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SOS Neulasta is killing me...any suggestions?

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DPage View Drop Down
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    Posted: Apr 11 2011 at 9:55pm
I had my first treatment of TC on Wed. Minimum
Side effects and still feel very good. On Thursday, I received the Neulasta shot. Thought everything was going ok, but on Sat. Bone pain started, major headache and some fatigue. On Sunday, the headache disappeared, but still have bone pain. Today it is Monday night and it feels like my legs are going to fall off. My lower back is sore too.

Any suggestions????? Will it get better or is my tennis match this week going to be a no-go? I am a tough nut and have a high pain tolerance, but this pain is horrible!

Also, does everybody take this shot? The dr that I saw prior to my oncolosist said that a lot of patients with my drug treatment take antibiotics vs Neulasta. My doctor said, since my insurance will cover the cost (only 80% of cost) that I will get the drug :-p However, as May 1 my insurance changes and the insurance company already said, they will not cover the treatment. Therefore, my next treatment will be covered, but the next two will not.

Big hugs to you all!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote TNBC_in_NS Quote  Post ReplyReply Direct Link To This Post Posted: Apr 11 2011 at 10:07pm
Hi DPage:
I am sorry your are having that pain with Neulasta!!! It is horrible! I had Neupogen which is the same thing.  It is to keep your WBC's up because the Taxol strips all the goodness away from our blood to get to the tumor & cells... I heard some took Claritin with it and that worked for them.  I took Advil and the pain was crippling.  Better to take the Neulasta if you can it will keep your schedule on track with chemo. 
 
About your insurance, I am in Canada but Insurance should be the same no matter where you live.  If you are having problems getting it covered, discuss it with your onc and have his/her call them to say that you NEED this medication, end of story.  They try to dismiss your requests but in the end, will have to comply with the  physicians.   Keep us up to date on how you make out.
Cheers, Helen in NS
Diag@57TNBC04/092.5cm Lquad 05/09 TCx4Radsx30CT03/01/10 FU03/31/10ClearBRCA- 01/2011 RTNBC BMX 06/14/2011~2013 clear
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Post Options Post Options   Thanks (0) Thanks(0)   Quote johnmc Quote  Post ReplyReply Direct Link To This Post Posted: Apr 11 2011 at 10:12pm
Claritin 10mg - regular over the counter Claritin. Start taking day of shot and take once a day for about 5 to 7 days after shot. It should help a lot.
 
John
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Apr 11 2011 at 11:12pm
Yes, Claritin and try a heating pad or warm/hot baths.

Donna
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote zoomommy2 Quote  Post ReplyReply Direct Link To This Post Posted: Apr 11 2011 at 11:20pm
Diane,
That's crazy not to cover Neulasta or Neupogen!  You will definitely need it for your wbc to recover enough to get chemo on schedule.  Yes, take the Claritin.  I'm sorry you have so much discomfort with this chemo.  Praying things will improve for you.
Lee in Denver
dx6/09,stageII,gr3,(L)mastectomy 7/09,ACx4,Taxolx7,Avastin study,gall bladder surgery 1/10,4/11 Stage 4, mets to lung, 4/11 Started Taxotere and Xeloda, 5/11 Taxotere stopped, off Xeloda
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Apr 12 2011 at 12:07am
Dear DPage,

I would do your best to continue with the Neulasta...I think you have received good advice above but please try to continue with the Neulasta as it is, according to my unprofessional understanding, the best way to get your WBC where it should be....if your WBC goes too low you will be unable to get the chemo which is not a good idea.

As my sister, Helen Smile, has advised your oncologist should be able to get the insurance company to pay for the Neulasta...I assume your insurance company will pay for two more cycles of chemo so logically the Neulasta, that is the recommended (and there is much literature on this) accompanying treatment should be approved...

Insurance companies often say no but it is our job to fight for what is right.

good luck to you!!!

and please try to find the beauty in each day..

all the best,

Steve
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Post Options Post Options   Thanks (0) Thanks(0)   Quote dmwolf Quote  Post ReplyReply Direct Link To This Post Posted: Apr 12 2011 at 12:25am
DPage, I had the awful bone pain with Neulasta exactly once, and I could not even believe how much it hurt.  The intensity just blew me away, reminding me of labor pains near transition.  The good news is that just because you are feeling pain during one cycle doesn't mean it will be back for the next.  I was terrified that the next Neulasta would hold more of the same, but it didn't.  I never felt that awful pain again.  So don't think that it is inevitable that you will respond to the drug this way.  Still, just in case, you might want to have some serious pain meds around, like percocet or at least tylenol with codeine. No-one should experience pain like that.

