Onset of diabetes. Pancreatic cancer?

Posted by margie444 @margie444, Feb 14 9:14am

I got diagnosed with dabetes 2 last summer. It seemed sudden. It is being controlled but I have all the symtoms of pancreatic cancer except jaundice. I have extreme fatigue and am losing weight. I also have trouble breathing.I see my doctor in two days. How realiable is the blood test?

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@stageivsurvivor

I’ve known Dr. Chari for many years now first meeting him at a PanCan Advocacy Day event in Washington. We’ve crossed paths several times since talking about the need for heightened awareness of late onset diabetes, the link and testing that needs to be done by the care provider.

After reading the initial post in this thread, I decided to to see where things are regarding awareness in the professional medical community. First stop today was a UPS Distribution Facility to ship a package. I’m standing in line wearing my PanCan.org sweatshirt and the person in front of me notices. He was a physician and had 4 patients that were diagnosed with pancreatic cancer. I asked him if he was aware of the relationship of late onset diabetes and the link to pancreatic cancer. He never heard of it and he is not a newly minted physician. So I provided him with the details and the suggestion of doing imaging and frequent surveillance of his patients based on papers that have been published.

My next stop today after UPS was to my PCP for my Medicare Annual Wellness Examination. He has been my PCP all through my pancreatic cancer journey. I asked him if he was aware of the link between late onset diabetes and pancreatic cancer and again-same answer. So my exam turned into making a second PCP aware of the link. My PCP thanked me for making him aware and will now be more vigilant in doing additional testing before concluding a diagnosis.

There are continuing education programs for every medical discipline. Physicians are required to do a minimum amount of continuing education annually. While my sample size is small, I would guess there is significant need in educating PCP’s and probably some endocrinologists on this link so there is less “missed opportunities” at earlier detection leading to a better outcome. If everyone reading this mentions to their PCP or an endocrinologist if they use one about the association, it’s a start in the right direction.

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@stageivsurvivor , You did your good deeds for the day! I think I need to get the PanCan shirt. My Buc-ee's beanie cap is quite a conversation starter with complete strangers, but I feel like my life's purpose would be better served if the random conversations steered toward cancer awareness and treatment than to a gas station with good brisket and clean bathrooms.

I think the trial I read about earlier is the one linked to this article:
https://letswinpc.org/research/early-detection-trial-type-2-diabetics/
(which is about the 9th one down, as of today, on the search page I linked to earlier).

The actual study itself is called NODMED:
New Onset Diabetes Management for Earlier Detection of Pancreatic Cancer
https://clinicaltrials.gov/study/NCT05188586

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@stageivsurvivor

I’ve known Dr. Chari for many years now first meeting him at a PanCan Advocacy Day event in Washington. We’ve crossed paths several times since talking about the need for heightened awareness of late onset diabetes, the link and testing that needs to be done by the care provider.

After reading the initial post in this thread, I decided to to see where things are regarding awareness in the professional medical community. First stop today was a UPS Distribution Facility to ship a package. I’m standing in line wearing my PanCan.org sweatshirt and the person in front of me notices. He was a physician and had 4 patients that were diagnosed with pancreatic cancer. I asked him if he was aware of the relationship of late onset diabetes and the link to pancreatic cancer. He never heard of it and he is not a newly minted physician. So I provided him with the details and the suggestion of doing imaging and frequent surveillance of his patients based on papers that have been published.

My next stop today after UPS was to my PCP for my Medicare Annual Wellness Examination. He has been my PCP all through my pancreatic cancer journey. I asked him if he was aware of the link between late onset diabetes and pancreatic cancer and again-same answer. So my exam turned into making a second PCP aware of the link. My PCP thanked me for making him aware and will now be more vigilant in doing additional testing before concluding a diagnosis.

There are continuing education programs for every medical discipline. Physicians are required to do a minimum amount of continuing education annually. While my sample size is small, I would guess there is significant need in educating PCP’s and probably some endocrinologists on this link so there is less “missed opportunities” at earlier detection leading to a better outcome. If everyone reading this mentions to their PCP or an endocrinologist if they use one about the association, it’s a start in the right direction.

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Hello stageivsurvivor,
This is really related to this thread, but I was talking to a friend about your case yesterday and if I remember correctly (though with chemo brain there’s a good chance I may not), you were in a clinical trial with a drug that is no longer on the market? But if it was a clinical trial, how many other people in your group were as successful as you as being “cancer free”? Thanks.

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@mnewland99

Hello stageivsurvivor,
This is really related to this thread, but I was talking to a friend about your case yesterday and if I remember correctly (though with chemo brain there’s a good chance I may not), you were in a clinical trial with a drug that is no longer on the market? But if it was a clinical trial, how many other people in your group were as successful as you as being “cancer free”? Thanks.

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Forgot the “not” related to this thread.

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@mnewland99

Hello stageivsurvivor,
This is really related to this thread, but I was talking to a friend about your case yesterday and if I remember correctly (though with chemo brain there’s a good chance I may not), you were in a clinical trial with a drug that is no longer on the market? But if it was a clinical trial, how many other people in your group were as successful as you as being “cancer free”? Thanks.

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Cure for my stage IV disease occurred as a result of doing 46 cycles of chemotherapy dosed in alternating groups of six starting with full dose Folfirinox of the original formulation used from FDA approval in 2011 to 2018 when (m)Folfirinox was FDA approved and 20% less concentrated in one of more of its components.

The clinical trial drug I am on is a PARPi inhibitor. The intent of the trial is to use it for maintenance monotherapy by recurrence and preventing a new primary cancer from forming. Patients with germline BRCa mutations have a an elevated lifetime risk of developing a new primary tumor in the pancreas-whether resected or not. There is also risk in this cohort of developing prostate and male breast cancer and ovarian and breast cancers in women.

