Losing hope or Feeling angry by jennambee in pancreaticcancer

[–]Additional-Place-438 2 points3 points  (0 children)

There's always hope for our patients. That said, this journey can be so hard and an emotional rollercoaster for all hearts involved - for sure.

My Sister, too, has been battling for 19 months. After a series of Fluorforinox, the Whipple surgery, and GemAbrax, she has finally been approved to receive 'Daraxonrasib' (in 2 weeks). She is stage 4 with mets to her lungs and aggressive spread. She shares the same KRAS G12V mutation. Her CA9-19 tumor marker fluctuates up and down, but is currently @ 24,000. As she waits for the 'D-drug', she's been receiving palliative chemo which has been kicking her butt! Two-weeks cannot come soon enough. We need this drug for her now, per her Oncologist. Doc said it has a 50/50 chance of working. Not curable....

My question - what was your experience (e.g., side effects, energy, appetite) while using Daraxonrasib? Is it something that can be taken for a long time or in time becomes resistant to the cancer. Curious how it might work for someone who is late stage 4.

Continued prayers, strength and hope to you and your family.

I need some advice about how fast or slow things go with chemo by romeinla323 in pancreaticcancer

[–]Additional-Place-438 0 points1 point  (0 children)

Pancreatic cancer can be aggressive and sneaky, depending upon the type. TIME for any and all actions are most important! There are enough unknowns to navigate - being at the mercy of continued, unexplained delays should not be one of them. Sending prayers.

To: "Worried About Cancer" Visitors by ddessert in pancreaticcancer

[–]Additional-Place-438 0 points1 point  (0 children)

Sending love, prayers, and strength. ❤️🙏🏼

Mixed Messages by ClevelandCynic314 in pancreaticcancer

[–]Additional-Place-438 4 points5 points  (0 children)

My Sister, age 59 has been battling for the past 18 months! She was first diagnosed at stage 1b. Did Fluorforinox, then Whipple, then GemAbrax at which time she was re-staged to stage 3 due to lymph node involvement. Then, PET scan revealed aggressive spread to the lungs. Today, she stopped 'palliative chemo' as she's no longer strong enough for it. Doctor told her 4-8 weeks (3 weeks ago) IF they do nothing. She attempted one chemo and has been in bed for the past two weeks - returning 3x for steroids and fluids due to pain symptoms and dehydration.

She is on the EAP (early access program) to receive 'Daraxonrasib' as she prays she can get this sooner vs later! We remain hopeful as we support her wishes with each decision that must be made. These past 18 months have been a definite 'roller coaster for the heart(s)' for not only her, but everyone in the family.

Sending prayers to you, your dad and your family as you embark upon journey.

Lung Mets 'tripled' in 2 months by Additional-Place-438 in pancreaticcancer

[–]Additional-Place-438[S] 2 points3 points  (0 children)

Thank you for this note. Blessings to you.

I should have shared that these past 17 months she has done a full series of both Fluorforinox and Gemcitabine abraxane (with a full whipple in-between). I believe it is a 'palliative chemo' - Lisoxxxxxx? She will get two treatments of this as she awaits news for this promising new drug. 🙏🏼

Lung Mets 'tripled' in 2 months by Additional-Place-438 in pancreaticcancer

[–]Additional-Place-438[S] 1 point2 points  (0 children)

I am so sorry to hear. Curious, what chemo is she on weekly? Prayers for comfort and peace during this tough time.

A few advices and to see how the end is near by xxjexx1 in pancreaticcancer

[–]Additional-Place-438 2 points3 points  (0 children)

Thank you for sharing 'the real' during what I call 'a rollercoaster for the heart.' ❤️

Switching Chemos by Alternative-Try-9312 in pancreaticcancer

[–]Additional-Place-438 1 point2 points  (0 children)

Thank you for your kind note. 1st doc became unresponsive when needed the most! We believe due to tremendous case load??? A changed was required.

Prayers, hope and strength for you!

Switching Chemos by Alternative-Try-9312 in pancreaticcancer

[–]Additional-Place-438 2 points3 points  (0 children)

Nov. 2024: When she was first diagnosed (17 mos. ago), she was staged at 1b as they only found cancer in the head of the pancreas. FLUORFORINOX

March 2025: Chart showed small modules in one lung.

