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zacar View Drop Down
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    Posted: Nov 15 2011 at 3:54pm
Hi.  Has anyone been on this chemo?  I'd like to hear your experience.  The doc wants to do this with cytoxan.  Cytoxan didn't work the first time.

Love,

Caryn
DX 11/07 age 49, Stg 1, Gr 3, 1.1 cm, lump, 0/1 nodes, BRCA-,TC x 4, 37 rads, 2/08, 1/09,recur to axilla nodes 5/10 recur in mediastinal node,stage iv, 09/10 carbo/gem/parp, 2/11 NED, 3/11 stg iv IBC
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Nov 15 2011 at 5:27pm
Caryn,

I believe Kim (PinkWarrior) had this chemo the first time around.  I hope she sees your question and give you her experience.

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 Pink Warrior Quote  Post ReplyReply Direct Link To This Post Posted: Nov 15 2011 at 6:47pm
I had one dose of adriamycin and just absolutely could not tolerate it so I was switched to epirubicin, which I believe is an identical drug but known to have gentler SE's.  Adriamycin was give IV push and the epirubicin was a regular IV infusion.  Both drugs are red like fruit punch.  I also had Cytoxan with both E and A.

I remember the main thing was feeling wiped out.  I slept the best part of 3 days after my infusion.  It usually hit me about 24-36 hours after infusion and I just made sure I kept my fluid intake up, kept Tylenol on hand and kept my anti nausea pills on schedule.  And sleep.  It also helps if you eat something.  No matter what it is, I always felt a little bit better if I ate something - even crackers or dry toast and tea.  Usually after the third day I was able to function fairly normally again and just continued to improve after that.  Once the SE's started to wear off, they were gone pretty quickly.

xo
Dx:10/09,IDC Stg 2,Gr 3,TN
BRCA 1&2 -
Partial DD EC/AC
Local recur 11/10
BMX 12/10 Right proph
TC x 4 Rads x 33
9/11 Skin mets, mediastinal & hilar nodes
Abraxane/Avastin
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Post Options Post Options   Thanks (0) Thanks(0)   Quote BamaRachel Quote  Post ReplyReply Direct Link To This Post Posted: Nov 15 2011 at 7:17pm
I had four treatments of Epirubicin and Cytoxan together.  Epirubicin was an IV push for me (just like Adramyacin, I think).  I felt fine on Days 1, 2 and half of Day 3.  Then I felt pretty bad for days 4 and 5.  I didn't suffer too bad from nausea -- took my at home nausea meds.  The third treatment was the worst for me -- bad mouth sores and yeast (mouth and elsewhere, LOL).  My blood counts dropped dangerously low after treatments 2, 3 and 4 (maybe first one too, but I didn't know it).  That usually happened on days 7-9.  Wound up in hospital after treatments 3 and 4.  Hair came out around the 2nd treatment (though I buzzed it before it could all fall out).  Food had no taste (still doesn't), some metallic taste.  Biotene toothpaste and mouthwash and gel helps!!  Stomach issues:  For me it was a balancing act between taking meds to prevent constipation versus things to help with diarrhea. 
DX 7/5/11, TN Invas; Lump w/clear marg., 7/21/11; Stage 2A. Grade 3, 2.6 c; 0/6 nodes; TX 8/22/11 4DD E/C; 4Taxotere; Chemo ended 1/3/12; 33 Radiation Treatments, ended 3/15/12.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote tninalabama Quote  Post ReplyReply Direct Link To This Post Posted: Nov 16 2011 at 1:04pm
I also had Epirubicin/Cytoxan my first go round. That and the following 4 rounds of Taxotere kept me from recurring for almost two years. The side effects were all that Rachel said. I lost my hair before the second dose and went into menopause after the second dose. The steroids with my infusions kept my running around for a couple of days, then crash for 2 to 5 days. 

Pam
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 dmwolf Quote  Post ReplyReply Direct Link To This Post Posted: Nov 17 2011 at 12:51pm
Caryn, did you hear back from Dr C about his assessment of your scans?  Does he still want you to switch treatments?

FWIW, if you have low dose weekly Epirubicin, it should be easy to tolerate, even easier than Abraxane.  The low dose version is a lot like Doxil given in weekly form, which by most accounts is very livable.  (Actually, why not do Doxil?..it's the same class of drug). 

What I would hesitate to do, if this is what he is suggesting, is do the high dose EC given every two or three weeks.  We're talking serious side effects there, and you are sensitive.  (reminder:  I am not an MD...this is just a fellow patient giving her partially informed opinion)

Anyways, remember that YOU decide what you take.  Physicians are just advisers, giving their best advice based on a lot of flawed studies seen through the lens of their years of experience and temperaments.  They make their case, and then we look inside, sleep on it,  and figure out what the best course is for us.

love you,
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 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Nov 17 2011 at 12:56pm
Denise,

Regarding Doxil, it's still not available.  My friend who needs it for peritonneal cancer won't have access for a couple more months.  She had to cut her treatment short this summer and since then has progression.  Stupid, stupid drug shortages.  I bet if the CEO of this company's wife needed it, you'd bet they would speed up production.  Sigh, just frustrated.

