Experiences with Anemia

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blainejennifer
blainejennifer Member Posts: 1,848
edited June 2016 in Stage IV/Metastatic Breast Cancer ONLY

For the past two months, since starting Halaven, I have been very fatigued, short of breath, incapable of more than about 30 minutes of activity a day. I knew chemo would be tough, but this was so much more than I had experienced on weekly Taxol. Frankly, I was desperate, and was considering stopping treatment. It's the shortness of breath that gets you. Each breath feels like you are about 10% short of a complete breath. Hell, I was considering stopping living.

I had been complaining of these things to my medical team. Each visit, I had said that I had all the above symptoms, and that it was making living kind of hard. People just kind of danced around the topic, and I got the general impression that, well, chemo is hard. This is what it should be.

Last week, a nurse asked me if I wanted a print out of my blood panel values. Normally, I don't get them, because I'm not a clinician, and the numbers don't really talk to me. But, I say yes this time, as she really seems to want me to have them.

My RBCs are in the low 3s. I'm used to a CBC stating when values are low, so I just put the darn thing away and get treatment. It's my spouse who notices that the value range is something like 4 - 6.5. We google like teenagers, and discover that I'm anemic. And have all the symptoms of anemia. Halaven is known for producing anemia.

Sure wish someone had told me this in the past two months, when I was depressed from having no energy, feeling cold all the time, and getting winded walking to the bathroom. In just four days of taking iron supplements, I am much improved, and do not begin the day crying anymore.

And, tomorrow, my medical team and I are going to have a tense talk about what is proper management of a patient's quality of life. It turns out that anemia is chronically under treated in the cancer population, and yet, wildy important to a cancer patient's quality of life, and (in some studies) progression free survival.

I snarkliy told my husband that cancer patients die faster when they have anemia, because they want to.

What have your experiences with anemia been? For the first time in four years, I am pissed at the level of care I have received. Not that I have many choices - we live in a smallish town with one oncology practice. Should I want to change practices, I'd have to drive about two hours each way to a larger city. Then, I would have to get a driving buddy, and live would get more complicated.

I would much rather kick a little fanny around these parts, and be more aware of when I am receiving standard of care. This one snuck up on me, because I was Not Feeling Well. Oh, that's never going to happen again, is it?

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  • Moderators
    Moderators Member Posts: 25,912
    edited June 2016

    BlaineJennifer, what an unfortunate side effect -- to have such an intense impact on your health, and to have not been warned about it first!

    Good for you for "kicking some butt" and advocating for yourself (and hopefully future patients being treated by your doctors!).

    Thanks for posting this heads up -- we're sure you are not the only one (unknowingly) experiencing this side effect.

    Hoping you feel better soon!

    --The Mods

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  • GoldenGirls
    GoldenGirls Member Posts: 608
    edited June 2016

    My mom has been dealing with anemia on and off since having lots of rads to her pelvis and starting IV chemo all at once after Xeloda failed. The treatment combined with her extensive bone mets and bone marrow involvement have made it hard to control. She has not been given supplements but does receive a blood transfusion now and again which does a wonders for her energy levels very quickly.

    My mother's oncologist is amazing and she has continued to see him even though she moved almost 2 hours away after her initial dx. As the one who takes her to most of her appointments, I can tell you it is a huge pain in the ass to do the long drive and especially in the winter months or for super-early appointments that have us up at 4 AM and on the road by 5, but it's been worth it in order for her (and me) to not have to second guess her care like we would had she opted for the closer smaller hospital (won't even get into what a shit show her mets diagnosis was at the smaller hospital!)

    The nurses tell her right away if her counts are good or bad and they're very aware of what a difference controlling the anemia makes on her mental and physical health and ability to deal with treatment and all the crap that goes along with cancer.

    Let 'em have it! I'm sure they'll be on top of it once you tear 'em a new one!

