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Does Every Cancer Patient Need Neulasta?

What’s in a chemo “cocktail” or in Neulasta? A lot more than just chemotherapy drugs, I discovered. I also learned that you might not need — or want — every ingredient.

My story is proof that you can always do your own research and have a conversation with your doctor about whether a medication is truly necessary.

Last year, I was diagnosed with invasive ductal carcinoma (IDC), Stage 2. IDC is the most common form of breast cancer, affecting 232,340 women in 2013, according to the American Cancer Society. Because my tumor was close to the skin and near my nipple, I was unable to have a lumpectomy so instead had to have my entire left breast removed.

When the surgical pathology came back positive for cancer in 3 out of 9 related lymph nodes removed, my oncologist Mary M. Li, MD, PhD, of Florida Cancer Specialists in Spring Hill, said I would need a full course of chemotherapy and the maximum dose of radiation to the area to kill any remaining cancer cells and to prevent a recurrence.

Dr. Li described the regimen that I would follow: 4 rounds of the most common breast cancer chemotherapy cocktail, consisting of Adriamycin (doxorubicin) and Cytoxan (cyclophosphamide), with each round spaced 3 weeks apart; followed by 12 weekly infusions of a chemotherapy drug called Taxol (paclitaxel). I agreed to start immediately.

What’s in That Cocktail?

Upon my first infusion, I learned that my cocktail would include a lot of additional drugs hanging in those bags next to the chemo drugs. They would be given on the days following chemotherapy to help combat side effects, such as nausea, lack of appetite, pain and inflammation.

But before the chemo infusions even started, another drug popped out at me when the insurance navigator at my doctor’s office handed me a $25 co-pay card for a drug called Neulasta (pegfilgrastim). Neither my doctor nor anyone else had previously mentioned the drug, leaving me to resort to “Dr. Google” to find out exactly what it does.

I quickly learned that Neulasta is a “colony stimulating factor” given to certain breast cancer patients whose chemo drugs suppress their immunity. (My chemo drugs fit that category.) Neulasta would increase the bone marrow production of leukocytes, a type of white blood cell responsible for immune function. Both the American Society of Clinical Oncology and the National Comprehensive Cancer Network Clinical Practice Guidelines in Oncology recommend the Neulasta injection with every chemo cycle to guard against a serious infection manifested by a high fever called febrile neutropenia.

But when looking at the patient criteria indicated on the Neulasta website, I noticed that the drug is recommended for cancer patients over the age of 65. It is also suggested for patients who have additional medical conditions such as diabetes and liver, heart or lung diseases; those who have previously been treated with strong chemotherapy or radiation; and those with stage 4 cancer or an already weakened immune system. None of these conditions described my own.

Upon further investigation, I discovered that Neulasta was among the top 10 best-selling drugs, with nearly $3.6 billion in revenue from July 2013 to July 2014 according to research firm IMS Health. I wondered how a drug given only to cancer patients could generate so much in sales. (By comparison, OxyContin, a narcotic pain reliever available to the general population, tallied only $2.5 billion during the same time period.)

I also wondered how much Neulasta would bill my insurance company while I was shelling out a mere $25 co-payment. The insurance navigator said the allowed amount my insurance plan would pay per injection was $4,917.42 — an exorbitant sum for a drug I didn’t think I needed.

Then there were the scary side effects. Though rare, some of Neulasta’s serious side effects include acute respiratory distress syndrome (ARDS), severe allergic reactions and fatal splenic rupture. The scariest one for me, however, was the more commonly reported reaction: bone pain. In the drug’s clinical trials, conducted in 2002, the incidence of bone pain was reported in 26% to 37% of patients, with fewer than 5% reporting severe pain. But in a more recent study involving 510 patients in clinical practice and published in the Journal of Clinical Oncology, 59% of patients reported pain and 24% reported severe bone pain, which is pain greater than 5 on the 10-point scale.