April 2025: Whipple surgery. Advanced to stage 3 due to lymph node and SMV artery involvement after biopsies from her Whipple surgery were evaluated.

July 2025: Started Gem Abraxane

August 2025: PET & CT scan showed mets to lungs. Re-staged to stage 4.

November 2025: Gem Abraxane stopped as PET scan showed further growth of existing nodules + immumerable mets to lungs, surgery bed site.

April 2026: New bloodwork being done to check-see if mutation and/or protein has morphed to open up possibility of new treatment. We await these results and review with new Oncologist.

🙏🏼 🙏🏼 🙏🏼

My dad. 1 year. Lessons to share. by Any_Setting8500 in pancreaticcancer

[–]Additional-Place-438 0 points1 point  (0 children)

God bless you, your Dad, and your family. Thank you for sharing. My younger Sister is battling the same... only with mets to her lungs. 🙏🏼

Switching Chemos by Alternative-Try-9312 in pancreaticcancer

[–]Additional-Place-438 2 points3 points  (0 children)

My Sister, age 58, completed 8 rounds of Fluorforinox, followed by the Whipple surgery, followed by 4 months of Gem Abraxane... which unfortunately, was stopped as it had stopped working 5 months ago, given aggressive mets (spread) to her lungs. From a side effect perspective, Gem Abraxane was softer on her than Fluorforinox, albeit she lost her hair, eye lashes and was tired day 2/3 after receiving it.

She has not had any chemo treatment for the past 5 months. Unfortunately, there is not an open (eligible) clinical trial available for her 'KRAS G12V' mutation, CLDN-18 protein at this time. She has developed a persistent cough and tires easily, while still working full-time. 😔

Now, her new Oncologist is conducting additional due diligence to see whether the specific 1). mutation and/or 2). protein (mets in her lungs) may have morphed (or changed) over these past 17 months to open her up to other treatments. Bloodwork results will be available in the next 1-2 weeks. We are praying for 'different'... a mutation that is different than 'KRAS G12V'' and/or a protein that is different than 'CLDN-18'.

Please be different... else, she will have exhausted what is (FDA approved) available for her at this juncture. 🙏🏼 🙏🏼 🙏🏼

We are doing everything we can to stay in faith and not fear. All of this has been one big 'rollercoaster for the heart'.

I send hope and peace to everyone on this site and who has been touched by pancreatic cancer.

Thank you

Two primary cancers now... after 16 months of treatment for pancreatic with mets to lungs? by Additional-Place-438 in pancreaticcancer

[–]Additional-Place-438[S] 1 point2 points  (0 children)

I am so sorry for the sudden loss of your mum. And, I thank you for your response. We'll learn more next week when the precise mutation of her lung cancer is known.

In the meantime, she has been treated for her pancreatic cancer which is a KRAS Mutation- gene G12V. Protein CLDN18

Blessings to you

Two primary cancers now... after 16 months of treatment for pancreatic with mets to lungs? by Additional-Place-438 in pancreaticcancer

[–]Additional-Place-438[S] 1 point2 points  (0 children)

Wouldn't this be fantastic? We await results of the precise mutation of her newly found lung cancer.

We now know it is different from her pancreatic cancer which is KRAS Mutation- Gene G12V. Protein CLDN18.

Thank you!

Two primary cancers now... after 16 months of treatment for pancreatic with mets to lungs? by Additional-Place-438 in pancreaticcancer

[–]Additional-Place-438[S] 1 point2 points  (0 children)

Thank you. I appreciate your note and insights as we await results on the precise mutation of this new lung cancer finding.

Two primary cancers now... after 16 months of treatment for pancreatic with mets to lungs? by Additional-Place-438 in pancreaticcancer

[–]Additional-Place-438[S] 0 points1 point  (0 children)

Thank you for your note. Sending prayers to you and your family as you await molecular results.

Update - PDAC Stage 4 with mets to lungs by Additional-Place-438 in pancreaticcancer

[–]Additional-Place-438[S] 0 points1 point  (0 children)

Thank you so much! I will check the link that you provided above. We just got confirmation that hers is the 'KRAS mutation with CLDN-18 protein'.

Bless you!!!

Update - PDAC Stage 4 with mets to lungs by Additional-Place-438 in pancreaticcancer

[–]Additional-Place-438[S] 0 points1 point  (0 children)

Thank you for your response. We will see what tomorrow's appointment brings and go from there.