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Old 10-03-2008, 03:17 AM   #1
Laurieanne
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Benedryl ?

Hi Guys,
Could someone please tell me if I could have an
allergic reaction to herceptin if I've had it 10 times.
Wednesday at treatment I had a serious reaction.
They think it was the benedryl because they had given double the dose. They have been thinking I have been reacting to the herceptin, but now because what happened this time. There telling me it's the benedryl.

The only concern I have with that is the reaction started
about 2 minutes after they started the herceptin. They say it wasn't long enough for the herceptin to even get to me. Today I go in to try again. This time no benedryl, but I'm freaking out. The last time landed me in the ER.

Hope everyone is doing well,
Laurie
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Old 10-03-2008, 05:31 AM   #2
Pam P
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I have no insight into this - I've had herceptin with no problems. I've also had benedryl - no allergic reaction but it always knocked me out for the whole day, so now I don't get it anymore & i've done fine without it. I agree I don't think 2 minutes on herceptin would be enough time ... I hope everything if perfectly normal today.
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6/01 IBC er+ her2+stage IIIb; mastecomy
7/01 AC, taxol; radiation
2/02 tamoxifen
9/02 stage IV bone mets femara
1/03 taxotere/herceptin/aredia
6/03 herceptin, aredia & faslodex
1/04 navelbine, herceptin, aredia
2/05 herceptin/aredia
7/05 xeloda/herceptin/aredia
3/07 xeloda/tykerb/aredia
5/08 taxol/avastin/aredia
2/09 gemzar/herceptin/zometa
7/09 Taxol/Carbo/Herceptin, zometa
10/09 navelbine/herceptin & zometa
2/10 herceptin & tykerb & zometa
4/10 add xeloda &aromasin
10/10 dx with dermatomyiositis triggered by cancer
11/10 restart herceptin, tykerb, zometa
12/10 surgery-place rod in R femur to stabilize bone
1/11 radiation to R femur - 20 tx
2/11 2nd surgery - rod in Left femur
2/11 tx eribulen -- suspended dx brain mets
3/11 brain mets wbr 20 tx
4/11 halaven; discontine 8/11 not working
8/11 radiation to left femur 20 tx'
8-9/11 rad to lower spine
9/11 abraxane/herceptin/zometa
9/12 xeloda/herceptin/zometa
12/12 ablation of liver
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Old 10-03-2008, 07:09 AM   #3
dlaxague
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Hi Laurie,

Allergic reactions can develop at any time (even after many exposures without trouble). Once an allergy has developed, it tends to be worse each time the allergen (thing that causes the allergy) is encountered.

I tried to search to see if allergy to Benadryl is common but most the hits were about giving Benadryl FOR an allergy, of course. However, some did discuss true Benadryl allergy, and some said that most were allergic to the additives in the pill but some allergies were to the drug itself. Was your Benadryl oral or IV?

What are you symptoms when you're having this reaction?

I'm sure that they will begin the Herceptin very slowly and be ready to turn it off immediately if you have any reaction. They may even give you some steroids as preventative. The severity of the reaction depends in part upon the dose so even if you do react to the Herceptin it should be mild. Just trying to ease your mind. Let us know how it goes, okay?

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Debbie Laxague
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Old 10-03-2008, 08:47 AM   #4
Vi Schorpp
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Boy is this timely!

Laurie I can so relate.

I had a very interesting day this past Tuesday. I arrived at my job about 11:00 after running an errand. I worked for about 35 minutes and then got EXTREMELY hot (a major HOT FLASH) and then incredibly itchy. Felt like my clothes were on fire. Decided I'd cool down by putting water on me. Major welts on my face, neck, torso, arms, etc. Then, I got so itchy I wanted to rip off my clothes. About 1000 bumps appeared on my arms (looked exactly like spider bites) and my skin was beet red. I was having an allergic reaction. To what we still don't know!