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 dmwolf Quote  Post ReplyReply Direct Link To This Post Posted: Nov 17 2011 at 6:01pm
Oh, right!!  Thanks, Donna.  That had slipped my mind. 

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 teamconnor Quote  Post ReplyReply Direct Link To This Post Posted: Nov 17 2011 at 7:29pm
Zacar,

I'm currently on epirub, 5fu and cytoxan. first and 2nd day are ok then after that for 3 days I feel very sick.  More gaggy than anything.  The steroids rev me up too so much I can't sleep until about the 5th or 6th day after treatment.  The 3rd dose which was last week was horrible. I felt completely out of it, sick, everything hurt....not a good experience at all.  It has been one week and I feel good.  This is so much harder on me than my taxol carboplatin cocktail.  But whatever it takes.  Hope this helps.
age 39, BRCA 1,dmast 6taxol/carbo, mest to lung, liver, FEC 8 rounds, xeloda 3000mg&ixempra 6 brain tumors within 2 mths radioactive surg complete,6 brain tum radation radioact surg on new
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Post Options Post Options   Thanks (0) Thanks(0)   Quote zacar Quote  Post ReplyReply Direct Link To This Post Posted: Nov 17 2011 at 7:41pm
teamconnor,

Sounds exactly like a post I would write.  With my medical sensitivities I think I need to skip this one for sure!

Thanks for sharing your experience.

Hugs,

Caryn
DX 11/07 age 49, Stg 1, Gr 3, 1.1 cm, lump, 0/1 nodes, BRCA-,TC x 4, 37 rads, 2/08, 1/09,recur to axilla nodes 5/10 recur in mediastinal node,stage iv, 09/10 carbo/gem/parp, 2/11 NED, 3/11 stg iv IBC
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Barbi Quote  Post ReplyReply Direct Link To This Post Posted: Nov 18 2011 at 9:41am
Caryn, Just a reminder that we all respond differently to each drug.  When I hear some people talk about bone pain on taxol so severe they quit, that's sooo different from my lethargic, no appetite, yuchy feeling it is hard to relate. And I hear some talk about severe SE with abraxane and others with none!
 
You've had a hard battle with SEs on these poisonous drugs they give us.  Just wanted to throw that out there so you don't give up on trying some of them.
Love,
10/10,age49,St3,gr3,5+cm,1 node,BRCA-,T+Cisplatin+Rad0001(or placebo),Lump 1+cm,AND 0/15,AC,rads finished 7/6/11.Mets bone, liver,mamm node 8/11,abrax/tigatuzamab failed.Started bicalutamide 11/16/11.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lulu Quote  Post ReplyReply Direct Link To This Post Posted: Nov 18 2011 at 8:00pm
i had epirubin x4 followed by CMF x4 following my primary diagnosis of TNBC.... i was a bit faitigued , hair loss around day 14-17, gritty eyes, reflux, taste went funny. on about day 2 to 8 i felt totally rubbish, bit nauseated day 2-4 but then felt better till next cycle.

on the CMF afterwards developed mouth ulcers, and major constipation as well as continueing gritty eyes and worsening reflux/indigestion.

this time on taxotere and carbo for my recurrence.

lulu x
04/06-13mm,ER+, gd1, stg1,R WLE, rads
05/09-19mm,TNBC,gd3,stg1,LVI,L WLE,E-CMF,rads
01/10-BRCA2+ c.2409T>G
09/10-TAH&BSO
08/11-IPL nodes -L WLE- tax/carbo, Rads
08/13-R lung & LN mets. ENCHANT trial
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Debris Quote  Post ReplyReply Direct Link To This Post Posted: Nov 30 2011 at 10:35pm
Hi Caryn,

I'm on the same regimen as TeamConnor, F E C. I've had a harder time with this than any other chemo. Been in hospital twice, and today had to have 2 units of blood for very low hemoglobin. Had round 4 yesterday.

However, also had first scans yesterday, since starting this chemo, and the results are very good so far. All nodes seem to have resolved, the "shadow" on the spine has disappeared, and the neck issues have greatly improved. So I'm willing to put up with the really bad nausea, fatigue, weakness, etc., for the good results.

(I still have a mysterious something going on in my lung - the thought is infection/inflammation or abscess. More investigation needed.). My voice is still weird, and my neck is still inflexible.

Wish you all the best in your choices. This one is hard to do, no doubt about it.

Take care,
Deborah.

