Low WBC + low neutrophils + low platelet

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atanea
atanea Member Posts: 58
edited August 2014 in Hormonal Therapy - Before, During, and After

Hello everyone,

It has now passed 1 year since I got my lumpectomy and radiation therapy (no chemo). It has been a  tough year, but doable, I have been on Tamoxifen and Zoladex, with some side effects (insomnia, hot flashes, constipation,etc.) but well, I can survive that. I changed my life style, eat only healthy food, walk 5 km every day, with that I lost 10 Kg along this year (slowly), I'm always remembering that I have to fight for my life. And I'm also aware that I'll never feel safe again. 

But it has been hard...the only thing I wasn't able to get better was my stress levels, after the surgery I started having a lot of problems I never had notice before, horrible coincidences (as I hope). Some time after the surgery I started  having strong back pain, so scared it would be bone mets , but after MRI I found out I have  dorsal hernias (don't ask me how I got that...can't figure out..), so I started physiotherapy and I'm a little better now, after that, they found I have "something" in my ovary, but after 2 MRI, 4 Ecos doctors can't figure what it is, for certain, but, the "thing" doesn't show any malignant behavior and they are sure it isn't related to cancer, probably just some fibrosis, related to a previous surgery I had. After that, some months later, in August, I had a 1 week period with terrible stomach pain, I couldn't eat nothing without having terrible pain, no vomiting, or fever, or just a lot of pain after eating (I never had nothing like that in my entire life). Went to the doctor, and more exams...blood exams, MRI, ecos, etc...they didn't find nothing besides an additional spleen (and that's nothing to worry about), they couldn't explain my pain, and after some days, it disappeared, no one could explain what happened.

After that, I did my annual breast exams (MRI, eco,mamo), bone densitometry,  everything was fine, I also do blood exams every 3 months to check liver values, tumor markers, WBC, etc. Only the AST value was a little more high than usual (but by a small margin). 

So, I was felling so more calm, and I was finally starting to get over this hard year,  but then, all of the sudden, in last November, my WBC started dropping, one year ago my WBC was (after radio therapy) 5.8 x10E9/L,  in December my WBC were 3.8 x10E9/L but everything else was fine, in 17 January they dropped to 2.8 x10E9/L and yesterday they dropped to 1.5, also, my neutrophils and platelets are now also low but lymphocytes are a little high (by a small margin), and so, they called me from the lab to go to the hospital,  but my onc. can't explain what is happening...my RX (thorax) is normal, other blood values are normal but  I'm now immunocompromised...and I didn't even go to chemo...ever...

What the well is wrong with me? I'm not tired, and don't feel nothing wrong, besides bleeding in my arm where they collected the blood (probably due to low platelets) . 

I asked my onc if it could be related with Tamoxifen or Zoladex, and they say no, there is no history of that, and the values are dropping too fast. I was supplementing with garlic pills(1000 mg) + vitamin D3 (2200 UI) + Selenium (100 mcg)+ Melatonin (1,9mg) and taking 2 cups of green tea every day, and the onc advised me to stop everything, so I did (although I can't see any connection..) 

Has anyone have those side effects with Tamoxifen or Zoladex? I'm so scared now...

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  • ziggypop
    ziggypop Member Posts: 1,071
    edited February 2014

    Hi atanea, 

    I certainly do not have an answer as to what is going on - the one thing I would say is that it doesn't seem to have any apparent connection to 

    BC. I would say that your onc is absolutely right in having you stop taking anything additional - it may be that in Portugal supplements etc are regulated - here in the US they are not and can have all kinds of things in them - could be that your garlic pills are actually crushed aspirin. In addition - sometimes the supplements that would normally be innocuous aren't given our meds. 

    The one other thing I would wonder about is why you are on both tamoxifen and zoladex - not that that is wrong, but it isn't something I've heard of. 

    Try not to get too worried - I went for 50 years having very little 'wrong' with me, now that I have BC, I get to know everything that's 'wrong' with me & sometimes I think it's just normal stuff that they are finding because they are looking.  

