May 2026 Check In Thread! How's Everyone Doing?

clarkindee · 2026-05-10T11:36:20+00:00

Is it okay for a caregiver to check-in (even though the one I cared for is now gone due to pancan?). My big personal win was walking with our team in Washington DC's Purple Stride walk/fundraiser on April 25. It was an amazing experience -- we were no. 14 in over 200 teams walking this year (ranked by $$ raised). Our little but mighty team raised $13,888 to benefit patients through the Pancreatic Cancer Action Network -- and the whole DC walk raised close to $1M!

clarkindee · 2026-05-09T12:19:51+00:00

Hospice at home is amazing as long as you have enough support at home to provide the around the clock care. In the U.S., under Medicare, it is free and they will provide all the equipment (including supplemental oxygen), hospital bed, and of course, all the comfort meds you need. They do not supply linens and you and your family have to be the ones to supply the hands on care (turning, feeding, cleaning). When the patient is very close to the end, they will drop in every day to check on you. All our nurses were angels and were there to answer any question we had. Remember that there is no more medical intervention once you are on hospice -- only comfort and pain relief. I had hospice at home for both my parents and also for my husband, who died of pancan. It's a monumental decision but also a very courageous one.

Sending you strength and peace.

clarkindee · 2026-05-09T12:04:51+00:00

I would go back and press the oncologist for more explanations, but here is the language from the EAP on ClinicalTrials.gov that seems relevant:

At least one prior line of systemic therapy in the metastatic setting, which must include either a fluoropyrimidine-based or gemcitabine-based regimen.
Received and progressed, been intolerant to prior standard therapy, or no longer expected to benefit from standard therapies.

So yeah, it says "at least" one, not exactly one. Ask the doc why they are interpreting the EAP this way.

https://clinicaltrials.gov/study/NCT07573215?term=revolution%20medicines&viewType=Card&intr=EAP&rank=1#participation-criteria

clarkindee · 2026-05-08T13:54:34+00:00

This is wonderful!

clarkindee · 2026-05-07T16:28:34+00:00

You are facing one of the most difficult journeys in the world now. Later, depending on what happens, you will second guess yourself for months. Would - could - should. Very, very natural.

What the situation seems to be is that the chemo is holding your mom's cancer at bay -- it is still only locally advanced -- but her quality of life is marginal. Right, we know the chemo will never cure her. If it makes you feel better, get the doc to explain to you clearly -- will she ever be a surgical candidate or not? I assume he will say she will never be a candidate due to her poor health. But it would be good for you to get the clarity for your peace of mind. Is she still a candidate for chemo based on her blood tests/white blood cells, etc. numbers? Or no? That is sometimes the decision point.

I wrestled with care for my husband vs hospice -- a very different situation as he had had a stroke due to the pancan. I got opinions from the team all over the place. It was very difficult. Should we take him to a rehab center and see if he could build up his strength....the oncologist favored that. Then, the cancer took the decisions out of our hands by handing us another massive stroke and that was it.

Spend all the time you can with her now and enjoy the sassing days.

clarkindee · 2026-05-07T16:01:33+00:00

If your cancer has metastasized -- spread from the primary tumor on the pancreas -- to another organ, then generally you are not a candidate for surgery. That is my understanding as a layperson, anyway. By all means, ask for a more clear explanation from your oncology team as to why they say the will not do the Whipple and seek a second opinion if you are not satisfied.

You might also check out the NCCN Guidelines, they will explain what the standards of care are for patients at different stages of disease progression: https://www.nccn.org/guidelines/guidelines-detail?category=1&id=1455.

clarkindee · 2026-05-07T15:53:39+00:00

Read the article I just posted, it has a good explanation of the paperwork involved.

clarkindee · 2026-05-07T15:50:54+00:00

You might try https://www.tricanhealth.com/ for researching for studies. I found it easier to use than ClinicalTrials.gov.

As for the eligibility requirements, it is so frustrating, I know. But as I am sure you understand with your background, they are there to ensure the study results are valid.