Edited by Debris - Nov 30 2011 at 10:36pm
4/12 Xeloda/Tykerb
2 Carboplatin
12/11 Dx IA
9 Gemzar/Taxotere Dx IBC:FEC
5 Ixempra/Sprycel
2 25 Rad
10/10 BRCA1-/2suv
9 NED
6 Stg4 Grd3 many nodes no Sx/Rad. Taxol/Avastin
06/08 Dx DCIS 0/SN Rads/AIs
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Nov 30 2011 at 10:40pm
Deborah,

I'm so encouraged by the scan news.  May the FEC keep working!

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 suec Quote  Post ReplyReply Direct Link To This Post Posted: Nov 30 2011 at 10:43pm
Caryn, as you see below, i got fec as my first line after surgery and it worked for nearly 3 yrs prior to mets.  I lost hair but otherwise don't recall it being so terrible.  But we all know, it depends on the individual and likely at what stage in all these toxins one gets the treatment.  hope it works for you.  suec
tnbc 3b: partial mas 5/06; 6 rounds FEC; 36 rad; 05/09-mets to bone; xeloda, avastin, zometa; gemzar & avastin; rads to hips; 8 mo on methotrexate+5fu; 5/11 mets to liver/lung; halevan fails;carb&Abrx
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Post Options Post Options   Thanks (0) Thanks(0)   Quote stardog Quote  Post ReplyReply Direct Link To This Post Posted: Dec 26 2011 at 11:19am
BamaRachel, I am a newbie to this TBNC journey.  I have just completed 12 treaments of Abraxane and tolerated them very well.  I lost my hair, of course, but have done really good. Now I start Epirubicin this week, hopefull I will continue with little SE's.  Do you live anywhere near Birmingham?
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Post Options Post Options   Thanks (0) Thanks(0)   Quote BamaRachel Quote  Post ReplyReply Direct Link To This Post Posted: Dec 26 2011 at 4:33pm
Stardog, yes, I live in Trussville.  I am using Dr. Bondly at St. Vincent's.  I'm guessing you must be using another doctor/hospital.  I never had Abraxane.  I started with 4 treatments of Epirubicin/Cytoxan and am about to finish next week my 4th Taxotere treatment.  Then on to radiation.  Are you in a local support group yet?  I've heard great things about the group that meets at ST Vincent's on the 2nd Tuesday of each month, but I haven't gone yet.  I was thinking of starting in January. 
DX 7/5/11, TN Invas; Lump w/clear marg., 7/21/11; Stage 2A. Grade 3, 2.6 c; 0/6 nodes; TX 8/22/11 4DD E/C; 4Taxotere; Chemo ended 1/3/12; 33 Radiation Treatments, ended 3/15/12.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Barbi Quote  Post ReplyReply Direct Link To This Post Posted: Dec 27 2011 at 9:45am
Rachel, Would love to hear any more info about this support group.. I am in Homewood. The First Light group through UAB has nice quarterly meetings as well.
10/10,age49,St3,gr3,5+cm,1 node,BRCA-,T+Cisplatin+Rad0001(or placebo),Lump 1+cm,AND 0/15,AC,rads finished 7/6/11.Mets bone, liver,mamm node 8/11,abrax/tigatuzamab failed.Started bicalutamide 11/16/11.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote BamaRachel Quote  Post ReplyReply Direct Link To This Post Posted: Dec 27 2011 at 10:47am
Barbi, all I know is what I've heard from a friend who has gone.  She says it's a great, supportive group.  They meet the first Tuesday of each month at St. Vincent's Hospital at 12:00.  Lunch is provided.    I had a name and telephone number to call, but at the moment, with all the Christmas stuff around, I can't put my hands on it.  LOL.  I'm pretty sure the girls at the B'ham Hematology & Oncology would have the name of the person and number to call.  Their number is 939-7880.  If I find out anything else, I'll let you know. 
 
I have my last chemo on the 3rd, so the meeting on the 10th will be exactly one week later.  I want to go to the meeting, but it will depend on how I'm feeling, of course, and if my counts/temperature are okay.  I plan to make a reservation.
 
DX 7/5/11, TN Invas; Lump w/clear marg., 7/21/11; Stage 2A. Grade 3, 2.6 c; 0/6 nodes; TX 8/22/11 4DD E/C; 4Taxotere; Chemo ended 1/3/12; 33 Radiation Treatments, ended 3/15/12.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Barbi Quote  Post ReplyReply Direct Link To This Post Posted: Dec 27 2011 at 4:17pm
Thanks. I think I will try to remember this...but I'm not a very good rememberer these days!!
10/10,age49,St3,gr3,5+cm,1 node,BRCA-,T+Cisplatin+Rad0001(or placebo),Lump 1+cm,AND 0/15,AC,rads finished 7/6/11.Mets bone, liver,mamm node 8/11,abrax/tigatuzamab failed.Started bicalutamide 11/16/11.
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