Anemia on A/C Chemo UGGH
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Hi Everyone, I am on a/c dose dense right now and the first dose went so well, didn't know I was on it. Ok. ..Now the second dose, right before I got it, they told me my red blood was very low and gave me a blood booster shot (Begins with letter A') - well, they didnt tell me that it would take 8-14 days to kick in. I had my chemo on Thrusday, and by Friday, I was literally paralzed. I could not even lift my head. I was bedridden for four days. I was in a deep depression and could not stop from crying. I realize it also scared me very much - that fact that I could not even move. I could not think. I layed there with my eyes focused on the ceiling - it was the worst experience I have ever had in my life. My husband called my oncologist and she recommended a blood transfusion. This whole experience ambushed me like I never knew - I wished I had know something like this could happen. I was never so scared in my life. I am on my 8th day now and terrified of my next chemo appt. I was told to take iron pills, b12 - which I am doing. This, Im sure is an extreme reaction since I was obviously anemic, however, terrifying. Has anyone out there had anything similar happen to them??
Heidi
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Hi Heidi, I was anemic half way through AC treatments, they should keep a close watch on your blood counts. If it drops to low they should postpone your chemo until it comes back up. I felt so bad I could hardly walk when mine went down, it was due to a two week menstrual cycle. They put me on iron & I ate a lot of meat & beans to get it back up.
After my red count went up my white count went down, make sure that your blood levels are up enough to take chemo.Taxol has been much easier on my blood counts, and I am feeling much better now.
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Your onco needs to read up on current trends in Aranesp (Procrit) usage. This is that "red blood cell booster." There is serious concern that it promotes tumor growth. FDA is very close to barring its use in cancer treatment. Right now, they are recommending extreme caution in that use.
I wouldn't take it if they paid me. I'm trying to beat cancer here, not help it grow.
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Hi Diana, thank you so much for responding. Its good to know Im not alone. I felt completely ambushed by this and now that you mention it, I was also menstruating during my 2nd chemo when this happened!!! Very interesting. Makes sense! Yes, I have heard that also, that they can stop my chemo but ofcourse I don't want it to stop for fear that it wont work as well and get rid of this (bottom line) but I will definately ask them to put iron in my next chemo. I go to get blood work this Tues. and meet with onc. as well. She did mention that it was sometimes done. I definately want it put in. Also, thanks for the advice about beans and meat. I will definately eat more of those during that time. Im also taking iron pills (dont know how much they will absorb but beats nothing. Also taking b12 pills. It was nothing like I've ever experienced. Very scary while it was happening. I thought it would not end. Thank you so much for your good advice. I will keep you posted. I hope you are doing well. Thanks for the tidbit about the taxol. I can't wait to get off this A/C now. Phew. Two more to go. Please god.
to: Lj13. Funny you should say that. My sister just sent me an article about that exact drug and higher reocurrances with tumors using it. Is it only that one drug? or is there others? this very much worries me. I think I may pm you because I would love an answer. Thanks so much.
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Hi Heidi -
Wow, I just saw your recent post and clicked on to see how you were doing - what a mess! I'm so sorry you had such horrible effects from tx2. I know that you, like me, had a relatively easy time with #1, so I was shocked to read about your anemia and its effects on you.
Take those iron pills, eat those beans, do whatever you have to do to get your red blood count up. Hopefully the onc. will figure out a plan for you next week. When you go see her on Tuesday, I'll be doing chemo #2, but I'm getting Taxol/Carboplatin/Herceptin, so hopefully this will be ONE thing I won't have to deal with.
Good luck, Heidi. I hope this works out for you and you don't have to go through an experience like this again.
Keep in touch - have you made any decisions about re-excision/mastectomy yet? You probably haven't been thinking about it recently with all of this!
Sue
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Hi Heidi -
Wow, I just saw your recent post and clicked on to see how you were doing - what a mess! I'm so sorry you had such horrible effects from tx2. I know that you, like me, had a relatively easy time with #1, so I was shocked to read about your anemia and its effects on you.
Take those iron pills, eat those beans, do whatever you have to do to get your red blood count up. Hopefully the onc. will figure out a plan for you next week. When you go see her on Tuesday, I'll be doing chemo #2, but I'm getting Taxol/Carboplatin/Herceptin, so hopefully this will be ONE thing I won't have to deal with.
Good luck, Heidi. I hope this works out for you and you don't have to go through an experience like this again.
Keep in touch - have you made any decisions about re-excision/mastectomy yet? You probably haven't been thinking about it recently with all of this!
