Pancreatic Cancer Group: Introduce yourself and connect with others

I'm sorry to hear this. I don't know anything about pancytopenia, but I too am designated stage 4 and I have heart issues. In fall 2020, I had a viral infection. (Likely covid, although I never tested positive for it, but MDs agree the case records sound like it.) I went into total heart block and was admitted via the ER. After a week on ECMO, I crashed even more. Long story short, I spent 3 weeks on a ventilator, had two open-heart surgeries, developed congestive heart failure, and now have an ICD. I'm 71. I tell you this because I'm currently receiving chemo and have been since last April. Why is Kaiser declining to offer you chemo? Have you had a second opinion or a third opinion? If you really don't want to have chemo, I fully respect that. I see how that could be the logical choice. But if you want to consider treatment, I would fight tooth and nail to get to another clinic and get a new evaluation.

I know there are others on this board who are not currently in chemo and some who have decided to forgo any treatment except palliative care. I am hoping they will chime in with their experiences and share their knowledge. I wish you all the best.

The Kaiser oncologist told me I couldn't have chemo because my blood counts (red, white and hemoglobin) are too low and chemo would lower it even more which could cause my death. I got a second opinion from another oncologist with Kaiser and they said the same thing. Any treatment they would try could also cause my death. It's strange because I feel OK except for some pain in my stomach that wraps around to my back but I'm still eating well and not losing weight, yet. I was hoping someone or their survivor that was in a similar situation could tell my what I have to look forward to and what nearing the end was like to help me prepare. Thank you for your comment.

@davod , I'm also sorry to hear about your situation, but you deserve a real second opinion from OUTSIDE of KP. Institutional groupthink is rarely good. Most doctors and institutions are too self-absorbed to contradict their immediate colleagues or help patients look for trials outside their own walls.

It sounds like your oncologists at KP basically just dismissed you. If you're up for a fight, there are other treatment avenues and definitely other institutions to consider.

DISCLAIMER: I have no medical training, just 2.5 years experience as a PC patient, the last 16 months as a very healthy stage-4. With that said...

You didn't mention what type of pancreatic cancer you have (adenocarcinoma, acinar cell carcinoma, Squamous Cell Carcinoma, Adenosquamous Carcinoma, Colloid Carcinoma, neuroendocrine tumors (NETs)), how far the disease has spread, which other organs are definitely affected by metastases, what your CA19-9 levels are, etc... Your docs should have been very forthcoming with that info, which would help yourself and everyone else understand what treatment options and institutions might be worth considering.

You should start by immediately getting germline and somatic blood testing done to see if you have any DNA mutations that could be targeted by a specific drug. Feed the results of that ASAP to a patient advocate at pancan.org ; consider cancercommons.org as well, and see what you can find on your own at clinicaltrials.gov

There may be trials out there that are not as hard on your blood counts as the KP oncologists were thinking, and possibly even lower doses of traditional "monotherapy" that might benefit you and possibly buy you more than their anticipated 2-6 months. Although Folfirinox and standard doses of Gemcitabine + (Abraxane or Cisplatin) would likely be hard on you, any of the individual ingredients in those recipes might be life-extending candidates. Oral capecitabine (jokingly referred to as "Gemcitabine-Junior" in another thread here), or carboplatin (a more tolerable platinum agent than oxaliplatin or cisplatin) might be helpful.

A more "engaged" care team might be able to manage your blood counts with blood transfusions, Neulasta, epoetin, even possibly testosterone to raise hemoglobin and energy.

There are immunotherapy agents and targeted therapies that might be very manageable with your other conditions. My 84-year old father-in-law has had several heart attacks, congestive heart failure, and kidney cancer (+ nephrectomy -- removal of one kidney) to go along with dementia... and is doing surprisingly well after a rough start on his immunotherapy.

There are also numerous non-traditional therapies, depending on the extent/locations of your cancer, how far you can travel, how disqualifying your blood counts might be on a specific trial, and if cost is a major issue. Tumor Treatment Fields equipment has limited effect without an accompanying chemo drug, but virtually zero side effects. There are implantable chemo pumps that just deliver chemo locally in small doses to organs like the liver, without having such a huge impact on you systemically.

There are clinical trials going on for all sorts of "vaccines" from CAR T-cells to Natural Killer cells to "personalized peptide protocol" treatments (Canada/Germany, expensive and not easily researchable in the US).

Of course we all respect whatever decision you make, as long as it's truly YOUR decision and not one made based on bad or limited data. Wishing you the best! --mm

MM, Thank you for your kind reply. I've felt the same way about Kaiser dismissing me. I have adenocarcinoma. It started in the tail of my pancreas and has spread to my liver, lungs and hip bone. I like your dna mutation that could be targeted by a specific drug suggestion and even though Kaiser won't use any treatment that doesn't have a long history supporting it, there are other places here that may. I will contact your suggested sites and once again thanks for your kind help.

