[Eric Hofacket]

Re: Neupogen and bone pain (SCT prep)

by Eric Hofacket on Tue Sep 24, 2013 12:47 am

Dr. Jason Valent wrote:

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!.

Dianiaiad,

I would strongly follow Dr. Jason's advice. I had no bone pain at all, then within a few hours one night while staying at City of Hope apartments waiting to get my Hickman put in the next morning, I got bone pain so bad I was thinking I could not live with it for more than a few days. I took over my prescribed dose of Dilaudid [hydromorphone], morphine, and oxycodone, and it did no good. Not a smart thing to do, either, as it can kill you. One of my coworker's husband overdosed on oxy­co­done by mistake and died in his sleep.

I took ibuprofen and the pain went away almost completely in about a hour. An anti-inflammatory is what was key to relieving my pain, not opiates.

[Christa's Mom]

Re: Neupogen and bone pain (SCT prep)

by Christa's Mom on Tue Sep 24, 2013 10:52 am

Hi Joy,

It only took EJ one day to harvest enough cells, but it was a long day. Eight hours if I remember correctly.

I agree with Eric and Dr. Valent, always talk to your doctor if you are adding a drug to your routine, even if it's an over the counter drug!

To share the rest of the story, as EJ was going thru this process, we shared with the nurse practitioner what we had read about Claritin. At the time, we were in the infusion area waiting for a blood draw. The NP had not heard about Claritin and was skeptical. However, the nurses who were doing the blood draws had, and were nodding their heads in agreement! The NP was very surprised, but gave us the go ahead to try it. The next time we saw the NP she said she had done some research on the topic, and was going to suggest other patients try this!

Lyn

[Nancy Shamanna]

Re: Neupogen and bone pain (SCT prep)

by Nancy Shamanna on Tue Sep 24, 2013 11:23 am

There were quite a few days leading up to the stem cell collection when I had to take Neupogen by subQ injection. My blood counts were done frequently in order to determine when the stem cells had left my bone marrow and were ready to be collected by apheresis. The last two - three days were quite painful, and I also had to resort to pain meds, Tylenol with codeine.

I did underestimate how uncomfortable I would be, and had planned to go my choir's xmas concert at that time. I remember being very disappointed to have to miss it, but it just wasn't do-able. My stem cell harvest went well, though, and only took about 6 hours.

[dianaiad]

Re: Neupogen and bone pain (SCT prep)

by dianaiad on Thu Sep 26, 2013 9:09 pm

Update:

No More Neupogen!!!

I produced 5.5 mil. stem cells on Monday, and 3.something on Tuesday (enough to make the 8 mil. they want for two 'rescues'), and I'm done!

The bone pain isn't, though. A lot less, but still ... I guess these things have to wind down. Weird experience, that harvest. The nurses got concerned about my face tingling (my lower lip felt like two hours out of Novocaine at the dentist for an hour after I was done), and they handed me four humongous potassium pills, but they handled it, said I did great, and now, well, here we go. Next Friday the City of Hope is getting a new resident for a little bit.

I guess that describes the whole experience in a nutshell for me. Weird. Strange. Surreal.

Now I have to do something cool for my son's birthday ... but Dr. Cai told me to 'stay away from infection,' so I guess Disneyland is out. (sigh)

I don't suppose I can go swimming at the beach, either. Blech. Ah, well, he's 34. He'll get over the disappointment.

[Joy]

Re: Neupogen and bone pain (SCT prep)

by Joy on Fri Sep 27, 2013 7:18 am

Hi Diana,

Thanks for the info. I was wondering about pain, post harvest. Good to know what to expect. I've started with the pain now on day 5. My medical people tell me Tylenol, Percocet (which they informed me is oxycodone with Tylenol), or just oxycodone. I took a Claritin and extra strength Tylenol last night. I'm pretty concerned because I still have 5 shots to go and, at times, it's pretty darn uncomfortable!

Glad to hear you're through with this step! Best of luck!

