Platelets Too Low for Chemo Infusion

Posted by korinja @korinja, 2 days ago

I have stage 4 peritoneal cancer that has metastasized to multiple other organs. I’ve completed 3 rounds of carbo/taxel chemo with a 4th round scheduled prior to cytoreductive surgery. My platelet count keeps dropping and is now too low for me to have my 4th infusion. Has anyone had to have a platelet or whole blood transfusion before a round of chemo? My CA-125 is dropping but so are all of my healthy cell counts and I’m scared.

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I’ve had blood transfusions, Fe infusions and Mg infusions with chemotherapy. The blood transfusions always because the haemoglobin was too low. I was once sent away because my neutrophils were too low.
The oncologist will tell you if it’s safe to proceed or if you can have a transfusion. It just adds time because pathology have to find a blood match as well as infuse you.
Hang in there!

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YES i did multiple times...i ended up having to get 7 units of blood last year, and multiple other infusions, ie magnesium, potassium, etc..not to mention more rounds of nuelasta that i care to count due to low neutrophils, low wbc low whatever... actually got told by one infusion nurse during one of the blood transfusions that she didn't know how in the world i'd walkied in there from the parking garage with my levels so low, only time they'd seen that the people were brought in wheelchairs.....pretty par for the course...the blood will make you feel a little better for a few days...but generally after a transfusion of blood i had to wait at least 4-5 days before next chemo... hang in there...its really pretty par for the course...at least you made it to chemo #4 before that happened...i went i can't remember either 6 or 7 weeks between my first two chemo's because of how bad my levels dropped...there IS light at the end of the tunnel...i go back tomorrow for a followup but still expecting a NED continuing...

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Thank you both sooo much for your kind words of advice and encouragement. I have felt so alone on this journey and often times am left to find my own answers to questions because I feel like my oncology team gets annoyed with me when I ask them questions. Or I don’t know what questions I am supposed to ask because I’m given just enough incomplete information that I try to do my own research and then end up spinning out. (In this instance it was like, “yes your numbers are really low and yes you should be worried about it. Enjoy your day.”) I had to research myself to find out that transfusions might be an option for me and that this doesn’t mean that the treatment isn’t working or I can’t do the rest of my chemo and/or surgery. I’m crying as I type this (tears of relief this time!) because for the first time since this nightmare began, I feel like have people who understand what I’m going through. From the bottom of my heart, thank you. < 3

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@korinja

Thank you both sooo much for your kind words of advice and encouragement. I have felt so alone on this journey and often times am left to find my own answers to questions because I feel like my oncology team gets annoyed with me when I ask them questions. Or I don’t know what questions I am supposed to ask because I’m given just enough incomplete information that I try to do my own research and then end up spinning out. (In this instance it was like, “yes your numbers are really low and yes you should be worried about it. Enjoy your day.”) I had to research myself to find out that transfusions might be an option for me and that this doesn’t mean that the treatment isn’t working or I can’t do the rest of my chemo and/or surgery. I’m crying as I type this (tears of relief this time!) because for the first time since this nightmare began, I feel like have people who understand what I’m going through. From the bottom of my heart, thank you. < 3

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There’s a very steep learning curve at the beginning of this journey! You will get used to it eventually. You also will build a rapport with your care team so that you do feel more comfortable asking questions. I’ve known my oncologist for 15 years, and have seen him very frequently throughout that time. I’ve even asked him to come to my funeral! He was not flippant, but genuinely said he would really try. I was very serious. He has become a good friend.

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@jenelleseaman

I’ve had blood transfusions, Fe infusions and Mg infusions with chemotherapy. The blood transfusions always because the haemoglobin was too low. I was once sent away because my neutrophils were too low.
The oncologist will tell you if it’s safe to proceed or if you can have a transfusion. It just adds time because pathology have to find a blood match as well as infuse you.
Hang in there!

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Thank you! I hope that you are doing and feeling well. Do you mind if I ask where you are in your treatment?

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@mommacandy

YES i did multiple times...i ended up having to get 7 units of blood last year, and multiple other infusions, ie magnesium, potassium, etc..not to mention more rounds of nuelasta that i care to count due to low neutrophils, low wbc low whatever... actually got told by one infusion nurse during one of the blood transfusions that she didn't know how in the world i'd walkied in there from the parking garage with my levels so low, only time they'd seen that the people were brought in wheelchairs.....pretty par for the course...the blood will make you feel a little better for a few days...but generally after a transfusion of blood i had to wait at least 4-5 days before next chemo... hang in there...its really pretty par for the course...at least you made it to chemo #4 before that happened...i went i can't remember either 6 or 7 weeks between my first two chemo's because of how bad my levels dropped...there IS light at the end of the tunnel...i go back tomorrow for a followup but still expecting a NED continuing...

