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Kazza View Drop Down
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    Posted: Aug 25 2009 at 6:40pm

Hi

I know I have read some posts re neutropena on this forum but chemo brain not allowing me to find them now.  I got to day 12 and my counts plummeted to .03 ouch!!! So just got out of hosp after 4 days being held hostage -
 
I would like to hear from others who experienced this after their first treatment and did the GSF injections/ or tablets work for subsequent treatments? or did they need to lower your dosage?
 
Just the consultant who would not let me go home scared the c**p out of me saying that with counts that low, I could easily be dead within an hour and he was not prepared to risk my life. (so maybe he didn't hold me hostage!!).  I would prefer not to go there again as I am doing all this to save my life not being me closer to the end. 
 
Would love to hear how you all managed the risk etc without becoming totally paranoid!!!!
 
Cheers
Kazza
dx June 2009
Mas 30/june IDC, TN, Grade 3
3/18 nodes, Stage 2b?? Tum 4cm,2cm and 1cm

Age 39
Ouch - too stubborn for this beast got too much to do!!!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote jadesloge Quote  Post ReplyReply Direct Link To This Post Posted: Aug 25 2009 at 7:07pm
It happened for me after my first treatment. Ended up in the hospital with strep throat. After that I had neulasta shots and did not need to be hospitalized again. Didn't care much for the side effects, but at least it saved me from getting something worse the strep.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote cg--- Quote  Post ReplyReply Direct Link To This Post Posted: Aug 25 2009 at 7:20pm
Dear Kazza,
 
You do not want them reducing your dose or delaying treatment....so take the offer of Neulasta or Neupogen.  I did the dose dense AC and T, and the chemotherapy was every two weeks, I had the Neupogen shots for 5 days in between starting the 3 day after chemotherapy.  I never missed a chemotherapy, never had an infection, and they never lowered the dose.
 
We can help you with the side effects of Neulasta and Neupogen....
 
Accept the Neupogen or Neulasta.
 
Love,
Connie
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Kazza View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kazza Quote  Post ReplyReply Direct Link To This Post Posted: Aug 25 2009 at 10:49pm
Thank you ladies
DO NO DOUBT I do not want them reducing or delaying my treatment.,  I will take the injections but was more concerned if they work??  I want everything they can throw at me - just alittle scary to be told I could die within an hour while I am having treatment.  Just want that little bit to go away..............Picky I know but go figure - I want to live.  I pity my Onc when I meet him on Friday - he has a paranoid but determined patient to deal with, I am looking for answers.  He is however great and I am sure he knows how to deal with my type -
 
I am looking forward to a far better second cycle - if I end up going inside again it will only be the orderly's and lovely nurses at risk!!!!!!!!!!!!!!!!!!I have been reading far too many detective stories since dxLOL.
 
Thankyou glad to hear it all went well and fingers crossed we will get it right.
 
Kazza
dx June 2009
Mas 30/june IDC, TN, Grade 3
3/18 nodes, Stage 2b?? Tum 4cm,2cm and 1cm

Age 39
Ouch - too stubborn for this beast got too much to do!!!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sweetnvmbr00 Quote  Post ReplyReply Direct Link To This Post Posted: Aug 26 2009 at 4:09am
Kazza,
I conquer Neupogen and Neulasta are the beast out there to help with your counts. I did Neulasta through AC and asked to be switched to Neupogen with the  Taxatere, not as painful to the bones just 7 day's instead of one.
Neulasta is very exspensive, mine was $4500/per shot. Even with insurance your portion can be exspensive but there are funds available through Neulast to help pay for it. I was given $3400 from the fund. There is also the Healthwell foundation that can assist if needed. Just some info that no one told me about that I though I would share. Wisih you all the best.
Cathy In South TexasCool
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Autumn10182001 Quote  Post ReplyReply Direct Link To This Post Posted: Aug 26 2009 at 7:30am
My neulasta was 3126.20 per shot...  i am in NY state, 80 miles north of the city...  where is it 4500 per shot..   I had some side affects from the neulasta, but nothing really.. It was the AC that did me in... the taxol is not as bad...   and although my white counts are going down each week, they were in the normal range this week,.... i have 6 more taxol treatments to go... 
DX2/99 Stg I,ER+PR+ Chemo lumpectomy - Neg nodes,rads, tamox,femara. DX4/09, Stg IIB /III, TNBC IDC, Grade III, 2.5CM, mastectomy. 4AC DD,12 wkly taxol,BRAC1&2Neg, Right Mast 11/25/09
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sweetnvmbr00 Quote  Post ReplyReply Direct Link To This Post Posted: Aug 26 2009 at 8:03am
My Oncologist is in Corpus Christi, TX. 
Diagnosed October 23,2008 after prophylactic bi-lat mastectomy in November 2007
5cm node/tumor
ER-/PR-/HER2- FISH confirmed
BRCA1+
Total of 3+ nodes
4 AC/4 Taxatere
28 radiation treatments.
NED
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Loricarol Quote  Post ReplyReply Direct Link To This Post Posted: Aug 26 2009 at 8:44am
Dear Kazza
 