The PARPi inhibitor is Rubraca (Rucaparib) and it is very much available for the cancers it has been FDA approved for. The company did not have sufficient funding to peruse approval from the FDA for pancreatic cancer and what factored into that decision in not perusing approval was the fact of the market share of a tiny market already held by market leader Lynparza manufactured by Astra Zeneca. The small Biopharma that developed Rubraca saw their Return on Investment would not make sense and instead pursued approvals for breast and prostate cancers. It did receive approval for prostate cancer driven by BRCa mutations.

Rubraca (Rucaparib) can be obtained with FDA approval when patients experience adverse events/side effects on Lynparza (Olaparib) or Zajula (Nariparib). I know of such a patient that was recently switched to Rubraca within the past three weeks to see if she can tolerate it better. I am also aware of a woman prescribed Rubraca for her PALB2 germline mutation and is around 5 years being successfully treated.

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@stageivsurvivor

Cure for my stage IV disease occurred as a result of doing 46 cycles of chemotherapy dosed in alternating groups of six starting with full dose Folfirinox of the original formulation used from FDA approval in 2011 to 2018 when (m)Folfirinox was FDA approved and 20% less concentrated in one of more of its components.

The clinical trial drug I am on is a PARPi inhibitor. The intent of the trial is to use it for maintenance monotherapy by recurrence and preventing a new primary cancer from forming. Patients with germline BRCa mutations have a an elevated lifetime risk of developing a new primary tumor in the pancreas-whether resected or not. There is also risk in this cohort of developing prostate and male breast cancer and ovarian and breast cancers in women.

The PARPi inhibitor is Rubraca (Rucaparib) and it is very much available for the cancers it has been FDA approved for. The company did not have sufficient funding to peruse approval from the FDA for pancreatic cancer and what factored into that decision in not perusing approval was the fact of the market share of a tiny market already held by market leader Lynparza manufactured by Astra Zeneca. The small Biopharma that developed Rubraca saw their Return on Investment would not make sense and instead pursued approvals for breast and prostate cancers. It did receive approval for prostate cancer driven by BRCa mutations.

Rubraca (Rucaparib) can be obtained with FDA approval when patients experience adverse events/side effects on Lynparza (Olaparib) or Zajula (Nariparib). I know of such a patient that was recently switched to Rubraca within the past three weeks to see if she can tolerate it better. I am also aware of a woman prescribed Rubraca for her PALB2 germline mutation and is around 5 years being successfully treated.

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Thank you for your response; not embarrassed to say I had to read through it 3x to wrap my brain around the message. You have the BRCA mutation and knowing the little I know about its mutation I can see why you are successful with beating the cancer and that’s fantastic! I’m looking forward to getting into 2 trials this year (if it’s possible) that deal with my mutations that deal with base substitutions; basing my hope on the likes of the covid vaccine work that was done even though it deals with mRNA (just my very uneducated guess based on my weak background in biology). Thank you for spreading hope for all of us.

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@stageivsurvivor

Cure for my stage IV disease occurred as a result of doing 46 cycles of chemotherapy dosed in alternating groups of six starting with full dose Folfirinox of the original formulation used from FDA approval in 2011 to 2018 when (m)Folfirinox was FDA approved and 20% less concentrated in one of more of its components.

The clinical trial drug I am on is a PARPi inhibitor. The intent of the trial is to use it for maintenance monotherapy by recurrence and preventing a new primary cancer from forming. Patients with germline BRCa mutations have a an elevated lifetime risk of developing a new primary tumor in the pancreas-whether resected or not. There is also risk in this cohort of developing prostate and male breast cancer and ovarian and breast cancers in women.

The PARPi inhibitor is Rubraca (Rucaparib) and it is very much available for the cancers it has been FDA approved for. The company did not have sufficient funding to peruse approval from the FDA for pancreatic cancer and what factored into that decision in not perusing approval was the fact of the market share of a tiny market already held by market leader Lynparza manufactured by Astra Zeneca. The small Biopharma that developed Rubraca saw their Return on Investment would not make sense and instead pursued approvals for breast and prostate cancers. It did receive approval for prostate cancer driven by BRCa mutations.

Rubraca (Rucaparib) can be obtained with FDA approval when patients experience adverse events/side effects on Lynparza (Olaparib) or Zajula (Nariparib). I know of such a patient that was recently switched to Rubraca within the past three weeks to see if she can tolerate it better. I am also aware of a woman prescribed Rubraca for her PALB2 germline mutation and is around 5 years being successfully treated.

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Hi, I have not participated in awhile but have been reading daily posts. It is my sister, (Stage IV) being treated at MSK since September 2023 now completed 12 rounds Folfirinox. Due for CT scan on 3/12.
I looked at her molecular genetic report and found: Pancreatic cancer panel:
ATM (NM_000051),BRCA1 (NM_007294),BRCA2 (NM_000059),CDK4 (NM_000075),CDKN2A (NM_058195,NM_000077),PALB2 (NM_024675).

There was a very, very, long secondary germline list that I did not include here.

I am wondering if the BRCA1, and BRCA2 reported above was similar to yours and perhaps worthwhile asking her doc at MSK to consider your regimen above? The 46 cycles as described and the PARPi inhibitor?

Where were you treated with this regimen?

Thank you so much for your contribution here. I have been concerned since her CA 19-9, and her CEA went up slightly right before she was due for her next tx. Then, she had to skip her last chemo appt due to low platelets. Had a tx this week and we have "scanxiety" till results of CT are discovered.

Thanks again.

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