Bargaining With My Doctor

I definitely didn’t want additional bone pain and didn’t feel I was in the indicated patient group, so I asked Dr. Li if I could skip the shot. She explained that cancer patients with a low white blood cell count are prone to infection, and those with fever above 101° F (oral) are usually hospitalized. We discussed the risk of bone pain versus the benefit of protection from fever, and Dr. Li agreed that — °since I was in a lower risk group, being young (age 47 at diagnosis) and previously healthy — we could begin my chemotherapy without the Neulasta and see how my body responded. If I developed a low-grade fever or a dangerously low white blood cell count, Dr. Li would give me a daily shot of Neupogen (filgrastim) to avoid a trip to the hospital. Neupogen, the predecessor of Neulasta, is a shot given daily; while a shot of Neulasta lasts the entire 2 to 3 weeks between chemo cycles.

My chemo friend Janet Wolofski, 57, who has health issues beyond breast cancer, accepted Neulasta and its side effects as just another part of her treatment —  as do most patients. “If it’s part of the treatment, then I’ll take the shot,” Wolofski says. “Anyway, they have me on so many different medications and chemo drugs that I’m not sure which one causes my bone pain.” It’s true that many chemo drugs also have bone pain as a side effect.

I wondered if other oncologists would allow their cancer patients to opt out of Neulasta, given that the drug is routinely prescribed as part of the chemo protocol. So I reached out to noted oncologist Rishi Sawhney, MD, of Valley Medical Oncology Consultants, in San Francisco. He says, “I understand the side effects of Neulasta can be scary, so I would work with any patient who wanted to decline it if they are not in the indicated group of patients.” He mentioned that younger cancer patients, such as myself, are generally more alert to their health status and apt to seek help if an emergency fever spiked. But he did warn, “Fever sustained above 101° F in a cancer patient with a low white blood cell count must be immediately hospitalized and treated as it can turn quickly into septic shock.”

Dr. Sawhney also told me that growth-factor drugs such as Neupogen and Neulasta have revolutionized chemotherapy. “Chemo used to be an in-patient process 15 to 20 years ago, so we could monitor white blood cell counts and fever. Without these drugs, we couldn’t have cancer patients walking in, out and about as safely as they do today,” he says.

I am happy to say that I am now done with chemo. But during my 6 months of treatment, Dr. Li monitored my white blood cell counts closely through weekly blood tests and continued to let me forgo Neulasta. (During the first 3 months, I made a separate trip in to get the tests.) The good news? I never once got sick with a fever nor suffered what could have been the harmful side effects of the drug.

As I said, my story is proof that you can always do your own research and that you can have a conversation with your doctor about whether a medication is truly necessary. You can discuss whether there is a wait-and-see approach, a lifestyle change or a less-expensive medication that could have the same or a more long-lasting effect. Neulasta wasn’t necessary for me, but it may be for you. The important thing is to do your own research and be your own advocate when it comes to understanding your medical condition — and the drugs you are prescribed.

Naomi Mannino is a Tampa, Florida-based freelance journalist who reports on health and medical news, research and technology. Follow her on Twitter @naomimannino.

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Sherry Malone

Mine gave every patient neulast without asking us first.
I had severe side effects within 5 minutes of the injection going into my bidy, mine was the on- body injection.For 2r hours, I had no issues with my chemo drugs..My oncologist told me it was NOT the neulastam but I know it was..I still have adema and bone pain which I never had until my breast cancer treatments.
I vomited up black blood 68 hours after the neulasta…that stuff would have killed me…
They charged me over $11,000.00 for the drug, I owed over 3,000.00 after Medicare paid…I am still paying it out.
I was not offered any kind of co pay card…and on tv they offer a 5.00 co pay card..
I don’t recommend anyone getting the Neulasta drug.

Amy

Such a great article and information – THANK YOU! I have nearly the same diagnosis and am currently on a similar treatment plan (I take the Taxol every other week). I had bone pain for about a day and a half after treatment #3 of the A&C but not with the other treatments. I had severe bone pain after my first treatment of Taxol which was my 5th treatment altogether. It was incredibly painful and lasted for 3 days. Advil or Tylenol didn’t affect it or if they did, I sure didn’t notice. I really feel like it’s the Nuelasta that caused it so I asked my Nurse Practitioner if I could forgo it for my 6th treatment. I’m 49 and, aside from cancer, am healthy and fit. My blood counts have been good each time so she allowed me to forgo it. I’ll get my blood tested a week before my next treatment and if my counts are low they’ll give me a fast-acting shot that should get my counts up again in enough time for my next treatment. I’m hopeful I’ll be able to avoid taking anymore of the Nuelasta. And yes, it is CRAZY expensive. They charge my insurance $11,000 each time although I believe my insurance only pays up to $4,900 which is still an exorbitant amount for a preventative drug. Thank you again for posting – I’m sure there are many out there that may be suffering unnecessarily and hopefully this will help them as well.

