If you had to do it again - would you choose Neulesta or low WBCs? Feels like doctor is making me ch

dbhadra · February 2011

I met with my oncologist last week who said she "could" give me Neulesta if I "wanted it" but, due to bone pain, hassles of getting extra shots and expense, she had not been planning to. I;ve done 8 weeks of 12 of Taxol so far with no drop in WBCs, but my next round of FEC all three drugs are very likely to drop my white blood counts. It's a little disconcerting that she seems to want to adopt a 'wait and see' policy...well, yes, we know your counts will come down, but they'll come up again before chemo, and most likely you won;t get sick. I told her I would be more comfortable doing something proactive like Neulesta to keep my counts up in the first place, especially as I have two school age children and work at a community college, so we are all exposed to a lot of people and potential germs.

Any thoughts on this? Have people been through Neulesta vs. getting sick during chemo? H

as anyone else had to make this same decision whether or not to take it? Anyone have similar discussions with their doctors?

I'm leaning right now towards telling her that yes, I want it - my main reason is that I know that otherwise I am going to live in total anxiety during the months I'm doing the FEC...and I just don;t want/can;t deal with any more anxiety right now.

I guess part of my frustration is that I feel like she's leaving it up to me - and that makes me feel like if I have a bad reaction to it, it's somehow my fault for "choosing" it.

Does any of this make sense or am I just rambling?

Laura

carkris · February 2011

Neulasta does not stop your
Neulasta does not stop your white blood count from dropping. it just makes it recover more quickly by stimulating the bone marrow to produce the white blood cells. I thought it kept a steady state but it doesnt. I found this out after being in the hospital with dehydration. and my white blood cell count was 1.2 . I did not have what you had I had adriamycin and cytoxin and taxol. with neulasta the cells come up within 10 days or so.
I did not have too bad pain withneulasta. shoulder and arm pain, but did not need meds.

CR1954 · February 2011

My oncologist....
My oncologist really didn't even ask me, as I recall. I just got the injection after chemos.

About 36 hours afterward, I would get bone pain in my legs, which lasted for a couple of days. But my onc. gave me steroids to ease the pain, & it was better.
Not everyone has side effects from it.

Yes, I would have the Neulasta again. I pretty much would do what my onc suggested because I trust his judgement.

CR

Hippiechick58 · February 2011

CR1954 said:
My oncologist....
My oncologist really didn't even ask me, as I recall. I just got the injection after chemos.

About 36 hours afterward, I would get bone pain in my legs, which lasted for a couple of days. But my onc. gave me steroids to ease the pain, & it was better.
Not everyone has side effects from it.

Yes, I would have the Neulasta again. I pretty much would do what my onc suggested because I trust his judgement.

CR

I have my last
I have my last taxol/neulasta tx on 3/2 or 3/8 depending on my WBC counts. I have had neulasta after every chemo now for 4 months. I have had some pain issues which we resolved with oxycodone and Celebrex. Even though it caused me severe pain every time, I would still opt for the neulasta. I have a weakened immune system so for me It was a non-issue.

I'm sorry your onc is making you choose, that doesn't seem right. And YES, I know that the shots cost $7,000.00 each. But that shouldn't be the deciding factor either.

I will say a prayer that you get the neulasta. Just make sure you get a rx for the pain, even if you never get pain, it's still good to have something on hand.

Be Well,
Dianne

PinkPearl · February 2011

Good Questions
I am not taking the Neulasta shots, at least not yet. My onc. doesn't routinely give them unless your counts don't come up on their own I think. Since reading so much on here about them; I wondered why and why not? I am taking TC for 4 rounds and on the first round one of my white cell counts dropped to 0.24 out of 1.00 the week before the next chemo but by chemo time it was back up in the 7 days wait. I didn't get sick but noticed my gums were hurting more so I was more diligent with them and I was extra careful with sanitary hands etc but I did still go out, eat out etc. Maybe I was lucky but I didn't want flu like symtoms from Neulasta either. I know you will make the best decision for you and FEC. Just wanted to share my experience with no Neulasta.

