CSN Login
Members Online: 4

You are here

Anybody else refused Neulasta?

EZLiving66's picture
EZLiving66
Posts: 1415
Joined: Oct 2015

I have been miserable since last Thursday with awful joint pain in my pelvis, hips, ribs, sternum and back since I had my Neulasta shot on Wednesday.  It almost feels like they're vibrating in pain.  My WBC was 3.6 ten days after my first chemo but had gone to 8.3 right before my second chemo (normal range).  I ate WBC building food and it worked.  If I didn't know my heart was fine I would be in the emergency room right now.  I have a heating pad on my chest and it is helping a bit but it still hurts like hell!  I have taken every pain med, esphogeal erosion pills, etc. they have given me and I'm still vibrating in pain.  I have never had anything like this before.

If I'm not better tomorrow I will call my oncologist's office but I'm thinking Neulasta may not be for me.   My poor husband is trying to come up with something to make me feel better.  This guy is a saint!!

Take care,

Eldri

Sandy3185's picture
Sandy3185
Posts: 228
Joined: Oct 2013

I never had the Neulasta shot but it sure sounds like it having a terrible effect on you! Do you have any oxycodone? I know that helped me sleep when I was in so much pain and discomfort during chemo.( between bone and joint pain, restless leg syndrome that just would not stop, neuropathy, and general malaise, I was pretty miserable throughout chemo).

I hope you find some relief soon,  Sandy

Cucu me
Posts: 214
Joined: Apr 2015

get better Eldri. The pain will go away, but takes time.

I never got Neulasta, I was scared enough from the bone pain.

Sandy, I have restless leg syndrom for years, since I was teenager. No cure for that,right?

For first time I see someone else here have it.

Sandy3185's picture
Sandy3185
Posts: 228
Joined: Oct 2013

Sorry to say, there is no cure I know of. I take Mirapex once or twice a day and that normally keeps it at bay. During chemo even the Mirapex didn't always help. It seemed like it combined with the neuropathy to make me miserable! Thankfully the neuropathy is just about gone and Mirapex is in control!  Sandy

Cucu me
Posts: 214
Joined: Apr 2015

Is very "tolerant". During my bad chemo days was giving me brake.

Now no mercy, every night when I try to sleep.Omg.

As you say Neuropathy and this and insomnia and dry skin,

it takes me 2-3 hours until I fall asleep.

Lou Ann M's picture
Lou Ann M
Posts: 996
Joined: Feb 2015

I am so sorry that you are in so much pain.  I wish I had so magic formula that would give you some relief.  I guess if I did I would use it myself.  I am sure my pain is from the Taxol.  When I had Nuelasta and no Taxol. I didn't have any bone pain, but every time I have the Taxol I have severe bone pain.. Used to be mostly in my hips and pelvis .  Now it has moved up to my shoulders, sternum and neck.  I am sitting here right now with a heat pack on my neck.  My GP has told me several times that the pain comes because the chemo has attacked my bone marrow  and the marrow is working overtime to replete its self.  It almost makes sense. 

Your comments have given me a little fear relief.  Even though I know my heart is Ok.  I was beginning to worry if I was having a heart attack the pain in my sternum was so bad.

hydrocone does give me some relief, but I just hate taking it.  Hugs and prayers, Lou Ann

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2752
Joined: Mar 2013

Eldri, Neulasta wasn't offered (thankfully) and I didn't get it.  My last chemo was delayed one week because my numbers weren't high enough, but we figured that might be an issue becasuse of the combo chemo and radiation to the pelvis and all the bone marrow in the hip bones.  

I was told "push the protein" and had to really force myself to eat protein every day.  Meat, cheese, yogurt, nuts, it was all about protein.  

For me, treatment was possible without this shot.  That's just me.  

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1659
Joined: Jun 2015

I refused Neulasta.  I had it with chemo #3 and experienced exactly what you are going through. With chemo #4 I refused it and still had bone pain but it wasn't as bad as it was with the Neulasta. Still hurt like crazy but I didn't get the muscle pain and the bone pain was less intense.  My doctor continues to push me to take it.  My next chemo is on Monday.  I told them I would only take it IF my blood was so low that I would have to delay my chemo treatment.  I fully expect to have a bit of a fight on my hands when I go in.

I was told that Neulasta pushes the bones to make more marrow. So, our bodies already push to rebuild and it makes sense to me that the extra push has to create some level of pain.

So sorry you are going through this. It looks like you are going to be one of us unlucky ones that hurt with chemo. Dang it!  I promise it will pass but it does take several days.

Love and Hugs,

Cindi

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2752
Joined: Mar 2013

Every drug has side effects.  I had a lump removed from my left breast in 2009.  After it was tested it came back as BENIGN and the (crazy) surgeon wanted me to take tamoxifin.  WTH?!  I said "no".  In fact, uterine cancer is a side effect of tamoxifin and, as it turns out, I didn't need any help getting that!

