Neulasta and Bone Pain

The "good news" is that many of the symptoms experienced during treatment fall into a pattern.  For example, during my T/C rounds I had the same symptoms occur between days 4 and 9.  Through each of my 6 treatments I was able to predict their onset and ward off/treat the severity.  If you found that the pain from the N hit on a certain day number of treatment, anticipate this will happen the next time, and continue the Claritin and pain med until then.  Be sure to write down any symptoms and the days on which they occur.

while no one wants to experience side effects, knowing when they may hit helps you to plan your activity and manage your SE.  Keep positive!  Chemo is doable, and believe it or not, the time will pass quickly and you will be finished.

LRM216 said:

I can relate....
I had 4 Neulasta shots, after each of my 4 DD AC's and just about died from the pain. Not only did it begin about 36 hrs after the shot, and last 3 days or so, it would then dissipate and hit real hard again about day 8 - I swore I could feel the bone marrow churning in my bones. Sometimes the pain was so unbearable I could not walk like a normal human. I had my first Taxol a few weeks ago, and got neuropathy pretty bad on first one, so I have been switched to Taxotere - had that last Thursday and pain from that in intolerable as well. Onc finally gave me oxycontin, which I took 1/2 a pill every 5 hrs religiously throughout weekend and was pretty good. With taxotere (not Taxol) you must also get the Neulasta shot. I didn't know this and cried as I went back the next day for it. Long story short, pain was unbearable, and tonight I am once again dying from the lower back spasms and hip and groin pain. Stopped the oxycontin as I returned to work, so was in pain pretty bad when I took 1/2 pill earlier tonight - so far, nothing. Why or why do some of us skate through the Neulasta, some have bearable pain and discomfort and some of us are totally debilitated. I see the onc in the a.m. for 7 day labs, and I swear, I am ready to quit the last two treatments - this is ungodly pain. Good luck to you.

Linda

I was the same way.  The pain hit me 8 days after my first shot of Neulasta and never went away.  It increasingly got worse with every chemo until I couldn't walk at all after my 3rd Neulasta shot.  They had to delay my last chemo for one month so that I would improve enough to take my last round of chemo and my last Neulasta shot.  I am now 8 months out from my last chemo and I'm still having unbelievable leg pain and can not sleep one single night through without being jolted with pain.  I talked to the oncologist today at my 4 month check up and told him that I'm still in pain, and he acts like I'm the only patient he has ever had who has had this problem.  After my 3rd chemo round and I couldn't walk I called him on the phone and he acted like he didn't believe me, like I was just trying to corner him for pain med's.  It was only after I had a friend take me to his office and he saw me, that he finally believed me that I was in pain.  Today he just told me that I would get better and not to worry about it.  WOW.  He has a large practice.  How could I be the only breast cancer patient who has had problems with Neulasta.

LRM216 said:

I can relate....
I had 4 Neulasta shots, after each of my 4 DD AC's and just about died from the pain. Not only did it begin about 36 hrs after the shot, and last 3 days or so, it would then dissipate and hit real hard again about day 8 - I swore I could feel the bone marrow churning in my bones. Sometimes the pain was so unbearable I could not walk like a normal human. I had my first Taxol a few weeks ago, and got neuropathy pretty bad on first one, so I have been switched to Taxotere - had that last Thursday and pain from that in intolerable as well. Onc finally gave me oxycontin, which I took 1/2 a pill every 5 hrs religiously throughout weekend and was pretty good. With taxotere (not Taxol) you must also get the Neulasta shot. I didn't know this and cried as I went back the next day for it. Long story short, pain was unbearable, and tonight I am once again dying from the lower back spasms and hip and groin pain. Stopped the oxycontin as I returned to work, so was in pain pretty bad when I took 1/2 pill earlier tonight - so far, nothing. Why or why do some of us skate through the Neulasta, some have bearable pain and discomfort and some of us are totally debilitated. I see the onc in the a.m. for 7 day labs, and I swear, I am ready to quit the last two treatments - this is ungodly pain. Good luck to you.

Linda

started chemo last Wed and was feeling ok until I had the shot on Friday then Saturday I woke up feeling pain in every bone in my body. The headache is the worst and the stomach pain feels like contraction. I called the nurse this morning and she told me to take Tylenol with the Ibuprphen and Claritin and that got me feeling a little less but the headache comes back and the stomach pain as well. I used to think that I can tolerate pain but this is ridiculous.  just sign up for this site so I could see what else could I do and I feel so bad for so many of us feeling the same. I’ll pray for all of us cancer patients, survivors and for those who lost this figh. 

My bone & joint pain was almost immediately within next 24 hours lasting usually 3-4 days. First was worst, but my first chemo dosage was "frontloaded" or larger dose than any other after it. I felt like my bones were beaten with a bat. Mostly long bones...let's & arms.

