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Mary D.
Thu Jan 17, 2008, 12:35 AM
I will be a PBSC donor for my Brother in 3 weeks. This will be the 2nd BMT that I have taken part in with him. The first time we did a bone marrow transplant. This time, the Dr. wants to do PBSC & I am told that I will need to take Neupogen for 5 days prior to transplant to stimulate my cells.

I have been reading the side effects of this drug & I am not feeling very comfortable about the drug. Is there anyone out there in "perfect health" that has taken this drug & what effects have been experienced?

Mary D.

Ruth Cuadra
Thu Jan 17, 2008, 01:04 AM
Hi, Mary.

I don't know if we have any members who can comment on being given Neupogen in preparation for donating stem cells, but I can tell you from my experience when I was a not-so-healthy person that the main side effect I felt was bone pain. I was told that this was the result of cells essentially being produced and forced out of the bone marrow into the circulating blood at an accelerated rate. The pain went away immediately when I stopped taking the drug.

Hope this helps. What a lucky man your brother is to have you in his life!

Regards,
Ruth

Mary D.
Thu Jan 17, 2008, 01:16 AM
Dear Ruth,
Thank you for sharing your experience, but I have found out that a healthy immune system & one weakened, will have a totally different reaction to the drug. (Per the Dr.)

My Brother has been taking this drug for weeks & he has had NO bone pain. In researching the drug on-line, I find there are several side-effects of concern. I am also surprised to find many issues related to stem cell donation. Since I have gone through a bone marrow transplant donation, it doesn't concern me as much as the Peripheral Blood Donation.

Mary

Birgitta-A
Thu Jan 17, 2008, 07:29 AM
Hi Mary,
Here is an abstract from ASH 2007. The risk seems to be very small but there is a risk as you have understood. Neupogen is a G-CSF.

Severe Donor Events after Allogeneic Hematopoietic Stem Cell Donation

Jörg Halter, Yoshihisa Kodera, Alvaro Urbano Ispizua, Hildegard Greinix, Norbert Schmitz, Geneviève Favre, Helen Baldomero, Diegter Niederwieser, Jane Apperley, Alois Gratwohl Hematology, University Hospital, Basel, Switzerland; Hematology, Japanese Red Cross Nagoya First Hospital, Nagoya, Japan; Hematology, Hospital Clinic, Barcelona, Spain; BMT Unit, Medical University, Vienna, Austria; Hematology and Stem Cell Transplantation, Asklepios Klinik St. Georg, Hamburg, Germany; EBMT Activity Survey Office, University Hospital, Basel, Switzerland; Hematology, University Hospital, Leipzig, Germany; Haematology, Hammersmith Hospital, London, United Kingdom

The risk for donors of allogeneic hematopoietic stem cells (HSC) by bone marrow (BM) or by peripheral blood (PB) harvest is generally considered negligible. Scattered reports of severe to life-threatening complications and a recent controversy on hematopoietic malignancies after GCSF administration for peripheral stem cell donation have challenged this opinion.

Previous studies were limited by small numbers. In two consecutive retrospective surveys conducted in 2003 and 2006 amongst 338 allogeneic transplant centres from 38 European countries participating in the annual EBMT activity surveys, centres were asked to report all donor deaths, all severe adverse events (SAE s), defined as occurring within 30 days and any hematological malignancy in a donor occurring after HSC donation.

262/338 teams (77.5%) responded to the first survey (1993-2002) and 169/262 (65%) centres replied to the second survey (2003-2005). The responding teams performed a total of 51 024 first allogeneic HSCT, 27 770 BM and 23 254 PB HSCT, which corresponds to 69% of all 73 947 first allogeneic HSCT reported during this time to EBMT.

There were 5 donor deaths, 1 after BM and 4 after PB donation, an incidence of 0.98 per 10 000 donations (95% CI 0.32-2.29), 37 SAE s (incidence 7.25/10 000 donations; 95% CI 5.11-9.99), 12 in BM (incidence 4.32/10000 donations; 95% CI 2.24-7.75) and 25 in PB donors (incidence 10.76/10 000 donations; 95% CI 6.97-15.85; p<0.02).

