Pancreatic Cancer Group: Introduce yourself and connect with others

@diana865 this is great news! Shrinkage means that you are on a regimen that is working! For some that is not the case and they have to keep changing regimens.

@waltsocal
I am now a 24 month thriver of this disease. Diagnosed stage IV.
I’ve seen se real for second opinions at different points and asked many questions. I have surmised that PETs are not seen as necessary when tumor markers, scans, and biopsies confirm cancer. Systemic chemo is their answer to cool the fires-wherever they may be raging. CT machines that incorporate PET scans exist and I have done this twice. It sometimes highlights areas that are not cancer-most often thyroid .

MRIs of the local areas like pancreas or liver are the most helpful to surgeons for truly understanding how/when/and possibility to get you to a
surgical next step.

I’m nothing special but I definitely have not quick work or volunteering where I can be useful. We can control a few things.. our diet, our rest, who we surround ourselves with but most important is your attitude. Choose to think of this as a chronic disease that can be managed. If your doctors don’t see it this way, perhaps look for a group that does. Often it’s led by our attitudes, not them!💜💜

Hi. I’m Diane and I was diagnosed with Inoperable Stage 3 Pancreatic Cancer in August 2023. It took the a trip to the ER to get diagnosed after being sick for a year. I just had my 10th chemo treatment and will most likely have radiation following. My last scan showed the tumor almost shrank by half. I know I have a long battle ahead but trying to be positive.

You're very welcome. Wish I had better answers, but I'll give you what I've got:

1) If I get chemo on a Friday, the fatigue usually lets up by Monday evening, so I have 10 good days before the next treatment. You would get 3 good days between 1st-2nd and 2nd-3rd treatments, then 10 good days between 3rd and 4th, etc... Maybe less fatigue for you without the cisplatin. Maybe less fatigue if you're also retired. 😉 Consider pestering them about a blood transfusion if necessary.

2) I've heard several oncs say people with mutations of the ATM gene do well with a platinum-based therapy. I don't recall seeing the paper, but my current onc cited Eileen O'Reilly from MSKCC in explaining his choice of my regimen. They wouldn't mix Oxaliplatin with Gemcitabine (untested and/or double serious risk of neuropathy), so GAC is what I got.

3) I'm not sure what's up with some doctors and their thoughts on PET scans. I've heard the radioactive sugar (FDG?) tracer is very expensive. I've heard docs say the PET is generally just used after finding a single tumor (at initial diagnosis) to get a "global" look at the rest of the body for mets. One doc told me they can see all the "attributes" distinguishing live tumors from necrotic tissue on their MRIs, and once they're only looking in a small region (e.g. abdomen) for tumors, they can actually see finer details on MRI than they can on PET. But, there are machines that combine the technology (PET+MRI or PET+CT) where they can get the benefits of both in one scan.

I have not had a PET scan since my initial diagnosis 2.5 years ago, despite asking several times. I might get one this spring if things work out, but it's iffy. My big beef is that I requested a PET scan 1.5 years ago after my recurrence was first spotted on MRI. They were not 100% sure the mass was cancer, so they immediately followed up with EUS biopsy, which was negative and diagnosed as chronic pancreatitis. The outcome of that was to wait 6 weeks and redo an MRI, which (along with CA19-9 and positive Signatera) convinced them it was indeed a recurrence of the cancer.

The bummer is that I think an immediate PET scan would have seen radioactive sugar uptake in the tumor and overruled the bad EUS biopsy soon enough for me to have surgery or start chemo before the mets occurred. 🙁

If I could rewind time, I would have been a LOT more assertive about getting the PET scan and paying for it myself if insurance didn't.

Markymarkfl - THANK YOU - so much !!!

Great feedback and encouragement for where I am right now.
Wishing you the very best on your rough road. I can only imagine how tough it is to keep up work along with your chemo regiment. I can understand your reluctance to stop the abraxane. I'm hoping to find the magic mix that will keep me around longer - if I'm not bedridden all the time.

With your every two weeks of chemo, does it give you some recovery time that you can actual get around ok?

1. I'm concerned that my oncologist wants me to do three weeks on for G+A and then one week off before starting again. Seems like I would always be fatigued.

2. Is the cisplatin something specific to your cancer? How did they decide you needed it?

3. Not sure why my oncologist won't do a PET scan at this point. You would think he would want a baseline at this point with my high CA19 along with the cancerous lesion on my T3 vertebrae. How do you become more assertive about requesting the test?

Hello @weezi and welcome to Mayo Connect. I'm also glad that you found this support group and I appreciate you sharing your experiences with everyone on this forum.

I certainly applaud you for being so proactive about your care. It really is important as you said, "...that we know our bodies and if you notice something unusual, call your PCP!!!" That is the best way to become our own patient advocate.

I am glad to hear that you are feeling good now. I understand that the side effects from digestive tract surgery can be ongoing. I've had three surgeries of the upper digestive tract, and it takes a lot of trial and error to find foods that trigger symptoms. It's not an easy task. Have you considered keeping a food, exercise journal to see if there are any food, drinks or activities that increase your symptoms?

I was able to meet with a hospital dietician and her suggestions worked well for me. I hope that you are able to find some more guidance on an eating plan that might help with some of these symptoms.

Have you asked about a referral to a dietician since your surgery?

@waltsocal ,

1: I'm getting Cisplatin on top of the G+A. Just had 1 year anniversary, 27th bi-weekly treatment. It's been much easier for me than 12 rounds of Folfirinox was over my 6 months pre-Whipple.