Since I was all alone (not a typical scenario), it crossed my mind to call the rescue squad, but that seemed a bit extreme. I went to CVS and picked up a box of Benadryl tablets , but couldn't find the liquid. I asked the clerk to see the pharmacist and I asked him if he had anything more fast-acting. He said YOU ARE GOING TO THE HOSPITAL! He called the rescue squad and then he gave me 25 mg. of Benadryl orally. The rescue squad came and gave me more benadryl and took my vitals. My heartrate was at 220.,.not good.
They could not believe how red and swollen I was. We went to Hillcrest Hospital. They eventually stabilized me and then I was released.

Meanwhile, my daughter Erika could not reach me and she knew I was headed to the drugstore for Benadryl. She finally reached a dispatcher and the only thing the woman would say is "your mother is in very grave condition, not doing well, but that's all I can say." By the time I was admitted to the hospital my daugher arrived 10 minutes later.

What I'm trying to figure out is this...I stopped taking Aromasin in the middle of July because of excessive joint pain and switched to Femara on July 14th. I've been very happy with the Femara. On August 1st I woke up with swelling of my lips and arms and got a dose of Benadryl. It seemed to do the trick and I went back to sleep. Never knew what caused this.

In my lifetime, I've never had an allergic reaction to anything, so this was the first. The second one I had Tuesday was so much more severe. I hadn't even eaten anything that day, but had taken the Femara.

I'm waiting for the oncologist nurse to call me back, but I read that a small percentage of patients could have an allergic reaction to Femara. Does anyone else think that if I've only had two allergic reactions in my lifetime, since starting Femara on July 15th, that there might be a connection? Would the reaction have been quicker than this timeframe? One reaction two weeks after starting this medication, then another reaction six weeks later?

I am on no other medication -- nothing, except Voltaren as needed for knee pain once in a while.

The internist said that 95% of the time the source of the reaction is never known. The ER doctor said the next time this happens take the benadryl as I'm calling the rescue squad.

Any thoughts?
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Old 10-03-2008, 09:27 AM   #5
dlaxague
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yes, a few thoughts

Hi Vi,

You had an anaphylactic reaction (highest level of allergy, can be life-threatening) to something. You should now also carry an epi (epinephrine) pen or inhaler (like people who are allergic to bee stings do). They should have told you that.

What you didn't tell us is if you're still taking the Femara. If so that would be very odd, to have reacted so strongly to it once and then not since.

I have had a similar reaction to yours although a little more involved, 3 times in my life. All within about 10 minutes of eating a meal (two times a potluck, alas for figuring out the allergen). But they were over a 4-5 year period and that was 20 years ago. Allergies are so weird.

As was mentioned about the oral Benadryl, allergies can be to the fillers in the drug and not to the drug itself.

But Vi, you had nothing to eat nor drink except the Femara? What a mystery.

Keep us posted, please - both about how you are doing and what your doctor has to say.

Debbie Laxague
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Old 10-03-2008, 09:41 AM   #6
Vi Schorpp
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Thanks Debbie

I've not taken Femara since Tuesday, and I'm not even sure that would be the source -- I'm grasping at straws I think. I wish I could make a connection, but I can't. I'll let you know what the oncologist says. I expect it will be a CYA answer like, "If you're not comfortable taking the Femara we can switch you to Arimidex." In fairness though, if the cause of most reactions are never solved, I can't expect another doctor to agree or disagree about the Femara (especially in the timeframe I've taken it).

Thanks for your reply! Take Care.
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3.5 cm, 0/19 positive nodes
Stage IIA
Her2++, ER & PR++
RB Mastectomy, 4 AC,
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Old 10-03-2008, 09:53 AM   #7
Louise O'Brien
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Laurianne...

I'm not an expert but I have to wonder if it wasn't the double dose of Benadryl. I had a very strong reaction to my first Herceptin dose - but it didn't happen until I got home. I developed a very high fever and the shakes and my husband was about to take me to the hospital - when slowly the fever subsided and I returned to normal.

But after that, they insisted on giving me Benadryl with my Herceptin infusion and I hated it. I hated feeling like I was nearly unconscious and it made the treatments miserable for me.

