Neulasta pain...help

[MimiY]

Need advice and experienced opinion. My husband was dx in December. He has had two Furmagon injections and has now begun Chemo (Taxotere). First infusion was Monday with Neulasta auto injection on Tuesday. First few days were fine. Severe pain in legs, hips, feet began day 6. Doctor says inflammation from Neulasta. Per doctor he is taking ibuprofen and claritin. No relief. We are now at day 8 with awful pain. My questions: Will this pain improve during the 3 week cycle or will it remain this bad throughout chemo? Should he be taking more for pain or is there a reason not to? Doctor has offered nothing after 2 calls. If the pain is temporary, he will stand it. If not, he will not be able to continue. Thoughts?

[dlestercarlson]

I had severe pain the first time I got the Neulasta auto injection. Then after this experience, I now plan ahead using Tylenol and Benedrill before the pain starts. This has worked pretty good to eliminate the pain.

[Hidden]

Apparently Neulasta does not cause severe pain in the legs. Please look at this link for side effects of Neulasta:

rxlist.com/neulasta-drug.ht...

I wonder if the pain is not been caused by the bone metastasis compressing the roots of the nerves innervating the legs.

If that were the case he needs some local radiation to the bones which are compressing the nerves and/or Radium 233 (systemic treatment). If this were the case, these treatments have the potential of improving the pain.

Best wishes

Raul

[Hidden]

Whoa.. I’m sorry, I haven’t done these treatments. Hope it gets better soon .. you will recieve a lot of advice from those of us in the know.. does not sound pleasant. My prayers for you both.

[vandy69]

Good Morning MimiY,

I completed 6 cycles of Docetaxel/Carboplatin chemo on 1/9 and each time left with On Body Injector of Neulasta. My Med Onc had me start Claritin the day before chemo and continue for 6 days. It worked for me with no bone pain.

I would press your husband's Med Onc immediately for answers. This should not be happening. When was your husband's last bone scan? He may need another.

Best wishes. Never Give In.

Mark, Atlanta

[MimiY in reply to vandy69]

Last scan was 1 month ago. He also started claritin the day before treatment and has continued daily in hopes of relief. Have 3rd call in to Onc this morning.

[charmander]

My bone pain from Neulasta was more flue like symptoms. With any pain once it gets ahead of you it is harder to get control. As the other posts have said start before with Ibuprofin and claritan. Also your medical oncologist should be more understanding and could prescribe something for the pain. Raul80 is also correct as severe leg pain is not a listed side effect. Everyone reacts differently but his question about a bone scan seems right on and something other than Neulasta could be the culprit for the pain.

Stay on your doc about this, get what you need from him/her. Do not accept disinterest!! Good luck and keep us posted.

Charlie

[MimiY]

We have read "Pain in extremities" on the link provided by Raul80. Dr says "inflammation" from shot. We were expecting flu like symptoms, not this. He took Claritin day before and has continued everyday. Placed another call this morning.

[AlanMeyer]

I've never had chemotherapy or Neulasta and my suggestions may or may not be useful, but for whatever they're worth, here are some ideas:

Your husband might try elevating his legs and feet, for example by lying on a bed or sofa with a bunch of pillows under his legs. If that helps, it might at least give some temporary relief.

For ibuprofen, I've found that 600 mg (3 pills) provide significantly more pain relief than 400 mg. It's not something that you want to do for a long period but, again, it might give some temporary relief. I once had a doctor prescribe 800 mg to me, three times per day. I couldn't handle that, it upset my stomach.

A third possibility for temporary relief is to try ice or heat, or alternating ice and heat. I'm thinking that ice will work better than heat but you never know. Be careful not to use too much ice or heat and stop immediately if the pain increases!

Checking the Neulasta company website ( neulasta.com ) I found under the "Patient Information" link the following statement:

"The most common side effect of Neulasta is pain in the bones and in your arms and legs."

They don't offer any advice for how to deal with it other than to call your doctor. That's pretty common for drug companies. They don't want to antagonize doctors by telling their patients to do something that the doctor didn't recommend. However you can try calling them and asking if they have any recommendations. It's also pretty common for doctors to not respond when they don't know what to do - which this doctor apparently doesn't. Maybe no one does. However the fact that this is a known common side effect and that it hasn't resulted in the drug being taken off the market or in any emergency warnings put in the label literature, is a good sign. It probably means it is a temporary problem that will go away by itself. If that's so, getting temporary relief can make a big difference and, hopefully, the problem will resolve in a few days.

Maybe someone can advise you on whether to quit the Neulasta for the future, or whether it's possible to get a much reduced dose.

Best of luck.

Alan

[MimiY in reply to AlanMeyer]

Thank you for your thoughtful response. Yes, I also read the Neulasta warning of arm and leg pain. It is comforting to remember it hasn't been removed from the market. We are crossing our fingers that it is a temporary effect.

[BillNIttles]

I did Neulasta with my first 3 if 9 taxotere cycles then stopped. I work with kids, so I didn't want to take that chance. It was AWFUL, even after cutting the dose way down. For a week, I had constant, moving pain everywhere, including my legs. I did not think it was worth it. Cycles were better after I stopped.

[MimiY]

Did the pain last the entire cycle or just that week? As a retired elementary teacher I can't imagine working with that pain. So sorry.

[MimiY]

After third call to Onc we now have an Rx for hydrocodone. Helped SO much. He is up and about, eating, and doing dishes😊. Now, if this is temporary, we can plan and manage. Just hearing from you guys is such a help when things are hard!