( One more point--the only way I knew my count that one week is that I was scheduled for a expander fill and the PS office checked the count but the count was too low for it so I cancelled all of the rest until after chemo is over. )

CypressCynthia · February 2011

When I had chemo 24 years
When I had chemo 24 years ago, there was no neulasta. My WBC dropped to zero and I had to skip a month of chemo to wait for it to come up. I also fainted (drop dead sudden faint) in front of my daughter who was then only 4 and terrified. My hemtocrit was fairly normal, so I have always attributed this to the WBC and chemo.

If I had had neulasta offered, I would have taken it. I hated, hated, hated skipping chemo.

dyaneb123 · February 2011

CypressCynthia said:
When I had chemo 24 years
When I had chemo 24 years ago, there was no neulasta. My WBC dropped to zero and I had to skip a month of chemo to wait for it to come up. I also fainted (drop dead sudden faint) in front of my daughter who was then only 4 and terrified. My hemtocrit was fairly normal, so I have always attributed this to the WBC and chemo.

If I had had neulasta offered, I would have taken it. I hated, hated, hated skipping chemo.

It was not presented to me
It was not presented to me as a choice either. I was just sent the next day after chemo for the shot. If you have insurance, it will be covered, so who cares how expensive it is.
My gosh, one dose of Emend was like $3,000.I wouldn't have wanted to skip that either! Thank goodness for insurance. If you are not insured, then I know I wouldn't be able to afford it,but if that isn't an issue, and you want to try it, tell the Onc. to schedule it for you. I never suffered any bad side effects from it. Claritin is supposed to help with the bone pain.
Dee

Gabe N Abby Mom · February 2011

Another option that might be
Another option that might be worth asking about is Neupogen. It is a cousin to Neulasta and also works with your bone marrow to increase the WBC. I was prescribed the Neupogen and took it as seven consecutive injections, one a day. I administered the injections myself, so I didn't have to return to the chemo center every day. (They also said my hubby could have done them for me, but he doesn't like needles.) I never had any issues with my WBC throughout my chemo treatments.

I did have some issues with bone pain during the first round. But then I found out through the pharmacist that the manufacturer recommends claritin for the pain. I took the claritin starting the day before the shots and continued a couple of days after the last one...and no more bone pain!

I don't know about the cost of Neupogen vs Neulasta.

lynn1950 · February 2011

I didn't have FEC, I had AC
I didn't have FEC, I had AC and then T, and like others, Neulasta wasn't suggested as a choice; it was a given during my AC treatments. Then, when I began Taxol, I no longer had the Neulasta injections; instead I was taught how to give myself Neupogen injections. It was all just part of the routine. I must say, my WBC stayed up and I didn't get sick, so it worked. I didn't have the pain that others have mentioned, but I was never able to separate what was my reaction from the chemo to what was a reaction to the Neulasta. Hopefully, someone who has FEC and Neulasta will chime in.

Rague · February 2011

I had Neulasta the day after
I had Neulasta the day after each A/C. I had no pain from them at all - they just put me to sleep almost to the minute 2 hrs after injection for 2 hrs. It was never suggested to get while on the 12 weekly Taxol.

We're all different!

Susan

missrenee · February 2011

lynn1950 said:
I didn't have FEC, I had AC
I didn't have FEC, I had AC and then T, and like others, Neulasta wasn't suggested as a choice; it was a given during my AC treatments. Then, when I began Taxol, I no longer had the Neulasta injections; instead I was taught how to give myself Neupogen injections. It was all just part of the routine. I must say, my WBC stayed up and I didn't get sick, so it worked. I didn't have the pain that others have mentioned, but I was never able to separate what was my reaction from the chemo to what was a reaction to the Neulasta. Hopefully, someone who has FEC and Neulasta will chime in.

