removed. I will keep you and your hubby in my prayers!

RE: For those with Pancreatic Cancer

by Gretchen72404 on Mon Jul 14, 2014 12:32 AM

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On Jul 13, 2014 10:47 PM mmarsh wrote:

He Gretchen! Thanks so much for your email. Mom tried 1 apt. with the super strong chemo (starts with an "F"), but it put her in the hospital for 6 days. Stomach pain, vomiting, etc. Upon being discharged, she opted for no more treatment. She just felt it's been too painful and too much. She had been on morphine and does wear a pain patch daily. They've stopped running her CA 19-9 levels and say she might have 6 mos. now. She still looks amazing and at home she gets around well. We all went out for dinner last night. This one chemo did have her lose all of her hair though, so she is now wearing a wig. She's bummed about that, but she's alive! Her crying fits are much improved. She's now on Paxil vs. Prozac. along with Ativan. I am soooo happy for you and your husband - having no sign of recurrence. I wished we had news like that. I think it's awesome to hear that CA 19-9 levels can rise, yet you can have NO cancer. How old is he? I pray he continues to thrive. Thank you for writing! -M.

My husband went to the emergency room today for pain in the abdomen and side.  The CT shows some lung and liver nodules since the last CT scan.  Please keep him in your prayers. 

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