“Knowing a great deal is not the same as being smart; intelligence is not information alone but also judgment, the manner in which information is collected and used.” – Dr. Carl Sagan
Don’t you just LOVE how there are at least two names for every drug you are on! ARGH!
- Neupogen®
- aka Filgrastim
- aka G-CSF
- aka growth factor shots
Ok, so Sarah asked me some questions this morning about this as her hubby is getting ready to get ready to begin the stem cell collection process.
“Are Neupogen® shots painful?”
Filgrastim is a human granulocyte colony-stimulating factor (G-CSF) – Patient Information .pdf
It is used to facilitate a couple of things when being treated for Multiple Myeloma and utilizing Stem Cell Transplant to treat. Your first introduction to it will most likely be in the leading up to collecting your own stem cells. You will receive chemotherapy to attempt to kill and beat down the MM in your bone marrow as much as possible. This will take your immune system down to dangerous levels of non-existence. When that happens Neupogen® is used to bring your stem cells back up to fighting levels by using this growth factor to help to stimulate an accelerated production of your white blood cells first to help you be able to fight modest infections that you might have to contend with. When they are using them to simply bring you up to a higher level of white blood cells it is one shot a day generally. When you are in the collection process it will be two a day, generally. Each facility may be a little different, and I can only address it from what I’ve learned having gone through it with Dave in Little Rock and then what I have heard from others in other places.
So in terms of collection, what is happening and what can you expect?
Well they are trying to build up enough of your stem cells in your bone marrow, starting from near zero, that are not infiltrated with Myeloma. And they want to get you producing them in large numbers and very quickly. The shots hurt, unless you have a patient, experienced, nurse, who understands that the slower she goes the less burning you will feel. So if it is really painful, it does not have to be, and you should tell the nurse to slow down as it is hurting. If he/she doesn’t comply, get a different nurse. It is a very slow process to get a painless shot, and you can imagine its not fun for them to bend over and take a L-O-N-G time to push the plunger in. But you should insist.
Typically they give them in your belly and you WILL end up with one big black and blue belly by the time all is said and done.
Then what? Well, they will keep giving you two a day shots until you are “ready to collect”. This occurs when your WBC gets up over 2.0 and then they will begin to run a “pro-COUNT” test CD-34 on your labs. This is an assessment run on your blood that is collected on a given day in the lab when they decide you might be ready. They are visually estimating through a microscope how many stem cells are running around your blood stream available for them to grab. They are looking for tens of thousands of stem cells in your blood to extract. So they won’t do this assessment until your WBC begins to get back up over 2.0 and then they will check everyday. They won’t stop giving you the growth factor shots until you are sent for collection.
Bone Pain
When your stem cells are building up in the bone marrow and spilling out into the blood stream at a magnitude that is now ready for collection of millions of stem cells from your blood, you can experience some mild to serious bone pain. As I understand the mechanism, in my lay terms, they are multiplying like crazy in your bone marrow and when it gets crowded they spill out into the blood stream. As that is occurring it can cause some aching in your bones of some significance. I liken it a little to a woman’s first birthing experience. You have read all the books, taken all the classes, but you don’t know exactly what it will feel like, how it will present for you and to what level of pain it will go. So when you suddenly find yourself or your loved one in a lot of bone pain, its easy to forget that is exactly what is supposed to happen and its good news.
Dave was sitting in the lounge chair and he just started writhing around, trying to get comfortable, I noticed he was grimacing and I said, “Are you OK?” He was lifting his pelvic up off the chair with his arms trying to find a better position. Finally he started to get scared as the pain intensified and the aching moved up into his torso, back, shoulders. It was over a few hours. I said, “I’m pretty sure its from the shots Dave, you are probably ready to collect your stem cells.” He wanted me to call the hotline, so I did and yep, that’s what it was and it is good news, take some more pain meds, get as comfortable as you can and come in early tomorrow. So we did.