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Thank you so much for your response. I’m so glad to hear that the transfusions helped you and am so much less stressed and worried knowing that it’s not uncommon to need multiple transfusions (and that there are multiple different kinds possibly.) I would love to hear how your follow up went if you’re comfortable sharing! (And if I may ask, what does NED stand for?)

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My journey started in 2010 with Stage 3C ovarian cancer. I had a radical hysterectomy etc. The cancer became metastatic in 2014. I’ve had chemotherapy both those years as well as 2014, 2016, 2017, 2021, 2022, 2023 and 2024/5. The cancer became resistant to taxol in 2021, to the point that it increased in size while I was on chemotherapy. The doctor suggested surgery, however the doctor couldn’t remove a cancer growing in a lymph node on my pancreas. It was growing through the wall of my duodenum as well. After much discussion, and a constriction in the small intestine, I had a Whipples procedure which basically rearranges your digestive system and removes most of the pancreas.
I have been on Caelyx/carboplatin since 2022. Every time 6 cycles have dealt with the cancer. However, when the cancer returned in August 2024, after 6 cycles it still persisted. I have had 9 cycles this time, the last one was April 2025. I have a PET CT scan today to see if I am clear, or if I keep going with the chemotherapy. I find out the results next week.
My ca125 levels have not indicated anything for many years. I presume that my body registers cancer cells as “normal” because it has returned so often. I have had 51 cycles of chemotherapy in total. I tell people I’m doing better than the Australian cricket team, I’ve got a half century and I’m not out! (I’m from Sydney, Australia.) I’ve had about 35 CT scans and 13 PET scans so far. It’s the only way to tell if I still have cancer. Despite all this, I look healthy. My doctors are always amazed, my oncologist calls me his Champion!

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NED stands for “No Evidence of Disease.” This means your scans don’t show anything abnormal. It does NOT mean cure. You still can have active cancer that is too small to see. But it’s the next best we can hope for. The best thing to hope for is years and years of NED. I’m currently one month into my second NED. I’m also going through chemo again, for the third time.
For anemia (low red cells), they give blood transfusions. For low white cells, they give Neulasta. But for low platelets, they don’t give platelets until it low enough to be life-threatening, which is 5-15 (thousand).
I’m very concerned that your oncologist won’t spend time on your questions. Please consider getting a second opinion, and a third, and a fourth if only to see if you can find a better communicator. If you know other cancer victims, ask whom they see and how they like them. Join a local support group to ask about their doctors. The chemistry between you and your doctor is a HUGE factor in a cancer patient’s stress.
Another thing that might help is to only bring 3 questions per visit. If you bring your long list of questions and expect to answer them all in one visit, unfortunately, most doctors don’t have the time. Bring your entire list of questions to every visit so you can write down the answers you get, and gradually whittle it down. Good luck!

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@jenelleseaman

My journey started in 2010 with Stage 3C ovarian cancer. I had a radical hysterectomy etc. The cancer became metastatic in 2014. I’ve had chemotherapy both those years as well as 2014, 2016, 2017, 2021, 2022, 2023 and 2024/5. The cancer became resistant to taxol in 2021, to the point that it increased in size while I was on chemotherapy. The doctor suggested surgery, however the doctor couldn’t remove a cancer growing in a lymph node on my pancreas. It was growing through the wall of my duodenum as well. After much discussion, and a constriction in the small intestine, I had a Whipples procedure which basically rearranges your digestive system and removes most of the pancreas.
I have been on Caelyx/carboplatin since 2022. Every time 6 cycles have dealt with the cancer. However, when the cancer returned in August 2024, after 6 cycles it still persisted. I have had 9 cycles this time, the last one was April 2025. I have a PET CT scan today to see if I am clear, or if I keep going with the chemotherapy. I find out the results next week.
My ca125 levels have not indicated anything for many years. I presume that my body registers cancer cells as “normal” because it has returned so often. I have had 51 cycles of chemotherapy in total. I tell people I’m doing better than the Australian cricket team, I’ve got a half century and I’m not out! (I’m from Sydney, Australia.) I’ve had about 35 CT scans and 13 PET scans so far. It’s the only way to tell if I still have cancer. Despite all this, I look healthy. My doctors are always amazed, my oncologist calls me his Champion!

