Pancreatic Cancer Group: Introduce yourself and connect with others

Posted by Colleen Young, Connect Director @colleenyoung, Dec 3, 2019

Welcome to the Pancreatic Cancer group on Mayo Clinic Connect.
This is a welcoming, safe place where you can meet people living with pancreatic cancer or caring for someone with pancreatic cancer. Let’s learn from each other and share stories about living well with cancer, coping with the challenges and offering tips.

I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. Chances are you’ll to be greeted by fellow members and volunteer patient Mentors, when you post to this group. Learn more about Moderators and Volunteer Mentors on Connect.

We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.

Pull up a chair. Let's start with introductions.

When were you diagnosed with pancreatic cancer? What treatments have you had? How are you doing?

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

Teresa, Volunteer Mentor | @hopeful33250 | Oct 27, 2021

In reply to @cindysavant "We called Mayo Clinic today and they are supposed to call in next few days for..." + (show)

That sounds wonderful, @cindysavant. Do you live very far from Mayo?

I look forward to hearing from you again. Will you post an update when you know about your appointment time?

cindysavant | @cindysavant | Oct 27, 2021

In reply to @hopeful33250 "That sounds wonderful, @cindysavant. Do you live very far from Mayo? I look forward to hearing..." + (show)

We live about 5 hours away. I will post when we have an appointment scheduled with the Mayo Clinic. Our doctor was supposed to fax records over today so maybe we will hear from them tomorrow.

macleish | @macleish | Nov 14, 2021

Hi - I am new to this site. I have stage 4 pancreatic cancer and have been stable for 9 months on Abraxane and Gemzar. 3 weeks ago I was told that I would not be receiving Abraxane for an unknown amount of time due to a national shortage by Bristol Myer Squibb. Has anyone else been affected by this shortage???? Thanks

Colleen Young, Connect Director | @colleenyoung | Nov 14, 2021

In reply to @macleish "Hi - I am new to this site. I have stage 4 pancreatic cancer and have..." + (show)

Hi Macleish, welcome to the pancreatic cancer group. I recently read about this shortage of production. @kay2 @dugancarol have also been on Abraxane and Gemzar.

Macleish, Is the generic version, Nab-paclitaxel, an option for you? This must be so concerning for you.

macleish | @macleish | Nov 15, 2021

In reply to @colleenyoung "Hi Macleish, welcome to the pancreatic cancer group. I recently read about this shortage of production...." + (show)

Hi! Thank you for your quick response.
According to the literature there is no generic production of Abraxane (brand name for Nab-paclitaxel). My understanding is that Paclitaxel is an older version of Nab-paclitaxel and that studies have shown that Nab-paclitaxel is a more effective combination drug with Gemzar.
Apparently Bristol Myers Squibb is working hard to stop any generic production of Abraxane.
BMS is apparently allocating the small supply of Abraxane and I am looking to grass root forums to see if this shortage is regional, local or truly national.
I appreciate the opportunity to connect with others via your forum.
Thank you

cindysavant | @cindysavant | Nov 16, 2021

In reply to @macleish "Hi! Thank you for your quick response. According to the literature there is no generic production..." + (show)

This is very concerning that a Pharmaceutical company would try to prohibit a generic brand of this medicine. It is a shame that people's lives depend on this medicine, yet there's a shortage. It appears that someone cares, apparently, more for money than the life of a person.

rexsan20 | @rexsan20 | Nov 16, 2021

In reply to @hopeful33250 "That sounds wonderful, @cindysavant. Do you live very far from Mayo? I look forward to hearing..." + (show)

Has you been on Creon?

Colleen Young, Connect Director | @colleenyoung | Nov 22, 2021

In reply to @rexsan20 "Has you been on Creon?" + (show)

Hi @rexsan20, I see you were asking members @cindysavant @macleish if they've been on Creon. Rexan, have you taken Creon? Did you have questions about it?

becklynne1960 | @becklynne1960 | Nov 22, 2021

I have just recently found out that I have a mass on my pancreas. My CA19-9 level is 1842. Has anyone had levels this high and it not be cancer.

Colleen Young, Connect Director | @colleenyoung | Nov 22, 2021

In reply to @becklynne1960 "I have just recently found out that I have a mass on my pancreas. My CA19-9..." + (show)

Hi BeckyLynne, welcome. It sounds like you've just received some worrisome test results but your doctors have not yet confirmed or ruled out pancreatic cancer. You are understandbly looking for hope that this isn't cancer. A mass on the pancreas can be non-cancerous and inflammation can be an indicator of cancer or inflammation.

Have further tests been ordered to find out more? How was the mass on your pancreas discovered?