Sue
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Hi Heidi -
Wow, I just saw your recent post and clicked on to see how you were doing - what a mess! I'm so sorry you had such horrible effects from tx2. I know that you, like me, had a relatively easy time with #1, so I was shocked to read about your anemia and its effects on you.
Take those iron pills, eat those beans, do whatever you have to do to get your red blood count up. Hopefully the onc. will figure out a plan for you next week. When you go see her on Tuesday, I'll be doing chemo #2, but I'm getting Taxol/Carboplatin/Herceptin, so hopefully this will be ONE thing I won't have to deal with.
Good luck, Heidi. I hope this works out for you and you don't have to go through an experience like this again.
Keep in touch - have you made any decisions about re-excision/mastectomy yet? You probably haven't been thinking about it recently with all of this!
Sue
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Hi Sue, I just got your PM today. Thank you. Yes, quite literally I went downhill right after I wrote you. It was a horrible experience. Im going this Thrus. for my 3rd AC and I am seeing the onc. on Tues. to prepare me for the next one. I am presently taking iron pills, b12 and if my blood comes back low again on Thurs, I am getting a transfusion beforehand. I want to never go thru what I did. I felt like I was literally ambushed. I'll keep posting here to update. Good luck with yours and I'm so happy it is going so well for you. That is great especially where you have to work and be with teens. Phew.
Best,
Heidi
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PS. Sue, very interesting that you are doing a diff. regimen of chemo - are you only receiving one treatment of AC? Maybe they are doing that due to your mastectomy. Much less risky I would imagine. Good for you. I am still "up in the air" about the breast issue. I thought I made my mind up but when this anemia episode started, I re-thunk! Do I want to take a chance of it reoccuring and having to go thru chemo AGAIN. I can't even imagine. SO, no def. answer yet but weighing daily.
heidi
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Heidi, they wont have to stop your chemo just delay it a bit, your body has to stay strong to fight cancer & chemo. Your counts will come back up pretty fast, or at least mine did. I know how you feel though, I could hardly pick my head up off the pillow.
I wont lie to you AC is not easy but once your counts are back up you will feel much better. As bad as you feel you might have to force yourself to eat & drink fluids but it will help get the chemo moving and keep your counts up.
Hang in their compared to AC, taxol is a walk in the park. You only have two more to go, and we are here if you need us.
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Iron pills are helping me too. I didn't have anemia as bad as you Heidi, but it was bad enough to make me feel real dizzy every time I got up suddenly or bent over to pick up something and I was real short of breath. I started taking 50 mg of iron in a basic pill supplement, every 2nd day and it helped a lot. I couldn't eat enough meat and beans and spinach, etc to get enough iron through my diet.
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Hi Heidi:
Hope you and the onc. worked out a plan today to avoid this severe anemia problem. Hope you're feeling better as you gear up for #3 this Thursday.
When I had my blood counts today, I was told that I am on the borderline of anemia (12) and if it drops next time, I will have to have the Aranesp, which I would definitely like to avoid. So tomorow I will pick up some iron pills and B12 and try to hit the beans and red meat hard for the next 3 weeks. Anybody have any other tips to raise my red blood cell count in 3 weeks?
Hope all goes well for you during #3. I think a lot of oncologists are avoiding giving Adriamyacin (sp) along with Herceptin due to the risk of heart damage from both. You also are ER+ and PR+, so maybe that figures into your drug treatment. It is interesting that we're on two different regimes. Are you getting Hercepin now, or are they going to give you that after chemo?
Best to you - Sue
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Hi Sue, thank you. Yes, this is the regime they gave me: Adriamycin & Cytoxan every 2wks for 4 treatments - then - taxol weekly for 12 weeks with Herceptin every 3 weeks DURING taxol - THEN - Herceptin every 3wks to complete a full year of Herceptin. - then decision time for surgery - then 7 weeks of Radiation - THEN - tamoxifen after Radiation. Both opinions (beverly hospital and Beth Isreal both agreed on this treatment) which made me feel better. They did tell me that due to me getting the Herpecin during the taxol that they want to give me a weekly EKG and obviously will stop it if any thing shows damage. I remember them saying that.
I did get the blood booster - I have to find out tomorrow what they used. I thought it began with an "A" but not sure. I will let you know. I know, I've heard bad things about that procrit and the one that begins with an "A" - I have a feeling I will be getting more due to me always being anemic - sister is too. Mother is too so I think it is in our genes?