In absolute numbers, there were 20 hematological malignancies occurring in donors (3.92/10 000 donations; 95% CI 2.39-6.05), 8 after BM (2.88/10 000 donations; 95% CI 1.24-5.68) and 12 after PB donation (5.16/10 000 donations; 95% CI 2.67-9.02; p = 0.3). Based on the different observation times, the incidence rates for developing hematological malignancies are 0.398 per 10 000 person-years for BM and 1.20 per 10 000 person-years for PB donation, resulting in a relative risk of 3.02 (95% CI 1.11-6.87, p=0.027).

These data document a definitive risk for death, SAE s and hematological malignancies with HSC donation. Deaths occur with similar frequency in both groups. SAE s were more frequently reported after PB donation. The incidence rate for developing hematopoietic malignancies is higher after PB donation. These data clarify the recent controversy on HSC donation. They form a basis for donor counselling and underline the need for standardised donor follow up and international cooperation in order to define risk factors and to build up preventive measures.
Kind regards
Birgitta
68 yo, MDS Interm-1 dx May 2006, transfusion dependent, Desferal 4 days after transfusion, Neupogen injections 2/week

Mary D.
Thu Jan 17, 2008, 12:26 PM
Dear Birgitta,
Thank you for the information. I will certainly have a thorough discussion with the Dr.

ALRB
Mon Feb 14, 2011, 08:13 PM
This thread was dated, but if Mary is still there did you do the transplant? I was in a similar situation and had to take the gcsf to donate to my brother and wanted to know if you had any side effects.

thumper
Thu Jun 2, 2011, 11:55 AM
My niece just took Neupogen medication(2 months ago). This was to help save her bothers life, due to ALL. She had no side affects what so ever.Everything seemed to go beautiful, with no side affect for either. After a month my nephews blood was tested to see how many blood cells her his own, and how many were my nieces. The results were 98% my nieces, and 2% his.

I do have a question. Since he is still receiving chemo in his spine, the fluid was tested this week, and they found some sort cells in his fluid. Does anyone out there know what this might mean?

Bixa525
Thu Aug 18, 2011, 07:01 AM
My sister has CLL and I am to be her peripheral blood harvest and I am to get three injections of Neupogen. Everything I have been reading is telling me that there can be some serious long term effects of this drug and one of them is different forms of Leukemia. Anyone have any current information on this drug and it's side effects?

Neil Cuadra
Thu Aug 18, 2011, 02:03 PM
My sister has CLL and I am to be her peripheral blood harvest and I am to get three injections of Neupogen. Everything I have been reading is telling me that there can be some serious long term effects of this drug and one of them is different forms of Leukemia. Anyone have any current information on this drug and it's side effects?
According to the National Marrow Donor Program, there have been no reports of long-term complications from the use of Neupogen to move stem cells from your marrow to your circulating blood for stem call harvesting, no doubt because the use is very temporary. A common side effect when you're taking Neupogen to be a stem cell donor is bone pain, which can be controlled with over-the-counter pain relief medicine.

For stem cell donors, a risk of more concern may be that some donors need a temporary central venous line because they don't have suitable arm veins. It's a common procedure but it's minor surgery, which always has a small percentage of risk. But 82 out of 100 women and 97 out of 100 men have suitable veins and don't need a central line.

The overall risk of being a stem cell donor is not zero, so that's to be weighed against the benefit to your sister. In the last decade the method of transplant donation has shifted in most cases from bone marrow donation (which is always a surgical procedure) to stem cell donation. It's safer for the donor and produces faster patient recovery.

Bixa525
Fri Aug 19, 2011, 10:29 PM
I appreciate your reply but what about the information in the post above that says there can definitely be a risk of death and hematological malignancies with HSC donation. How do they explain those prior reports away?

This definitely concerns me.

evansmom
Sat Aug 20, 2011, 01:23 PM
I would have to do some specific research on current statistics of the risk of very short term use of G-CSF (Neupogen) for the purpose of being a stem cell donor to someone in need.
Fo now, for what it's worth, I can tell you that in the situation of considering a donor and preparing them for donation, it is their health and well being that comes before that of the patient they are donating to. Donor safety is always more paramount than patient safety, as the patient is already at a detriment.