Gloria

Thank you. I was given Neulasta after I said no to it. It has made me so weak and caused severe bone pain, headaches, feeling ill, shortness of breath, and that someone stole my body and made me frail. I feel Taxol will continue to cause this as I still have not recovered after 4 weeks.

Missy

Neulasta is OVER used!! My cancer situation is almost identical to hers! Same age, same chemo treatment, same diagnosis. First dose Neulasta no problem! 2nd dose raised my wbc counts through the roof! Horrible side effects it felt like 3rd degree sunburn on my face,head,neck,back and both forearms! This lasted a week! Theres no antidote for it! Benadryl and Tylenol! I didn’t need the second dose according to my blood work but Dr insisted! Theres no doubt in my mind the reason I had those side effects was because of a too HIGH neutrophil/wbc count!! Third round chemo I had to refuse it otherwise they were going to give it to me again! Let me tell you I feel so much better skipping it this time! IF our blood work is good WHY are they insisting we take these poison shots!! Btw Neulasta is made with/from e-coli! Look it up! Its a money maker plain and simple!!

Christina W

Thank you so much for this info, the shot I have taken for my third time has made me super sick! I’ve been saying that since day one of chemo. I can’t walk or function and think I’m allergic to it. I have every side affect that is shows, it’s very scary!! Reading your post, has made it where I will be talking with my doctor to discontinue the shot. Thank you again for the info. It has made me aware to be more on top of my medical.

Diane

I did have a debate with the Onc nurse wanting to give me Neulasta on the third infusion. My WBC was high before the second infusion at 19, when 10 is top normal. Then just before the 3rd infusion it was 30.8 which is 3times high normal and several other measures were out of range as well. Also kidney function measures were off. Finally she said she would consult with my Onc doc who is very hard to reach. Onc Doc agreed with me and we are skipping the Neulasta on this 3rd round. I am 74 so I fit the criteria for the drug. We will see what the WBC drops to before the 4th round. I already have an enlarged spleen so WBC spikes might not be a good thing.

Last edited 2 years ago by Diane
MELE STOKESBERRY

I hate the effects of Neulasta and have suffered them each of 4 times so far that I’ve had chemo infusion. I have 2 more to go, and I am strongly thinking of refusing it. I am over 65 but have no “health conditions” other than the stage 2 ovarian cancer I’m being treated for.

Anita

I was found to have fallopian tube cancer, stage 1C3. I did read your article and due to the awful bone pain, at the last 6th treatment decided I’d had enough. I’m 74, my blood cell levels were good. I did not take neulasta. My oncologist said it was ok. So far, so good. My weight ballooned to 150.4 Saturday after treatment on Thursday, and today, 5 days later, my weight is 142.8, all fluid retention. I’m done with the chemo. I want to get back to living.

Jason Campbell

I am a cancer patient and big advocate of talking with your doctors and driving your treatment. One note on Neulasta, it can increase lymphocytes and even T-cells which may dramatically increase the immune response and the ability of your immune system to fight cancer and prevent recurrence. I want it when I start chemo again soon.

Bernie Lowe

I’m glad it worked out for you.
I had pancreas cancer in 2019 and had Whipples and 6 months chemo. I had Neulasta with nil adverse reaction it just felt like old age in my hips for 1 day ( I was 55)
Never had issues with wcc, neutrophils or platelets.
However cancer metastasised to my lung in June this year. Chemo is knocking my bone marrow around so my wcc and neutrophils have been low, one drug stopped but levels still low.
Oncologist says I can’t have Neulasta as my regime is weekly. Even if they reduce it to fortnightly apparently that’s too soon .
The accumulative effects of chemo are toxic in on healthy, well people who have no symptoms.
I want to have it and can’t and I hate the thought that chemo may have to stop because of this.
So don’t be scared by the fear of side effects if it’s going to assist your body to cope with the effects of chemo . You need to Wright up risks and benefits and discuss with your Dr. Good luck everyone x

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