I knew there were written warnings about reaction to the first, longer dose of Herceptin and I felt mine were classic.

After about the fifth treatment, I begged to be taken off the Benadryl because it just made me feel so awful. I wanted to go cold turkey and they were very reluctant to do this but I insisted.

And I was fine - and I never never had any problems after that. So I'm hoping that will be the case with you.

True allergic reactions aren't fun. I'm allergic to penicillin and ended up in ER so I know how terrifying it can be.

Good luck and let us know how it worked out.

I'm going to throw out a positive vibe here
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Old 10-03-2008, 10:44 AM   #8
ElaineM
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Unhappy Benedryl

Yes. It is possible to have a reaction to Benedryl. In some sensitive people it can cause some of the problems it is supposed to prevent. I can't take Benedryl in any form. When I took it I had more side effects than I would have had without it.
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Old 10-04-2008, 04:08 AM   #9
Laurieanne
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Thanks Guys,
I had my herceptin yesterday with a steroid, no problems. Does anyone take herceptin with no premeds?
Laurie
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Old 10-04-2008, 05:41 AM   #10
Pam P
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Laurie - When I was getting herceptin along I never had a premed of any kind.
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6/01 IBC er+ her2+stage IIIb; mastecomy
7/01 AC, taxol; radiation
2/02 tamoxifen
9/02 stage IV bone mets femara
1/03 taxotere/herceptin/aredia
6/03 herceptin, aredia & faslodex
1/04 navelbine, herceptin, aredia
2/05 herceptin/aredia
7/05 xeloda/herceptin/aredia
3/07 xeloda/tykerb/aredia
5/08 taxol/avastin/aredia
2/09 gemzar/herceptin/zometa
7/09 Taxol/Carbo/Herceptin, zometa
10/09 navelbine/herceptin & zometa
2/10 herceptin & tykerb & zometa
4/10 add xeloda &aromasin
10/10 dx with dermatomyiositis triggered by cancer
11/10 restart herceptin, tykerb, zometa
12/10 surgery-place rod in R femur to stabilize bone
1/11 radiation to R femur - 20 tx
2/11 2nd surgery - rod in Left femur
2/11 tx eribulen -- suspended dx brain mets
3/11 brain mets wbr 20 tx
4/11 halaven; discontine 8/11 not working
8/11 radiation to left femur 20 tx'
8-9/11 rad to lower spine
9/11 abraxane/herceptin/zometa
9/12 xeloda/herceptin/zometa
12/12 ablation of liver
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Old 10-04-2008, 07:12 AM   #11
Sheila
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Laurie
I have never had a premed for herceptin in 5 years of being on it....but that is not to say some people require it...many chemo centers in the midwest give tylenol and benedryl standard before Herceptin.
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Diagnosed at age 49.99999 2/21/2002 via Mammography (Calcifications)
Core Biopsy 2/22/02
L. Mastectomy 2/25/2002
Stage 1, 0.7cm IDC, Node Neg from 19 nodes Her2+++ ER PR Neg
6/2003 Reconstruction W/ Tissue Expander, Silicone Implant
9/2003 Stage IV with Mets to Supraclavicular nodes
9/2003 Began Herceptin every 3 weeks
3/2006 Xeloda 2500mg/Herceptin for recurrence to neck nodes
3/2007 Added back the Xeloda with Herceptin for continued mets to nodes
5/2007 Taken Off Xeloda, no longer working
6/14/07 Taxol/Herceptin/Avastin
3/26 - 5/28/08 Taxol Holiday Whopeeeeeeeee
5/29 2008 Back on Taxol w Herceptin q 2 weeks
4/2009 Progression on Taxol & Paralyzed L Vocal Cord from Nodes Pressing on Nerve
5/2009 Begin Rx with Navelbine/Herceptin
11/09 Progression on Navelbine
Fought for and started Tykerb/Herceptin...nodes are melting!!!!!
2/2010 Back to Avastin/Herceptin
5/2010 Switched to Metronomic Chemo with Herceptin...Cytoxan and Methotrexate
Pericardial Window Surgery to Drain Pericardial Effusion
7/2010 Back to walking a mile a day...YEAH!!!!
9/2010 Nodes are back with a vengence in neck
Qualified for TDM-1 EAP
10/6/10 Begin my miracle drug, TDM-1
Mixed response, shrinking internal nodes, progression skin mets after 3 treatments
12/6/10 Started Halaven (Eribulen) /Herceptin excellent results in 2 treatments
2/2011 I CELEBRATE my 9 YEAR MARK!!!!!!!!!!!!!
7/5/11 begin Gemzar /Herceptin for node progression
2/8/2012 Gemzar stopped, Continue Herceptin
2/20/2012 Begin Tomo Radiation to Neck Nodes
2/21/2012 I CELEBRATE 10 YEARS
5/12/2012 BeganTaxotere/ Herceptin is my next miracle for new node progression
6/28/12 Stopped Taxotere due to pregression, Started Perjeta/Herceptin
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Old 10-04-2008, 04:48 PM   #12
ElaineM
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Cool Benedryl