The bottom line here is that Neupogen would not be on the market and available for use if it carried a measurable and traceable risk of harm.

This article, originally posted in another thread by Birgitta suggests that Neupogen didn't even increase the occurance of transformation to AML (acute myelogenous leukemia) from MDS in a group where it is somewhat anticipated. So, my take on this is that if Neupogen can't provoke a malignancy in a person at higher risk of malignancy (those with MDS), then, quite likely, it is completely safe for short term use by a donor whose health and well being has been carefully and thoroughly screened before being considered as the definitive donor. Here is that article, or at least a summary of same:

http://www.abstractserver.com/mds2011/planner/index.php?go=abstract&action=abstract_iplanner&absno=132&MDS2011=9gj8bhdk0bunk7nston62kni20&MDS2011=9gj8bhdk0bunk7nston62kni20

Best wishes,

Neil Cuadra
Sat Aug 20, 2011, 02:35 PM
Bixa525,

Results from studies should not be explained away; they should be considered for what they tell you. You asked about Neupogen and the statistics show a very small risk. The ASH 2007 study showed that at the time there was a less than 0.01% risk of death from all causes after a donation (not necessarily a result of Neopogen). Meanwhile, the risk of dying from injury in an accident (U.S. statistics) is about 0.06% annually, which is more than 6 times higher. And that 0.06% is multiplied by every year we live, while people rarely donate stem cells more than once.

That study was from data at least 5 to 8 years old and safety continually improves. Based on more and more favorable outcomes, transplants continue to migrate from bone marrow collection to stem cell collection (see chart (http://www.marrow.org/PHYSICIAN/images/nmdp_txs_adult_large.JPG)). But the option for bone marrow collection is still available in many cases and nobody should be blamed for deciding that a procedure is too risky. It's a very personal decision.

Birgitta-A
Thu Sep 1, 2011, 04:07 PM
Hi Bixa,
Todays Blood has an article about Neupogen for stem cell donors. They didn't find any increased chromosomal instability:
http://bloodjournal.hematologylibrary.org/content/118/9/2602.abstract
Kind regards
Birgitta-A

Bixa525
Fri Sep 2, 2011, 08:33 PM
Thanks for your replys everyone. I guess my biggest concern is I have recently been diagnosed with fibromyalga and my sisters Oncoligist said this wouldn't be a problem in regards to donating my stem cells. After receiving this information I went to the Bone Marrow Donars website and it says that people with fibromyalga shouldn't donate so I am totally confused what is the correct information here. I will help my sister if needed but I am concerned my health might be affected and this is causing me anxiety. Anyone have any info on donars with fibro?

P.S. I do have a younger brother that was never tested, do you think he should get tested to see if he is a match?

Christina Dans
Mon Nov 21, 2011, 05:16 PM
My sister has MDS. I will be doing Peripheral Stem Cell donation for my her in two weeks. I have just now started to get very nervous. I am so glad that I am able to do this for her, but I am still scared. I think I was more comfortable with the idea of the bone marrow harvest. I am also very worried about complications due to the shots.

It helps to read your posts. Thanks!

Bixa525
Wed Jan 11, 2012, 03:43 AM
Hi Cristina, I was just wondering if you went through with the bone marrow transplant for your sister? If so can you share your experience with me? I am to be my sister's donor in less then two weeks and quite honestly I am scared to death. I went yesterday for all of the tests and they checked my veins and they said I will need a central line put in. This procedure sounds scary and I also still concerned about the long term and short term effects from the shots of Neupogen. Can you tell me if you had any problems? Thanks

cathybee1
Tue Jan 17, 2012, 06:42 AM
I can't add to anything already posted about Neupogen. But I can tell you that both my husband and mother had central lines. I was there when this was done. Both of them reported minimal discomfort during the procedure. And no ill effects while the line was installed or after.

And I hope you and Christina were able to get in touch.