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  • atanea
    atanea Member Posts: 58
    edited February 2014

    Thanks for your reply, no, supplements here are not regulated, but I buy Solgar supplements that are supposed to be of best quality. My garlic pills have garlic oil, and taste and smell like garlic, but I see your point. 

    Those supplements were advised by another doctor (not my onc), that doctor even advised me to took also vit. E+magnesium+fish oil+vit. C+vit A. But I decided against it (there are some controversial studies about adverse effects of taking anti-oxidant pills by cancer patients, etc ) . But  I have very low levels of vit. D3 (strong D3 deficit that I also found out last year) and that's the main reason I had to take vit. D3

    I'm 36 and pre-menopause, so I have to take Tamoxifen and also Zoladex to shutdown my ovaries for at least 2 years (that's the common practice here, for people with my age and my kind of tumor:  ER100%+ and PR100%+).

    They can't find a logical reason for what is happening, so I will have to  do all kind of tests again...they are even considering autoimmune diseases...I just hope I don't have lupus...or leukaemia or something like that.

    Despite being immunocompromised  I don't have  complains beside a very sporadic chest pain (burn), dry eyes and very sporadic rosacea rash (which I was not  giving too much importance). 

    I don't understand why Tamoxifen isn't the primary suspect...I read the leaflet and it has a warning about Leukopenia, why would they warn about it? 

    But the true is, even if it is Tamoxifen, that's terrible news, if my WBC gets lower I may die with some infection, but if I stop Tamoxifen I will have a greater chance of dying with mets. 

    I which I could blame the supplements, that would be the least serious cause..

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  • coraleliz
    coraleliz Member Posts: 1,523
    edited February 2014

    atanea-My WBCs have been low also. My MO blames it on RADs. I did not have chemo & take Tamoxifen. I take Vit D because my level is a little low.(There is some controversy about what a normal Vit D level really is. Seems like they set the bar too high). The scale used at the lab that does my blood draws, for WBCs, is normal range 4.0-10.0. I was 3.8, then 3.0, then 3.4 & now 2.8. My platelets are low normal 152 with >150 considered normal. They are just watching my WBCs for now, recheck in 2 months. Please come back a post, I think I may be in the same boat.

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  • atanea
    atanea Member Posts: 58
    edited May 2014

    Hi coraleliz,

    My vita. D3 levels where (without supplementing) 21 mcg/L (minimum reference levels where are 32 ) and that's strange because I drink a lot of milk, eat a lot of fish and live in a sunny country (I get a lot of sun baths).

    I asked my onc. about rads and low WBCs, he says "this can't be caused by rads because too much time has passed", I was over rads almost one year ago.  My wbc etc, started going down almost one year ago, exactly after rads and Tamoxifen&Zoladex. My WBC is now 1.5 and platelets 129, and neutrophils 0.56 and that's bad..I even have to use a mask to protect me from other people diseases, I can't go to the swimming pool, or the gym, he even told me I should stay at home. I have been doing all kind of exams this week, Rx-thorax (ok), pelvic, abdominal and renal ultrasound (all ok), hepatitis, toxoplasmosis, etc...all ok. 

    Next week they will test me for auto-immune diseases and if my WBC keeps like this I will have to do a bone marrow biopsy. 

    I'm really scared and I don't get what goes into docs minds. One month ago, when I had 2.8 WBC I asked my onc if that wasn't too low? His answer was, "oh...I didn't even notice that...yes a little low but that may be caused by Tamoxifen...come back and repeat blood exams in 4 months..".   Fortunately, I decided to ask another doc to repeat exams in just 2 weeks. And the WBC had dropped to 1.5 in just 2 weeks and I was told to go urgently to the hospital and talk to my onc. I did, and all of the sudden he was now very worried and told me he had been researching and couldn't find any association with Tamoxifen...he then blamed flu or another virus infection, but I have no signs of that, my temperature is between 36.4 and 37.3 all day, and he says that's not fever, so now he blames my supplements (garlic, green tea, selenium, vit.D3)...or another serious disease (I'm guessing on lupus, leukemia) etc. So, this changes from "nothing" to "all". 

