Neulasta: is it really necessary to take?
Comments
-
Hello.
A friend of mine (late 40's and in excellent health) was dx'd with b/c and started chemo. The doctor gave her neulasta from the get go, even though she is not in a high risk group. She says the pain is HORRIBLE!! on top of all else that goes on with the chemo, but the bone pain is the WORST of all!
When i did chemo in 2001, i don't think neulasta was on the market (?) but I do remember having my blood monitored. My white blood cells dipped, but where OK to continue treatment.
My question: why give the neulasta automatically? Why not have her go through the first treatement and see if she IS having a problem with the white blood cells? I get the impression that now doctors are giving neulasta to anyone doing chemo (not only breast cancer).
Is neulasta really necessary? Is it given "just in case"?
Thank you all. -
In my case, I received my chemo dose dense. AC and Taxol. Dose dense means every other week so in that case neulasta was given automatically because chemo came so often.
For what it's worth....my blood work was always excellent and I never got sick or missed a chemo session. I will agree though, neulasta is no fun injection to receive. The side effects really hit you.
Mary Jo
-
ditto marejo
-
You didn't mention what chemo your friend is on, but with A/C, I'm not sure I'd go without the Neulasta. Even getting the shot the day after treatment, I was neutropenic (immune system seriously compromised) within 3-5 days after treatment; then the Neulasta would kick in and my levels would rise again. I was on DD A/C and had three weeks between A/C's and that gave my levels time to rise back to a more normal range, (it generally took me 10 days-two weeks to get them back up). I wouldn't have been able to continue treatment without the more normal levels and I'm not sure how long that would have taken on my own, but I was nervous enough walking around neutropenic for a week or so. I wouldn't have wanted that to go on longer. The danger of infection when you're neutropenic is high, and not worth ending up in the hospital.
Your friend sounds really uneasy about what she's going through and being given. It might help her to talk to her oncol. or NP. I highly recommend she ask about solutions to any SE's; and I really recommend she try generic Claritin, the non-D type, with his/her OK. I discovered that recommendation here and started taking it about a week after my first Neulasta; I could only walk a short distance and couldn't put my purse on my shoulder from the pain... but when I started taking generic Claritin nightly, the pains were completely gone the rest of my treatments. (of course, the A/C has it's own lovely SE's, but at least I wasn't in pain!!)
It doesn't help everyone but it helps a lot of people and as my oncol. said, no harm to try. The pain meds they gave me were worthless, but again, that's what works better for some. If she isn't on A/C she may not need Neulasta. Again, topic for her oncol. Either way, they should either be able to help her with the pain and perhaps reassure her about the need for (or lack of need for) Neulasta. She always can make the decision to not take it and see what happens. As with all meds, taking it is ultimately the patient's decision; but it's worth looking at the potential consequences and benefits before she drops it.
I haven't heard that Neulasta is given in general -- only with chemos known to knock out WBC's. I'm on Taxol now (not DD) and will not get Neulasta unless my WBC (actually, my neutrophils) drop too low, but they don't anticipate that.
Yes, it's kinda hell with the SE's. Sometimes really hell! The chemo, the pre-meds, the whatevers, can all have consequences that are really difficult. You or your friend can come here any time for support, answers, to rant, scream, cry, whatever! We're with both of you! These women have been a lifeline for me.Best of luck to her and hugs to you both...
Carol
-
I had chemo last summer, C&T, 4 treatments, every 3 weeks. No side effects from the chemo to complain about, tired on the 4th day and hair loss were the biggies. My blood was monitored and was always good, I never had a neulasta shot.
-
I did AC (3 weeks apart) did not have Neulasta and had no problems with blood counts. They dipped, but by the time of the next treatment they were back up. I ate lots of strawberries which are good for white blood cells. My oncologist said that if my counts did not recover he would have given me Neulasta, but he waited to see if my body could cope and it did.
So I think it is a question of different oncologists having different views.
-
Nature girl,
I am not sure exactly what her chemo is....i think "carboplaxin" and another one. It is probably the usual that is given.
