low WBC with herceptin only???

weety
weety Member Posts: 1,163

Hi, I'm looking for anyone who had low WBC once they were on the herceptin only part of their treatment.  I finished TCH in December, but still am having problems with my WBC 3 months later!  They were 3.4, then 5.6, and then down to 2.6 this last treatment!  I know herceptin can cause this when in combo with chemo, but what about when it is given alone for the remainder of the year time?

Comments

  • weety
    weety Member Posts: 1,163
    edited March 2010
  • mmm5
    mmm5 Member Posts: 1,470
    edited March 2010

    Weety

    Once again I have been where you are. My WBC stayed low during Herceptin only and even remains low today, I had all kinds of tests all normal. The theory is that when you are triple positive like us you are on Hercpetin and carboplatin and then an AI or tamox which all can affect your WBC's and do. I have another gal that was dxed same time as me same dx and we both still bounce on our WBC's its scary then you get used to it, I do not get sick any more than anyone else in fact less and Onc's both say it is normal and may last for years. We got a lot of treatment and much more than most by being on Herceptin for a year.

  • weety
    weety Member Posts: 1,163
    edited March 2010

    mmm5,

    So far, I don't mind having followed in your footsteps--you have almost hit the 2 yr mark!  I'm not just worried about the WBC's.  I'm getting a  little (okay, a lot) worried about my platelets, too.  They have been going down, down, down every time I get them checked.  I used to have high platelets (sometimes even 10 or so points above the normal limit) and now they are down to 215.  After chemo I had an initial rise up to 424 and then they started going down--346,296, 256, 249 and now 215.  At least the WBC have been bouncing around a bit.  I'm worried about this downward trend!

  • mmm5
    mmm5 Member Posts: 1,470
    edited March 2010

    how much longer on Herceptin for you?

    I can't remember the reference range for Platelets, but what does your Onc say? Thrombocytopenia is very common with chemo, but needs to be monitored in terms of your ability to clot. (what is normal range can't remember) Have you noticed extensive bruising, are you taking any any supplements like aspirin or coq10, fish oil? you may need to go off of those for a bit and recheck platelets?

  • weety
    weety Member Posts: 1,163
    edited March 2010

    No, no supplements, no bruising.  I am still in the normal range (130-400) but I'm just getting worried about the downward trend.  During chemo they ran about 150-200 and I was so excited when they shot back up about a month after. I am about 1/2 way done with herceptin.  I don't finish until end of August.

  • mattzie
    mattzie Member Posts: 13
    edited March 2010

    wow, how amazing to find this thread! i went for herceptin this morning and my onco told me that my blood test from yesterday shows my WBC at 2.8. last time i had a CBC on 2/1 i was well in the normal range, and that was only 1 week after my very last TCH on 1/21. i'm concerned because i never had any blood problems my entire time through 4 months of chemo and yet the time i did have weirdness on a CBC - last summer - was when i had a tumor and didn't know it! yesterday i was terribly tired and spent the day in bed, which is incredibly rare for me even when i had chemo. i am not sick though and not fighting anything off, to my knowledge. it's not radiation causing it because the rad doc says they are not hitting any bone. i went ahead and had my every 3 wk dose of herceptin today but will be re-tested (at my insistence!) on monday. i'm glad to see this has happened to others, sorta sets my mind at ease if you had/have it and aren't sick either.

  • lizzyanne
    lizzyanne Member Posts: 73
    edited March 2011

    I have been getting bruising around my eyes. One looks like I was punched. Could this be from the herceptin? I was also taking a daily aspirin but will stop that. I am on the 3 week protocol until Sept. Didn't even consider that the black eye might be related until today, when I noticed a dark circle forming under the other eye.

  • dharmamama
    dharmamama Member Posts: 138
    edited March 2011

    I do know that bone marrow can take up to a year to heal from the effects of chemotherapy. I have been finished with chemo for over a year now and have been on Herceptin  for 1 1/2 years. I still have a low WBC count, although my RBC,HGB,HCT & platelets are all finally normal. I do wonder if Herceptin may affect WBC counts as well.