I heard that LIVER of any kind is the best for iron. A big new england thing is chicken livers w/onions sauteed - also Clams are huge in iron. Beans ofcourse and for some weird reason, "canned" asparagus. I google iron-rich foods and got a great list. Do that so you make sure you don't continue to go down anemia-wise. Thats great you are taking the b12 and iron pills - that will help. Ofcourse you suppose to take one a day - which I do, but being a nervous nellie about tomrrow - I took an extra one tonight. (iron only) Had a steak tonight and canned aspargus! ha ha! Luckily tomorrow Im going to the fish market and getting a bushel of steamers (clams) and eating those! Luckily they are my favorite food!! I'll keep you posted
Good luck to you too. Thinking about you and keep eating. Btw! do you find that you devour food for four straight days after chemo?? Oh my gosh, its crazy. I think its because of the steriod they told me that was in it because after those days, I'm back to normal but its literally a starving feeling constantly which I dont like.Ok.. good luck to you Sue and thank you for your best wishes. You too!!
Heidi
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At what point do you need to treat anemia? I have completed 4 AC sessions and my count has gone to 13.6 to 9.0 after my third ac. My onc said she would consider treating if it goes below 7. Is that too low? I start 4 taxol next week.Do iron pills help? I asked my onc if I should take anything and she said they would not help.
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formygirls: Like I said above, they told me that they'd treat me if I dropped below 12. I googled anemia, and that was the level that was listed on the website I looked at. I'm going to try the iron pills and b12 and hope they help. Good luck getting your rbc count back up.
Heidi: Thanks for the tips; I like liver, so I'll definitely try that and some of the others on your list. A little hard to get fresh clams here in Phoenix, unfortunately! I hope everything goes well for you tomorrow.
Sue
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to build up iron, you should also eat lots of artichokes they have the highest iron content within the vegetable family, spinach is really good as well.
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thanks, bluesky. Love artichokes! And i've got a new spinach salad recipe I want to try, so this should help.
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I have anemia problems with my chemo. I had my doc run an iron study with my last blood test and found that even though I have lots of iron stores, my red cells are just not building fast enough. He took me off the huge iron suplements I was taking, which got rid of the nasty stomach problems I was getting from the iron.
I guess I just wanted you to know tht not all anemia is from lack of iron. You CAN get too much iron, so you might want to have your iron levels checked to make sure you really need the iron.
I ended up with a blood transfusion this week which helped a ton. I am not doing the procrit shots because my cancer has moved to my bone marrow and my doc is afraid the procrit would "feed" my cancer.
Good luck
Deb C
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Deb,
My onc also told me that this problem I am facing during chemo is not caused because of lack of iron stores in me but because the red cells are not building fast enough. She said my iron levels were good so I guess she ran that test. I will confirm with her when I see her on Tuesday. That is her rational for not putting me on iron supplements. Good to know that your onc agreed with this.
I know people get blood transfusions all the time but I would love to avoid it. I am getting so tired of all the surgeries /treatments/MRI's and I am just at the beginning of my journey. Was it horrible to get one? At what rbc level is a blood transfusion necessary?
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Hi formygirls, I am the girl that orginally wrote the post. I was very surprised that your onc. told you that 9 is ok? mine was at 9 and thats when I felt awful - normal as you said is 12 but they told me that 9 was Low and that they did not want me to go lower. When you said 7, I was so surprised. I was given (again this week) the Aronsep(?) blood booster to build my red blood cells (you need to ask about this. At first Aronsep(procrit) had a bad rap but now there are new guidelines and it is very safe. I get it (a shot) right before they do my next chemo while Im sitting there. You need to get something like this. 7 is very low. Also, my onc. did say iron pills help along with b12 - said you won't absorb the whole thing but you will absorb over 1/2 - pls. get the iron pills. When your red blood is low, you are very prone to infection, colds, ect. There are two kinds of iron - Heme iron and non-heme iron - Heme comes from whole foods like liver, clams, mussels, shrimp and turkey (which is really good and easy to eat), lean steak - those are the most absorbent in your system - non-heme is good - not AS absorbent but still great. Things like beans, brussel sprouts, mollasses, spinach, - go ahead and google "iron-rich foods" and you'll get a big list. Anyway, I wanted to write you as I really think you need to get iron and mention the shot. Im worried you will continue to go down as you continue the AC. Also, if you are menstruating, that is another downfall during AC. You really lose iron during that time and is the exact reason I crashed last session. For my last AC - in two weeks, they are giving me an "iron infusion" during my chemo to help. I hope this info. helps you. Get some iron!