It just seems that the neulasta is relatively new and is given automatically.
Maria and sakura both did not have the neulasta, and had no problem. Since the drug is so strong and painful, why couldn't the oncologist wait the first round and see if it IS necessary to give?
I did chemo on 2001 for ovarian cancer, and again, was not given neulasta and did fine. Now, even the ovarian cancer patients are getting the neulasta.
My friend was told she'd be at risk for infection/death if she didn't keep her white blood cells up.
-
leigh - I have often wondered about this ever since I had Neulasta back in 2005!
If I had known then, what I know now, I DEFINATELY would NOT have agreed to it. Since I was healthy - other than the bc of course - I would have only taken it if needed. Odds are... I would NOT have NEEDED it!
I really think the pharmaceutical companies have scared us into believing it's necessary from the start.
I too had HORRIBLE bone/joint pain from it. And I think I could have spared myself the agony - by NOT taking Neulasta. After each injection, I felt as though I had been hit by a semi! And then - because of the pain - I was subjected to more meds - in the form of pain killers - vicious circle to say the least.
Very good post... I hope many girls consider this BEFORE they agree to it.
Best wishes to your friend.
-
Hello All,
My first chemo treatment, after my WBC were 0, nunca, nada - NOTHING they gave me Neuprogen for 2 days. After that 2nd dose, my WBC was 8. My 2nd chemo treatment, they gave me Neulasta the day after. My WBCs were 17 count when checked a week later. My 3rd chemo treatment will be on 7/29/09 and want to take Claritin since these hard narcotic pain killers keep me as immobile as the bone pain. As my Hema Onc indicated, the bone pain is a result of the WBCs increasing. I want to convince my Onc. not to give me the Neulasta shot on my 3rd Treatment. I have one more after this - 3wks apart. From this shot, I get plenty of rest, water and blankets.
Also, I was told NOT to eat raw fruits and vegetables and only cooked/well done foods during chemo treatements. This could comprise my health with bacteria and infection. I so craved my micro salads. Therefore, most foods purchased were "No Sugar Added" and home cooked. (I learned to make home made applesauce). This helped with the thrush, mouth sores and hormonal hot/cold flashes.
Lot's O Love!
-
Yes, I am wondering if this is indeed over-prescribed. I don't want to sound cynical, but could the doctors be giving it 'in case' and don't want to be sued? Or is there even an incentive from the drug company?
My friend does not work now, and could stay home during the 3-4 days when the blood cells are low. She gets the chemo every three weeks.
Again, I just don't understand why they did not let her (or anyone) do the first treatment and monitor the white cells to see if it is necessary?
And Madalyn, you are so right about the ads! What a bunch of baloney. -
I had chemo in 2007 and did what my onco called TAC. I did every three weeks w/neulasta the day after each treatment, 6 treatments in all. Each time my WBC went to dangerous lows and I was neutropenic the entire time. After the first round of chemo I was hospitalized with a major infection and was there for three days. I wouldn't want to know what would have happened without the Neulasta. The bone pain from it was awful, but it did seem to keep me fairly stable after that first round. Maybe I still would have struggled with my WBC, but I think you have to do what the onco suggest for the most part, but if she is nervous maybe she should ask more about it. We really do have to be our own advocates when it comes to treatment.
-
I had DD 4AC & 4Taxol, had the shot, my onc said that with the Taxol most women didn't need it. I was the exception. After my first T my counts dropped and I was delayed 4 days for my tx, not something you want to happen. I was devastated. Put me back on the shots to finish out tx and counts stayed good. Good Luck. HUGS, Dawn
-
leigh,
I don't know about other areas of the country or other drs; I only know here Neulasta is not "automatically" given. I guess it's partly a matter of your dr. and the area you live in. Most recently, my mother and my SIL, who have been battling ovarian cancer for 3 and 4 years respectively, have never had Neulasta. My mother and I see the same oncologist and have had some of the same chemo. At least with my oncol. the decision is based on the patient. My SIL is in another part of the country, in a large city.