  • Sassa
    Sassa Member Posts: 1,588
    edited March 2011

    I am three years out from finishing herceptin.

     While my WBC slowly did rise from the low values of chemotherapy (AC), the WBC basically hover just below normal for the whole year of herceptin.

    After the year of herceptin, it took about one year for my WBC to slowly rise to the low normal range (Don't forget herceptin has a very long half life so it can take a good 4 -6 months to clear the drug enough that finger and toe nail growth, hair growth and blood cell production starts to return to normal).

    My WBC has remained, at this point,  at the very bottom of the low normal values and I don't know if they will ever go back up to the middle range.

    However, my immune system seems to be as strong as ever so I don't feel that the low normal values are affecting my disease resistance.

  • marjie
    marjie Member Posts: 1,134
    edited March 2011

    I am currently just past the half-way point in radiation.  Finished my chemo in February and am now getting Herceptin alone.

    I had problems and was hospitalized during my chemo because by WBC's actually zero'd out. I am a little concerned right now because the "fatigue" I am feeling is almost identical to how I felt when my counts plummeted.  I don't have any bloodwork scheduled until near the end of April so I am wondering if I should request a check?

  • weety
    weety Member Posts: 1,163
    edited March 2011

    I never thought about the fatigue after chemo being attributed to the low WBC's.  I thought low levels of WBC's were kind of a "silent" problem.  RBC's would be more apt to cause fatigue.  I would definately ask for a bloodtest for both, though.  Who knows!

  • marjie
    marjie Member Posts: 1,134
    edited March 2011

    You're right...actually I was told my chemo fatigue was related to my blood counts, kind of non-specific.  Makes sense too because my RBC's would drop as well winding up with me getting transfusions.

  • Slainte
    Slainte Member Posts: 152
    edited March 2011

    Marjie, I still have chemo fatigue . I think the herceptin causes some fatigue for me too. I have always had good WBC counts but I did notice the fatigue was worst during the times when my WBC was lowest. I think it is because when the WBC count is low, all the other "fast growing" cells of the body are affected too and the body had to rebuild/rejuvenate all theses new cells. That takes energy and can make us fatigued. I am only working two days a week and it just about does me in :). Still slowly improving though. How about the radiation? Is that making you tired too?



    Christine

  • marjie
    marjie Member Posts: 1,134
    edited March 2011

    Slainte - I'm sure I still have a bit of chemo fatigue and I notice that on the days I get herceptin, I am pretty much dozing the rest of the day....really sleepy.  I am finding the fatigue right now is pretty heavy but my RO and the techs assure me it's from the radiation.

  • Slainte
    Slainte Member Posts: 152
    edited March 2011

    Fatigue! I don't knownabout you, but when people ask how I am, I'm tired of saying tired!!!! I joke about going to the thesaurus and looking up new words for fatigue and tired lol. And usually I wonder if the person asking is actually listening or even cares lol. My grandma died when she was 102 and we had a pet name for her , Nim. All during my treatments , when my family would ask how I was, I would use the Nim100 scale. What Nim could do when she was 100. Some days I could do more then Nim100 some days less :)) I'm definitely at Nim70 at least these days, maybe better

  • Scrabblelady
    Scrabblelady Member Posts: 261
    edited March 2011

    It is 6 weeks since my final chemo ( Taxol/Herceptin) and am now on Herceptin only.  I was also wondering when the wbc returns to normal.  My hemoglobin & rbc are now normal, but the wbc is bouncing around.  Currently it's at 3.8.  

      Are any of you watching what you eat when your wbc is low?  Do you eat salads, fresh fruits, etc?

    Margaret 

  • marjie
    marjie Member Posts: 1,134
    edited March 2011

    I'm curious about my blood counts too but I don't have any bloodwork scheduled till later in April.  When my counts were low, I was told that I should eat healthy and balanced but there was really no wonder food.  Stay away from raw veggies and fruit when your counts are down because of the risk of infection.

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