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sweetjam View Drop Down
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    Posted: Feb 13 2014 at 11:57am
I searched for this and nothing came up? I started chemo on Monday. They call me the 'reluctant patient' which I am.   They have me on 4 treatments of carboplatin and paclitaxel every 3 weeks. I actually did pretty well during the treatment with the exception of a lot of aching pain at the injection site and the benedryl making me feel cross eyed. I think the dose was a little heavy for me. I really felt great until I got the Neulasta shot. I think it is weird that a 500 pound women or a 100 pound women get the same dose. My husband and I questioned this shot and again I was reluctant to take it. The side effects have been herendous. My hips, knees and feet have ached so bad I can not sleep. It also made me feel very flu like with no appetite at all. It probably doesn't help that I'm going on 5 days with minimal sleep. Does anyone have any recommendations on helping with the pain?   I hope the way I feel is not my new normal. I did take a Claritin with it.

They want you to eat tons of protein but all I want are carbs.   I don't typically eat a lot of carbs. I woke up this morning wanting pancakes and I never eat those. Any one else experience this?

Thanks.
DX 1/17/14 TN IDC, Stage 1 Grade 2, 1.4cm, Age 50, BRCA -, Started Chemo 2/10 C/T, every 3 weeks. Last Chemo 5/23/14. Double Mastectomy 6/23 3/4 nodes all negative. 6/23 final path tumor ER+, PR+,
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Cathieroh Quote  Post ReplyReply Direct Link To This Post Posted: Feb 13 2014 at 1:50pm
Sweetjam--I didn't so much crave the carbs, but I had a sweet tooth attack like nothing else during the chemo and sweets are something that I generally avoid.
I know the Neulasta shot can be a real pain, but it is important for keeping your white count up; fortunately the dreadful SEs are usually relatively short lived. Hopefully they won't last more than four or five days for you. Have you asked your onc for some meds to help with the pain from the Neulasta? It's a reasonable request. Hang in there..there is an end point to it all.
11/07 DCIS lft breast; lumpectomy & rads then 5 yrs Femara.8/13 dx TNBC age 62 StageI gradeII 6mm single focus no nodes. BRCA neg lft mast with DIEP flap recon. 4 rounds Taxotere/Cytoxan
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: Feb 13 2014 at 2:21pm
The flu like symptoms, loss of appetite and craving of carbs is from the chemo, not the Neulasta.  The Neulasta causes bone pain, but it's the pacitaxel that is really causing it as well.  I'm sure of this because I had 4 rounds of A/C w/ Neulasta first, then 4 rounds of Taxol.  I had some bone pain after the Neulasta the first 4 times, but not terrible.  The Taxol is when the terrible bone pain set in for sure.  That's when I went on pain meds after each treatment - a friend of mine that had the same treatment several months ahead of me warned me about it, she said, "TAKE THE PAIN PILLS with the Taxol!  Don't be stupid like me and try and tough it out!  Once I broke down and took the Hydrocodone the days after the treatment my life got so much better!".  So I did, when the pain started after the first Taxol I called my Dr. and picked up some strong pain meds and started taking them around the clock, usually for about 6 days following treatment. 

We should all bow down to the Neulasta, without it we would not be able to take the high doses of these strong chemo's - and with out that treatment our prognosis with TNBC would not be good.  It's rare that I see women on here get raging infections of any kind during chemo - without the Neulasta we'd all be walking around with ZERO immune systems during chemo - it's a Godsend, even with the rotten bone pain.  It's been integral to the increased survival of women with our disease.

