Anyone else having chemo induced anemia?

AWK
AWK Member Posts: 364 Member

I am in a clinical trial and have had ongoing issues with this to the point where it is part of my official diagnosis.  I get transfusions for both platelets and blood plus iron.  I have made diet adjustments too but it is so severe the diet is probably more for me mentally to feel in control.  Any other ideas?  

The level of exhaustion is indescribable beyond at I have experienced before.  It comes and goes.  And if your doctor is telling you to let them know about any bruising, gum bleeding, mouth sores or sore throat I can vouch that this is important information And worth the call even if you think you are bothering them.  (Which I tend to think.)

Aside from that th trial is worth it for me and for thE greater good.  I am still stable and my doctor tells me th are learning quite a bit about the toxicity and side effects from the participants.  What I am experiencing isn't uncommon.  And as he has pointed out - in some ways my bone marrow is worn out after all of these years of continuous treatment (2 1/2) which is typically the case for many of my fellow patients.  

Hope you are well.  I am resting with my two Labs by my side.  No riding for me today.  Hugs - Anne

Comments

  • AWK
    AWK Member Posts: 364 Member
    Wierd typos by ipad

    Too tired to go back and fix them.  Lol.

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,352 Member
    Anne, again I have to say

    Anne, again I have to say THANK YOU for your participating in a clinical trial.  The world benefits from patients willing to try new treatments.  It is such a gift to everyone and is humbling. 

    Sleep is restorative, so saw some wood and rest.  

  • Lou Ann M
    Lou Ann M Member Posts: 996 Member
    Yep!  it is officially back

    Yep!  it is officially back as of today.  I almost had my numbers back to normal, but today anemia was back.  I was supposed to have chmo today. 2nd treatment of the Taxol/Carbo with the desencitizing, but my platelets were to low 77 .  They have to be 100 to go ahead with the Taxol.  We nwill try again next week and hope the come up in that time.  My doctors don't like to do transfusions for platelets unless it is extreme.  I have been told several times that there is not much you can do about chemo induced anemia except wait it out.  One doctor told me if it would work he would tell me to eat turnips and liver, but it wouldn't.

    I also heard that my bone marrow was wearing out today.

    hugs and prayers, Lou Ann 

  • AWK
    AWK Member Posts: 364 Member
    Lou Ann M said:

    Yep!  it is officially back

    Yep!  it is officially back as of today.  I almost had my numbers back to normal, but today anemia was back.  I was supposed to have chmo today. 2nd treatment of the Taxol/Carbo with the desencitizing, but my platelets were to low 77 .  They have to be 100 to go ahead with the Taxol.  We nwill try again next week and hope the come up in that time.  My doctors don't like to do transfusions for platelets unless it is extreme.  I have been told several times that there is not much you can do about chemo induced anemia except wait it out.  One doctor told me if it would work he would tell me to eat turnips and liver, but it wouldn't.

    I also heard that my bone marrow was wearing out today.

    hugs and prayers, Lou Ann 

    Okay Lou Ann

    We will do this together.  My platelets got as low as 17 - and down  the high thirties aren't unusual.  The bounce back amazes me even when I don't have transfusions.  RBC goes to high six - I average high 8 at peak.  My doctors really are adamant about not riding below 100 on platelets.  After seeing a friend who is healthy take a bad fall the point was driven home.

     Hugs to you and gratitude for our donors!  Here is hoping your counts bump up!  Anne

  • EZLiving66
    EZLiving66 Member Posts: 1,482 Member
    (((Anne)))

    I'm so sorry you have to through all this.  

    Please just take care of yourself.  I have my little Maltese sitting on my lap right now and after working for the past two hours, am done for the day.....and my work consisted sitting in my chair in my pj's doing billing on a remote computer.

    Something as simple as taking a shower is a major accomplishment these past few days.  I cannot imagine how your're feeling after being on this treatment for so long.

    Take care,

    Eldri

  • molimoli
    molimoli Member Posts: 514
    We are just happy to hear how you are Anne

    No one cares about typo,Sorry about the low count ,rest and eat a lot.In my eyes you are the picture of bravery,We thank you.

    Hope you rebound soon and NED hurry home. Plenty tight hugs, Moli

  • Editgrl
    Editgrl Member Posts: 903 Member
    Stable is good

    But I'm sorry you are having to go through all of this in addition.  I wish I had some suggestions for you, but all I can say is thank you for doing what you can to not only help yourself but so many others.  Hugs to you.

    Chris

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,811 Member
    Editgrl said:

    Stable is good

    But I'm sorry you are having to go through all of this in addition.  I wish I had some suggestions for you, but all I can say is thank you for doing what you can to not only help yourself but so many others.  Hugs to you.

    Chris

    Anne

    So glad you continue to be stable!  Sure wish there was some magic formula for the hit on our marrow production... And, the resulting anemia.

    I can't even imagine how hard that is for you.  The fatigue I get with chemo without having such a low count is horrible enough.

    Please rest, rest, rest!  And hug your labs! 

    Thinking of you all the time...

    Love and Hugs,

    Cindi

  • pinky104
    pinky104 Member Posts: 574 Member
    Chemo Induced Anemia Reply for AWK

    I had chemo induced anemia in August, 2010, halfway through my chemo (carbo/taxol).  I had a transfusion at that point of one unit of blood.  I'd also had two units of blood two days after my surgery due to extensive blood loss.  I had my cancer surgery plus removal of my gallbladder (due to gallstones) and appendix during the same surgery.  The nurses in the cancer center told me I should feel better immediately after that last transfusion, but I didn't.  Two months after my chemo, I had a physical at my family doctor's office, and I mentioned to the PA there that I was still short of breath climbing stairs.  He checked my ferritin level and found it was over six times higher than the maximum normal range .  When I went back to my oncologist a couple of months later, I told him about that.  He decided to do a genetic test, and he found that I had an unusual form of hemochromatosis.   I had to have blood taken out of me then to lower the level of iron in my blood.  I had over two pints of blood taken out over a two week period.  I was due to come back to have another blood withdrawal, but I was feeling very ill.  It turned out I was anemic already and I had a UTI on top of that.  I couldn't have another transfusion because that would have put iron back into me again.  The oncologist (who's also a hematologist) decided it was from my chemo that I had this abnormal reaction to the withdrawal of blood so quickly.  I had to wait for my blood level to get back to normal on its own.

    I wonder if with all your genetic abnormalities, you could possibly have this mutation, also.  It was called an H63D defect and can come from only one parent.  It doesn't always cause hemochromatosis, and scientists aren't sure why some people get it and some don't.  Something like 2 or 3% of the population has hemochromatosis and most people who have it don't even know it.  The normal mutation is called a C282Y defect and it's inherited from both parents, if I remember correctly from 5 years ago when I heard about it.   Of course, you've also been on chemo way longer than I ever was, so your anemia might just be from that. I'm thinking that if you're still not feeling better from all your transfusions, this might be something to check out, especially since you already know you have some genetic mutations.  If you ask your doctor to do a ferritin level, that will tell if you need to investigate further.  High ferritin levels can cause all kinds of problems from heart attacks to cancers.  It's worth looking into.  Good luck. Hope the anemia goes away soon.  You have enough on your plate without that!