Platelets Too Low for Chemo Infusion

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

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?)

sorry for the delay in answering but i just got home from the latest visit to my oncologist... NED means no evidence of disease and if you have specific things you'd like to know i'll be happy to try to answer them. Below is what i shared in another post

"My doc is very happy with how i'm doing local clinic will draw my blood and unless my CA 125 goes back up into the 30's (its 12) or i start having abdominal pain/losing weight/lose my appetite etc i don't have to go back!!! they'll monitor it through the blood work and any visits will be telehealth if warranted unless something happens....
his words were "whatever you're doing is obviously working, and we know the CA125 is a great indicator for you since it was 1600 when you first came in so that's how we'll monitor it. You look really good, your hair has come back beautifully which is a good sign, you've gained weight which i really like to see, and you look vibrant and healthy and full of energy so keep it up"
and for those who wanted to know what i'm currently doing, i take a combination of multi vitamin, 10,000 ieu's of D3, B17, tumeric/curcumin blend, and essiac... and i eat assorted mushrooms at LEAST once a day (usually sautéed in butter and added to my eggs, some times i fry some for lunch or dinner too) i'm just happy no more 4 hour drives for awhile 🙂

I shockingly found out that I have cancer in my heart. I did one chemo and then they told me my platelets were too low to proceed. but not low enough for an infusion. I go back next week but does anyone know how to bring up platelets. I'm at a loss as my food choices are limited to like mostly keto and with a pinch of mediterranean diet. I'm open to suggestions. thanks for any input

Oh I am so sorry to hear that news. I am sending all the positive and healing energy your way. < 3

I just met with my hematologist yesterday and asked the very same question about platelets. She told me that a good diet, plenty of rest, exercise when I feel up to it, lots of water, and keeping a positive attitude are the best things we can do (is that all? lol.) but it’s really up to our bone marrow to regenerate those platelets. (So there’s not really much we can do specifically.) That wasn’t the answer I was looking for and I’m sure not the answer you want either. :/

I’m praying for good news soon and please keep me updated on your progress. I know I can speak for everyone in this group to say we are rooting for you. < 3

thank you all. this is so shocking to me. I moved to TN in July after fighting vulvar cancer since 2015. I was under the impression that it was under control altho my dr had put in notes that I needed a pet scan. I packed up my things unpacked moved across the nation with no idea I was sick, till a series of events let me to what started out as emergency surgery for blood clots in my lungs but the surgeon had to change course when he saw a mass engulfing my heart. after a 90 minute bypass while he conferred with other cardio surgeons he did an emergency open heart surgery and removed a good majority of the mass but it's in my heart. he told me had he known what was up he never would've performed that surgery. thank you for the ego of a surgeon for prolonging my life. I have cancer in my heart. rare and especially rarer the type of cancer in my heart. who knew? I didn't even know I was sick. so it's a lot to absorb only to be told that my platelets are too low to get treatment but not low enough for an infusion. go figure!

thank you all. this is so shocking to me. I moved to TN in July after fighting vulvar cancer since 2015. I was under the impression that it was under control altho my dr had put in notes that I needed a pet scan. I packed up my things unpacked moved across the nation with no idea I was sick, till a series of events let me to what started out as emergency surgery for blood clots in my lungs but the surgeon had to change course when he saw a mass engulfing my heart. after a 90 minute bypass while he conferred with other cardio surgeons he did an emergency open heart surgery and removed a good majority of the mass but it's in my heart. he told me had he known what was up he never would've performed that surgery. thank you for the ego of a surgeon for prolonging my life. I have cancer in my heart. rare and especially rarer the type of cancer in my heart. who knew? I didn't even know I was sick. so it's a lot to absorb only to be told that my platelets are too low to get treatment but not low enough for an infusion. go figure!

You have been in my thoughts constantly since I saw this. I don’t know much about anything (including how to send a PM — I tried to send you my phone number but they wouldn’t let me post it here.) but I will say that Momma Candy knows best! You can beat this! If you need someone to just listen, I am here. Sending all of my positive vibes to you. < 3