Neulasta and Bone Pain

Teach76

Tracking symptoms

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.

 

Kellbell511

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

You have described my

You have described my reaction to the "shot of death" as I so lovingly call it PERFECTLY.  I also cried the night before going in for my Neulasta injection.  Chemo is a walk in the park compared to Neulasta.  ..and to be told to take Tylenol and Claritin for the pain that I have, is a joke...and insulting.  This is my third injection of Neulasta, and I'm not doing it again unless they give me a PAIN med..   

nette2255

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.

    

caregiver wife

nette2255 said:

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.

    

Claritin - Generic Loratadine

So many nurses were suggesting this for Neulasta pain, that they actually did a study.  They don't know why, but it does work.  Start day of Neulasta treatment and take for one week.

I researched this when my husband was taking Neulasta with his head and neck cancer treatment.  I purchased 100 count at pharmacy for  a few dollars.  Worked very well.

Crystal

(16 years NED - Contralateral mastectomies - invasive lobular and invasive ductal - ER/PR positive 

Salete

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

Pain

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. 

LunaGrace

I had extreme bone pain after

I had extreme bone pain after injection. I couldn't find a non-painful position to lie in bed. It was many years ago, but I think my oncologist either lightened the dosage or switched to a different drug the next time (neupogen?). I really feel for you. 

kbstutts

Neulasta

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.

kbstutts

Neulasta

It got to tolerate it better over time. Doubled up on Clartin day of shot & took 1 day before shot.

CatherineL91

I had my first round of ac on

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!!

Apaugh

prayers going up..

Oh it just hurts my heart to hear your going through the pain of those shots.  ugh, I think I am still traumatized by them.  Yah, it seems like nothing really takes that pain away, you just suffer through it and take what you can and do what you can to ease it up.  I think at one point I was taking 2 or 3 espson salt baths a day but I think it was just being in a hot tub with a cup of tea trying my best to relax was more of what that was about.  yep, hit with a ball bat is a good description and I use to say I felt like little critters were in there knawing at my bones. 

I dont know how you feel about CBD oil or edibels but I was desperate and was given some and it did help some.

Hugs and prayers for better days, they will come.

Annie

Teach76

Anticipating SE

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

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.

Apaugh

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.

agreed

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

Raysbabe

Mini Satan!

I can honestly relate to everyone discussing pain after neulasta! I tried to explain to my husband how it felt..but there are no words. The closest explanation I had would be that someone pulled literally every muscle in my body at the same time. I called that thing mini satan, and honestly it was the worst part of my treatment. I had 6 TAC chemos and 33 radiation treatments. That part of my journey was the most painful. It took my body almost a year to recover from the joint pain. Praise the Lord, I feel so much better now. My treatment ended May 3, 2017, so closing in on a year. I feel blessed. Prayers for anyone of you that have that part of the journey to go through. I would definitely recommend pain medication. I don't like taking medications, but that is one time in my life when I say; Take them, take them every 4 hrs if need be. Take care of yourselves and remember...this too shall pass.

Tam

Nonnie56

New CA diagnosis of Uterine, cervical, vaginal, fallopian tubes

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.

cmb

Nonnie56 said:

New CA diagnosis of Uterine, cervical, vaginal, fallopian tubes

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.

See the Uterine Board

I have uterine cancer and normally post on that board, but I occasionally visit other boards and saw your post here. First of all, I'm very sorry to read about your diagnosis and that you're having such a difficult time with joint pain and other issues from treatment. A cancer diagnosis is always such a shock.

Paclitaxel and Carboplatin are the typical first line chemo treatments for uterine cancer and quite a few women on the uterine board (including me) have written about experiencing bone/joint pain a few days after chemo with these drugs.

I had two phases of chemo: four treatments of Paclitaxel and Carboplatin, followed by four treatments of Ifosfamide and Doxorubicin. I only had the joint/bone pain after the Paclitaxel and Carboplatin. I didn't take Neulasta after those treatments, so my pain was definitely from those chemo treatments. I did take Neulasta after the Ifosfamide and Doxorubicin infusions, but I didn't have any bone/joint pain after those treatments (although other side effects were far worse). So your pain may or may not be related to Neulasta.

However, you can read about what I took and what others women on the Uterine board used for bone/joint pain at https://csn.cancer.org/node/314595.

I'd like to encourage you to post your questions on the Uterine board as there are many women there who would be happy to answer them and share their experiences with you.

Since most women there won't have read your post here, I suggest that you copy the text from this post and either add it as a new topic on the Uterine board at https://csn.cancer.org/forum/189 or as a reply to the topic link above. You gave a lot of information in this post that would be helpful for other members to read and respond to.

I'm also concerned that the numbness in your finger tips may be the start of neuropathy from either the Paclitaxel or Carboplatin. While I didn't have this effect from those drugs, I did develop it in my toes and balls of my feet at the very end of my treatment with the Ifosfamide and Doxorubicin.

If you search for the word "neuropathy" in the title search box on the Uterine board you'll find quite a few posts on this subject. Some women have "iced" their hands and feet while receiving chemo, while others have had to switch to alternate chemos. I was told by my oncology nurse that neuropathy can disappear within the first year after treatment for some people, but unfortunately mine did not. However, it has not gotten any worse.

pattyg22

https://csn.cancer.org/discussion/comment/1589994#Comment_1589994

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.