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neutropenic on first chemo

Sunnysailor profile image
19 Replies

Hi - my husband had his first taxotere infusion on the 21st and was admitted to the hospital on the 28th with fever and neutropenia. He went WBC nadir in the hospital on the 29th. The infectious disease doctor was consulted and she thinks his stomach/gut bacteria is infecting him. They are giving him on a ton of antibiotics. I insisted the hospitalist call the on call oncologist since she couldn’t prescribe neuprogen. He showed up and I asked him to consider giving him nueprogen. He was non committal and said he had to ask the hematologist. Half hour later the nurse rolled in with the shot. I think he was a resident. Needless to say I’m concerned about his next 5 cycles if this is happening on cycle one. I asked his treating oncologist about Nuelasta and it was refused on the first cycle saying he would be unlikely to need it. I’m insisting that he gets it going forward.

Up until APC my husband is relatively healthy and a young active 61 y/o.

I’m assuming his chemo is going to be delayed.

My question is has anyone else been through this and any things to be aware of. Questions I should be asking. Thanks for all your advice and support.

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Sunnysailor
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19 Replies
Tall_Allen profile image
Tall_Allen

At the top hospitals in my area, neulasta (with claritin) is routine with Taxotere or Jevtana.

Sunnysailor profile image
Sunnysailor in reply toTall_Allen

That’s great, I don’t know if it was insurance or what the oncologist’s thought process is. I’m going to ask him. If things don’t improve we maybe going elsewhere.

Cali3 profile image
Cali3 in reply toSunnysailor

Many insurance plans routinely deny Neulasta for men below 65. Here is what our insurance said

"per patient's health care plan, he does not meet the criteria for neutropenia prophylaxis due to 1) docetaxel is viewed as low risk for neutropenia; 2) his age <65; 3) he has not other major risk factors such as hx of neutropenia or comorbidities."

But if you do get neutropenia, they will cover it for subsequent chemo.

Sunnysailor profile image
Sunnysailor in reply toCali3

Thank you, that’s what I suspected. I’m going to dig into it to see if it’s covered or if ours has this rule too. We are on a fairly decent plan with blue cross.

Now we got a well over six figure hospital bill because the insurance wouldn’t pay the $6k. 🤦‍♀️

positive-thinking profile image
positive-thinking

Sorry you are going through this. My husband is currently receiving the injections but it was not even brought up before he started chemo. I insisted on him getting this and he was prescribed this for each chemo . He just had chemo # 5 of 6 and has not had a great deal of issues and certainly nothing serious. It baffles me why this is not routine for chemo. If I had not insisted who knows how he would have done up to now. Best of luck

Sunnysailor profile image
Sunnysailor in reply topositive-thinking

The funny thing is we are new at this hospital system so they have none of his records. I spent a day creating a spreadsheet with his liver, kidney and cbc numbers for the last three years. He always has run low platelets and one wbc. I specifically brought up Nuelasta in the pre appointment because I was concerned. I’m not happy and going to question his thought process. It’s absolutely terrifying. He is so sick, can’t eat or do anything but lay there. We went on a two mile hike a few days before chemo and it was a breeze for him.

positive-thinking profile image
positive-thinking in reply toSunnysailor

So wrong some of the incompetence, makes me so angry what they put people through. I'm so sorry and really hope you get better care going forward

chips1942 profile image
chips1942

Hi, Went through 7 cycles of Docetaxel late last year. I did not get Neulasta on the first infusion but it was given on all subsequent infusions . Since my oncologist had some concerns about the impact of the chemo on me, he prescribed an 80% dose which he used for the remaining cycles. You may want to ask the doctor if a reduced dose might be appropriate for your husband.

CrocodileShoes profile image
CrocodileShoes

Hi,

I'm so sorry to hear that you'ew going through this. My case is slightly different (and I'm in the UK, so beatr that in mind) I had 3 infusions of docetaxel and stopped, not because of side effects (I had none) but because it wasn't responding. So we switched to a combination of Carboplatin and Cabazitaxel. I had been transferred from my onco who has looked after me for 15 years, to one of the leading clinics in the country. After about a week, I developed neutropenia. Before the treatment, I was like your husband - going on vigorous 2 mile walks, and feeling great. The neutropenia became sepsis and I have to rely on my wife's recollection of that period because I was in a very bad way.

Weirdly the leading research hospital, seemed oblivious to my condition and wanted to press on with the second infusion. At this point, my onco stepped in and said 'there's no way he's going to continue until he shows some sign of improvement'. I'm afraid that, 4 months down the road, I still haven't reached that point. I still have muscle weakness and chronic fatigue.

So I would support your decision to - at the very least - delay the treatment, until he regains some strength and energy. I ended up needing a blood transfusion, but I'm still dealing with the long-term consequences. QoL was the last thing on my mind going into chemo. Now, it's my #1 concern.