Sweetjam, I hope they can get you on some pain meds that help your pain.  And regarding the carbs - my doctor said INDULGE - if you actually feel like eating it during those rotten days following each treatment, she was totally fine with it.  For me it was Mac & Cheese and Ice cream, it's like I was a 7 yr old kid again, LOL.  For me and I think for most people, the worst days are 3-5 days post treatment, that's when it really kicks your butt.  I usually started feeling markedly better by day 7.   And I think "reluctant patient" would describe pretty much every woman that found a need to be here on this board, LOL.  Most of us were perfectly healthy, feeling great when THIS awful thing happened, and the surreal journey of Dr.'s, surgeries, chemo, pills pills pills, rads, etc.  engulfed us before we knew what hit us!  Hang in there! 
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/16 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED!
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Natalie View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Natalie Quote  Post ReplyReply Direct Link To This Post Posted: Feb 13 2014 at 10:32pm
UGGG that Neulasta shot sucked BIG time!!!!
Same with me, the injection was of no issue until  Taxol.
Nothing seemed to work for me too much.
Don't consider not taking it, the alternative to not taking it could put you in the hospital with infusions if your white blood cell count tank. You certainly don't want a situation like that, that could also in turn jeapordize your next treatment.
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TNBC stage1 size 1.8, grade3 no nodes 4/11 Lumpectomy 5/11 4cycles DD A/C 4cycles DD Taxol. Double Mastectomy 12/11 BRCA all neg
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: Feb 14 2014 at 12:03am
there's a reason to look forward to A/C! I think you'll have much less bone paint when you get of the Taxol. And I think you get less Benedryl as well? I may be wrong about that. They wanted me to take steroid pills after each treatment and I hated the way they made me feel. They let me cut way back on those, then stop all together which I was grateful for. But I took the pain pills and sleeping pills (Lunesta) whenever I needed them to get thru it all and it worked for me. My Doc said, you are in pain, and you aren't sleeping.  You need rest and lots of it, take whatever you need to best get thru this grueling treatment. 
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/16 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote MLindaG Quote  Post ReplyReply Direct Link To This Post Posted: Feb 15 2014 at 10:45am
I'm kind of surprised they have you taking the Neulasta shot when you are taking the chemo every three weeks. I had A/C every three weeks and taxol every week and never took the Neulasta shot and never had a low white cell count......never got ill........and never had a problem. As for the benedryl with taxol......my first infusion was horrible and I had slurred speech and could not go to the bathroom without someone helping me.......I talked with a friend from CT who said at her Chemo center if someone got that slammed with the Benedryl they would infuse it over 45 min. rather than the shorter time that is usual. So when I went back for my next taxol I asked them if they ever did that -- no they had not -- so I asked them to try it......I had no problem......I got sleepy and slept for about an hour but that was it. The nurses told me I was famous!! They changed their protocol based on how I did and if someone has a problem with the regular Benedryl they would use this method and it worked great!
Dx TNBC 6/12; age 59; Stage 3, Grade 3; 3.5 cm, 3/10 nodes + chest wall nodes; A/C x4, T x 12 completed 12/12 with PCR, 2/13/13 lump; IMRT Rads x 33 completed 5/22/13 BRCA 1 negative.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sweetjam Quote  Post ReplyReply Direct Link To This Post Posted: Feb 15 2014 at 11:01am
I'm now day 6 out and still experiencing tremendous side effects from what I assume is the neulasta injection.  It appears to be worse at night with pain in my toes, feet, knees and hips.  I also have neuropathy in my fingers and sometimes I can feel it in my face.  They will have to give me pain meds and a better sleeping pill if they want to continue with the nuelasta.  Honestly, has been the worst part of the whole thing for me.  

I got the impression that the nuelasta injection was standard protocol at the Mayo but I may be wrong.  I do wonder why they don't wait to check the count before giving you the shot but they say it needs to be given in 24 hours of the chemo. 
DX 1/17/14 TN IDC, Stage 1 Grade 2, 1.4cm, Age 50, BRCA -, Started Chemo 2/10 C/T, every 3 weeks. Last Chemo 5/23/14. Double Mastectomy 6/23 3/4 nodes all negative. 6/23 final path tumor ER+, PR+,
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