Joy

[absunshine99]

Re: Neupogen and bone pain (SCT prep)

by absunshine99 on Fri Sep 27, 2013 3:03 pm

Joy,

I went though this process last year and, like Eric H., I thought I was going to get away without any back pain other than what I had grown used to. One evening, the pain came through and it was much worse than flu-type pain. It is hard to describe, but was unlike anything I had felt before. My pain only lasted the one night though, and my body adjusted with only a little extra in pain meds.

The point I want to make is that everyone experiences something different and, in many cases, patients do not go through such pain. I hope this is the case for you, but do not despair if you do feel more pain. You won't have to put up with it for too long, and the doctors will advise what extra meds you can take to help. Don't be afraid to ask for help in any case.

I wish you well with your harvesting and future treatment.
Alvin

[Joy]

Re: Neupogen and bone pain (SCT prep)

by Joy on Sat Sep 28, 2013 10:44 am

Diana,

I hope your bone pain is over now. You are about a week ahead of me in this process and I wish you the best.

Alvin,

As you mentioned, so far I've only had one bad day with pain. I'm now on day 7 of the Neupogen and the bone pain was only about a 16 hour occurrence on day 5. My doctor advised me to back off on the Tylenol long enough to see if it was masking any fevers. So far, I haven't needed to go back on it. I don't know if my body has adjusted, or if the Claritin has helped, or if I'm in for more pain.

I'll be glad when this is all behind me. I do have a small rash on my hand. Don't know if it's related. Hickman line will be placed Monday and harvest starts on Tuesday. Oh the fun!

It's really helpful to have this forum and see other people's experiences.

[Joe]

Re: Neupogen and bone pain (SCT prep)

by Joe on Tue Jan 21, 2014 9:50 pm

It's 8:49 p.m., snow coming down, and I am in such pain from the Neupogen shot I had 3 days ago. Was to get 5 shots. I had to stop after the second. I had to stop getting Neulasta because of pain, this is just as bad.

Also, what's so bad is when they list this, they do not go into the pain well and what to expect, so you get nervous when all these things start to happen to you.

I don't like these shots.

joe

[Dr. Peter Voorhees]

Re: Neupogen and bone pain (SCT prep)

by Dr. Peter Voorhees on Wed Jan 22, 2014 7:53 am

Anecdotally, we have had success with loratidine (Claritin) and it is a very safe drug to take for this indication. NSAIDs (e.g. ibuprofen) can be helpful, too, but I would avoid them if there is any evidence of kidney problems, high levels of serum free light chains related to the myeloma, or low platelets (e.g. <50). This should definitely be discussed with a physician first.

On behalf of myeloma physicians everywhere, deepest apologies for underestimating Neupogen-related bone pain. It is very real, but, thankfully, of limited duration.

Hang in there, everyone!

Pete V.

[Sarah151]

Re: Neupogen and bone pain (SCT prep)

by Sarah151 on Mon Mar 31, 2014 3:00 pm

I am in week three of weekly Neupogen shot to up white cells after Rituxan treatment last October to deal with ITP (low blood platelets). The first shot, bones hurt all the next day. Then the pain was gone. Second shot same. Last week, shot on Wednesday, and it is the next Monday now and my bones are still aching and in pain. Haven't taken Tylenol because it makes me sleepy. Did on Thursday and Friday, but not since.

Anyway, does the duration of pain increase with more treatments? I have one more shot next week. As my white cells have come up from the treatment, my platelets are progressively dropping. 139 1st week, 126 second, last Wednesday 97,000. I am expecting them to be near 50,000 next Wednesday when I go it. If they have dropped again, I will ask him to treat me with prednisone instead of waiting until they are below 50. I mean, why wait? I have less of a climb if I do it now.

Anyway, my bones hurt. I am going to have him schedule the bone marrow biopsy because, at this point, living in fear is worse than the pain I will have from the biopsy. I would rather know this is, or is not, leukemia. If not, fear can go away. If so, we can stop treating me for ITP and start treating me for cancer. =(

Finding it hard not to be very, very depressed. I read somewhere the Rituxan only lasts about 5 months. =( I don't wanna keep doing this, but what choice do I have?