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  • RonnieKay
    RonnieKay Member Posts: 2,067
    edited June 2016

    Oh Blaine...this is maddening...thankfully it's had a good outcome...you feeling better!!!! I like to think your nurse wanted to give you a heads up...but wish she could've/would've been the one to contact the onc. I'm at Herceptin now & since day 1 of off & on tx for 7 years, my nurses have always gone over each part of my full blood panel on the computer (where low/high counts are highlighted) & then, given me a copy (protocol has changed a few times where they wouldn't give it out because someone had to interpret, but it always changes back). I had diep flap 6/12 & in Sept, I felt like you...totally dragging. My PT is the one that said I needed to have blood checked and sure enough, anemic. I know how miserable you must've felt & like you, would've chalked it up to C+C....what a huge relief to get some energy back, even with/especially with dastardly chemo!!!! I agree to a kick ass talk w/your medical team!!! You're an educated patient....you need an educated care team! XOXO

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  • Tina2
    Tina2 Member Posts: 2,943
    edited June 2016

    What dodos! Why bother to do blood tests if no one pays attention?! This is infuriating. When you educate the you-know-what out of those jerks tomorrow, you'll help yourself and others.

    Tina


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  • zarovka
    zarovka Member Posts: 3,607
    edited June 2016

    I get frequent extensive blood testing and both of my doctors review my blood tests with me line by line each visit. It is a lot of work and time to keep up with them. You have to decide at some point whether you are a patient or a partner and whether the effort is worth it. I think it is a personal decision and there is no right answer.

    I was technically anemic when I had my tests done last a few weeks ago. I was 3.36 when the range is 4 to 5.5. The blood test did occur at the beginning of a period of fatigue. I am on Ibrance and the last two weeks of that cycle were very hard. I suspect I was taking a supplement that suppressed the metabolism of Ibrance and increased the levels of the drug in my blood stream.

    It makes sense that the anemia caused my fatigue but really don't know for sure if there is a relationship between the low WBC and the fatigue I felt those weeks. I would need to see a pattern over time to be sure. This was the only time I have had low WBC but I have been periodically fatigued during my treatment several times. It was helpful to read your post as it made me review my test results and think about the side effects again.

    I would be careful to jump to conclusions on one blood test. You need to look back through the rest of your tests to see if the low WBC count is there all the time.

    Any type of chemo, including the so called "targetted therapy" that I an on inhibits all growing cells in your body. Your thyroid, pituitary and adrenals, just to name a few, are all highly metabolic and they are effected in what they do by these drugs.

    It is extremely important to treat the fatigue. In my opinion, it is important to be involved in your care and engage with your doctors on treatment decisions. But fatigue comes from many sources and if you want to really get past it, its a long term project and look beyond your WBC count.

    Adrenal function is a big issue. I take a supplement that basically replaces the output of my adrenal gland. I do suspect these drugs are suppressing my adrenal gland. The adrenal supplement was a game changer for me.

    I think your doctors are not reacting to the WBC count because the problem is complicated. It will take a a partnership to solve.

    >Z<

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  • Groovywilma
    Groovywilma Member Posts: 450
    edited June 2016

    Just wanted to share that since being on Gemzar, my doctor said I'm anemic due to the chemotherapy, so this week I started Procrit. My only symptom was fatigue, but my doctor was monitoring my blood work. What treatment did your team recommend to treat your anemia? Good luck with everything!

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  • Lillymillie
    Lillymillie Member Posts: 192
    edited June 2016

    hi ladies, I've been diagnosed with bone mets in pelvis and femur with spots in sternum and spine in march. I am anemic at the moment. My hemoglobin was sitting at 10.3 and should be 12 or 13. A low count leads to anemia. (Hemoglobin is the protein molecule in red blood cells that carries oxygen from the lungs to the body's tissues and returns carbon dioxide from the tissues back to the lungs.) iron was low but think there was a reason why I didn't get iron tablets. Think it interferes with b12, can't remember. I'm on Adcal-D3 and they checked my b12 to see if was being absorbed. The breathlessness is very hard to deal with and I woke up breathless. I walk up a hill after work and there are days when I feel like lying down in the street. I was pretty fit and normally walk 5 miles a day. My diet is really good and my iron slightly improved at monthly bloods but can't seem to shake it. I'll talk to onc next week at review. Anyone any experience with low hemoglobin?



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