Connect
Pancreatic Cancer Group: Introduce yourself and connect with others
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?
Like
Helpful
HugInterested in more discussions like this? Go to the Pancreatic Cancer Support Group.
Connect
Thanks a lot for that feedback.
I’m really thinking I need to push the Oncologist to think about every 2 weeks so that I can tolerate the G+A for a long period of time.
I had the G+A for 44 treatments. My oncologist said the 3 weeks on & 1 week off was too much for most people & they ended up having to skip the 3rd treatment. That worked out great for me. After about a year we had decreased the dosage once & later switched to every other week instead of 2 on and 1 off.
Wishing you the best when you start in March.
-
Like -
Helpful -
Hug
3 Reactionskatiegrace,
Which center of excellence?
cpill,
Is your husband being treated at a center of excellence for pancreatic cancer? This is the first question usually asked on this and other sites.
If he is not, I offer that you should continue chemo while transferring to a center of excellence ... a place like Mayo Rochester, MSKK, MD Anderson, etc. Please do not stop chemo until he has been evaluated by one of these types of centers. I also personally recommend that you relocate to one of those centers - live there until treatment is complete.
-
Like -
Helpful -
Hug
2 ReactionsMy name is Cheryl and my husband is the patient. We found out in late July with a CT scan that he hand pancreatic cancer on the head of pancreas. He started out very jaundice and had to have a stent placed before the Whipple surgery. When jaundice was better they attempted the Whipple and it was a fail due to the cancer being wrapped around the portal artery. The recovery was horrible but after he was healed they did 4 rounds of chemo. The chemo did not shrink anything but the cancer had not spread anywhere else. Radiation is the next step and the first pet scan was done. I asked that oncologist to go over the scan with me because I wanted to see if you could actually see it wrapped around the artery and I did see it a bit. Why would they not have done a pet scan in conjunction with a ct scan to start? Why would you put a 75 year old man through that surgery if you could see that?
-
Like -
Helpful -
Hug
1 Reaction@katiegrace
I will put you on my prayer list for February 15 and several days afterward.
Pray for strength and patience in your recovery. You can do this! Allow the nurses to help you and plan to follow the dietary guidelines afterward. Don’t be scared. You are taking positive steps towards being a thriver. 💜💜
-
Like -
Helpful -
Hug
2 Reactions🙏
-
Like -
Helpful -
Hug
3 Reactions@waltsocal , I was kind of surprised the Signatera (or equivalent) test was not automatic.
They take tumor tissue (from a biopsy, Whipple, or whatever) and send it to the Natera company for analysis. Natera builds a special blood test called "Signatera" that looks specifically for DNA matching your tumor. (They call this ctDNA -- circulating tumor DNA -- because it's from the tumor, and circulating in your blood stream).
Similar to CA19-9, it's a fairly useful measure of tumor growth/activity in your body, but it's much more specific. It's said to also be relatively sensitive, but it wasn't sensitive enough to pick up my recurrence until too late. But I've been sending them new blood samples every 2-3 months, and it has confirmed that the GAC chemo has been keeping cancer below levels they can detect. (That doesn't make me NED because the MRI and elevated CA19-9 are reasonable evidence of disease, but they do support my current diagnosis of "stable disease" under good control).
Anyway, I had to ask my care team to submit a tissue sample from my Whipple procedure, several weeks after the surgery. They did have enough leftover tissue build the test from, and it's been a very useful supplement to gauge the effectiveness of my treatment.
I was also kind of surprised they didn't send tumor tissue off for NGS (Next-Generation Sequencing, a fancy DNA analysis) immediately after the Whipple (which was 20 months ago). I asked the team about it 2 weeks ago, and they are now ordering the xT and xR tests from Tempus.
They might have thought after surgery since my margins were all clean that they didn't need to do all this analysis, and would not be cost effective to do so as the reason for skipping it. Now that I've had a recurrence and am looking into clinical trial options, this is crucial information to have.
I can't emphasize how important it is to be proactive and assertive, and if you don't find your care team responsive to requests like that, consider offering to self-pay for them (to get the results in a timely manner) while you look for a more responsive care team.
Edit/Update:
1) The Guardant FX 360 blood test is sort of a "liquid biopsy" that can identify tumor DNA in your bloodstream without a tissue sample. It also detects certain mutations that may be targetable, MicroSatellite Instability and Tumor Mutational Burden properties) and returns a list of clinical trials that might be relevant.
2) Most patients get an EUS and FNA biopsy long before they get a Whipple, but I never hear of these biopsies being sent off for NGS or Signatera. I would ask the surgeon before long before the EUS if they can get enough tissue to order these (if the intraoperative pathology detects malignancy) so you have it in process while you're waiting for the follow-on oncology consult. Having this info early could completely steer them to a different treatment than the statistical median SoC treatment you're likely to get without it.
-
Like -
Helpful -
Hug
3 ReactionsPrayers to you !!
Wish you luck with the Whipple surgery - it is currently the best way to go if you can get it done.
Will you be in the hospital for the entire time your primary surgeon is away? My only suggestion I can give you - find out who will be the primary contact and secondary backup and try to at least meet them beforehand. Just make sure that your family team knows who to get in touch with if needed.
-
Like -
Helpful -
Hug
3 ReactionsI am stage 4 PDAC. After 6 mths of chemo I am feeling pretty god and doing overseas holidays. Next week New Zealand with my wife and in March, Japan with my wife, sister and brother in law.
When I was having fortnightly chemo we would do 4 day escapes between cycles.
-
Like -
Helpful -
Hug
3 Reactions