Apheresis Contraption
Once the collection starts (apheresis), the bone pain goes away almost immediately for most people. It’s sort of like the steam valve on a tea kettle opening wide and letting all the steam out. When they hook you up to the arcane looking mechanical contraption, it is very quickly siphoning off all those stem cells running around your blood stream, giving the ones packed in the bone marrow room to move out. When this happens the pain begins to recede rather nicely. (What I understand is that it takes your blood in, spins it, the cells get separated out in the spinning process and then they return your blood back to you. The coolest part of the whole thing, is that any residual Myeloma cells not obliterated from the chemo will die in the freezing process for storage. So when they are reintroduced for assistance in your recovery they are myeloma free.)
I hope this information is helpful! Thanks Sarah for asking me to write about it.
Can somebody tell me if I can use Neupogen which was expired at the end of May?Thanks to all
BTW, my email is needmiracles@gmail.com
Hi, if anyone have excess neupogen and do not need it, can I have it? My insurance is not covering the drug and I need it .
Thanks.
Dear Jodi, Different people have experienced the bone pain differently, often dependent up on how the institution delivers the neupogen. Dave’s was delivered 2x daily for collection with a minimum of 4 hours inbetween shots. He only experience bone pain the day before collection and it was severe. He was given a lot of morphine but it seemed to only calm him but not take away all the pain. I’m sorry I wish I could be more helpful. Once you collect cells the pain will go away, as it is believed to be caused by a buildup of the stem cells in the bone marrow.
I am starting neupogen this thursday and keep hearing about bone pain and nothing about pain relief . Isn’t there something you can take for pain relief. Jodi
Hi,
I stumble upon your site while trying to get information on how and what to do with leftover neopogen vials?
Congratulations Diane & Hubby! Sounds like a difficult start but a great finale!
Lori, Third day of harvesting. First day was a bummer! (only collected .6) He ran a 101 temp – felt awful. I was so worried that they would cancel the entire process. Started antibiotics, pumped him with a zillion different fluids and started harvesting. Late afternoon they gave him an injection of mozobile. Second day they collected 3.4 Yahoo! Still slight fever – Another injection of mozobile. Today we hope to complete the process. He needs a 5, so all we need ia a 1. He’s number 1 in my book anyway!!!!!
Diane, Glad to hear the harvesting is going on!
Personally, I think it’s a total cop out and “line” they give us on the whole contamination issue. It’s crap. The TRUTH is more likely they have no way to handle the increased inventory in their system, coupled with the fact they probably don’t treat indigent individuals with no or bad healthcare coverage. It makes me crazy, BUT… it is not something you need to resolve and deal with. You have more important things to manage with your hubby. So while I would be annoyed and may confront them on such annoying issues just to blow off steam. I would let it go. Not a battle we are equipped to deal with during our treatments. If you know what I mean…
Good luck on the harvesting! Mucho Stem Cells! 🙂
We asked Karmanos about the left over Neupogen – Do to possible contamination / lawsuits they will not reuse, take or want it. The expiration date is 2013 – They suggested we hang on to the extra in case of need within the next two years. I guess that’s a good idea. My husband is getting his cells harvested as I write this note. We need to come back tomorrow for more harvesting.
Hi Diane, we got two a day broken up in morning and night (4 hours min between, but not 4 a day).
On disposing of the shots, I would contact your pharmacy for disposal, but I think you would probably need to contact pharma who makes it on donating it, which I agree with you, would be ideal. There may be some FDA regulations that prevent this, but then again, there may be a program we don’t know about. If you find out anything on that, please do share. I have gotten this question before.
I’ve put the question up at Beth Morgans’s MM List Serve. We’ll see what comes back.
Lori, Thanks for the concern, He’s getting two shots because they needed to break up the amount of Neupogen. 480 mcg/.8ml and 300 mcg/.5 ml. Morning – same at night. He said his pain feels like he’s having a bone marrow test done all over his body. The cold rain we ‘re having in Michigan isn ‘t helping. Rained all night and continues to come down. Do you know if we can give away (donate) any Neupogen that will not be used. We figured out that each shot costs $750.00. The nurse told us they would just throw the left over injections away. That seems to be an expensive waste!
Welcome Diane. I’m sorry for his pain. It seems as you can see from some of the comments, the drugs leading up to the collection process is vastly different. It frustrates me a little as Dave only had bone pain the day before collection, whereas some of the rest of you are having days and days of it. But then I have to remember everyone is a little different too, but 4 shots a day of GCF is kind of a scary prospect.
