Pancreatic Cancer Group: Introduce yourself and connect with others

Couldn't agree more

Thank you, but the spread to my lungs occurred before my chemo treatments. My January CBC, CMP and CA19-9 were all good 🙂 so I am still on my "break" from chemo.

Hoping Stave IV Survivor will jump in to comment.

I am not a medical professional, but I continue to read of folks who stopped chemo, were declared in remission and then there was indication, again. I don't understand it, but many have discussed the sometimes advisability of continuing chemo. So confusing.

The drs originally ordered 12 rounds of chemo. They’ve never spoken of continuing. They seem to think I’m in remission

I’m being treated at Mayo in Rochester. The tumor was shrunken and considered dead. My CA19-9 is 10. They consider me no evidence of disease.

I also have sarcoidosis in my lungs that was under control. Now it might be triggered or the cancer is metastasizing. I see my pulmonary dr on Tuesday.

I'm also considered inoperable due to blood vessel involvement. I've also been told I don't qualify for radiation due to flat lesions in my abdomen that the radiation wouldn't hit. But I'm still doing chemo--round 19 will be Tuesday. FWIW, at my appointment last Friday, my NP said she has several patients who are into their second year of chemo. My oncologist and I agree that I'll keep going on chemo until I decide to stop and/or the meds are less effective. I'm on modified Folfiri (we dropped oxaliplatin after round 8) at 60 percent of typical dose. Why did you decide to stop chemo? Can you restart? It's not the funnest thing (is that a word? ha!), but if it works and holds the cancer at bay, it might be worth resuming it.

marcia,

Where are you being treated?

In many cases, stopping chemo based on a standards of care approach, might be the wrong thing to do ... could you provide more info?

Hello
I have a tumor wrapped wrapped around arteries so no Whipple. I completed 12 rounds of chemo and 15 radiation treatments last July. I’m on a recheck every 2-3 months.

I’ve been vomiting and have constipation. They did see some new spots on my lungs at the last visit. This waiting is driving me crazy.

Thank you for this very informative thread…. I have been following you as well and have learned a great deal from your posts. I like your approach to finding a new MD at the same practice.
altc321

I have switched MDs at the same center. After my diagnosis, I was assigned to a particular MD. It wasn't clear why, so we (my husband and I) just figured it was because he had room on his caseload. Anyway, the first visit was not good; he was short and impatient and somewhat belittling when I asked questions. We didn't think a lot of it; both of us have had MDs who were, shall we say, less than patient friendly. Unfortunately, things didn't get better. My first chemo cycle was rough, but the doctor was less than sympathetic and not helpful, and our next three office visits weren't productive or pleasant either. On the way home from visit 4, we decided to switch MDs.

I did research doctors at nearby cancer centers, but my hope was to find an MD at my current center. I emailed a nurse practitioner with whom we'd established a rapport and told her my concerns. I asked for a referral to a local MD and also asked about the doctors at other nearby centers. She said it's not uncommon for patients to switch MDs in order to find one they click with, and she immediately switched me to another doctor in the same practice whom she recommended highly. Wow, what a difference! The new doctor is incredible. He trained at Mayo and MD Anderson. He spends time with me, doesn't snicker when I ask questions, answers clearly and completely, is willing to discuss ideas and options, and in general is just a pleasure to work with. So, it is possible to switch doctors within the same practice. I would not hesitate to ask for that if you are concerned about getting the best info and care from your current MD. My "end run" meant that I didn't have to talk to the first MD about my concerns, which was nice, so perhaps you have an advocate or a contact you can ask about this. But if not, I wouldn't hesitate to ask your MD for a referral to another MD in the practice.