My name is Lori I was Dx in April 09 began chemo of dose dense AC in June. Just finished it! I wanted to reply to let you know that i was hospitilized 3 times with the same thing neutropenia and neutropenic  fevers. As a precaution they kept me as inpatient till my counts came back up. I was also 0.3 and actually once they told me i was 0.0. Of course they freaked out. But i was never sick. So i just went and enjoyed reading or resting till they would let me go back home.
I got through AC and now am on Taxol. It seems to actually be harder on me if you can imagine that?!
Good Luck to you and God Bless you
Loricarol
DX 4/30/2009 IDC, stage 1 ,grade 3,2 tumors,node negative,clear margins ,BRCA negative left breast mastetcomy, 4 cycles of Adramycin and Cytoxan 12 weekly treatments of Taxol start 8/12. No rads.
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Kazza View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kazza Quote  Post ReplyReply Direct Link To This Post Posted: Aug 26 2009 at 1:04pm
Lori
Did they not put you on any GSF treatment? or did your counts drop despite? 
 
Luckily I live in New Zealand - now we might be a bit behind down here but we do at least have an excellent public health system.  I am not sure what the GSF drug they use here is (yet) - it may be a poor cousin to either of the two mentioned BUT it will be free. Get this I even have unlimited health leave from work -so I am fully paid while I go through this battle and DH is fully paid to sit there by my side.  No insurance companies to battle.
 
So really I should stop bitchin about spending a few days in the hosp - even their food is good.
 
I have it soo much easier than most of you - I should be thank full.
Hugs
Kazza
dx June 2009
Mas 30/june IDC, TN, Grade 3
3/18 nodes, Stage 2b?? Tum 4cm,2cm and 1cm

Age 39
Ouch - too stubborn for this beast got too much to do!!!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Loricarol Quote  Post ReplyReply Direct Link To This Post Posted: Aug 26 2009 at 1:43pm
Kazza
 
Yes i had the weekly injections of Neulasta my counts on A/C still fell to near zero except on my very last treatment it was the only one i wasnt hospitilized during. I generally got very low on day 7.
Wow i think youve got a great deal theri where you live. Here you would have to use your sick pay and if it ran out then you would have state disability for up to one year but it doesnt pay even close to your salary.
God Bless
Lori
DX 4/30/2009 IDC, stage 1 ,grade 3,2 tumors,node negative,clear margins ,BRCA negative left breast mastetcomy, 4 cycles of Adramycin and Cytoxan 12 weekly treatments of Taxol start 8/12. No rads.
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Kazza View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kazza Quote  Post ReplyReply Direct Link To This Post Posted: Aug 27 2009 at 1:01am
Hi Lori
Thanks for that I see my Onc in the morning where we will decide how to manage - I guess we will just have to keep an eye on the counts and go to hosp if they get that low...........Still only two more then I get to play with Taxol.
 
Yep I could get state disability here- but it pays approx 50% of what I pay in tax each week, so the above would be unaffordable for me.  The health leave is due to my fantastic employers, unlimited came in about 6 months ago, prior to that we had 5 days only.  Somewhere the gods were looking after me..
 
 
Now I need to get myself better (I have a cold that has now gone to my chest) by Tuesday so I can play round two.  At least when you have neutropena you are so busy hoping your counts come back up in time that the time seems to pass very quickly........
 