    I'm so scared...

     

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  • ziggypop
    ziggypop Member Posts: 1,071
    edited February 2014

    Hi atanea - 

    Vit 9 deficiency is really common - I was on 50K units a week plus 3000 a day for awhile. As far as the other supplements - it's just a good idea to clear everything 'extra' out of your system just to rule out any effect they might be having. I am wondering whether they could have you do an Oophorectomy to get you off the Zoledex - and also to allow you to get off the tamoxifen sooner and onto an AI (if either the zoledex ond/or the tamoxifen are the cause behind this). How are you RBC counts?

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  • coraleliz
    coraleliz Member Posts: 1,523
    edited February 2014

    atanea-The vitamin D level thing. When I was 1st checked, my came back at 25. With normal being >30. I get a ton of sun. I'm not happy unless I'm outdoors. I live where it's sunny year round. It seems like they lowered the Vit D level normal range now to >20. When I go online & review my medical record, my previously low Vit D level of 25 no longer shows up in red. I take Vit D because it may be good for helping to prevent BC reoccurences. But I'm not convinced I'm doing myself any favors taking it.

    Whatever my issue is, it might not be cancer related. Several years ago, I had a WBC reading of 4.0. The scale being used at that time had normal at 5.0-10.0   So, 2.8 with 4.0-10.0, might not be that out of whack for me. My lymphocytes are always low. Most recent 0.5 with 1.0-3.5 being normal.

    You also mention possible leukemia. In leukemia your WBCs would be very elevated. There is something called myelodysplastic syndrome where WBCs can be very low. It can be caused by previous radiation. I hope your WBCs rebound. The things you are concerned about have all passed thru my head. Hang in there....

    Good luck with your upcoming tests & please keep posting.

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  • atanea
    atanea Member Posts: 58
    edited May 2014

    Hi,

    My RBC is ok, 4 (normal: 3.80-5.10),  my RBC has always been near the low range. But my WBC and platelets used to be ok. Before starting rads and Tamoxifen&Zoladex my WBC was 7 and platelets 251, some time after rads & Tamoxifen&Zoladex wbc went down to 4.6 and platelets 232 (I guess that was probably caused by rads), after that they were steady and  3 months later they both went down a little bit, but in December they went from 3.8 to 2.8 until reaching 1.5 (wbc) and 129 (platelets) some days ago.

    I may be wrong, but to me, that points to rads or tamoxifen (or Zoladex) being the main and maybe only cause. Or radiation or tamoxifen may have caused some autoimmune disease, I have Vitiligo, that's an autoimmune disorder (not that serious) and it got a little worst  after radiation, but went steady after that, or myelodysplastic syndrome, or bone marrow mets, who knows...and that's it...I'm going to ask for a bone marrow biopsy, I can't stand this much more.

    I have been searching some other possible causes, like parasitic diseases, but I believe it's too much of a coincidence, it started exactly after rads and tamoxifen!

    Yes oophorectomy and femara it's probably my only choice (if Tamoxifen is the main cause), but I'm also afraid of an oophorectomy side effects, I'm only 36, couldn't that cause bone and heart problems? And Femara causes also wbc problems, from Femara site: "Some women had moderate, temporary decreases in white blood cell counts. The medical significance of this is not known."

    Tamoxifen rare side effects: "

    • Low white blood cell count with increased risk of infection
    • Low platelet count with increased risk of bleeding
    • Vaginal dryness
    • Blood clots
    • Increased risk of cancer of the uterus
    • ...

     " 

    I'm so tired of cancer...when will i put all this behind my back...god...we must be heroines to stand up for this shitty disease..

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  • coraleliz
    coraleliz Member Posts: 1,523
    edited February 2014

    Hope you don't have a long wait for the additional testing. Will keep you in my thoughts.

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  • ziggypop
    ziggypop Member Posts: 1,071
    edited February 2014

    atanea, 

    Maybe you should ask your doc if you can go on a tamoxifen holiday fo about a month - have a CBC panel a week or so prior to quitting & then a month after quitting & see if there has been some change. 

