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No blood work after low neutrophils?

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Jillybean View Drop Down
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    Posted: Sep 29 2016 at 1:40am
After my 1st chemo my neutrophils dropped to .1. WBC's wee also low as one would expect. I was put on antibiotics. I had my 2nd chemotherapy yesterday and my Neulasta shot today. They are not going to do any blood work until the day of my next chemotherapy (in 3-weeks). This feels scary to me as I had such a low Neutrophil value and ended up on antibiotics. I also had 10-11 mouth sores, a rash they believe was from Taxotere and a fever of 101 at one point. How often do you all get blood work? Is this the norm to just assume that my neutrophils could bottom out again but eventually return to normal, but we don't have blood work data to support what my body is doing differently than another patient's body? I like data so want to know how low I am. Not too many years ago, before broad spectrum antibiotics (although they don't cover viruses and fungus) patients like me would be hospitalized in reverse vacuum rooms. I don't feel comfortable "just trusting the process" given my previous problems. Any thoughts, personal experience with this? Thanks!
DX: IDC TNBC 7/16, age 48, Stage 1, Grade 3, 9mm, KI-67 = 55%, BRCA/all tests are negative, Lumpectomy 8/4/16, Clear margins, No lymph node involvement (1 sentinel node). T/C X 4, 9/6/16. Rad 11/16.
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Kellyless View Drop Down
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Post Options Post Options   Thanks (1) Thanks(1)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: Sep 29 2016 at 3:15am
Did you do the Neulasta the first time? If not, it's the Neulasta that's made your Dr. Not concerned. If you did Neulasta the first time then I'd agree you should insist on another blood test in a week or so. Normally we only get blood tests on infusion day during chemo, unless they suspect a problem.
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/16 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED!
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Jillybean View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Jillybean Quote  Post ReplyReply Direct Link To This Post Posted: Sep 29 2016 at 6:39am
Thanks Kellyless. I did get Neulasta the first time (the day after my 1st chemotherapy). I feel like they are dropping the ball by not ordering blood work once or twice in the days/weeks after chemo. in order to keep tabs on my Neutrophils?

Edited by Jillybean - Sep 29 2016 at 6:41am
DX: IDC TNBC 7/16, age 48, Stage 1, Grade 3, 9mm, KI-67 = 55%, BRCA/all tests are negative, Lumpectomy 8/4/16, Clear margins, No lymph node involvement (1 sentinel node). T/C X 4, 9/6/16. Rad 11/16.
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Kellyless View Drop Down
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Post Options Post Options   Thanks (1) Thanks(1)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: Sep 29 2016 at 9:28am
Be insistent. Flip the question on them. Don't ask IF they'll do a test, ask WHEN they think it's most likely you'll hit nadir, because you ARE coming in for a blood test to make sure you don't hit zero this time. Tell him the anxiety you will have without it will require he start heavy anti-anxiety treatment on you.... wouldn't a some blood test be healthier than that?
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/16 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED!
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Tulips View Drop Down
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Post Options Post Options   Thanks (1) Thanks(1)   Quote Tulips Quote  Post ReplyReply Direct Link To This Post Posted: Sep 29 2016 at 2:49pm
Hi Jillybean, 
I agree that if you want a blood test (no big deal--not too expensive or anything), you should get it!
I'll give you another perspective, (but perhaps this should be called "don't try this at home").  I also had very low blood counts, and had 4 chemo postponements due to them.  Twice it was due to WBC, and I think twice platelets (or maybe one was RBC??).  Anyway, I know my WBC were very very dangerously low; I can't remember the numbers anymore.  I'm sure I should have isolated myself somewhat, but I never did!  I was so craving being around people, I was constantly at parties, (also a very crowded funeral), airplanes (with a mask on though, I promised my husband), with little kids, you name it.  I think it was so good for my mental health in my particular situation and how I was feeling.  I suppose looking back it was somewhat reckless, and I guess i am lucky I never once got a fever or caught anything.  I tell you this not to propose that you also be reckless, but hopefully to let you relax a little in terms of knowing that it is possible to have exceptionally low WBC and neutrophils and NOT necessarily run into problems.  I'm not encouraging it, but it is obviously not automatic that you will get sick with low blood counts.  I am very grateful that I wasn't in any sort of isolation room.  Of course, I was extra alert to how I was feeling and would have gone in to my doctor/the hospital the second I had issues.  Anyway, I realize this is at least a little stupid to be sharing, but I know I was glad to hear that other people were able to be out and about during chemo.

