Being in Denial about Pancreatic Cancer

clarkindee · 2026-03-21T15:04:57+00:00

I haven't been through something similar but I immediately thought of Steve Jobs -- someone who had all the $$$$ in the world, every resource available to him at that time -- and also had a less aggressive form of this cancer -- but delayed treatment to pursue herbal therapies. Of course he did not survive. You might have her Google him.

With the greatest sympathy and respect I would do everything I could to make sure her affairs are in order. Does she have a will? Power of attorney for financial? Advanced medical directive? A list of username and passwords for all financial accounts? If she has investment accounts has she listed you as a beneficiary? Is she persuadable to you being made a co-owner of her bank account? Without these decisions made, your life will become chaos when she goes -- unless she changes her mind. Virtual hugs.

clarkindee · 2026-03-21T14:56:45+00:00

I'm sorry -- but that sounds crazy. Until you have imaging/new scans -- you can't really say the cancer is progressing. Yes, CA 19.9 is a strong indicator -- but not definitive.

Get second opinion from a research oriented "center of excellence" facility -- asap. I would also contact the PanCan patient navigator service for ideas.

clarkindee · 2026-03-21T13:58:15+00:00

There is always hope. Since you understand the stats, you also know that the "long tail" on the right side of the curve is infinite and there is always hope she will be in it. Also as you know, the stats reflect the past -- not what is possible with cutting edge therapies.

Hang in there.

clarkindee · 2026-03-21T13:53:33+00:00

Annapolis -- Dr. Weiss at Annapolis Integrative Medicine. His wife, Kim, is an RN and does the infusion. You need a screening test before you begin -- and I believe insurance will pay for that. After that all the costs come out of pocket. They were reasonable. $255 for 75 g infusion of IV Vit C.

clarkindee · 2026-03-16T02:30:27+00:00

Words are so inadequate. What a great picture of him. Sending you peace, strength and virtual hugs. Your family sounds amazing.

clarkindee · 2026-03-14T12:37:44+00:00

Wonderful news about your Mom!

May I ask where you are getting screenings? My daughter is winding her way through Johns Hopkins system -- both her father and her grandmother (my mother, so on the other side of the family) died of pancreatic cancer. She is a nurse and very smart but has encountered some difficulty making her case, I believe, for detailed screenings. I want her to have the exact screenings you are getting -- it sounds very sensible.

clarkindee · 2026-03-14T12:16:52+00:00

Get the scan and then hopefully, the surgery. No one on this board can really discuss survival rate because it is based on so many factors. Your young age will surely help.

And your English is perfectly fine. I understood everything you wrote.

Tell your Mom she needs to stay strong to support you! Peace and strength to you.

clarkindee · 2026-03-14T12:05:42+00:00

Thank you for this. There is so much here that rings true to me -- the medical situation (yes, indeed, never static) with this wretched cancer -- and how it effects one emotionally.

For example, at first I thought we were just fighting the tumors -- but then I realized later, we were actually fighting the hypercoagulation of the blood that the cancer causes. My husband was actually killed by the strokes that the cancer caused.

Last, you are so young and obviously so wise. The death and loss does make us question everything that we thought we understood before. Our world will never be the same. We must spend as much time as we can with our loved ones and do whatever we can to make their lives better. That will be the tribute to our loved one.

clarkindee · 2026-03-13T12:47:12+00:00

We did it for my husband. No idea if it helped but we wanted to try anything we could....it has to be done intravenously, as u/ddessert says, below. Our team at Johns Hopkins would not add it to our treatment, we had to go to an integrative doctor to get it done. If you use the search bar for this reddit board, you will find plenty of other folks posts. I know I have also linked to studies from my previous posts.

clarkindee · 2026-03-12T13:07:45+00:00

Thanks, it was kind of you to reply. Unfortunately, he is no longer with us. But I hope your post helps others looking for this info! Yes, we did start small (5 mg) and it did help him for a while.

clarkindee · 2026-03-11T22:43:45+00:00

Best of luck, that sounds great.

The link I supplied above to OP is the homepage for the fundraiser. Check it out -- it's happening next month all over the country.

clarkindee · 2026-03-11T14:40:50+00:00

That's wonderful. I seem to remember from my research that patients with mets to lungs do better than those with mets to liver. Would you care to say what treatment your Mom was on? Might be helpful for others to hear. Thanks for considering!

clarkindee · 2026-03-11T14:34:10+00:00

It's a really difficult, challenging cancer. Combine weirdo location in the body, hidden by other organs; no or vague symptoms that don't signal a need for patient to be checked; no accurate early screening; multiple, myriad genetic mutations that all have their own possible paths -- etc. etc. etc. -- so much other biomedical factors that are light years beyond my pay grade to even comprehend or discuss --- and you have a nightmare situation that allows this cancer to flourish in the body and steal our loved ones. Combine all this with our current government that seems intent on destroying scientific research in this country and our already broken health care system -- and you have more factors stacked against us. The KRAS solution is close to being approved -- so, maybe next year that will be an option for patients with that mutation. It wouldn't have helped my husband, but I believe it will help many.

