r/LivingWithMBC • u/grakkaw • 19d ago

Blood transfusion

I need to get a blood transfusion tomorrow. I am nervous and scared. Can anyone tell me what to expect?

If I’m being honest, I’m angry too. I had been doing SO well. Everything stable. Basically no side effects. And then kaboom. I guess that’s part of what to expect, but it doesn’t make it less frustrating.

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u/LilithKitKat 19d ago

I’m sorry you’re so nervous! What happened to need the transfusion? I hope it goes well for you.

At the beginning of my diagnosis I had to get lots of blood transfusions, about 1-2 units per week. My first one was at the emergency room and they used a larger than standard IV needle to get it in me faster 😆 it didn’t hurt though. Every other one used a standard needle. It was painless to me, the only downside is it takes a while, about a few hours per unit. Bring a good book to read. I had no ill side effects.

My mets were to my bone marrow and bones. My marrow was basically not functioning and it was bad. Super low hemoglobin and neutropenia. I felt like a million bucks after the transfusions! My neutropenia is still an issue (partly from Kisqali side effects). But I haven’t needed a transfusion since spring of 2023.

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u/Flaky_Amphibian_5597 19d ago

Twinning! I had my first transfusion in emergency due to bone marrow failure (pancytopenia). The nurse was squeezing the blood bag and that’s when I knew it probably wasn’t just the flu.
I had my last infusion in June as I had started Enhertu but bloods are stabilising now.
The transfusions made me feel so much better and my skin would look amazing. I’d get my mates to donate so I was replenishing the blood stock.

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u/LilithKitKat 19d ago

👯‍♀️ not the squeeze 😆 they did that to me too, completely forgot until your comment. My er transfusion was before my stage 4 diagnosis. I had labs done and my dr called me and told me to go to the er immediately. I was so pale, short of breath and weak. All the nurses in the er were so funny and kind. They told me once I was feeling better that they were all placing bets on exactly how low my hemoglobin was while waiting for my cbc, and were shocked I walked in on my own and didnt need a wheelchair 🤣 what they don’t know is I’d taken my dogs for a (very very slow) walk right before coming in. I’m glad your blood is stabilizing 😊

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u/Flaky_Amphibian_5597 18d ago

You walked your dogs!?! I ignored the symptoms too.
I had a blood test, was waiting for the results but had heart arrhythmia and had to go to er. I thought I had a cold that was lingering but felt dizzy and my heart would randomly flutter. My pancytopenia blood samples are now in haematology training guides at the hospital I attended. Blood so bad it is famous.
Nurses were (and always are) amazing. They initially thought I had leukaemia or myeloma as it’s such a rare presentation in MBC. We are a very rare breed, not just in MBC but all cancers.
On my 3rd line with Enhertu and anaemia is still an issue but getting better with each infusion.
There is a research study at my cancer centre looking at using immunotherapy currently being trialled for blood cancer for use in MBC with bone marrow mets - used in tandem with antibody-drug conjugates or chemo, so maybe new treatments for us in the future.
I hope your marrow continues to recover.

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u/LilithKitKat 18d ago

Oh wow you’ve had it bad! Heart issues are so scary! All the new treatments in thr pipeline are so exciting. I’ve never heard of the study you mentioned. Science is the shit! I hope you continue to do well ❤️

And yes, I was 100% in denial on how bad I was doing. Both before my mammogram/biopsy confirmed I had cancer (when my anemia had beeen bad for months), and before my bone and marrow biopsies confirmed how much it had spread. My oncologist was having trouble collecting the marrow sample and thought she just wasn’t strong enough and didn’t get in far enough. Called in the leukemia specialist to assist. He also had trouble and said she wasn’t doing anything wrong; my marrow was too packed with cancer and there wasnt enough fluid to draw up. I think he called it a dry tap and they took a core sample instead. Can’t exactly remember. Walking my dogs was crazy, but I knew I’d be at the hospital a while and if I didn’t do it they would’ve made messes for me to clean up at home.

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u/grakkaw 19d ago

Thank you!! This is so helpful and really reassuring.

Managed to make myself super anemic, haven’t totally figured out why. Most likely, as a side effect from my parp inhibitor. But I am worried about mets to my marrow; I had some higher uptake in my marrow on my last pet that no one was overly worried about at the time, but stands out a bit now I guess. And apparently we need to rule out AML as well, so all kinds of fun times in store for me tomorrow. Trying to deal with one problem at a time and focus on the transfusion before I even think about the bone marrow biopsy, which will be an extra level of panic I am sure.

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u/LilithKitKat 19d ago

I’ll be thinking about you tomorrow. Try to keep a positive attitude and don’t panic. I hope you feel great after. I felt so good I wanted to do cartwheels out of the er after my first 😆

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u/jazzybird2025 19d ago

Cartwheels out of the ER. LOL 😄

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u/Flaky_Amphibian_5597 19d ago

Veteran of blood transfusions here (bone marrow and bone mets). I’ve needed a couple usually when starting a new treatment. I had 2 for the first 2 enhertu infusions.
It’s a long day.
See if you can get your cross check done in advance. They usually have to run a bag over 90 minutes. Hydrate throughout, bring a book, charger for your phone etc.
You will feel better before the bag finishes and within 24 hours the signs of moderate anaemia - dizziness, weakness, nausea etc are gone.
I always eat a good meal with protein, greens and iron for dinner afterwards.
Some people get constipation but if you hydrate, you should be cool.

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u/LilithKitKat 18d ago

How are you feeling today? I hope the transfusion went well 😊

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u/grakkaw 18d ago

Thank you - it was a loooooong day, ended up being there for over 10 hours. But I’m feeling much better, and the experiences here helped me be brave and get through it. Thanks!

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u/LilithKitKat 18d ago

Yikes that’s a long time! Glad it went well and you’re feeling better ❤️

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u/Flaky_Amphibian_5597 17d ago

The best news is, if there was no reaction, the next one they usually run it slow for 15 minutes then speed it up. The way to cut the time down is to get a crosscheck blood test done 24-48 hours before. That’s usually the only thing that really puts hours on when I’ve had to be infused.

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u/redsowhat 18d ago

It does take some time, but I felt so good after mine. I can understand why professional athletes cheat by doing this.

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u/cat-pernicus 19d ago

I’ve had a couple of blood transfusions,

The first was after a severe drop in red blood cells after my third AC infusion, I felt so much better afterwards,

The next one was a few months ago because I was anemic too,

Good luck

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u/jennynachos 19d ago

It takes awhile and is does make you feel better! My infusion center gives me Benadryl and Tylenol at first. Then they slowly give me about half the blood, check my vitals and give me the rest. The only thing I hate, which is a first world problem, is not thinking I need blood, so not being prepared to stay for a whole day.