Jump to this post

Thank you so much for sharing. My goodness, what a journey. What you have overcome and your positivity is incredible and inspiring. You are a strong and beautiful warrior, inside and out! I am sending all of the positive vibes to you from Phoenix AZ. I pray for good results to come back next week! < 3

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@lathomasmd

NED stands for “No Evidence of Disease.” This means your scans don’t show anything abnormal. It does NOT mean cure. You still can have active cancer that is too small to see. But it’s the next best we can hope for. The best thing to hope for is years and years of NED. I’m currently one month into my second NED. I’m also going through chemo again, for the third time.
For anemia (low red cells), they give blood transfusions. For low white cells, they give Neulasta. But for low platelets, they don’t give platelets until it low enough to be life-threatening, which is 5-15 (thousand).
I’m very concerned that your oncologist won’t spend time on your questions. Please consider getting a second opinion, and a third, and a fourth if only to see if you can find a better communicator. If you know other cancer victims, ask whom they see and how they like them. Join a local support group to ask about their doctors. The chemistry between you and your doctor is a HUGE factor in a cancer patient’s stress.
Another thing that might help is to only bring 3 questions per visit. If you bring your long list of questions and expect to answer them all in one visit, unfortunately, most doctors don’t have the time. Bring your entire list of questions to every visit so you can write down the answers you get, and gradually whittle it down. Good luck!

Jump to this post

Thank you, this is such incredibly helpful information! And congratulations on your second NED! I hope your chemo cycle goes as smoothly as possible! < 3

Less than 3 months ago, I went to the ER (not at Mayo) for what I thought was antibiotic-resistant pneumonia. I was diagnosed with a pleural effusion (and told that it was a complication from my pneumonia.) They drained 2 liters of fluid from my lung which built back up almost immediately. I was then diagnosed with stage 4 cancer of an “undetermined gynecological origin.” ( I also have Lynch Syndrome, and had a preventative full hysterectomy and oophrectomy in 2021, so this was a confusing and understandably horrific diagnosis for me.) I was not at a particularly good hospital, and a friend got me a referral into Mayo and I was able to be seen there within a couple of weeks.

In the initial meeting with my oncologist, they diagnosed me with peritoneal metastatic carcinomatosis and told me that I had less than 3 months to live if I did not start treatment immediately due to advanced metastasis and a CA125 in the 300s. I’m 42 years old and have never had any health problems. My oncologist moved mountains to get me into chemo three days after our initial consultation. I had a second opinion scheduled at MD Anderson in Houston but was far too sick to be able to travel at that point. Mayo is by far the best cancer hospital locally and I was just grateful to be able to be treated there. My oncologist called me personally every time there was an update on any of the testing that was redone from the crappy hospital or to discuss treatment in the early days. (Although I have Lynch Syndrome, this does not appear to be a Lynch tumor, so evidently it leads to a more complicated course of treatment.)

I started feeling much better once I had a couple of chemo treatments and did travel to Houston for a second opinion early last month. MD Anderson said they would do the same course of treatment I was getting at Mayo, and relocating to Houston for treatment wasn’t ideal for my family situation.

After my second opinion in early April, my oncologist and I have not actually spoken. We communicate through the portal and one of their nurses always responds to my messages. I have needed to contact them about a lot of extra things in the last couple of weeks (ADA and LTD paperwork with short deadlines, a new PCP wanting labs, a broken tooth and whether I could go to the dentist to get it fixed, etc etc.) I check with them about anything that is medically related because this is new for me and I don’t want to do something or get advice from another provider that may negatively impact my cancer treatment.

As someone mentioned there is a steep learning curve at the beginning of this process and this has all happened so quickly for me. Getting information from all of you has calmed my nerves a great deal (!!!) and I think the number of questions I have will lessen over time. At this point, I have upcoming appointments with my hematologist and palliative care doctors (both of whom I really like) and will save my questions for them and only when I see them in person. I don’t want to be considered a problematic patient. I also definitely need to have resources outside of my oncologist, which I will continue to work on. Thank you all so very much, from the bottom of my heart. < 3

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