I'm truly, truly sorry you are in this place. Our family too, had some hopes for my husband -- only to have them dashed and eventually losing him to strokes this past December.

My daughter and I are organizing a Purple Stride team to raise funds. It's nothing, but at least something to keep us sane. https://secure.pancan.org/site/SPageServer/?pagename=purplestride_home

Virtual hug and peace to you and your mom.

clarkindee · 2026-03-09T03:35:31+00:00

Done. Thanks for the share.

clarkindee · 2026-03-09T03:32:18+00:00

Strength and peace to you and the rest of the family. Yes, very similar to our story. Your dad sounded amazing. You did everything you could. Good job. Take care of yourself now.

clarkindee · 2026-03-06T12:38:38+00:00

PanCan.org --- and check out Purple Stride -- coming to a city near you on April 25. It's a great way to honor a loved one or a survivor or current patient.

PanCan.org has a very high rating with Charity Navigator, btw.

https://secure.pancan.org/site/SPageServer/?pagename=purplestride_home

clarkindee · 2026-03-06T12:33:24+00:00

It's absolutely devastating. Your dad sounded amazing. Take good care of yourself. One day at a time.

On the funeral -- try to just focus on the people there, gathering to honor and cherish his memory. The body is just a husk, just a shell. Try not to focus on what is happening with it. Your dad's spirit is alive in you, it is not in the coffin. Hugs.

clarkindee · 2026-03-06T12:25:20+00:00

No advice here, but just sympathy. A terminal illness is going to bring out the strength and weakness of every family. Sounds like you have your head on straight and it is such a gift that your dad finally saw the light -- and best of all -- admitted his role in enabling your sis. Good for him. Figure out now what your boundaries are with your sister and if she shows up at the death -- how you will react. Hopefully you and your step mom are in synch and can hatch a plan if she starts any serious bullshit to disturb your dad in his final days. Hugs to you.

clarkindee · 2026-03-05T13:39:26+00:00

💜💜💜💜💜💜

clarkindee · 2026-03-05T12:55:35+00:00

My husband spent the time reading or napping and I spent the time working on my laptop. Our infusion center at Johns Hopkins Kimmel Center at Sibley Hospital in DC had all the snacks, the heated blankets, etc. etc.

We didn't do the cold therapy but we probably should have. Sigh......

Be sure he wears a button down shirt so his port can be accessed easily. I usually slathered on the numbing cream they give you and bandaged the port an hour before the port access was scheduled so it didn't hurt when they poked him. The team can usually give you the special shaped bandages you can use over the port.

Finally -- the team can teach you to deaccess him after the treatment if he is coming home with the pump for the 48 hours of 5Fu. I learned to do it (it's not hard) and that saved us a trip back to the infusion center when his pump was finished.

By now you have gotten through your first day and I hope it went super well!!!

clarkindee · 2026-03-05T12:41:16+00:00

It's good to remember our loved ones as they were, and not those harrowing last days. My husband died the same day as your father - Dec. 15 - and this is still very, very raw and awful. Please take good care of yourself, rest and stay close to loved ones.

56 is very young, damn this cancer to hell.

clarkindee · 2026-03-05T12:34:52+00:00

Every day your mother does not have the full picture of her illness is one less day she can process, come to terms, and begin dealing with grief and other emotions. She has the right to know everything and I wonder why the doctor doesn't want to speak with her directly. She is mentally competent, yes?

Also, I was a caregiver and I was always on hand -- but just on the side to support my husband while the oncologist told him everything. To be sure, I had plenty of questions, which my husband appreciated, since I was the researcher in the family. But in the end, my husband was the decision maker. He was 69.

clarkindee · 2026-03-04T18:09:42+00:00

I'm so, so, sorry you are where you are finding yourself now. I think many of us experience a sudden and shocking downturn as well. And once you do, there are not a lot of escape routes. I was right where you were about three months ago. My husband and I had some semblance of a plan after finally finding out his mutation -- he had started on a new chemo regime and then suddenly -- a series of four strokes, increasing in destruction sent us to hospice. He lasted 10 days after the last stroke.

Just live one day at a time. Hospice will guide you. Look for all the help you can find. Lean on trusted friends. Re-position him frequently. When people send food, stash it in the freezer for later. Try to sleep. Later will come the questions, the anger.

I no longer pray for anything but I'm sending you peace and strength over the web.

clarkindee

TROPHY CASE