@davod , You're very welcome, and I hope something in there "pans" out (pun intended) as helpful.

Regarding the genetic tests: Unless you've already had a tumor biopsy with tissue available, your immediate options are limited to the "basic" blood tests. Both types take several weeks to process, so the sooner you get them done, the sooner someone can consider action based on the results.

The germline/hereditary tests are usually ordered by an oncologist or genetic counselor, and the somatic (environmental/spontaneous) mutation tests are usually ordered by an oncologist. In both cases, the doctor doesn't have to see you to get it done, only to discuss the results afterward. Their office can simply call the test providers (Invitae, Guardant, Tempus, Natera, etc) and have them send out a nurse or a phlebotomist; they will come to your home or office with the appropriate kit, take your blood on the spot, and FedEx it directly to the lab for you.

So, before KP is "KaPut" ask your existing oncologist there to order these asap. If they decline because there would be no new action based on it, then you know you're being dismissed. You should still persist in asking them to do it so you'll have the results by the time you're able to get an outside second opinion consult scheduled. If they still refuse, ask your primary care doctor to order the tests (as long as state law doesn't prevent it). Offer to self-pay if necessary, to show them you're serious, but usually there's some form of compassionate assistance financing with the labs.

I also recommend trying to get your CA19-9 level tested at regular intervals in the interim. This will give you an idea what you're up against, as well as a pre-treatment baseline trend that helps you understand later whether the treatments are helping or not. Every 2 weeks would be ideal (IMHO), but not more than 3-4 weeks apart. Your primary care doc can order that as well, and it can be very affordable ($25-$50) if you check sites like mdsave.com and anylabtestnow.com. Just try to be consistent with the intervals and use the same lab every time to provide an apples-t-apples comparison and meaningful trend.

If you find yourself with a truly engaged and caring team, ask if they can do percutaneous tissue testing. With liver and lung mets, there might be really easy access with only local anesthesia. PanCan.org will pay to have this tested for mutations by Tempus. If they get enough tissue, they can also send some to Natera for them to construct a "Signatera" circulating tumor DNA (ctDNA) test to check for residual disease. Signatera is a blood test that looks at your blood periodically and checks for ctDNA that exactly matches the tumor it came from. The amount found is a good indicator of how well you're responding to treatment, and can help inform your decision of whether to continue or not.

As long as you're in for the fight, don't let them tie both hands behind your back! Come out punching, kicking, biting, whatever it takes! 🙂

"Break a leg" as they say. Cancer's leg, not your own!!!

Marienewland,
Thank you for the congrats. It is a hard decision to make to take a break from chemo. My body seemed to be telling me it was time. No cisplatin at all; only the gemcitabine & Abraxane. My oncologist did have to decrease the dosage some due to side effects & that helped a lot. Radiologic remission is the tumors are no longer seen on CT scans (last 2 for sure) & metastatic sites on my lungs were stable. Also, my CA19-9 went from 450 (at diagnosis from EUS) to 8 and was hovering near 35. My doc was not too worried about the CA 19-9 since it can be affected by other issues such as benign breast disease, emphysema, inflammation, gallstones (all issues with me for a long time). Next CT is 25 March and visit with oncologist on the 28th.

Thank you MM. I have an appointment coming up with the palliative care team and will discuss this with them and see what if anything they can do for me. If Kaiser won't help me there is a City of Hope location near me I will contact for help.
Thanks again.

Wow! Down to 8. That is great. I guess they call it radiologic remission instead of NED now?
Whatever. We know that we must be on alert and continue to scan quarterly at least!
I took a one month break from chemo in February and started back on gemcitabine alone. Upcoming scans will tell the story but I have to believe it was a healthy decision. If a new occurrence has popped up I will know that it is still active and have yet another data point to track the disease. I hope yours will stay in remission and you can look forward to enjoying Spring!

marienewland,
I did not find your questions to be intrusive. It took me so long to find this site which helps us all with new ideas and treatments. (& I was diagnosed in 2022 @ Mayo!)
Cisplatin was never mentioned to me by Mayo or my local oncologist. Just the gemcitabine & Abraxane did do a fantastic job:) You are not a "Debbie downer", I get my CA 19-9 checked monthly. I have a CT every 3 months. This month is my CT and I will see my oncologist 4 days after the CT. My CT went down 2 (34.9) points @ the end of January but is up to 43.6 in Feb. and we will see what is going on. I hope it comes down again in March. It has been as low as 8 about a year ago. My understanding is that it can fluctuate depending on lots of things like inflammation, gallstones, emphysema & benign breast disease to name a few (all of which I have). So I am waiting to see what this month brings before I start to worry.
Life is much better on a break but the concerns do not go away. Must stay vigilant.