I would suggest, as I did before, that your friend take her questions to her oncol team. It helps to have questions prepared and written down so they're clear to her and to her team. Her team is there to help address exactly these kinds of things. They will not force her to do anything that she's uncomfortable with.
I can't address why someone else has had different treatment than I can have; I can't begin to know their situation, physical details, etc., that all impact every treatment I only share my own experience. I was comfortable with my need for Neulasta and with my ability to deal with the side effects without additional pain meds -- only an OTC allergy med that I tend to take a lot of the year anyway. I don't see not using something just because of SE's, but for some that's reason enough, and there are good reasons to use or not use anything. For me, it was worth it; for others, it won't be.
I am surprised that some people think drugs are used primarily because of the push by drug companies. I don't disagree there is a push, I just disagree with the impact it has on a good physician. Public ads are aimed at the consumer, not the dr., so I don't give them credit with anything except causing patients to run (often unnecessarily) to their drs. with new drug requests. A good dr. knows when these requests are appropriate and when they aren't. I know drugs are also promoted to drs.by drug companies, but I have a high level of trust in my dr and his team to evaluate the claims of any drug company, and not just accept it on the company's say-so. I had a recent conversation with my oncol. about a drug recently, and he actually goes against the drug company's rec. based on his own comfort level and experience with the drug. If I didn't trust my dr. to make independent evaluations, I'd find another.
That doesn't mean I don't do my own research or ask questions (that's why I had the recent conversation!).. I've gotten some of my protocol changed because of it (and it's also why I pointed out that every decision is ultimately the patient's. Don't blame the dr. if you go along with something you don't agree with!).
It's a sad but real truth that the patient, although often too worn out emotionally and physically to be so, is usally their own primary advocate. You have to keep track of your own body, meds, reactions, etc. -- no one else will do it to the same degree or know you the way you know yourself. Anecdotal information is just that -- anecdotal. It may or may not be of value. Being able to do your own research, evaluate that research, come up with questions, talk openly with your oncol. team, and ultimately decide what is right for you -- all part of the picture. I had one friend who chose to treat her cancer only with nutrition. Her outcome didn't change, but she made her own decision based on what was right for her. That's all anyone can do.
No one here has the ultimate answer for your friend, including me. Best of luck as she searches for her own answers!
-
I had Taxotere, Carboplatin and Herceptin. My onc doesn't give Neulasta or Neupogen prophylacticly with this. About a week after my first chemo, my neutrophils went almost to zero. It made me feel very bad - so tired and worn that it was a strain to even sit. My onc started me on Neupogen but while waiting for it to act, I got a neutropenic fever (a fever due to the neutrophils being so low even though there was no infection) and had to spend a night in the emergency room. After that, she prescribed 3 Neupogen shots per chemo treatment. I was instructed on how to give them to myself.
In the BCIRG 006 study, 63% on AC-T, 66% on TCH and 71% on AC-TH got grade 3 or 4 neutropenia. That's high enough that I can see why some oncs would give something to prevent it as a matter of course and some others would choose to wait and see. Grade 4 neutropenia can make you feel terrible even without an infection.
I think many prefer to give Neulasta because it just takes one shot so they don't have to get patients to self-administer it but it is much stronger than Neupogen. My onc said one Neulasta dose is like 10 Neupogen. I didn't get bone pain from Neupogen, but I did get nausea and vomiting which is a less common side effect. Perhaps your friend could ask about trying Neupogen instead.
-
Not a lot to add, except that it is amazing the variation of treatments and reactions! I'm on TCH, and did not have Neulasta prophylactically or automatically. However, on day 8 of cycle 1, came down with neutropenic fever and spent 4 days in the hospital. Have had a Neulasta shot after each treatment since AND -- have had NO bone pain or ANY other noticeable side effects! Those days in the hosiptal were not fun, and were very expensive in terms of direct costs and loss of income, so I'm very grateful to have had the Neulasta keeping me on my feet. I've followed all the neutropenic precautions (no raw fresh fruits/veg, no unfiltered or unbottled water or ice, no pepper, no digging in the dirt or exposure to blown soil, no crowds, no handling flowers, etc. etc.) during "nadir" anyway -- until this last cycle when I had to help out my husband with a major art sale during which I broke almost every rule and spent two whole days glad-handing strangers. But, I'm delighted to say, suffered no ill effects! So count me among the Neulasta cheerleaders!