JD-guy profile image
JD-guy

Hello, my experience is similar, I was not given Neulasta on the first infusion, end up going to the ER with a fever. Was given an injection was back on my feet a few days later. Needless to say I was given Neulasta the rest of my infusions and I did not have that issue. Hope things go better for you all.

All the best.

TTJJ1 profile image
TTJJ1

Several days after first infusion of Chemo- Taxotere, admitted to hospital for fevers, neutropenia and diarrhea. Acute care clinic noted to have fever 101.2, neutrophil count of 520 and diarrhea. CT imaging of abdomen and pelvis were obtained which showed inflammation of your colon concerning for ischemic colitis. On arrival to hospital surgery was consulted and the surgery team ischemic colitis was unlikely given clinical presentation and felt colitis is consistent with neutropenia. During the admission treated with IV antibiotics (cefepime and flagyl) and on discharge rotated to oral antibiotics (levaq uin and flagyl) to complete a 5 day course for infectious colitis which resolved. Never given Neulasta.

MO reduced chemo dose for the next two infusions. Given no real response from chemo I was then eligible for Pluvicto.

You may want to check with MO about dose reduction.

billd50 profile image
billd50

I received 6 rounds of docetaxol. I was deathly sick as a result of neutropenia during

my first round. I ended up in the emergency room. I received neulasta for the next 5 rounds. Don't take no for an answer. They are resisting because of the cost of neulasta, so don't

want to give it on the first round. They wait to see if you need it.

This is serious stuff.

skyrgirl profile image
skyrgirl

My husband (81) went through chemo with docetaxel + carboplatin. Like your husband, he developed neutropenic fever after the first infusion (hospital stay for sepsis). Subsequently, his dosages were decreased for the remaining cycles. Cycles 2 and 3 were uneventful, but both after his infusions for cycle 4 and 5, he developed neutropenic fever again (hospital stays for diverticulitis). For all cycles Neulasta was given. In later cycles he also received preventative antibiotics, but to no avail. He never did the 6th cycle, because of his weakness after so many hospital stays. Doing well now more than a year after his last (5th) cycle.

Islandboy2021 profile image
Islandboy2021

My first chemo treatment in 2017 I was not offered Neulasta and I also got an infection and was hospitalized for 5 days. They had to give me full spectrum antibiotics because they didn't know what the infection was. After that they prescribed the Neulasta. I believe they don't offer the Neulasta up front here in Canada because they want to see if the patients can handle the drug without it and its expensive.

I am doing chemo again and I made sure I was going to have Neulasta. I had to get my extended medical to cover the costs. It is crazy that they do a wait see approach with these toxic drugs.

j-o-h-n profile image
j-o-h-n

So for medical insurance purposes........... us policy holders are considered fucking guinea pigs. "What a revoltin' development this is!" (Thank you William Bendix who played Chester A. Riley).

Good Luck, Good Health and Good Humor.

j-o-h-n

jtlienwis profile image
jtlienwis

After my first infusion I developed fever (high temp). Called the nurse support line and they said go to the nearest hospital. Not good advice as you need an oncologist on call, so you need a big hospital.. Sat in the local hospital for 4 hours while they figured out what to do. They put me in an ambulance to a big hospital. During the trip on the ambulance they measured my temp and said it was fine.

Got to the big hospital and they measured my temp and said it way too high. Diagnosis was neutropenic fever. I asked them to measure my temp with a good old fashioned thermometer. The reading confirmed the one they took with the electronic one. Stayed in the hospital for several days.

They can give you the shot the day after or you can use the computer controlled one that gives you a shot the next day using an electronic timer. I prefer just going the next day as I was worried I would knock the electronic one off rolling around in bed at night.

I had 5 more treatments. All with the neutrofil booster shot. That was nearly 5 years ago. I just turned 70, but am under hospice care.

Sunnysailor profile image
Sunnysailor in reply tojtlienwis

Thanks for your response. I’m sorry you’re on hospice. Prayers for you.

CrocodileShoes profile image
CrocodileShoes

Hi Sunny Sailor, did you reach a decision on continuing with or without the Neulasta? It feels like a dilemna: there's no doubt that chemo can have a profound impact upon the PSA/Tumour burden, but at what cost? Just surviving seems like a poor reward for the risk involved.

Sunnysailor profile image
Sunnysailor in reply toCrocodileShoes

We got the Nuelasta. He had his second chemo round 3 days ago. The Nuelasta aUro administered yesterday afternoon. I’m praying it works. We are not entirely happy with our urology oncologist. He seems overwhelmed with patients and his teaching/research duties. He literally didn’t know why my husband was hospitalized. As he left the chemo area he said “if you would have had a nuetropenic fever that would have been bad” I wanted to yell at him, that’s why he was admitted. Our oncology nurse seemed perturbed because they didn’t have the Nuelasta approval. She had to chase it down while he was getting chemo. I’m seeking alternatives for his treatment. My husband wants to get it done where we are at.

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