Neulasta, Neulasta, Neulasta
And I'll tell you why. I had 6 rounds of TAC. I got the Neulasta routinely after the first five treatments. My onc. said--you've done so well, would you like to skip the last Neulasta? I said, sure. Well, after the 6th and final round of chemo, with no Neulasta, I ended up in the hospital for 5 days with a neutropenic fever and infection of unknown origin. My white count was dangerously low. I had to get 5 days of IV Vancomycin and Leviquan. My counts finally came up to a safer (but still not normal) level and they let me go home. How I wished I had taken that last Neulasta.

But, that's just my story. Good luck in whatever you choose to do.

Hugs, Renee

Double Whammy · February 2011

Rague said:
I had Neulasta the day after
I had Neulasta the day after each A/C. I had no pain from them at all - they just put me to sleep almost to the minute 2 hrs after injection for 2 hrs. It was never suggested to get while on the 12 weekly Taxol.

We're all different!

Susan

2 out of 4 cycles
I had Neulasta shots my last 2 cycles of Taxotere and Cytoxin. My white count was always fine prior to chemo, but every cycle I developed some sort of infection and low grade fever, so my oncologist decided I should have it. Still got fevers and "mystery" infections (accompanied by HIGH WBCs and left shift), so I'd say it didn't do any good and was likely a waste of $$ for my insurance (the cost was around $4K). I had absolutely no side effects, maybe a little more achey but it really didn't seem to make a difference in how I felt.

I, too, worried about why it wasn't prescribed from the get go (seemed like just about everyone else had it) and have no idea why not except I do know my oncologist didn't want to do it unless I needed it. I also did not have a port and my veins held up fine, but maybe that's because I had only 4 cycles (that was enough!).

Oh, your question was would I choose Neulasta. I probably would have if given the choice because everything is so unknown and scarey and we don't know how we'll react to chemo. Having had it, I really think I would have been just fine without it, but maybe I would have developed a more serious infections . .

As Susan says, we're all different. Different in the types of bc and different in how we react to the different treatments we receive.

Suzanne

ms.sunshine · February 2011

Double Whammy said:
2 out of 4 cycles
I had Neulasta shots my last 2 cycles of Taxotere and Cytoxin. My white count was always fine prior to chemo, but every cycle I developed some sort of infection and low grade fever, so my oncologist decided I should have it. Still got fevers and "mystery" infections (accompanied by HIGH WBCs and left shift), so I'd say it didn't do any good and was likely a waste of $$ for my insurance (the cost was around $4K). I had absolutely no side effects, maybe a little more achey but it really didn't seem to make a difference in how I felt.

I, too, worried about why it wasn't prescribed from the get go (seemed like just about everyone else had it) and have no idea why not except I do know my oncologist didn't want to do it unless I needed it. I also did not have a port and my veins held up fine, but maybe that's because I had only 4 cycles (that was enough!).

Oh, your question was would I choose Neulasta. I probably would have if given the choice because everything is so unknown and scarey and we don't know how we'll react to chemo. Having had it, I really think I would have been just fine without it, but maybe I would have developed a more serious infections . .

As Susan says, we're all different. Different in the types of bc and different in how we react to the different treatments we receive.

Suzanne

Oh the Neulasta shot
My dr. told me she wouldn't treat me without my consent to take the shot. She told me that the chemo was hard enough without me being sick with infections due to low wbc. If given the choice I would have taken it.

pinkkari09 · February 2011

Not an option for me. My
Not an option for me. My Onc. pretty much said I will return the next day for the neulasta shot and it was never presented as an option. Although the shot causes pain, my WBC were always good. Like Dianne said, keep pain pills on hand. Being able to finish my treatment made it worth the pain.
Miles of Love,
~Kari

If you had to do it again - would you choose Neulesta or low WBCs? Feels like doctor is making me ch

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