    I do know that many women who have bad SEs on tamoxifen don;t have them after taking a break from it. Or, if it's clearly the culprit, then the oomph may be the way to go (There are quite a few women your age who have them done, although I can understand your hesitation). 

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  • beau
    beau Member Posts: 374
    edited February 2014

    hi Atenae.

    I agree with ziggypop. Th doctors don't know everything. You could always go off Tamoxifen and Zoledex to see if it makes a difference, especially if you don't see any change with just going off supplements or if they don't turn up other reasons for it. I am glad you feel good because that suggests whatever is happening is ok with your body, if there turns out to be a connection with Tamoxifen, there are other options such as considering a hysterectomy and going on an AI. 

    I also want to add that I did go through chemo and am now on AI. My rbc and white counts are below normal, but after three years, they are improving. I am not sure why but sometimes I think that our bodies deal with these strong drugs differently . I also started taking a slow release iron pill. ( not sure if that is a factor. )

    In any event, I hope they figure it out soon!  

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  • atanea
    atanea Member Posts: 58
    edited September 2015

    Well, ten days have passed, WBC still low (1.5) , and platelets are dropping fast (103) and they still don't know what's going on. Strangely, RBC are not that low, still normal range.

    RX-thorax was fine, pelvic, abdominal and renal ultrasound were fine, tested for auto-immune diseases and result was negative, tested for all kind of virus, all negative, only Chlamydophila pneumoniae igG is 89 (ref. 20) so that could mean a chronic infection, but sed rate is low, and I don't have symptoms so that's kinda improbable.

    Finally, they have realized this has nothing to do with green tea or supplements...something that was kinda obvious ten days ago...this were just the worst 10 days of my life, and still have to wait more 3 days to know the true. And it doesn't look good.

    Now they told me to stop Tamoxifen to see what happens and I will have a myelogram next Tuesday, and Thorax&Abdominal CAT-scan. That's when it hit me. They told me about some bone marrow diseases...the true is they are probably thinking in bone marrow mets and aren't telling me! Just read bone marrow mets symptoms and very low wbc and platelets are one of the major signs.

    Things are getting worst every day, know I'm hopping on Tamoxifen or Zoladex side effects..

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  • beau
    beau Member Posts: 374
    edited February 2014

    hi Atenae,

    I just want to offer you a cyber hug. (( )) I hope it turns out to be the Tamoxifen too! I wish that I had some wisdom to offer you, but hang in there. I will be thinking of you. 

    Best, Beau

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  • coraleliz
    coraleliz Member Posts: 1,523
    edited February 2014

    atanea-keeping you in my thoughts. Hope the answers come soon. Tamoxifen has a half-life of 10-14days. So it stays in your system for awhile. Just my guess but if it's the Tamoxifen, you might not see any improvement for at least 2weeks, maybe 4. I'll check back & see how you are doing. Take care.

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  • atanea
    atanea Member Posts: 58
    edited May 2014

    Thank you for your support. 

    Well, no bone marrow biopsy today...postponed to thursday...they are driving me nuts..

    I also did a dengue fever test, still waiting for the results, I went to a place where I could had caught  dengue, but that was 2 and half months ago...and I didn't get any dengue symptoms meanwhile...so...it's very unlikely...

    Meanwhile, I started having nausea sporadically, feeling fatigued, sores in the mouth and also, detected two swollen nodes in the neck....pointing to leukemia or lymphoma....in leukemia, white blood cells may be suppressed, so I guess it depends on the stage....but how unlucky could I be? Getting two different cancer diseases in just a year?? I didn't get chemo...so my risk for leukemia shouldn't be not that high...I just can't believe this is happening. Can breast cancer even spread to the lymph glands in the neck?? 

    I spend the whole year listening to everyone telling me that I have been lucky for heaving a small sized IDC  (1.3cm), with a ki-67 < 15, grade I or II (one pathology report says it's grade I the other says its II ) 0 positive nodes (but there where two sentinel nodes and  only one was taken for analysis), I did have LVI...well..one report says I had LVI the other says I didn't have...

