Low platelet count and delay of chemo

Posted by katieliz @katieliz, Oct 2 12:10pm

Have had 8 rounds of Folfirinox, strong chemo, have had 3 after the Whipple procedure done June 10 2025; , supposed to have 4 more - for a total of 12 - but have had to skip for 5 weeks now waiting for my platelet number to rise (currently at 89). Note from doc this week - they will do labs again next week and want me to come in for an appointment to discuss wrapping things up and cancelling the last 4 rounds. This WOULD be nice, but I want the best chances going forward for the cancer to not come back. Anyone have experience with this? I supposedly don’t have any cancer at this moment - was stage 1, head of pancreas, surgeon reported clear margins and nothing found in lymph nodes or anywhere…but I am still nervous since this is a ‘bad cancer’ (none are very good).

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I will ask about this - thank you.

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Profile picture for katieliz @katieliz

@gamaryanne . Yes, why is pancreatic cancer so resistant over time! I did restart today, #9, lesser dose of 2 of the drugs.
As for chocolate - which I have always loved - cannot tolerate it any more. Same with coffee. I googled it, and it seems it's food with tannins that don't appeal to AT ALL, so off those for a while. The trial and error with food and drinks goes on.

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@katieliz
Yes and since tannins bother you I’m sure a glass of wine is off the menu too!

Keep trying things. I’m have found things with BRIGHT taste works for me. Like sipping on real orange juice, some yogurts, popsicles, fruit but NOTHING dry . Used to love Fritos. No
more. Do like the core power protein drink by Fairlife and I also make my own with ascent powder

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Profile picture for gamaryanne @gamaryanne

For a time I also struggled with low platelets. Your doctor can order platelets for you!
Also, believe it or not, I began having a bit of very dark chocolate (80% or so) every day. I had heard this would bring my platelets up and indeed it did. I now always have dark chocolate in the refrigerator (very dark-not Hershey candy bars) and snip off a piece every night. No platelet problems since 2023! And yes, I am still doing chemo every 2 weeks.

PS-pls don’t let them stop chemo unless your CTDNA is reading 0. This cancer is notorious for rearing its head again. 💜

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@gamaryanne "This cancer is notorious for rearing its head again. 💜" Now, there's the understatement of the year.

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Profile picture for gamaryanne @gamaryanne

@katieliz
Yes and since tannins bother you I’m sure a glass of wine is off the menu too!

Keep trying things. I’m have found things with BRIGHT taste works for me. Like sipping on real orange juice, some yogurts, popsicles, fruit but NOTHING dry . Used to love Fritos. No
more. Do like the core power protein drink by Fairlife and I also make my own with ascent powder

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@gamaryanne Thank you, I am about the same - lemon helps a lot of things I try to eat. Sweets have turned to WAY too sweet, weird since I’ve had a sweet tooth all my life. Same with coffee, 40 year + habit, but no more! Have problems with some hot teas also. Yes, can eat yogurt, popsicles and most fruit, though even sometimes these are too sweet! And cold drinks, I will put my lemonade in the freezer to make a slushy. Used to not be able to have anything too cold, when I had the first 8 chemo cycles, but now this has changed, go figure!

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Profile picture for 56pan @56pan

@gamaryanne "This cancer is notorious for rearing its head again. 💜" Now, there's the understatement of the year.

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@56pan Why is this cancer so resilient- as compared to other cancers? I had NO risk factors, came out of nowhere. I am adjusting…

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Profile picture for katieliz @katieliz

@56pan Why is this cancer so resilient- as compared to other cancers? I had NO risk factors, came out of nowhere. I am adjusting…

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@katieliz I wish I had answers for you ma'am. I did have a risk factor: BRCA 2 mutation and my cancer is acinar cell pancreatic cancer. Had a PET scan today and will have an MRI next wk., then appt. with oncologist as he'll have the images. Never any surgery, but after the BRCA 2 mutation reversed, (it actually happens rarely) the Gem/Abraxane shrunk the 2 remaining tumors (pancreas and liver) down to where I had 15 session of rad. therapy in Aug. I'm hoping/praying for good news from my onc. next wk. but have tried to prepare myself for the worst. It is an evil, devious and hateful disease in my opinion. My best advice is to try to keep yourself physically strong.

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Profile picture for 56pan @56pan

@katieliz I wish I had answers for you ma'am. I did have a risk factor: BRCA 2 mutation and my cancer is acinar cell pancreatic cancer. Had a PET scan today and will have an MRI next wk., then appt. with oncologist as he'll have the images. Never any surgery, but after the BRCA 2 mutation reversed, (it actually happens rarely) the Gem/Abraxane shrunk the 2 remaining tumors (pancreas and liver) down to where I had 15 session of rad. therapy in Aug. I'm hoping/praying for good news from my onc. next wk. but have tried to prepare myself for the worst. It is an evil, devious and hateful disease in my opinion. My best advice is to try to keep yourself physically strong.

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@56pan Will be hopeful you get good news from your MRI, keep us posted🙏🤞🙏🤞.

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Profile picture for gracect @gracect

@katieliz Glad you restarted. My husband deals with low platelets so they went from 3 weeks on, one off to every two weeks. On the Thursday before treatment his platelets are checked and if they are under 125 he gets a shot if Romaplastin to raise them in time for chemo on Monday. He’s on gemabraxane but I’m sure they could go the platelet shot with other chemos.

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@gracect Grape molasses and grape seeds worked for me.

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Profile picture for hakanb @hakanb

@gracect Grape molasses and grape seeds worked for me.

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@hakanb To raise your platelet count?

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Profile picture for katieliz @katieliz

@hakanb To raise your platelet count?

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@katieliz Yes, I drink a spoonful of grape molasses in the morning. Before going to bed at night, I crush some grape seeds and eat them. It worked for me.

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