So I’m pulling for a Monday collecition! The sooner he collects the sooner the pain will go away. Just do what you can to make him comfortable. Poor thing.
New to the blog. I am giving my husband Neupogen shots (2 in the morning and 2 at night). He has tremendous bone pain all over. Does not sleep well at night. Up ever 2 hours. The doctors will harvest his cells on Monday. Praying they get enough stem cells. If not we return to the hospital on Tuesday. The Journey Begins!
Just to answer Lori….yes, Mike was black & blue from the shots….just like now with daily Lovenox shots. 🙁
The Huntsman gave me Neulasta. I also had very bad bone pain…small of the back and chest. Without fail, it hit me 6 days after injection. The pain only lasted a day, but it was intense. I also had the injection in the belly. However, my belly looked like a war zone already from the daily Lovinox injections I gave myself.
Best of luck
Doug
Neupogen left overs – if you can contact a local hospital where other people might need it, some do not have insurance and cannot afford to buy their own. Even though it is expired, sometimes it’s ok to use. The hospital will know so ask them and they will let you know.
Hi Jen & Mike!
Sometimes maintenance produces CR, so let’s pray for that! A good long, indefinite one!
I would ask your local pharmacy if they can suggest how you can dispose of it. I would hope they would take it for you. We had the same issue with procrit (same sort of shot for red blood cells to get boosted). I think they are still in my fridge and I’m sure they are long since expired as well.
We are new to your blog! Thank you so very much for providing such an informative forum. My husband Michael was diagnosed with Multiple Myeloma in June of 2009. He went through a stem cell transplant in June of 2010. I am looking at 2 boxes of Neupogen that went unused during his stem cell collection process, that had been sitting in our fridge until it expired in November. We need to bring to a appropriate place for proper disposal. Where does Neupogen go when it dies?
My husband did not experience black and blue issues, nor pain, as a result of Neupogen injections that he bravely self-administered before his stem cell harvesting process. So yes, I agree, everyone is different! He is also not in remission after going through the stem cell transplant. So we are in the next chapter, called “Maintenance”.
Our very best wishes to all Myeloma patients out there!
Jen and Mike Walker
Santa Rosa, CA
Well I guess they both divided them, just one also divided by several hours. I hope he keeps having pain free experiences and not too much black and blue, which is typically caused by the low platelet count, from the chemo. Dave kept trying to get the nurses to do a cool constellation or something with each poke. In lieu of that Candy, one of the nurses said she had some Spider Man band-aides so he settled for that! What we will do for fun in an otherwise horrific situation! 🙂
She didn’t hurt him…he said he barely felt the needle. The nurse, this a.m., told us that the 960 micrograms just had to be divided – they work better that way.
Grab whatever you want Sarah! One in each arm! OUCH! In Arkansas they do one when you come in the morning for whatever they are doing and then you come back in the afternoon for the second shot, in and out. I wonder if it matters????? Isn’t it amazing how its different from place to place and leaves us to question our understanding?
Lori: Thanks for complying with my request!! LOL
We just returned from Bob’s first Neupogen injections (one in each arm). He had a great (must have been experienced) nurse who gave his shots slowly.
I may use (plagarize) some of your statements in my next blog.
Sarah
Thanks Angie. He had good shot givers there at UAMS! Did you get a black and blue belly?
Just my 2 cents too…the shots never bothered Mike…but he did have the bone pain while on growth shots but luckily it was never horrible. As with everything else in “MM world”….everyone is different!
Thanks Hanna! Yes one shot a day would definitely minimize the potential for bone pain. Little Rock/Huntsman, and now a few others, collect for six transplants, 20 million cells, so they really crank it up!
Once again, great post Lori.
My personal experience and suggestions (short version as I’m going for a walk):
1. I really didn’t have that much pain from the process. Everyone is different. Maybe because I only had 1 shot a day (can’t recall the amount).
2. I refused to let them do it in my abdomen. They needed fat, I gave it to them. Triceps is what I offered, and a different arm every day so they got breaks.
Good luck.