I had my first round of ac on 1/17 followed by my first neulasta shot. I thought I got lucky with taking the claritin to help alleviate the pain. Almost 7 days later I got my period and I thought the pain I was having was because of that. Fast forward to my second treatment and second shot. 7 days later again hit with excruciating leg pain and pain in my arms. Holy hell I cant believe the pain. I thought I was gonna be lucky and not have the pain but nope!! Its horrible. Sooooooooo horrible!! No pain meds help. No heating pad helps either. Its like u gotta suffer with the pain. Cancer sucks butt big time!!

Not that I would really consider any SE a "good thing," but I feel you can now be able to anticipate what will come on day 7.  I remember that my days 4 through 9 were terrible throughout my 6 rounds.   Documenting SE allowed me to plan well throughout my treatments.  I would make sure days 3 and 4 I treated myself well - went shopping, visited and lunched with a friend, etc.  Then I was ready to be home days 4 - 9.  Day 11 or 12 I always had another outing planned.  It was something so small, yet I felt in control and was determined not to allow the SE ruin EVERY day during my chemo!  It will be over faster than you know, and you will be proud that you did it on your terms.

best wishes!

jlzinnia said:

Pain and Neulasta

It has been almost 5 years since I was in treatment. I wonder if the Neulasta shoes were worse than the chemo!  My cell counts dropped like a rock after each treatment so I had a shot 24 hour after chemo . There are lots of different things you can do to help relieve the pain but I ended up using oxycodone..  If your pain is really bad don't be afraid to ask your oncologist for something stronger.  Being in that much pain inhibits you ability to recover from your treatment and be ready for the next one. Good luck.

get on top the pain with oxy when you have to.  it is ever so important to take care of yourself.  these treatments can be gruell.  With all we deal with if we can eliviate one thing it helps to deal with alll the others.  it is not pernanent so take it if you must.  it will get better.

hugs and prayers going up

Annie

Hi all.  New to this site, new to Cancer. I am 63 and was diagnosed in early Feb that I had endomatrial CA and was referred to an awesome oncologist. He repeated the D/C 23rd Feb as the primary site etc was not known and it turned out I had Uterine, cervical, vaginal, fallopian tubes and ovarian malignicies. He put me on pain medicine right away as the pain was 10/10.  He scheduled my surgery as soon as I could get medical clearance and the Covid-19 hit so my surgery had to be approved and on April 2nd I had a total radical hyst with vaginal ressection and pelvic node dissection. The results were Uterine as primary site and had invaded all the other surrounding sites as well as through to the pelvic wall and large bowel myometrium.  I had my mediport inserted on May 11 and had my first round of Paclitaxel and Carboplatin along with the Neulasta autoinjector on May 18th. That is how I found this site was looking up the pain from Neulasta.  I don't mean to ramble, just can't seem to find results about all the effects of that drug.  I started having severe bone pain about 36 hours later and it felt like every bone in my body was in hyperdrive. I couldn't walk, it hurt to move at all and all I could do was cry.  I took the clariten as instructed, my Dr has me on the highest dose of Percocet available as well as motrin or tylenol and nothing helped. I also have alot of autoimmune processes (Sjorgens disease with overlapping Lupus vs Scleroderma, osteo arthritis and markers are borderline for RA) I am now having severe left lower back pain and LLQ and LUQ abd pain. My fingertips are numb to the point it hurts to type etc. I talked to my oncology nurse and she said give it a few more days but this is bad. I have a decent pain tolerance level, I have been an ER RN for over 30 years and this has floored me. Im just lost and I am the first in my family to have cancer. If this isnt the right site I apologize and wish all on here the very best.

I just received the neulasta shot May 13. I began having excruciating shocking pains in my spine going down my leg. I was in so much pain I thought I was gonna die. I was on steroids didn’t seem to ease it off but they told me to come off the steroids and try Oxycodon every four hours as needed but I’m able to stretch it to six or eight. It’s like this little twinge in my spine that starts hurting and then gets really intense. I can’t believe people have to suffer through this. It was excruciating the worst pain of my life and I’m tough. I’ve had a double mastectomy Oopharectomy, Appendectomy two C-sections, with not much trouble. My doctor said that this could last 10 or more days. She promised to me that I’ll never have to have a neulasta shot again but I may have to push off my chemo treatments by a week to see if my blood counts look better. God I wish there was a test to know if you would have a reaction to it before taking it. I hope nobody else Hass to ever go through that. It’s nice to know other people out there are experiencing the same things and know how awful it was. You can’t even describe it. Besides that having diarrhea all night and having to jump out of bed with the back pain . I was just ready to throw the towel in.