Best,
Heidi
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Heidi,
Thanks for the info. I am feeling really weak this week and will push for some treatment when I see my onc on Tuesday. I have no energy to do anything and have felt dizzy a couple of times. Luckily my period did not come in this month because of chemo. I have just finished AC and get my first Taxol on Tuesday and I doubt the RBC will get better on its own. I still have 4 more chemo to go and will have a bilat mast right after chemo. I will be in no condition to have surgery if my count is 7 or 8.
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hi formygirls, oh, I feel so badly for you. I have been having a tough 4 days as well - so weak (just got my ac (3rd) 4 days ago - usually it gets much better on 6th day then Im pretty normal until my next one - unlike you though, I do not feel dizzy. That must be awful for you on top of everything. I hate enough to be bedridden and weak, let alone feeling dizzy - Im so sorry. I hope you are drinking a lot of water/fluids. My onc. told me that after chemo, the most crucial days to drink 3 liters of fluids is directly after chemo and for the next four days. It is important to continue to drink at least two liters thereafter every day. Also, make sure you eat, even if its just "chew, chew, swallow" - just get it down with fluids. You need your nutrients to come back. Yes, if you are at 7, I would not do surgery - ofcourse Im not a dr. but I know they will tell you that. Just don't be afraid to be pushy with asking for help or info. They need to understand how you are feeling. Also, you must be so happy you are done with your last AC. Congratulations!!! I sit here and all I think about is "next one is my fourth one and last one!" and then taxol like you. I cannot wait to have this AC ended. I have heard Taxol is easier and less fatigue - thank god. I have a new appreciation for so many things now - its amazing the things you think about while your feeling awful for so long and you really appreciate your life so much more when this is over huh? Anyway, I wish you the best and keep coming back. I hope the worst is over for you. Big hugs.
Best,
Heidi
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Hello Heidi and formygirls,
I am in a similar situation with the last a/c one week ago and will start taxol in one week. I have been so nauseated after every treatment for 10 days and the doc says my bloodwork is about 30% lower in RBCs and WBCs than the normal chemo patient. I am getting Aranesp for the RBCs and Neulasta for the WBCs. I am only hoping that the Taxol gives me some discomfort for a few days then normal feeling for the rest of the time. Nothing could be worse than the nausea I don't think.
Good luck to you!
Sherri
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formygirls,
Yes, as a nurse practitioner, I think that the iron supplementation is not the answer but more like the Aranesp. It is a $3,000 injection that really really makes a difference in the shortness of breath, no energy etc you get about a week after chemo. It is normally given every 2 weeks but I felt bad the day after chemo and they gave it to me based on symptoms so I am hopefully going to get it every week if needed. The onc office has never suggested iron even though I have asked about it. I don't see how a little in your diet would be a bad thing though. I try to get some red meat whenever possible.
Take care and I know how miserable it is!
Sherri
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Hi Sherri, thanks for your comments. Oh you poor thing - with the nausea on top of it. That has to be the worst. Did they give you any anti-nausea drugs? Can you ask for maybe something stronger. I can't imagine living with fatigue AND nausea. Yes, I am doing the B12 and iron. - I would try it, can't hurt right? I mean, it is iron. I take a senoket-s if I get constipated. Not usually though but good to have on hand if it happens. Its natural too. I get the Aranesp too and get it every two weeks. Mine is right before I get chemo (same day) I almost wish it was like yours afterwards because my worse days are 4 days after chemo - can't get out of bed. The Aranesp kicks in a week later. They told me though that its not good to get that drug every week. That they have new guidelines. ....hmm. maybe I will ask since you are getting it. I think I really need it. Thanks for writing and good luck to you on the taxol. Keep us posted as I'm right behind you on that. One week later I start - can't come soon enough (I hope)
Best,
Heidi
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Yesterday, my rbc was only 8.7 so today I did get the shot for it (finally!)and now they want me to get it every week for the remainder of my chemo. I have 3 more Taxol left. Is there a reason that we should not get it every week?
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Hi formygirl, Oh, Im so glad you got the booster. I will say, I heard you only suppose to get Arespin(?) red blood booster every 2 weeks. Hmmm....I heard the guidelines were just changed because it was more dangerous to do it often. I would bring this up to your Onc. ok?
Heidi
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PS. Formygirl, maybe you did not get "arenesp? did you recall what they called the blood booster? I know arensep(?) should be given only every two weeks but takes 8-12 days to kick in! I hope you feel much better soon. You've been thru hell!
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