    I just can't accept this...I hate cancer so much..

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  • beau
    beau Member Posts: 374
    edited February 2014

    Hi Atenae,

    just want to offer you encouragement. when I was going though chemo, I read a quote from someone's signature line that I loved: 

    " I have been through some terrible things in my life, some of which actually happened" I hope that you don't take offense: I am just trying to offer you comfort. The doctors don't know everything. If you are feeling good, please try not to focus on worse case scenario. (i know that it is easy for me to say! I would have a tough time too). I hope that the doctors are putting off the bone biopsy because they don't want to do it unless they know why they are doing it. ie. if you are feeling good, maybe the Tamoxifen is the culprit so why do an unnecessary procedure? 

    In any event, I know how scared you must be. I hope that it just proves that are unique but not ill. I will be thinking of you. 

    Best,

    Beau

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  • atanea
    atanea Member Posts: 58
    edited February 2014

    Thank you beau, but unfortunately these doctors are jerks,  stupid and irresponsible. The result is out. I have acute leukemia. 

    My advice to everyone is...never completely trust in any doctor. I felt in my gut that something was terrible wrong, they didn't care...for two weeks they didn't want to do the myelogram, they blame the green tea, etc...and now I'm worst. The WBC started dropdown in January...it was 2.8 then...but they sent me home and asked me to come back in May...

    I was sad, now I'm just mad, I will fight this with all my strength, cancer likes me, but I don't like him, and those bastards are not going to kill me.

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  • coraleliz
    coraleliz Member Posts: 1,523
    edited February 2014

    atanea-The news you feared! I'm speechless. I will keep you in my thoughts.((((hugs))))

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  • car2tenn
    car2tenn Member Posts: 515
    edited February 2014

    OH my I am so sorry to hear your news.  I am a nurse practitioner with lots of years of experience.  I am stage 4 and now am getting to have lots of experience with docs in the Oncology world.  Unfortunately,  I have huge amounts of negligence and total disrespect of patients and their time and needs.  I have also seen some good practitioners but overall I agree with your entire summarization.  Blessings to you my friend Carolyn S

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  • Rdrunner
    Rdrunner Member Posts: 309
    edited March 2014

    so sorry to hear this atanea.. having problems myself with counts.. my lymphocytes haven yet come back to normal even a year after i finished treatment.. they came up a tad but still abnormally low and now are starting to drop.. neutrophils are ok as are RBC and platlets so not sure what is going on.. waiting for blood work results to see if i need to see hematologist

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  • atanea
    atanea Member Posts: 58
    edited October 2015

    Well, the only positive thing about this is that one of the 'best' types of acute leukemia...so I have good chances to survive this if I survive the first month of chemo & all-trans retinoic acid. But I will be staying at the hospital for a very long time.

    I'm so glad I didn't listen to those stupid doctors with their brilliant ideas " WBC = 2.8 is not that bad...come back in May" or "It's the three cups of green tea" or "You wouldn't get leukemia with those hemoglobin levels" If I had listen to them, I would have bled to dead meanwhile.

    I'm now being treated by a different team of doctors and I have a good feeling about them.

    This type of leukemia is caused by a chromosomal translocation...doctors usually blame chemo for this...but I never had chemo before...so the only one to blame is radiotherapy and maybe bone marrow suppression caused by Zoladex & Tamoxifen ?...who knows. Stupid rads, I which I had never done that. They didn't let me have a full mastectomy instead of tumorectomy&rads...and now this..

    Something went very wrong just after rads&Tamoxifen&Zoladex, my WBC used to be 7-8 before that, but immediately after, it went bellow 5 and never recovered.

    I'm not saying everyone will get this...it's rare...but everyone that had chemo or rads before, and watched WBC or RBC or platelets dropping down should do regular blood tests and go to the hematologist. If it turns out to be nothing...great...

    I'm strong, I will get throw this...again...