-
I have had the neulasta shot for both of my DD A/C. I can almost tell when it kicks in. The energy level goes up and I start to feel better. Do what they suggest. My WBC has been low but without it I would be in a terrible situation. I helps you live life. My hips did hurt but took some ibuprofen, or painkiller during the night and got along fine.
-
I had TCH and my Dr. wanted to give me Neulasta as a standard. We discussed it and I chose to see how I made it through the first round. My counts did dip (obviously) and I had to take neupogen to be able to have the next treatment.
I did not tolerate the Neulasta well, and I had Neupogen for the balance of treatments. For some reason the Neupogen didn't bother me as much as the Neulasta. I did take left over pain med from my surgeries to sleep at night. I had a chronically low WBC even after completion of chemo.
-
The only way they can give the A/C every two weeks is to give the Neulasta, was my understanding, and studies show the every two week regimen had a higher positive result for some tumors - especially the triple neg that I had. The danger of dying during chemo from illness or infection is drastically lowered with the Neulasta, which was reason enough for me to take pain pills and grit my teeth and get thru it.
That said, I did not have Neulasta for my final two Taxol, and WBC only dipped a lil bit, so I was grateful for that - but also grateful they had the Neulasta for the A/C - pain and all.
-
Also - it greatly lowers your chance of having to delay treatments due to your WBC - and delayed treatment can mean less effectiveness of the chemo - yikes! I was so nervous about having delays, and so grateful after my final treatment that I could stay on the regimen as planned. If we're going to go thru this, we want the best chance possible in the end!
-
Your friend may find that neupogen is somewhat easier on her than neulasta. It's a series of shots rather than just one, but the effect is also more spread out. I did dose dense AC and taxol and ended up hospitalized twice with neutropenia even with the neulasta and then later the neupogen. The bone pain is bad, but neutorpenia is worse.
-
i had horrible bone pain with neulasta too...could count on it starting like clockwork. When the changed from the FEC to the taxotere, the combo of taxotere and neulasta proved to be much too much for me...I was in so much pain i could hardly walk. We changed over to neupogen. While it is aggravating to take more shots it is sooo worth not having the bone pain. I had hardly any pain with neupogen. Onco says neulasta ups the counts quicker so that is why they use it first. My WBC's took a severe beating on the first chemo and the last few. I was taking chemo in the winter during cold and flue season so that was a big concern. I stayed in more that i would have if it was another time of year. Tell her to ask about changing to neupogen or trying to go without it to see how the WBCs do. We all know that pain..it is predictable in it's arrival and leaves as quickly as it comes but while it is there it is AWFUL
-
I am supposed to take neupogen. I am a little nervous about administering the shots. Any tips?
-
I just ended up in the hospital five days after my first chemo. Around Day 8-9 I started getting a severe fever - got to the emergency and had 1 WBC and ZERO neutophills (what fights infection in the white blood cells)
I wish I was given nuelasta previously - It's been awful. My chemo is Taxotere and Cytoxin, and I had bad pains following my chemo, so I'm shocked to hear people don't regularly get bone/joint/muscle pains from their dose... Why me? Just kidding.
Anyways, just thought to share that.
Categories
- All Categories
- 679 Advocacy and Fund-Raising
- 289 Advocacy
- 68 I've Donated to Breastcancer.org in honor of....
