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Is anyone participating in a clinical trial for pancreatic cancer?

Posted by lfitz @lfitz, Sep 25, 2022

Is anyone participating in a clinical trial for pancreatic cancer? My husband’s PC is not genetic. He has tried Folfirinox. He was allergic to Oxaliplatin and the Folfiri was not effective. He did Xeloda during his radiation. He did 2 months of Gemcitibine and Abraxane with severe side effects and no good days during the 2 months. It did work well though. He has grade 3/4 neuropathy. He is now stage 4 and only options appear to be no treatment and enjoy what time he has left, a decreased dose of gemcitibine and abraxane , or a clinical trial.

Interested in more discussions like this? Go to the Pancreatic Cancer Support Group.

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keepingoptimistic | @keepingoptimistic | Dec 6 9:09am
In reply to @azsunshine7 "@keepingoptimistic I sent you a private message 💖" + (show)
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@keepingoptimistic

I sent you a private message 💖

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Please resend the private message.

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Turkey, Volunteer Mentor | @tomrennie | Dec 6 9:40am
In reply to @keepingoptimistic "Larry, Whipple is a long and arduous surgery with a long and often difficult recovery, especially..." + (show)
Profile picture for keepingoptimistic @keepingoptimistic

Larry, Whipple is a long and arduous surgery with a long and often difficult recovery, especially for an older person after chemo. I can guide you (I am not a MD) but need more information in order to do so. What stage is the cancer? If she is not metastatic there are many less invasive, lower risk options. What is the hospital you are at? If they offer nothing other than surgery, that give me reason for concern. I strongly recommend a high volume cancer center. Depending are where you are located, I can suggest one. Has she had a multi-disciplinary consult (Oncologist, Radiologist, Surgeon, interventional radiologist (possible), pathologist (possible) and a dietitian? Possibly a nurse or social worker as well. Cancer requires a team of specialists. I personally am fine with chemo being outsourced to local facilities, but beyond that a major high volume hospital with a Pancreatic cancer center is a must. Send me a private message.

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@keepingoptimistic Can we please keep the discussions here and not in private messages? Sharing here helps so many others going through the same thing. Thanks.

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keepingoptimistic | @keepingoptimistic | Dec 6 9:53am
In reply to @tomrennie "@keepingoptimistic Can we please keep the discussions here and not in private messages? Sharing here helps..." + (show)
Profile picture for Turkey, Volunteer Mentor @tomrennie

@keepingoptimistic Can we please keep the discussions here and not in private messages? Sharing here helps so many others going through the same thing. Thanks.

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OK

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keepingoptimistic | @keepingoptimistic | Dec 6 10:40am
In reply to @keepingoptimistic "OK" + (show)
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OK

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@keepingoptimistic

Will do.

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lhlawrence | @lhlawrence | Dec 6 1:55pm
In reply to @keepingoptimistic "Larry, Whipple is a long and arduous surgery with a long and often difficult recovery, especially..." + (show)
Profile picture for keepingoptimistic @keepingoptimistic

Larry, Whipple is a long and arduous surgery with a long and often difficult recovery, especially for an older person after chemo. I can guide you (I am not a MD) but need more information in order to do so. What stage is the cancer? If she is not metastatic there are many less invasive, lower risk options. What is the hospital you are at? If they offer nothing other than surgery, that give me reason for concern. I strongly recommend a high volume cancer center. Depending are where you are located, I can suggest one. Has she had a multi-disciplinary consult (Oncologist, Radiologist, Surgeon, interventional radiologist (possible), pathologist (possible) and a dietitian? Possibly a nurse or social worker as well. Cancer requires a team of specialists. I personally am fine with chemo being outsourced to local facilities, but beyond that a major high volume hospital with a Pancreatic cancer center is a must. Send me a private message.