 

AWK
Posts: 364
Joined: Mar 2013

I get the Neulasta shot and start taking claritan daily the day of the shot and for five days.  I haven't had any issues related to it except that last week all of my counts dropped including white blood cells.  And the difference in low platelets and low hemoglobin plus low WBC was that I was a little disoriented and  confused and I did pick up a virus  a couple of days.  I ended up getting 2 liters of blood transfused and feel much better now.  

All of this amazes me and I am grateful that my doctors monitor me so closely.  

Hugs to all - Anne

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2752
Joined: Mar 2013

Anne, glad you are feeling better.  I do agree with you on how this is all so amazing.

Kaleena's picture
Kaleena
Posts: 1981
Joined: Nov 2009

Eldri:

I hope you are feeling better today.   Thinking of you.

Kathy

pinky104
Posts: 574
Joined: Feb 2013

I refused the Neulasta.  My little brother had just died of a heart attack a week before it was offered to me, and since it carried a risk of heart attacks. that was all the reason I needed to refuse it.  I also had a co-worker who had taken it for her kidney failure, and she claimed it had caused tumors in her. 

I guess I was lucky that I didn't get any bone pain from the Taxol.  I did get chemo-induced anemia and non-stop UTI's though.  There are an awful lot of women who've had problems with the Neulasta shot.  I'm glad I refused it.

namedropper
Posts: 102
Joined: Dec 2014

I had the Neulasta shot but the bone pain was to bad for me. I also have RA  The Dr. gave me Neupogen but I had to go more often to get that shot.  It woked better for me.

EZLiving66's picture
EZLiving66
Posts: 1415
Joined: Oct 2015

I'm taking Clariten for my runny nose so was taking it when I had the Neulasta.  I also was taking two Oxycodens at a clip and still I was vibrating in pain.  I have a really high pain tolerence and usually half an oxycoden is enough to stop it.  And I developed one other symptom - I could see correctly.  I couldn't read or watch tv because bright lights kept flashing on and off (no headache - I never get headaches).  The lights were even colored turquoise and worse in the right eye.  My husband turned the lights in our family room down and it helped although it took about an hour for them to go away.

I am feeling better today, just extremely tired.  Our youngest daughter is home from college with her boyfriend and they are going to make Thanksgiving dinner today so we can have it tonight.  Tomorrow morning they leave for her boyfriend's grandparents' house for another dinner.  I have the turkeys all done, just need to assemble my "Thanksgiving on a Bun" or you can have it on mashed potatoes too.  It has pork sausage and stuffing and gravy and, of course, turkey.  Then, I'm making baked beans and picking up a Honey-Baked ham to the dinner we're invited to tomorrow.  

Take care,

Eldri

Kaleena's picture
Kaleena
Posts: 1981
Joined: Nov 2009

Dear Eldri:

When I close my eyes or sometimes even if I just bend over, I get these "halo"s in my eyes.   Its like you can see the outside of your iris.   I also get the not the headache I call it head pressure.   When the pressure is a lot sometimes the halos are worse.    I did also get headaches which started last year.    I went to every doctor I could (physical and eye) and nothing was determined except that maybe I was having migranes.   After I needed a stent for my left ureter because it was blocked, most of the symptoms went away.   Although recently I have been getting the head pressure and the eye halos again.

With the head pressure, if I went and layed down on my stomach and looked up, I would sometimes get a bad head pressure which I could feel all the way down through my left leg.   All I needed to do was turn over and wait a minute and then turn back and it was ok.

I do wear corrective glasses and the halo thingy is sort of a condition of my eye sight or so they say.   

With regard to the tiredness, exactly two days after I would receive chemo, I would probably make it to lunch time and then I would have to go to bed for the rest of the day.   It was like turning a light switch off and on.   You could be feeling fine and great and then BAM!  it would hit you.

Wishing you and yours a Happy Thanksgiving.

Kathy

Lou Ann M's picture
Lou Ann M
Posts: 996
Joined: Feb 2015

I am sad that you have felt so bad.  I would talk to your doctor about your side effects because they do seem to be extreme. I  think it is so odd that everyone's side effects and reactions to even the same treatments can be so very different.  No wonder we are all a statistic on one.  My head gets some kind of super tired feeling, but is not a headache.  My eyes act up get kind of watery then dry and my vision gets blurry.  Sometimes when I close my eyes I see little specks of bright white light almost like stars.  Just wierd!

I am glad you are feeling better and it sounds like you will have a good Thanksgiving.  May you have many many more and may they all be with NED.

Hugs and Prayers, Lou Ann

Subscribe to Comments for "Anybody else refused Neulasta?"