2 & 3: The oncs told me people generally develop resistance to the drugs or too much neuropathy or low blood counts after 6-9 months. I'm still holding up well. I get CA19-9 tested before chemo every 2 weeks, an abdominal MRI, chest CT, and Signatera blood test every 2 months or so. CA19-9 dropped rapidly on GAC, from almost 700 last year to low 30's (normal range!) about 2 months ago, but it has crept up to 53 as of last week. Last MRI was the first one to actually show shrinkage of tumors, by a tiny bit. The added cisplatin might be helping me out because of the ATM mutation, but I think the Abraxane is also playing a large role, since the platinum (oxaliplatin) in my Folfirinox didn't seem to do much.

4: I can't really define stable, but two oncologists have emphasized imaging more than anything else. I think one defined "stable" as no new tumors and no growth more than 10%. CA19-9 has been mostly under control, and Signatera continues to be negative, so that's all "stable disease" on their reports.

5: I never really got over the Folfirinox fatigue until I finished, but it did always get better a week after treatment. Was living on coffee. On GAC, many factors at play, but some changes in sleep situation, reducing work-related stress, improved health of other family members, have helped. One blood transfusion, a prescription for Ritalin, and more coffee have all helped.

Two docs are pushing me to reduce the Abraxane, which might reduce fatigue even more, along with reducing neuropathy and maybe regrowing some hair and eyebrows. I'm hesitant to drop any drugs from a recipe that seems to be working, until I can get into something better by way of a clinical trial.

You could well be around for a lot longer than a year, so keep making plans for the future! Seriously, if the G+A does its job, you could actually be feeling good much of this year. If it's not controlling the cancer (soon), ask if adding cisplatin would help. I believe the GA therapy is typically 3 weeks on and one week off. I'm not sure if my GAC is every other week because of the cisplatin or because of my travel requirements, but getting a two-week break every time definitely helps with recovery, so ask if that's an option for you as well.

And be a really aggressive advocate for yourself and a non-stop researcher for clinical trials. If you develop resistance or intolerance to chemo, you'll want the backup plan to already be hatched instead of starting from scratch. Some of the clinical trial drugs are even easier to tolerate than G+A, and possibly more effective (depending on patient/genetics/etc).

Thanks for the feedback on your treatment. I met with my oncologist today. I have a cancerous lesion on my spine that they will treat with radiation. Of course I have to have a biopsy first since the CT and MRI were not conclusive enough. Although they are sure that the radiation treatment(s) will wipe out the lesion on my T4 vertebral, they're pretty sure the cancer has gone to other areas of my body. (CA19 at 400 now).

So, I will be starting Gemcitabine+Abraxane in March. One treatment per week for 3 weeks and then a week off. And then start all over.

A few questions:
1. How bad are the side effects compared to Folfirinox? (which I had pre-whipple)
2. How long before the G+A was no longer effective?
3. Did they monitor this with CT and CA19 results?
4. What is your definition of "Stable"?
5. How debilitating was it for you - what helped you to overcome fatigue etc.

Thank you again for your feedback and insight.
The oncologist said that if I can tolerate the chemo, I may have "a year or so".....

Hell o everyone. I’ve been looking for group to join and happy I found this great site!

I count my blessings everyday that I reported white stool to my PCP who then ordered CT and a small cyst was found in the head of my pancreas.

Because my sister and grandfather had pancreatic cancer and an uncle with bile duct cancer, they followed me closely.
1 year after finding the 7 mm cyst an MRI was done and cyst was unchanged but was on main duct.
2 1/2 months later an EGD sono showed the cyst had grown to 10.1 mm.
On 5/13/2022 had a Whipple for suspicious main duct cyst which was found to have dysplasia!
I was fortunate to have to have a surgeon following me that averages 60 Whipples a year.
I tell everyone I can that we know our bodies and if you notice something unusual, call your PCP!!!
I’ll be 2 years post op and feel good except for some gas problems, abdomen cramps, with BM urgency but usually gone by late morning.
Good to hear what foods are better post Whipple. That was lacking by dieticians at hospital. There doesn’t seem to be a good recommendation.

Thank you so much for your response - it was extremely helpful and detailed !

Whew! So much all at once. That is daunting, I know. There are lots of people on this board with lots of expertise, and I hope some will chime in to share ideas as well.

I think the first big question is what your husband wants to do. He's the patient and needs to set the agenda. Once you all have conferred and figured that out, then you can proceed on the path you've identified. Since no surgery is recommended, chemo would likely be his weapon of choice. That would lead to questions about which set of medications to use (there are generally two standards of care, but a whole lot of variations within those) and what to expect with those, and you can discuss those with the MD.

In my case, I decided to fight my cancer. (FYI, I'm stage 4 pancreatic and inoperable due to blood vessel involvement.) My husband is totally supportive. He goes to all appointments and chemo infusions with me. We plan our questions in advance, and I'm usually the one asking them, but some are his questions as well. (Did that make sense? Ha.) So yes, your asking questions is totally appropriate and understandable, as long as your husband is OK with it.

Re palliative care, at my healthcare system, I was immediately referred to a palliative MD right after my diagnosis. BTW, palliative care and hospice are not necessarily the same thing. At my system, palliative handles side effects and symptom management. I can get fluid infusions, massage therapy, acupuncture, integrative med and dietitian consults, prescriptions for neuropathy and other issues, chaplain support, etc.--no direct cancer treatment, but a host of things to help manage the cancer and the treatment. Hospice would be appropriate when treatment is stopped, and the palliative MD is the one who would help set up hospice care if/when I decide to stop treatment. So depending on what your provider offers, I would definitely say yes to palliative care right now. If you get on their patient roll, then it's easier to get to them when you need them to manage symptoms and such.

There are tons of posts on the various chemo regimens and how to manage them, diet, comfort care, etc. You can search for topics and see what pops up. Hopefully others will offer ideas as well.