1. < Pancreatic Cancer
Moderator

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.

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)
@macleish

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

Jump to this post

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.

REPLY
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)
@colleenyoung

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.

Jump to this post

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

REPLY
1 reply
Moderator
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)
@macleish

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

Jump to this post

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.

REPLY
1 reply
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

REPLY
1 reply
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)
@hopeful33250

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?

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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.

REPLY
1 reply
Mentor
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)
@cindysavant

We called Mayo Clinic today and they are supposed to call in next few days for apptmt time hopefully.

Jump to this post

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?

REPLY
2 replies
cindysavant | @cindysavant | Oct 26, 2021
In reply to @hopeful33250 "@cindysavant, Do you think that you might be able to get a second opinion on his..." + (show)
@hopeful33250

@cindysavant,

Do you think that you might be able to get a second opinion on his cancer?

Jump to this post

We called Mayo Clinic today and they are supposed to call in next few days for apptmt time hopefully.

REPLY
1 reply
cindysavant | @cindysavant | Oct 26, 2021
In reply to @hopeful33250 "@cindysavant, Do you think that you might be able to get a second opinion on his..." + (show)
@hopeful33250

@cindysavant,

Do you think that you might be able to get a second opinion on his cancer?

Jump to this post

Yes

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Oct 25, 2021
In reply to @cindysavant "Thanks you for getting back with me. Yes, he has a mass in his liver (appx..." + (show)
@cindysavant

Thanks you for getting back with me. Yes, he has a mass in his liver (appx
10 cm). There are lesions in his rib, his lung, some area in bone and head
of pancreas.

Jump to this post

@cindysavant,

Do you think that you might be able to get a second opinion on his cancer?

REPLY
2 replies
cindysavant | @cindysavant | Oct 23, 2021
In reply to @hopeful33250 "Hello @cindysavant and welcome to Mayo Clinic Connect. I can certainly understand the concern you have..." + (show)
@hopeful33250

Hello @cindysavant and welcome to Mayo Clinic Connect. I can certainly understand the concern you have shared about your husband's treatment plan. Have you considered getting a second opinion? I would recommend that you visit a Cancer Center of Excellence and get a second opinion from an oncologist with a background in research and vast experience in treating this type of cancer.

Here are some websites for the American Cancer Society and National Pancreas Foundation.
https://www.cancer.org/
https://pancreasfoundation.org/about/
If you search their websites or call them they can undoubtedly direct you to some specialists in your area to assist you in determining the best treatment for your husband.

As you know, some people do have remarkable life spans after their diagnosis depending on the location of cancer within the pancreas.

Do you know the location of your husband's pancreatic cancer?

Jump to this post

Thanks you for getting back with me. Yes, he has a mass in his liver (appx
10 cm). There are lesions in his rib, his lung, some area in bone and head
of pancreas.

REPLY
1 reply
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