Cheers
Kazza
dx June 2009
Mas 30/june IDC, TN, Grade 3
3/18 nodes, Stage 2b?? Tum 4cm,2cm and 1cm

Age 39
Ouch - too stubborn for this beast got too much to do!!!
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Loricarol Quote  Post ReplyReply Direct Link To This Post Posted: Aug 27 2009 at 5:06am
Kazza
 
Be careful and check fevers if over 100.5 sustained you need to call your ONC. And with a cold you must be very careful. With low counts it may be harder to recover from it. On A/C i didnt go around many people. Taxol isnt too fun but it wont be as hard on your counts.
Good Luck today at your ONC. And God Bless!
Lori
DX 4/30/2009 IDC, stage 1 ,grade 3,2 tumors,node negative,clear margins ,BRCA negative left breast mastetcomy, 4 cycles of Adramycin and Cytoxan 12 weekly treatments of Taxol start 8/12. No rads.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote kmartin Quote  Post ReplyReply Direct Link To This Post Posted: Aug 28 2009 at 4:56pm
My counts fell after every round of TAC...on day 7 I was always < 1.0 for the WBC count, with very low neutrophil counts....I was given a Neulasta injection one day after CT.
 
The only time I was admitted was due to persistent fevers, even after the WBC count was rising....you might want to question the admission to a hospital if you don't have a fever or any other symptoms of infection.
 
Hospitals are the worse place to be when neutropenic....too many multi-drug resistent organisms....I'd rather stay home and wash frequently, limiting visitors and resting. I had to call in my temp any time it was > 100.4 F and I was diligent about having the broad spectrum antibiotic on hand, in case it was needed.
 
Question everything...it might save your life.
 
K
Found Lump, 2/8/08
Bx IDC, Stage 2, Grade 3, TN
Lumpectomy, axillary node dissection 3/11/08
4/33 positive nodes
TAC x 4, AC x 1
RT x 33-finished 10/14/08
BRCA 1 & 2 Negative
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Krys Quote  Post ReplyReply Direct Link To This Post Posted: Aug 29 2009 at 10:31pm
Hi Kazza,
I am a kiwi living in Melbourne. I was also hospitalized for low white cells. Only once though. After that gave myself the injection after each chemo. Was all good after that.
I did find the Taxol as unpleasant as the AC in spite of my oncologist telling me it wouldn't be as bad. Publicly funded health care is great. I feel really sorry for a lot of women who have to battle the health care funders etc in other countries.

Am 3 months out from finishing Radio. Feeling fully energized and off to a new job. I found I was able to work full time once the chemo was finished. Worked part time during. My 15 year old still wont allow me to remove the wig yet. I have given him the option of deciding when, as he is the most sensitive to what his mother looks like in the family.Its that 15 year old boy thing - mother is embarrassing at the best of times!
Mastectomy 20th Oct 08
4 tumours 1x2, 2x3 + 1x4 cm
Grade 3, stage 3
Clear margins
2/26 nodes +ve
Scans clear
20 Nov start 4x2 weekly AC then 4x2 weekly Taxol
30 Rads starting Mid march 09
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Loricarol Quote  Post ReplyReply Direct Link To This Post Posted: Aug 30 2009 at 5:18am
Hi Kazza

I just wanted to check in on you and see how you are doing with your treatments? Any more need for hospital? On my 4th and last A/C i finally decided to stay home and away from everyone through days 7-9 and i did   just fine.
As for me im on my third this week of weekly Taxol. It hasnt been easy but the second wasnt as bad as the first so im going to keep trying. My ONC said that if weekly Taxol for 10 more was too much then we could try Taxotere Q3 weeks  for 3 more times. That is the sister drug to Taxol.
Well God Bless
Lori
DX 4/30/2009 IDC, stage 1 ,grade 3,2 tumors,node negative,clear margins ,BRCA negative left breast mastetcomy, 4 cycles of Adramycin and Cytoxan 12 weekly treatments of Taxol start 8/12. No rads.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Julia Quote  Post ReplyReply Direct Link To This Post Posted: Aug 30 2009 at 3:56pm
Originally posted by Kazza Kazza wrote:

I am not sure what the GSF drug they use here is (yet) - it may be a poor cousin to either of the two mentioned BUT it will be free.


I am also in NZ and I was given Neupogen. (And yes, it was free). I didn't pay any attention to numbers - it was intense bone pain in my pelvis that led to my being given it, as I recall.
Diag. 3/09 TNBC, IBC, 55mm.
4 rounds AC, 4 weekly Paclitaxol.
Mastectomy & axillary clearance 8/09. No nodal involvement. 25 doses rads.
2 more rounds of A/C, 6 months low-dose CMF.
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