low platelets?

Discussion Board Forums General Discussion low platelets?

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  • #36225
    marions
    Moderator

    Dear Thomas

    #36224
    devoncat
    Spectator

    Hi Thomas,
    Good luck on your journey.

    Kris

    #36223
    katieloumatt
    Member

    Hi ThomasN,

    Firstly welcome to the board and congratulations on your post Whipple success. You must be very encouraged.

    Thank You for your advice regarding low platelets and a little physiology.

    However, you commented about the lack of answers/solutions on forum/ support boards. I beg to differ, the people who post on here are knowledgeable, experienced, kind and sympathetic and unlike some other forums someone will always reply if they are able….

    Of course reading medical journals online can give you the up to date research and trials but what they can’t give is support and advice from those who ‘have been there’ and experienced this very rare disease.

    Wishing you well with your treatment and hope you pop back to see what a friendly group of people we are.

    Katie

    #36222
    thomasn
    Member

    This is my first post, and as a 29 year old survivor of stage 3 Distal Cholangiocarcinoma I get annoyed reading these forums people don’t provde solutions.

    Vitamin K, Bile, and FAT these three are essential for your platelet count/ coagulation (the bile and fat are needed for K absorbtion). Have your dr check your prothrombin time. When I had a blocked bile duct I was severely K difficient, even though I ate tons of vegetable (high in vitamin K) I got a vitamin K shot which lasts a while as it stores in the liver. But if your Dr is ambivulent (many are) supplement with first a bile pill, then a healthy fatty meal (almond butter rules, but peanut’s good too and cheaper or fatty fish), then take the vitamin K pill. Everytime mine drops while I’m on chemo I take one (100-150% DV) a day in addition to lots of fresh veggies with some vingar and oil, just not the day before or after an infusion (conflicting data on reducing chemotherapy potentcy).

    Ofcoarse the morbid diagnosis, which I hope it’s not, is Metastasis to the Spleen, but that would have been indicative by the scan. In any event the spleen is NOT the main source of platelet production, it only stores it for emergency (which is clearly your case). The chemo makes the spleen work overtime due to the massive purging of blood cells. Suggest vitamin K to your Dr, and if not try it anyway, and see if after a few weeks your numbers improve (empirical evidence). Just don’t overdo it, vitamin K can be toxic, but I find that difficult for people with bile flow problems, or no gall bladder.

    What everyone on this board needs to remember is most people die from the extraneous complications of CC (cholangitis, other infections, malnutrition, surgical complcations, liver cirrhosis). Treat those first, that’s what my doctors did (mainly due to my denial of cancer), I was near death in last June with severe cholangitis and then after I finished 3rd overall in a 112 mile bike race last September with a stent in my bile duct waiting for my Whipple in November, which was a !@#$ing success. Then I was back to racing 2 months later.

    If you have more questions I may or may not respond as I don’t check here as often. I read medical journals online instead, atleast they provide answers.
    _____________________
    “If life doesn’t give you what you want, grab it by the throat until it does…”

    #36221
    elmoks
    Member

    well today my mom’s platelets were at 68 and they will not treat her unless they are at least 100. the last time she did chemo they were at 109 and she dropped clear down to 22, within 1 week. so no chemo again today. it’s been 6 weeks since her last chemo. they also checked the ca919 today and we should get the results of it on thursday, not that i’m a big beleiver in that test. but it seems like right now it’s the only thing we have to go by. Suzanne I wish you alllll the luck in the world! i will be praying that your platelets also go up so that you can recieve treatment. however, like i tell my mom, at least you get to feel good for another week! :-)

    #36220
    suzannegm
    Member

    My spleen is also enlarged, though only slightly, and my platelets are up and down. My doctors have told me that my spleen is “harboring” the platelets and releasing them sporadically, so that’s part of the reason my spleen is enlarged and my platelets are kind of all over the place. Last week my platelets were 56 and this week they’re 46. Hopefully they’ll be high enough next week for chemo (my last treatment was 2 weeks ago), which is annoying to me because you would think the further away from chemo my platelets would go up but instead they bounce around. My docs have given me chemo with my platelets at 59, but they prefer 70. I don’t know of anything to try at home that will help boost my counts, but maybe someone else knows of something.

    #36219
    elmoks
    Member

    Kris thanks for sharing that. Your only 35? That’s my age! This cancer is CRAZY! My mom hasn’t had chemo for over a month now. This week they dropped even farther…. I just wonder if they will ever go back up?

    #36218
    devoncat
    Spectator

    My platelets drop with gemzar/cispl regime. They can continue to fall even after the treatment has stopped for a bit. Last week, my numbers were low so they tested again 3 days later for a total of 10 days since the last chemo treatment and the number of platelets continued to fall. The dr. said that just happens sometimes. I had to avoid all physical activity since a bruise could be dangerous and was instructed to go to the hospital if I got a bloody nose or cut myself. Then I was told to just wait it out that there was nothing they could do. Numbers have improved now. My doctor said it was normal.

    Kris

    #3261
    elmoks
    Member

    Last week my mom had a CT scan which showed that her spleen was VERY enlarged. When the dr. examined her he could barely touch that area of her abdomen without her being in horrible pain. Yesterday she was to do her 10th round of chemo (cisplatin and gemzar) but her platelets dropped?? She hasn’t had chemo in a month, why would they be dropping now? Does anyone know if this has anything to do with her spleen? After her last chemo treatment her platelets dropped to 21K, but slowly they have been climbing. Last week they were even at 94K, and the Dr. thought that this week they would be high enough for her to do chemo. As of yesterday they had dropped to 64K. The Dr doesnt’ seem to concerned, but I am. Right now we all feel like chemo is the only thing keeping her alive… like it’s our only hope. Of course yesterday my mom was devasted, even though the Dr. didn’t seem to concerned. He did mention that it might be time that we change our care plan. What they heck does that mean? Does it mean that her body is not going to allow her to do anymore chemo?

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