My doctors also just tested my bloodwork when I had chemo (since it's near to me, I'd usually go the day before for bloodwork), not in between chemo sessions.  I think with the neutorophils/WBC, there's not much they would do when they are low anyway beyond the neulasta shots (with RBC, I did once get a transfusion, and I know people get platelet transfusions even though I didn't get one).  So I'm not sure that monitoring them in between chemo sessions would result in much action if you are already getting the neulasta shot.  I think they like to test the day of or the day before chemo because it helps them decide if they should postpone giving you more chemo at that point.  Not sure what they would do with the info that your WBC are low halfway between your sessions.  Maybe just more of a warning to wash your fruit & veggies carefully and stay away from sick people, etc.  I could be wrong--maybe there are WBC transfusions??

Good luck, I know this is all so scary, but you will get through it!  Anyway, I see no harm in you getting to collect all of the data you want (as a fellow data-hound….I actually graphed all of my bloodwork results throughout chemo!) and if it makes you feel better to see more results, they should let you!  And I hope that my message either serves to entertain you (feel free to mock me and my reckless ways), or preferentially to help you worry a little less (even if you hopefully remain scrupulously careful!).  But just know that after chemo, my bloodwork bounced back to where it should be and that is all a distant memory!

I'm praying that your next chemos are much easier for you in every way!!  Take care!
Tulips
Dx April 2015 IDC TN 2.2 cm, Grade 3, Chemo started May 2015: Taxol/Carbo then AC, Lx with SNB Nov 2015, 33 Rad Dec 2015-Feb 2016. 6 months Capecitabine starting March 2016
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Post Options Post Options   Thanks (1) Thanks(1)   Quote mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: Sep 29 2016 at 9:50pm
Good information here. My only add to this would be that with chemo things can change rapidly, it's a whole different world for our bodies and the side effects are something we're just not accustomed to recognizing. So, if your team says no they won't do blood work every week, which could well be their response, if it were me I'd start a journal of my health for the inbetween times. I'd record all my side effects in detail and report them every day or every week to their office. It's not a bad thing, you won't be a pain, you'll just be doing your job as a good patient!
dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Jillybean Quote  Post ReplyReply Direct Link To This Post Posted: Sep 29 2016 at 10:45pm
Thanks Tulips and mainsailset: Tulips, I wouldn't dream of mocking the way you chose to live and it obviously was very good for you. It actually helps to hear your story and give me hope that my future nadir's don't have to be with fever or hospitalizations. I ended up with a fever after the very first chemo. and my neutrophils were low (.1). This dang cancer thing just keeps us guessing what is going to or not going to happen. That's the tough part. Now knowing what to expect next. Mainsailset, I've been keeping a journal so I can keep general track of what to expect this 2nd go around. I was put on antibiotics the first time due to my neutrophils so would think they'd also want to be a little more cautious. They did finally agree to order labs for me on Monday, if it "helps you feel better, but we do expect it to be low." I don't actually want to crash so bad to "prove my point," but I do want to know if I tank like before. I feel like they forget that each day we are dealing with something different, unexpected and unplanned and could thus be mindful of our fears and worries as cancer patients. Thank you for your responses!
DX: IDC TNBC 7/16, age 48, Stage 1, Grade 3, 9mm, KI-67 = 55%, BRCA/all tests are negative, Lumpectomy 8/4/16, Clear margins, No lymph node involvement (1 sentinel node). T/C X 4, 9/6/16. Rad 11/16.
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Post Options Post Options   Thanks (1) Thanks(1)   Quote AmyL Quote  Post ReplyReply Direct Link To This Post Posted: Sep 29 2016 at 10:48pm
Hi Jill,
I agree with the others. I don't think they routinely check between chemo sessions , because if you're not sick it's not an issue. Neulasta should hopefully keep your counts from tanking too low. I could always tell when I was low. I would get mouth sores and feel blah. If you have any of the symptoms that they warn you about...fever, abdominal pain, mouth sores, let them know and they will usually want to see you in the clinic. I feel like I had extra visits during all of my AC doses and three courses of antibiotics! I know it stinks to feel like you're just waiting for something to go wrong, but hang in there. You're half way done with chemo!

