1. < Pancreatic Cancer

Pancreatic cancer recurrence: Anyone else?

Posted by sadiegrace @sadiegrace, Apr 29, 2021

Hi, my name is Trish, I had pancreatic cancer 7 years ago. This reoccurrence was a surprise since I had a CT on March 9th, with no sign of anything to a .5mm stricture of small intestine caused by a mass that is malignant. Just had a stent put in to on Monday to open the intestine and I am feeling much better. Will see my oncologist on May 6th, and maybe find out what stage it is. Because I haven’t eaten very well for the past few weeks and have lost almost 20 lbs, it’s left me feeling weak and tired.

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marienewland | @mnewland99 | Jan 6 12:16pm

Dear sadiegrace,
I love the tone of humility and grace in your response! You are very inspirational! I didn't have as much as a reprieve as you from pancreatic cancer; only 4.5 months. However, my dad who had it over 24 years ago was misdiagnosed (food poisoning!) and by the time he was properly diagnosed it was too late to do any treatment because it was literally in every organ of his body and lived for only 4 more months. He came to live us during his time of hospice (they are the most empathetic and kind group here) and they made life easier for all of us. Even though I only had 4.5 months of "cancer free", though it really never was the case as the scar tissue around my hepatic and celiac arteries that the radiologists and hence my drs called scar tissue, was actually soft tissue cancer that apparently appeared in the extra month of recovery due to complications from my surgery before I could begin my chemo; during that those 4.5 months I was elected to the Bolsa Chica Land Trust Board, and started my own little environmental consulting business where I worked part-time, and obtained a few state certifications related to water quality. I'm very thankful for those 4.5 months when I lived my life to the fullest in light of seeing my dad's withering state several years ago. I have a very aggressive cancer and am getting chemo again, but based on the genetics of my tumor, I don't have a lot of hope unless I can get into clinical trials and it works. My biggest concern is similar to yours, dotting i's and crossing t's so that my kids don't have to do much when that time comes and to make the transition as easy for them as possible and to get tested genetically. God bless you and you have my sincere admiration and prayers!

REPLY
2 replies
montyd | @montyd | Jan 15 12:22pm
In reply to @mnewland99 "Dear sadiegrace, I love the tone of humility and grace in your response! You are very..." + (show)
@mnewland99

Dear sadiegrace,
I love the tone of humility and grace in your response! You are very inspirational! I didn't have as much as a reprieve as you from pancreatic cancer; only 4.5 months. However, my dad who had it over 24 years ago was misdiagnosed (food poisoning!) and by the time he was properly diagnosed it was too late to do any treatment because it was literally in every organ of his body and lived for only 4 more months. He came to live us during his time of hospice (they are the most empathetic and kind group here) and they made life easier for all of us. Even though I only had 4.5 months of "cancer free", though it really never was the case as the scar tissue around my hepatic and celiac arteries that the radiologists and hence my drs called scar tissue, was actually soft tissue cancer that apparently appeared in the extra month of recovery due to complications from my surgery before I could begin my chemo; during that those 4.5 months I was elected to the Bolsa Chica Land Trust Board, and started my own little environmental consulting business where I worked part-time, and obtained a few state certifications related to water quality. I'm very thankful for those 4.5 months when I lived my life to the fullest in light of seeing my dad's withering state several years ago. I have a very aggressive cancer and am getting chemo again, but based on the genetics of my tumor, I don't have a lot of hope unless I can get into clinical trials and it works. My biggest concern is similar to yours, dotting i's and crossing t's so that my kids don't have to do much when that time comes and to make the transition as easy for them as possible and to get tested genetically. God bless you and you have my sincere admiration and prayers!

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Continued prayers for you and your family. Keep fighting the fight.

REPLY
sandrakukman | @sandrakukman | Jan 20 8:39pm
In reply to @wrolsen "You will be in our prayers. I'm 9 1/2 years out from original diagnosis and whipple,..." + (show)
@wrolsen

You will be in our prayers. I'm 9 1/2 years out from original diagnosis and whipple, had a reoccurrence in 2015 and a possible reoccurrence in 2018 (had 2 failed biopsys) so was radiated just to be safe. At this point I'm cancer free, there is hope.

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How long did you have to take chemo on your reoccurrence?

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Jan 22 8:47am
In reply to @sandrakukman "How long did you have to take chemo on your reoccurrence?" + (show)
@sandrakukman

How long did you have to take chemo on your reoccurrence?

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Welcome @sandrakukman. Have you been diagnosed with a recurrence of pancreatic cancer? Has chemo been recommended?