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@keepiingoptimistic

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lhlawrence | @lhlawrence | Dec 6 2:09pm
In reply to @keepingoptimistic "Larry, Whipple is a long and arduous surgery with a long and often difficult recovery, especially..." + (show)
Profile picture for keepingoptimistic @keepingoptimistic

Larry, Whipple is a long and arduous surgery with a long and often difficult recovery, especially for an older person after chemo. I can guide you (I am not a MD) but need more information in order to do so. What stage is the cancer? If she is not metastatic there are many less invasive, lower risk options. What is the hospital you are at? If they offer nothing other than surgery, that give me reason for concern. I strongly recommend a high volume cancer center. Depending are where you are located, I can suggest one. Has she had a multi-disciplinary consult (Oncologist, Radiologist, Surgeon, interventional radiologist (possible), pathologist (possible) and a dietitian? Possibly a nurse or social worker as well. Cancer requires a team of specialists. I personally am fine with chemo being outsourced to local facilities, but beyond that a major high volume hospital with a Pancreatic cancer center is a must. Send me a private message.

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@keepingoptimistic
PET scan and biopsy showed no spread to lymph nodes or other organs. Didn't mention blood vessels.
Considered stage1-2.
Treatment center is Parker hospital in Parker ,CO, part of Advent health system here.
Met with surgeon and oncologist.
Have not heard from them re non-invasive alternatives

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keepingoptimistic | @keepingoptimistic | Dec 6 3:52pm
In reply to @lhlawrence "@keepingoptimistic PET scan and biopsy showed no spread to lymph nodes or other organs. Didn't mention..." + (show)
Profile picture for lhlawrence @lhlawrence

@keepingoptimistic
PET scan and biopsy showed no spread to lymph nodes or other organs. Didn't mention blood vessels.
Considered stage1-2.
Treatment center is Parker hospital in Parker ,CO, part of Advent health system here.
Met with surgeon and oncologist.
Have not heard from them re non-invasive alternatives

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Just my opinion but you might think about a Pancreatic Center of Excellence. Initial chemo can be outsourced to a place near home, but after that you need to get to a major facility. Stage 1-2 has many options that you won't find where you are. I am not saying that surgery is not an option or the best option, but IMO, it is one of several. Only a major facility will have these treatments. You can find these on
https://pancreasfoundation.org/

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lhlawrence | @lhlawrence | 4 days ago
In reply to @keepingoptimistic "Larry, Whipple is a long and arduous surgery with a long and often difficult recovery, especially..." + (show)
Profile picture for keepingoptimistic @keepingoptimistic

Larry, Whipple is a long and arduous surgery with a long and often difficult recovery, especially for an older person after chemo. I can guide you (I am not a MD) but need more information in order to do so. What stage is the cancer? If she is not metastatic there are many less invasive, lower risk options. What is the hospital you are at? If they offer nothing other than surgery, that give me reason for concern. I strongly recommend a high volume cancer center. Depending are where you are located, I can suggest one. Has she had a multi-disciplinary consult (Oncologist, Radiologist, Surgeon, interventional radiologist (possible), pathologist (possible) and a dietitian? Possibly a nurse or social worker as well. Cancer requires a team of specialists. I personally am fine with chemo being outsourced to local facilities, but beyond that a major high volume hospital with a Pancreatic cancer center is a must. Send me a private message.

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@keepingoptimistic
Requested a 2nd opinion at UCHealth Aurora CO.
They are referring to the Tumor Board.
In the process of setting up a meeting or appointment now.
Hope it gives us some options other than Whipple.

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keepingoptimistic | @keepingoptimistic | 4 days ago

I hope so as well. Whipple is major surgery with a long and difficult recovery. What imaging has been done? Imaging is critical in terms of treatment.

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lhlawrence | @lhlawrence | 3 days ago
In reply to @keepingoptimistic "I hope so as well. Whipple is major surgery with a long and difficult recovery. What..." + (show)
Profile picture for keepingoptimistic @keepingoptimistic

I hope so as well. Whipple is major surgery with a long and difficult recovery. What imaging has been done? Imaging is critical in terms of treatment.

Jump to this post

@keepingoptimistic
Scheduled for PET scan on 12/29 and CT scan on 1/6 before we meet tumor board.
Tumor marker "cancer antigen 19-9" has receeded from high of 793 on 10/20 down to 103 on 12/8. All moving in the right direction. Looking for the right alternative to Whipple.

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