[dianaiad]

Neupogen and bone pain (SCT prep)

by dianaiad on Sat Sep 21, 2013 7:16 am

OK ...

The docs are so blithe when they talk about bone pain as a side effect of the Neupogen [filgrastim] injections! I suppose it's a good news / bad news sort of thing, rather like going into labor; the good news is that the Neupogen is working, the bad news is that it hurts. A lot. Those who have dealt with this know just how much.

So, since I rather like the fact that it's working, and so will stick with the shots, how do I deal with the pain? Tylenol [acetaminophen, paracetamol] doesn't touch it, and neither does Percocet [oxycodene and acetaminophen]. (Opiates don't work with me anyway.)

So ... any coping hints out there? I go in for the first day of harvest Monday. In the meantime, there's this weekend. Help?

[LibbyC]

Re: Neupogen and bone pain (SCT prep)

by LibbyC on Sat Sep 21, 2013 10:42 am

Hi Dianaiad,

Can you knock yourself out? Sorry it's not a good answer, but I know what it's like. Man, I was taking pills every 3 1/2 hours and they would work a little bit (Endone [oxycodone] was no good). I had to get the kids or David to get the pills coz walking was unbearable.

The good news is; you are probably making a lot of cells, its going to be over soon.

Hope your harvest goes well,
Libby

[morrow1022]

Re: Neupogen and bone pain (SCT prep)

by morrow1022 on Sat Sep 21, 2013 11:19 am

Hi,

Went thru 14 Neupogen shots during my harvesting. Thankfully had no pain. The only pain or dis­comfort I had was giving them to myself. Maybe because I was all ready pain free from the radiation and Revlimid / dex . Took 3 days to get enough cells for 3 transplants, if ever needed. Doctor (oncologist) feels we can keep numbers down with meds. Of course I think the transplant specialist would do it tomorrow if he could.

Husband and I have decided that the oncologist is running the show, so we will just wait.

[dianaiad]

Re: Neupogen and bone pain (SCT prep)

by dianaiad on Sat Sep 21, 2013 12:14 pm

LibbyC wrote:

Can you knock yourself out? Sorry it's not a good answer, but I know what it's like. Man, I was taking pills every 3 1/2 hours and they would work a little bit (Endone [oxycodone] was no good). I had to get the kids or David to get the pills coz walking was unbearable.

The good news is; you are probably making a lot of cells, its going to be over soon.

Yeah, I know that this pain is actually good news. Really, I do. But I got up this morning, took a shower, flushed the Hickman, gave myself a shot ... and it wiped me right out. The only thing that works on me right now are my fingers (hence the typing).

Going back to bed. As my daughter said, many years ago, "I'm not having very fun."

Thank you for the encouragement, though, and I mean that!

[darnold]

Re: Neupogen and bone pain (SCT prep)

by darnold on Sun Sep 22, 2013 11:50 am

Hi Diana. Hang in there. The neupogen is a short term step in the process, and you are almost finished. I didn't get bone pain, so I don't have real world advice. Maybe a soothing bath will help a bit?

Dana

[Dr. Jason Valent]

Re: Neupogen and bone pain (SCT prep)

by Dr. Jason Valent on Sun Sep 22, 2013 2:49 pm

YOU MUST ASK YOUR DOCTOR!!! with multiple exclamation points. But an anti-inflammatory drug can help. These drugs can hurt your kidneys though. You have to have good kidney function to be able to use them. Ibuprofen or naproxen is what I have used. I was enrolled in a trial in which my stem cells were harvested and received Neupogen as priming. It hurts very bad!.

[lys2012]

Re: Neupogen and bone pain (SCT prep)

by lys2012 on Mon Sep 23, 2013 10:44 am

At first I felt like I had the flu, achey all over, could not get comfortable. But it kept progressing where it hurt to do anything, walk, sit, lie down.

I was desperate, so I ended up taking oxycodone that I had left over from a bone fusion surgery in my foot. Big pills! I don't really take painkillers because they upset my stomach, but when I was taking the Nupegon for harvesting, I took oxycodone, Advil [ibuprofen], Ativan [lorazepam], and Gravol [Dramamine, dimenhydrinate] (told my doctor and she said next time they will give me some­thing ahead of time to have on hand, and that narcotic pain pills are not the best for that kind of pain).

Also a heating pad helped. My feet and ankles and toes were in so much pain, I remember them commenting that was weird since there is no bone marrow there.

By the day of my harvest, I was in a lot of pain and could barely get into the Lazy Boy chair to get set up for my harvest. Of course, everyone tells you that is a good sign, but it was hard to deal with.

[Christa's Mom]

Re: Neupogen and bone pain (SCT prep)

by Christa's Mom on Mon Sep 23, 2013 12:28 pm

EJ has wonderful success taking Claritin [loratidine] to control the pain. He took it a day before he started the Neupogen shots, until a day after his cells were harvested. This is one of those old wives remedies, but there's a lot of anecdotal evidence it works.

Lyn

[Joy]

Re: Neupogen and bone pain (SCT prep)

by Joy on Mon Sep 23, 2013 7:55 pm

Hi Christa's Mom,

How many days did it take to harvest? I heard a lot about Claritin, as you mentioned, but so far most of the anecdotes I've encountered were from people who were not prepping for harvest, but were taking it for other reasons. I do find your suggestion very encouraging, though. I'm on day 2 of Neupogen and am very afraid of the pain that's probably coming my way.

Thanks!

[NStewart]

Re: Neupogen and bone pain (SCT prep)

by NStewart on Mon Sep 23, 2013 9:04 pm

Joy-

I only had pain for 2 days and it felt like I had the flu. Acetaminophen [Tylenol, paracetamol] did the trick for me. Also, knowing that it would only be over in a couple of days helped me tolerate the dis­comfort. My harvest was done in one day (4 hours of filtering my blood).

I hope all goes well for you.
Nancy in Phila