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sandrakukman | @sandrakukman | Jan 22 9:32am

2020 diagnosed, chemo and radiation .February 2021 whipple, more standard chemo after whipple check 75 nodes ok. June 2021 became diabetic 1 and found spot, more chemo and radiation, of course continually chemo. 2022 start the hard chemo again. He has done exactly well for all his chemo -he started cramping before hard chemo and has never went away, he would be great if cramping would go away…supposedly his cancer isn’t growing or glowing not active just sitting for last 8 months: so don’t under stand the pain he hasn’t took chemo for 3 weeks and still doesn’t go away

REPLY
1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Feb 3 2:50pm
In reply to @sandrakukman "2020 diagnosed, chemo and radiation .February 2021 whipple, more standard chemo after whipple check 75 nodes..." + (show)
@sandrakukman

2020 diagnosed, chemo and radiation .February 2021 whipple, more standard chemo after whipple check 75 nodes ok. June 2021 became diabetic 1 and found spot, more chemo and radiation, of course continually chemo. 2022 start the hard chemo again. He has done exactly well for all his chemo -he started cramping before hard chemo and has never went away, he would be great if cramping would go away…supposedly his cancer isn’t growing or glowing not active just sitting for last 8 months: so don’t under stand the pain he hasn’t took chemo for 3 weeks and still doesn’t go away

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@sandrakukman, I'm glad to hear that the tumor is stable and not growing and that he is able to take a break from chemo. Bu it must be so hard to deal with unexplained and persistent pain (cramping). It's been a week since your wrote about this cramping. Has it gotten any better with time? What has his team suggested for the pain? How are his eating habits?

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gardenlady1116 | @gardenlady1116 | Feb 4 9:14pm
In reply to @mnewland99 "Dear sadiegrace, I love the tone of humility and grace in your response! You are very..." + (show)
@mnewland99

Dear sadiegrace,
I love the tone of humility and grace in your response! You are very inspirational! I didn't have as much as a reprieve as you from pancreatic cancer; only 4.5 months. However, my dad who had it over 24 years ago was misdiagnosed (food poisoning!) and by the time he was properly diagnosed it was too late to do any treatment because it was literally in every organ of his body and lived for only 4 more months. He came to live us during his time of hospice (they are the most empathetic and kind group here) and they made life easier for all of us. Even though I only had 4.5 months of "cancer free", though it really never was the case as the scar tissue around my hepatic and celiac arteries that the radiologists and hence my drs called scar tissue, was actually soft tissue cancer that apparently appeared in the extra month of recovery due to complications from my surgery before I could begin my chemo; during that those 4.5 months I was elected to the Bolsa Chica Land Trust Board, and started my own little environmental consulting business where I worked part-time, and obtained a few state certifications related to water quality. I'm very thankful for those 4.5 months when I lived my life to the fullest in light of seeing my dad's withering state several years ago. I have a very aggressive cancer and am getting chemo again, but based on the genetics of my tumor, I don't have a lot of hope unless I can get into clinical trials and it works. My biggest concern is similar to yours, dotting i's and crossing t's so that my kids don't have to do much when that time comes and to make the transition as easy for them as possible and to get tested genetically. God bless you and you have my sincere admiration and prayers!

Jump to this post

I know the feeling of wanting to make sure that everything is done, at the same time I am cleaning out my house, I want to have enjoyment in my life. Have some more of winter left when I am not outdoors so much.

REPLY
2 replies
marienewland | @mnewland99 | Feb 5 9:09am
In reply to @gardenlady1116 "I know the feeling of wanting to make sure that everything is done, at the same..." + (show)
@gardenlady1116

I know the feeling of wanting to make sure that everything is done, at the same time I am cleaning out my house, I want to have enjoyment in my life. Have some more of winter left when I am not outdoors so much.

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Of course it’s a balance for me of being pragmatic and being prepared so that my loved ones don’t have to go through so much hardship, at least financially, after I’m gone. I have a simple bucket list that includes riding around in the local marina in a Duffy boat as often as I can and eating Sunday brunch with my family at Cabo Wabo in Huntington Beach where I currently live and continuing to go out to lunch with my old work buddies and friends. I wish you luck as well!

REPLY
waltsocal | @waltsocal | Feb 5 5:57pm
In reply to @gardenlady1116 "I know the feeling of wanting to make sure that everything is done, at the same..." + (show)
@gardenlady1116

I know the feeling of wanting to make sure that everything is done, at the same time I am cleaning out my house, I want to have enjoyment in my life. Have some more of winter left when I am not outdoors so much.

Jump to this post

I hear you on the cleaning out stuff so the kids don’t have to do it. I’m also trying to walk through the finances with on of my daughters so she is prepared if I can’t handle my own finances and of course, how to help with the estate plan afterwards.

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annsant | @annsant | Feb 6 6:42pm

My husband had half of pancreas and spleen removed with 20+ lymph nodes. They found cancer cells in 3 of the nodes when tested after surgery. He had received chemo pre and post the op. He was NED for a year. Christmas week his last scan and diagnostic laparoscopy showed cancer in the sac surrounding the organs mid body. Yesterday he began infusions of Gemcitabine and Abraxane. Currently there are no trials for him to participate in for his gene mutation KRAS G12D. We are hoping and praying that a trial of the inhibitors will be introduced for his gene mutation. He is now considered Stage IV and is in the palliative stage. He is not in any pain, but has neuropathy in hands and feet/legs. That was from
2 doses of Oxaliplatin in initial chemo last year. The doctor stopped giving it to him after the neuropathy started. We are hoping the two new drugs introduced to him this week will stop the cancer cells from growing.

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