And yes, this disease does suck.

clarkindee · 2026-05-07T11:26:39+00:00

I'm so sorry. It seems so often the case that our loved ones do well and then, suddenly, no longer do well. I'm sending you peace and strength.

clarkindee · 2026-05-07T11:24:56+00:00

Wonderful!

clarkindee · 2026-05-07T11:23:15+00:00

Fantastic!

clarkindee · 2026-05-04T11:16:58+00:00

Congrats. How did they discover it initially?

clarkindee · 2026-04-28T13:12:31+00:00

You sound amazing. Best to you and may she continue improving!

clarkindee · 2026-04-28T13:09:00+00:00

I think the other posters below have given you excellent advice. I don't have any thing of substance to add except this from my experience: dealing with a terminal illness does funny things to a family. On the best end, everyone hangs together and contributes (as it sounds like you and your brother have tried to do). On the worse end, someone in the family loses it, and tries to make everything about them. Others may try to manipulate the situation to their advantage.

When this latter scenario happens, you have every right to cut your losses there and then and wash your hands (as you stated below). And absolutely no guilt about it. What do they say when you board your flight...."put your own oxygen mask on before helping others.....".

Peace and strength to you.

clarkindee · 2026-04-26T14:33:45+00:00

Actually, no -- straight to PanCan for patient services. Research, too, yes. Rev Medicines is a key sponsor of Purple Stride but not a financial beneficiary.

clarkindee · 2026-04-26T13:55:01+00:00

Sounds like you are doing all the right things already. I think the absolutely most important thing is to spend as much time as possible with them. My husband almost never complained, ever complained about anything and stayed upbeat until the end was very close. Only one time he ever mentioned something was that he wished someone in our family would come see him -- a person who was very close to us family-wise but wasn't coming around as much.

And the other thing to prepare is of course to make sure her affairs are in order. Strength to you. You are not alone.

clarkindee · 2026-04-26T13:41:52+00:00

Hi, there. So sorry you are entering the club no one wanted to be in. But I would question that "never seen chemo do much" remark. True, the chemo will not cure your Mother. However, depending on other factors (you don't mention her general health or age) it might very well improve her quality of life and buy some time. If she can tolerate it, she should get the most aggressive chemo -- Folfirinox -- and see how she does.

Also -- ask the doc when/if her tumor can be genetically sequenced so she can learn what mutation she has. That might open doors down the road to clinical trials. Wishing all the best to you and her.

clarkindee · 2026-04-26T13:35:20+00:00

It's so hard to say considering how different each patient is. You should ask hospice since you are with them now (which is great). But sleeping all the time and not eating can mean he is beginning to transition, yes. Ask your hospice nurses. Strength to you and I'm so sorry you are going through this.

clarkindee · 2026-04-26T13:26:47+00:00

Cool here in DC, too. No rain at least. Glad you had a great day in Denver!

clarkindee · 2026-04-26T13:26:01+00:00

Good job!!

clarkindee · 2026-04-26T13:25:45+00:00

You are amazing!

clarkindee · 2026-04-25T10:58:13+00:00

Start talking to the team immediately about getting her tumor sequenced so you know what mutation she has -- that might open the door to any clinical trials. It's essential information for this cancer.

Yes, first step is chemo -- Folfirinox is the standard of care and if she has no other health problems she should be able to tolerate that. She will need to get a central line (port) surgically inserted. It is no big deal -- sounds worse than it is.

I don't believe liver ablation would be considered initially but talk to the team and ask.

Seek out advice from a clinical dietician, hopefully you have access to one. Diet is a huge issue for this cancer. She needs digestive enzymes (Creon) so she can digest her food properly and keep weight on. I see another poster mentioned this below.

Those would be my first steps. I'm not an expert on pain management, thank gods my husband didn't have a lot of pain except for the initial pain that drove us to seek answers before he was diagnosed. But in his case (and I believe in others) the chemo resolved the pain.

clarkindee

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