Good luck. We are here for you.
love,
d
DX 2/08@43 stg II IDC; gr2,0 nodes. Neoadj chemo, first ACx2 (fail) then CarboTaxotereX6(better). Lump, Rads done 11/08; Clodronate. False alarm queen: PetCT lung & TM marker. NED. PBM w/recon 9/10.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote snugltz Quote  Post ReplyReply Direct Link To This Post Posted: Apr 12 2011 at 2:52am
I too had horrible pain from the Neulasta.  Doc says it makes the marrow in  your bones swell which causes all the aches.  Dont know if that is so.  Did no research.  But many I know have to give the shot themselves (including me) because insurance wont pay to have it done.  I had it delivered to me as I got my chemo.  Has to be refrigerated.  They sent it with ice packs.  It is an extremely expensive shot.  Many thousands of dollars.  Forgot the exact amount.  But it does work. 
1 cm, 0/2 neg nodes, lumpectomy 6/16/10, cytoxin/taxotere 4x every three weeks, rad start 11/8 33X
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Barbi Quote  Post ReplyReply Direct Link To This Post Posted: Apr 12 2011 at 9:01am
I had some pain with the first 2 shots and just a little with the third.  I take a zyrtec (same family as claritin) and aleve prior to and for 24 hours or so after the shot.  I did not get the shots with taxol, but am getting them with my AC treatments.
Barbi
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Post Options Post Options   Thanks (0) Thanks(0)   Quote DPage Quote  Post ReplyReply Direct Link To This Post Posted: Apr 12 2011 at 5:01pm
Thanks everyone for the great information. I will be armed with Claritin for the next round. Last night I had some pain killers from my surgery that I never took and decided last night it was time to give those babies a try. I am happy to say, that the drug worked great and my legs became usuable and normal again. However, the drug was suppose to make me sleep, instead I did not sleep at all and heard Radio Disney songs in my head all night. Stern Smile I am hoping that tonight will be better and if I have any songs going through my brain, it will at least be IL Divo who not only sound great, but are awesome on the eyes too!!!!
 
Also, I send at email to my Oncologist Nurse to let her know that my new insurance is squacking about Neulasta. I hope to get everything resolved before my third treatment in May.
 
Big Hugs to you all!!!!
Diane
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Post Options Post Options   Thanks (0) Thanks(0)   Quote christina1961 Quote  Post ReplyReply Direct Link To This Post Posted: Apr 12 2011 at 5:18pm
I take pain killers for the neulasta pain- the second shot was not nearly as bad as the first, however, and I didn't have to take very many - only 2 1/2 oxcodones 2 days. I just got my third shot about an hour ago.
2.5 cm TNBC, BRCA-, diag. 2/11, neoadj chemotherapy, uni MX, y2cm,2/16 nodes, RCBII, tumor retested 5-10%ER+,PR-,Her2-, rads, clin trial eribulin 10/11-2/12, tamox.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote tninalabama Quote  Post ReplyReply Direct Link To This Post Posted: Apr 12 2011 at 6:05pm
DPage,
 My pain was indescribable the first time in March. The nurses told me to use regular Claritin, I also got Lortab. All I can say is that it knocked the edge off and nothing more. I still hurt. With your insurance, they should pay for Neupogen, since they do not pay for Neulasta. I am going for my third Abraxane tomorrow with Neulasta on Thursday. Joy, oh joy.
Dx 11/07,stII bgr3,1/8+, metaplastic, recurrence 11/09, lymph dis 12/13+ 07/10, rad,x28 9/10,02/11 mets

BRCA neg
5-FMC since 03/12
PET 04/12,no progression
Bone scan clear 06/12
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: Apr 12 2011 at 10:24pm
Diane, I found that when my insurance company squawked about something that the Finance Director at my onc's office was often able to step in and resolve stuff. Her knowledge of the inner workings of insurance companies allowed her to put a quick stop to their bs that they used on me. And on the sleep stuff, I found it was easier to learn to take cat naps where and when I could. An 8 hour sleep is not something I've seen in 3 years now and I used to be an overachiever sleeper! I found that late night books on tape & radio shows that told stories both helped.
dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
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