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Zero White Blood Count after 1st Chemo

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Penny View Drop Down
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    Posted: Feb 03 2017 at 1:45pm
I have finished my first TC chemo on 1/23/17 and went to my oncologist yesterday for the first time for a check up and blood review.  He told me my white blood count was zero and has put me on home isolation.  Said "you have had an extreme reaction to chemo" and said "you have the least harsh chemo available".  He seemed surprised I had such low counts.  He said I now have to have a five (5) day regimen of shots to boost up my white blood cells.  During my infusion, I went into anaphylactic  shock on the"T" chemo bag.  That was terrible. I felt okay after chemo, then I lost my taste buds on day 3, and got thrush and mouth sores on day 7.  And felt just kinda "icky".  My sense of smell was so heightened I couldn't even cook dinner without going outside for fresh air.   They ordered "magic mike" for me which hasn't really gotten rid of the thrush and mouth sores.  So I am very worried about my next chemo treatments as I have heard chemo is cumulative and you feel worse as you go.  The only good news is I still have my hair (not sure when that goes).  Can anyone tell me what I should expect from these shot series?  And possibly prep me on how the cumulative might look so I can mentally prepare for things (if that is even possible).  I appreciate any advice. 

Thanks, Penny  
DX IDC, TNBC 12/7/16 (age 55), Stage 1a Grade 2, .6cm, 0/1 nodes, Lumpectomy & node dissection 12/22/16, BRCA1&2 negative 1/23/17 Chemo TC. Chemo completed 3/28/17. 30 RADs completed 6/6/17.

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gordon15 View Drop Down
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Post Options Post Options   Thanks (1) Thanks(1)   Quote gordon15 Quote  Post ReplyReply Direct Link To This Post Posted: Feb 03 2017 at 6:19pm
My wife had a couple instances where her white blood cell count was too low, on at least one occasion, they gave her an arm-pad Nuelasta injector, on a Friday, and told her to come back for that chemo session the following week. This was in 2015-16, in 2008, she had Nuepogen shots, sorry if the spelling is not correct, but the daily shots of Neupogen, she gave to herself, they are just as effective, they are a milder dose. The only reason, according to what nurses told me for Neulasta being replacing Neupogen, is it's a slow-release, and only one shot per week, and it seems the drug co has perfected it more to mitigate side affects, but most insurance, from what I know pay more easily for Neupogen, more generously I mean, and it works as well. It should boost your WBC counts then your doctors can give a blood test before deciding on resuming your chemo.

It's possible the mouth sores, any infections might be more likely because your WBC is low, but I'm not a doctor, hope this helps...
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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Post Options Post Options   Thanks (1) Thanks(1)   Quote mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: Feb 03 2017 at 11:05pm
Hi Penny, sounds like you may have had the reaction to "T" or the Taxol. Please ask about a switch to Abraxane. Also, it may be an option to look at decreased doseages. I'm not a doctor or a professional, just someone who has been here a long time and have heard things along the way.

Don't worry about your hair, mine didn't start to fall out until about 3 or 4 weeks in, it takes awhile.

Don't be shy about asking for more options. Often, by asking you may open the door to a good discussion. Most doctors work in a clinical surrounding and have access to a 'tumor board' where all the doctors round table and share quandaries. You might ask if your oncologist has shared your situation with his partners or a tumor board to see if others have suggestions.

The medications for your low count will likely cause you some bone aches. Ask your doctor what he would suggest and do follow through. During this time it's important to try and keep eating, even though stuff tastes and smells icky. Any pain medication you may take needs to be with food, don't think you can get away with empty stomach when you're taking medication.

I found that cooking foods just wasn't my thing. I did do well with cottage cheese and red pears. Also did well on the boxed soups, mostly the red pepper soup. Anything with sugar or sweetener was a non starter so don't even bother. Cereal also was good, but be careful of mouth sores. Sometimes oatmeal with milk and raisens will work. Don't try and drink things that are too hot. It's a learning experience, just be sure and pay attention to even the smallest of side effects and report them to your team. I used Biotene for the mouth sores, it was really great and they have a small spray for dry mouth. Also, I use Systane for my eyes, it really helps if they get dry.

Hang in there and do see if your doctor has more than one option idea for you.
Best,
Mainy
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 Penny Quote  Post ReplyReply Direct Link To This Post Posted: Feb 05 2017 at 2:44pm
Thanks Gordon & Mainy.  Just got my 3rd injection.  I do see on my orders that 2 days post chemo going forward they have me coming in for the Neulasta shot for the remainder of the series.  I guess I am wondering on the cumulative piece.  From what I have read, the first round of chemo is the easiest, then it gets progressively worse as more chemo is introduced into your system and meets the other chemo.  Not sure if any of this is right.  Appreciate the feedback!  Penny 
DX IDC, TNBC 12/7/16 (age 55), Stage 1a Grade 2, .6cm, 0/1 nodes, Lumpectomy & node dissection 12/22/16, BRCA1&2 negative 1/23/17 Chemo TC. Chemo completed 3/28/17. 30 RADs completed 6/6/17.

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Post Options Post Options   Thanks (0) Thanks(0)   Quote mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: Feb 05 2017 at 6:44pm
Hi Penny, I think your question is probably best for your doctor and the team. My understanding is that by cumulative the concept is that there are many working parts; more and more cells are being interrupted, killed and reproducing differently. That's pretty much why it takes awhile for your hair to start to fall out.