- Test
- 322 Walks, Runs and Fundraising Events for Breastcancer.org
- 5.6K Community Connections
- 282 Middle Age 40-60(ish) Years Old With Breast Cancer
- 53 Australians and New Zealanders Affected by Breast Cancer
- 208 Black Women or Men With Breast Cancer
- 684 Canadians Affected by Breast Cancer
- 1.5K Caring for Someone with Breast cancer
- 455 Caring for Someone with Stage IV or Mets
- 260 High Risk of Recurrence or Second Breast Cancer
- 22 International, Non-English Speakers With Breast Cancer
- 16 Latinas/Hispanics With Breast Cancer
- 189 LGBTQA+ With Breast Cancer
- 152 May Their Memory Live On
- 85 Member Matchup & Virtual Support Meetups
- 375 Members by Location
- 291 Older Than 60 Years Old With Breast Cancer
- 177 Singles With Breast Cancer
- 869 Young With Breast Cancer
- 50.4K Connecting With Others Who Have a Similar Diagnosis
- 204 Breast Cancer with Another Diagnosis or Comorbidity
- 4K DCIS (Ductal Carcinoma In Situ)
- 79 DCIS plus HER2-positive Microinvasion
- 529 Genetic Testing
- 2.2K HER2+ (Positive) Breast Cancer
- 1.5K IBC (Inflammatory Breast Cancer)
- 3.4K IDC (Invasive Ductal Carcinoma)
- 1.5K ILC (Invasive Lobular Carcinoma)
- 999 Just Diagnosed With a Recurrence or Metastasis
- 652 LCIS (Lobular Carcinoma In Situ)
- 193 Less Common Types of Breast Cancer
- 252 Male Breast Cancer
- 86 Mixed Type Breast Cancer
- 3.1K Not Diagnosed With a Recurrence or Metastases but Concerned
- 189 Palliative Therapy/Hospice Care
- 488 Second or Third Breast Cancer
- 1.2K Stage I Breast Cancer
- 313 Stage II Breast Cancer
- 3.8K Stage III Breast Cancer
- 2.5K Triple-Negative Breast Cancer
- 13.1K Day-to-Day Matters
- 132 All things COVID-19 or coronavirus
- 87 BCO Free-Cycle: Give or Trade Items Related to Breast Cancer
- 5.9K Clinical Trials, Research News, Podcasts, and Study Results
- 86 Coping with Holidays, Special Days and Anniversaries
- 828 Employment, Insurance, and Other Financial Issues
- 101 Family and Family Planning Matters
- Family Issues for Those Who Have Breast Cancer
- 26 Furry friends
- 1.8K Humor and Games
- 1.6K Mental Health: Because Cancer Doesn't Just Affect Your Breasts
- 706 Recipe Swap for Healthy Living
- 704 Recommend Your Resources
- 171 Sex & Relationship Matters
- 9 The Political Corner
- 874 Working on Your Fitness
- 4.5K Moving On & Finding Inspiration After Breast Cancer
- 394 Bonded by Breast Cancer
- 3.1K Life After Breast Cancer
- 806 Prayers and Spiritual Support
- 285 Who or What Inspires You?
- 28.7K Not Diagnosed But Concerned
- 1K Benign Breast Conditions
- 2.3K High Risk for Breast Cancer
- 18K Not Diagnosed But Worried
- 7.4K Waiting for Test Results
- 603 Site News and Announcements
- 560 Comments, Suggestions, Feature Requests
- 39 Mod Announcements, Breastcancer.org News, Blog Entries, Podcasts
- 4 Survey, Interview and Participant Requests: Need your Help!
- 61.9K Tests, Treatments & Side Effects
- 586 Alternative Medicine
- 255 Bone Health and Bone Loss
- 11.4K Breast Reconstruction
- 7.9K Chemotherapy - Before, During, and After
- 2.7K Complementary and Holistic Medicine and Treatment
- 775 Diagnosed and Waiting for Test Results
- 7.8K Hormonal Therapy - Before, During, and After
- 50 Immunotherapy - Before, During, and After
- 7.4K Just Diagnosed
- 1.4K Living Without Reconstruction After a Mastectomy
- 5.2K Lymphedema
- 3.6K Managing Side Effects of Breast Cancer and Its Treatment
- 591 Pain
- 3.9K Radiation Therapy - Before, During, and After
- 8.4K Surgery - Before, During, and After
- 109 Welcome to Breastcancer.org
- 98 Acknowledging and honoring our Community
- 11 Info & Resources for New Patients & Members From the Team