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  • ziggypop
    ziggypop Member Posts: 1,071
    edited March 2014

    Oh atanea - I'm so sorry that you have to go through this and it wasn't something much simpler. That said, I'm glad they have finally figured it out and you can now get the treatment you need. Good for you for being persistent in making sure they did. Sorry too that you have to be in the hospital for a long time - check in with us often. When hospital boredom sets in, there are lots of entertaining threads here & it can be a great thing to have some people that you can just go ahead and whine to. 

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  • sandilee
    sandilee Member Posts: 1,843
    edited March 2014

    atanea,

      Just read this thread and your story, and wow.  It's amazing, and a reminder for all of us to trust our gut and get the answers we need, even when it's hard.  I'm so sorry you are going through this.   I hope you have some real life support, but if not, you know you can find it here.  Thank you for coming back to this thread and letting us know what's going on with you.

      {{{giant hugs}}}

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  • beau
    beau Member Posts: 374
    edited March 2014

    Atanae,

    I just can't believe this is happening to you. I am so sorry. Yes, fight! 

    You are right about doctors. They get bored with us and then know all the answers. Not always, but often. The doctor who listens actively is rare. I hope that you have such a team know. You deserve it!

    best

    Beau

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  • Rdrunner
    Rdrunner Member Posts: 309
    edited March 2014

    Atanae thank you for letting us know ... i have thought about you often and will continue to send you positive thoughts across the ocean. You can and will do this!!!!

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  • atanea
    atanea Member Posts: 58
    edited May 2014

    Hi everyone,

    Just passed by to say I'm still alive and kicking :) survived the first cycle of chemo, it was hard, infections,  bleeding from everywhere, all kinds of pain, but better now. My wbc and platelets are now slowly recovering.

    Today is my 34 day at the hospital, I also had my second myelogram and I'm now in full remission, that means the treatment is working, and that's probably one of the best news of my life. Still more 4 cycles to come, but shouldn't be that dangerous as this first one.

    The only downside is that I developed this rare reaction to treatment
    called differentiation syndrome, and that's shitty, they are still
    figuring it out..if it isn't the disease, it's the cure..

    I'm still taking Zoladex, but they stopped Tamoxifen, they are afraid of additional side effects while I'm taking other chemo. I'm a little scared about that, because Tamoxifen is protecting me from breast cancer..

    Still, keeping it positive. 

    I feel in my gut I'm going to make it.

    Still mad with those stupid doctors that delayed the diagnostic, they sent me home to die. I'm so so so glad I didn't listen to them and went to get additional blood exams and answers. That gave me a chance, a chance of living, and I want so much to live!

    Kisses.

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  • Rdrunner
    Rdrunner Member Posts: 309
    edited April 2014

    So glad you have checked in with us.. i have been thinking about you. So great to hear you are responding to treatment. Stay strong girl you can do this!

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  • beau
    beau Member Posts: 374
    edited April 2014

    Hi Atenae,

    So glad you are on the other side of the first chemo! I am just stunned by what you are going through but feel that you are going to make it too. You fought to get the right diagnosis and now you are through the first hurdle. I hope that next chemo goes more smoothly. Please come here to pass the time when you feel up to it. 

    Big cyber hug ((())). I will be thinking of you often. 

    Best

    Beau

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  • coraleliz
    coraleliz Member Posts: 1,523
    edited April 2014

    Keeping you in my thoughts. Please keep us posted

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  • atanea
    atanea Member Posts: 58
    edited May 2014

    Hi everyone,

    Finished the second chemo cycle. It was sooo much easier than the first one.

    I'm now at home, recovering, before the third cycle of chemo (a heavy one). Today I walked my 4 miles again (I used to walk 4 miles every single day, before all this), it felt so good :)

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  • Rdrunner
    Rdrunner Member Posts: 309
    edited May 2014

    So glad you are home and doing better. Good for you walking 4 miles..before you know you will be back to the way you were before all of this. I have thought about you and wondered how you are doing so thanks for checking in. TAke CARe

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