Hugs,
Amy
Dx Dec '15, 1.1 cm, stage 1A, gr 2, TNBC, BRCA -, 1/16 lumpectomy with red/lift, 2/16 DD A/C x 4, Taxol x12, planed radiation summer '16.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Jillybean Quote  Post ReplyReply Direct Link To This Post Posted: Sep 29 2016 at 10:59pm
Hi Amy, so I'm supposed to call if I have mouth sores? I was lead to believe to expect them. I was given a prescription for a numbing rinse went I went in for my initial Toxicity Check appointment. I had been faithful about rinsing with baking soda. It sounds like you are saying that Mouth Sores are evidence of a problem rather than an expected side-effect? I had 11 in my mouth and didn't eat more than popsicles and Jello for 5-days. Thanks.
DX: IDC TNBC 7/16, age 48, Stage 1, Grade 3, 9mm, KI-67 = 55%, BRCA/all tests are negative, Lumpectomy 8/4/16, Clear margins, No lymph node involvement (1 sentinel node). T/C X 4, 9/6/16. Rad 11/16.
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Post Options Post Options   Thanks (1) Thanks(1)   Quote AmyL Quote  Post ReplyReply Direct Link To This Post Posted: Sep 29 2016 at 11:15pm
Jill,

You're right that they are a common side effect, but it was on my list of side effects to call about. I know that once my throat was so sore that I couldn't swallow and they started antibiotics. I liked saltwater gargles better than baking soda. I also used these things called xylamelts that stuck to your gum and kept your mouth from drying out so much. G.U.M.S. Makes a toothbrush with really soft bristles. It was the only thing I could use. Brushing my teeth made me gag every time but I used Biotene rinse and that helped. Sugar free Popsicles were my salvation. Really trust your instincts and if you are worried, call the nurses in your office. That's what they are there for,

You can do this girly! Call or text me if you need to talk!

Amy
Dx Dec '15, 1.1 cm, stage 1A, gr 2, TNBC, BRCA -, 1/16 lumpectomy with red/lift, 2/16 DD A/C x 4, Taxol x12, planed radiation summer '16.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Jillybean Quote  Post ReplyReply Direct Link To This Post Posted: Sep 29 2016 at 11:48pm
Thanks for the suggestions and encouragement, Amy!
DX: IDC TNBC 7/16, age 48, Stage 1, Grade 3, 9mm, KI-67 = 55%, BRCA/all tests are negative, Lumpectomy 8/4/16, Clear margins, No lymph node involvement (1 sentinel node). T/C X 4, 9/6/16. Rad 11/16.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote gordon15 Quote  Post ReplyReply Direct Link To This Post Posted: Oct 02 2016 at 6:05pm
 My wife never had chemo without blood tests first,  on the same day, at her appointment. They get the results in about 15 minutes, if white cells are low (she was ok), or red blood cells low (she had a transfusion once, and had to come back later) they don't give the chemo.

< I feel like they are dropping the ball by not ordering blood work once or twice in the days/weeks after chemo. in order to keep tabs on my Neutrophils?>

Sorry, I read back your messages, in our experience, they don't do blood tests in-between chemo, sometimes the oncologist will do it the week before chemo, but they have ALWAYS tested on same-day for blood counts for my wife. The Nuelasta or Nuepogen are, in my opinion life-saving drugs, if the Nuelasta give you side affects, you can ask for the other, my wife has had both without complications, and sorry about the mouth sores, that should be able to be taken care of with the chemo-nurse recommendations. My wife had toe-nail especially big toe problems, instead.

If you were so low on WBCs, antibiotics are probably good, they will test you prior to next chemo, actually, in my experience, "trusting the process" has actually been pretty good. I'm not saying mistakes are not made.


Edited by gordon15 - Oct 02 2016 at 6:33pm
wife: IDC/Lobular Stage2B 2008 lumpectomy/TAC+rads
TNBC Stage 3A/w/metaplastic/squamous Nov2015 Carboplatin-Gemzar chemo/masectomy Taxolchemo+rads 4-16
PET scan stable 9-2016/ 1-2017
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