Because it's a process, and the effects are what is cumulative, you will notice different changes week to week. This is probably a good time to remind you that you need to develop a hyper awareness of your body...keep a BP & temp monitor on hand and use them. Keep track of your symptoms in a journal and report them to your doctor.

I bought a gaiter or muff that was very pretty and that I could wear pulled up around my mouth and nose. Sometimes when I was in a crowd I would wear a mask I got at my doctor's office and then pull up the muff around it when I wanted to protect myself from crowd germs. I washed the muff regularly.

Do ask your doctor directly to go over with you what cumulative really means.
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 (1) Thanks(1)   Quote *Nancy Quote  Post ReplyReply Direct Link To This Post Posted: Feb 07 2017 at 9:31pm
My experience with chemo wasn't cumulative. I had the same reaction each time. The first day usually wasn't too bad. The 2nd day, I would go in for the Neupogen shot and I still didn't feel bad. By that evening, I would be tired and sluggish. The next 2 days would be bone pain (due to the Neupogen building my white cells back up). When your white cell count is down, you are REALLY able to get infected, so stay away from crowds. (I actually got poison ivy for the first and only time in my life because I sat outside after chemo while my sons were cutting the grass and doing yard work. Apparently, just the little bit of a vine that they cut that got in the air was enough to give me the rash all over.) I was good about taking my pre- and post-chemo meds, and had little if any nausea or vomiting. I tried to eat and drink. My family was good about taking care of that type of need for me, since I didn't even want to move at times.
Dx March 2010, age 54, 5 mm tumor, Stage Ia, Grade 3, 0/3 Nodes, Ki-67 70%,

Lumpectomy April 2010, TC x 4, Rads x 33, Treatment completed Sept 2010, NED 05/16
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Post Options Post Options   Thanks (1) Thanks(1)   Quote Debbie17 Quote  Post ReplyReply Direct Link To This Post Posted: Feb 08 2017 at 12:01am
I started my treatments with AC every 2 weeks for 8 weeks; my WBC never held up.. chemo on Monday and neulasta pod on Monday. My second round is TC every Monday for 12 weeks.. my WBC has been all over the place.. I now get neupogen on Fridays to hopefully get me where I need to be for treatments on mondays. As for cumulative effects, I think that's mostly internal. The cumulative effects will more than likely effect your labs more than your side effects... this is what I was told and what has been true for me. My first doses were the worst.. I honestly thought if this is what I was going to endure for 6 months I would welcome death. It got better. My Doc said after a few doses your body kinda gets used to the drugs and doesn't fight them as much.. that being said.. research. Know what you are taking. Not just the chemo.. but all the stuff they give you before and the prescriptions they give you at home. Each has their own effects.. I was dying from extreme hot flashes, anxiety and insomnia after starting Taxol and carboplatin. I assumed at first it was from the taxol. But after looking over the pre-meds I found I was receiving a high dose of steroids with each treatment., simply lowering that dose changed my life... so in short.. expect labs to be all over the place... side effects are not always cumulative. Research everything.

Edited by Debbie17 - Feb 08 2017 at 12:03am
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Post Options Post Options   Thanks (1) Thanks(1)   Quote gordon15 Quote  Post ReplyReply Direct Link To This Post Posted: Feb 13 2017 at 5:56pm
I'm sorry you have had a bad reaction to chemotherapy, I think it helps to hear from you, my wife is "stable" but that just means the PET/CT detects no cancer-cell activity, to date...

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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Post Options Post Options   Thanks (0) Thanks(0)   Quote baldbridesmaid Quote  Post ReplyReply Direct Link To This Post Posted: Mar 04 2017 at 1:10am
After my second AC treatment, I went to the ER with a fever and tummy issues and ended up hospitalized for 6 days with campylobacter (basically.....food poisoning for those with no immune system). My WBC was .3 Confused

This round (3 of 4!), I am on neupogen. I haven't had my counts checked, but it's making a big difference in the way my mouth sores are healing. I also had a little sore throat that went away on its own, which never would have happened during the last two rounds.

During nadir, I am still self-sequestered (haven't left the house since Wed.), and I am VERY VERY careful about what I eat...but hopefully, the neupogen will keep me out of the hospital. The stomach shots will be worth it!

After pregnancy, I am hoping to go on neulasta....I've heard good things about it.


Edited by baldbridesmaid - Mar 04 2017 at 1:13am
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Post Options Post Options   Thanks (0) Thanks(0)   Quote gordon15 Quote  Post ReplyReply Direct Link To This Post Posted: Mar 05 2017 at 7:44pm
I'm sorry you experienced a very low white blood cell count, my wife did also, but the nuepogen shots took care of that, she didn't trust me to give those to her in the abdomen, but I watched her give those to herself, and in 2015, she had the neulasta shots, at the doctors office. The nepogen shots are a daily shots, and if the patient doesn't want to go to a local Dr or clinics, he/she needs to self-administer.

I have been told that about 95% of patients now get the Nuelasta shot, to boost white blood cell counts, because it's once a week, and they can put also  a pod self-injector on your arm on the Friday before a weekend, of course, all this is subject to insurance paying,
which is a huge issue to negociate insurance. My wife has dealt mostly with CCare, they were tremendous, before she went on Medicare, in processing papperwork
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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