See my previous post about taking Herceptin without premeds.
It is good to remember that every drug on our plant can cause side effects in sensitive individuals. The more we add the more potential we may have for side effects. I usually try new medicines without premeds. If I get side effects I ask the docs to help me solve those problems.
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12 years and counting
http://her2support.org/vbulletin/showthread.php?t=48247
Lucky 13 !! I hope so !!!!!!
http://her2support.org/vbulletin/showthread.php?t=52807
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Old 10-06-2008, 06:16 PM   #13
'lizbeth
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Laurieanne,

I had a terrible reaction to Benadryl. I had taken it before without a problem. When I ended up in the hospital in May I was on three IV antibiotics and one of them made me feel itchy. So the nurse gave me Benadryl. The next night I couldn't sleep so the nurse checked my approved meds list. There wasn't anything for insomnia - so she recommended, you guessed it, Benadryl. I didn't realize that it was the Benadryl that was giving me insomnia so when I came home from the hospital and couldn't sleep I took more Benadryl. My blood pressure went up to 150/100, my heart was racing. I felt like I was plugged into an electrical socket. People would talk - I could see the lips moving and I could only get a few words of the sentence. I was confused, irrational.

Needless to say I finally made the connection and stopped taking it. 10 days later it was out of my system and I was back to normal.

I learned my lesson with pharmaceuticals - less is more.
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Diagnosed 2007
Stage IIb Invasive Ductal Carcinoma, Pagets, 3 of 15 positive nodes

Traditional Treatment: Mastectomy and Axillary Node Dissection followed by Taxotere, 6 treatments and 1 year of Herceptin, no radiation
Former Chemo Ninja "Takizi Zukuchiri"

Additional treatments:
GP2 vaccine, San Antonio Med Ctr
Prescriptive Exercise for Cancer Patients
ENERGY Study, UCSD La Jolla

Reconstruction: TRAM flap, partial loss, Revision

The content of my posts are meant for informational purposes only. The medical information is intended for general information only and should not be used in any way to diagnose, treat, cure, or prevent disease
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Old 10-06-2008, 08:09 PM   #14
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I take the standard dose of benadryl (25mg) before every Herceptin infusion. I take it as the simple little pink and white benadryl pill form that I have bought for years over the counter. (this is what the nurses give me at infusion time)

When I started Herceptin over 2 years ago, I learned that there is a difference in the way benadryl can be given. I can't tolerate it in any form other thay the 25mg pill.

When they drip it into my line in liquid form from a bag, it is too strong for me. Completely knocks me out. It's too strong for me to get it dripped into my bloodstream...

The one time that they "pushed" it into my line, via a syringe, it hit my bloodstream too fast and I had a terrible reaction to it... it was an arm and leg heaviness/paralysis, racing heart, and I couldn't talk - basically an out of body experience. The worst of it lasted a little over an hour, and we really couldn't do anything about it but give it time to wear off. It slowly wore off over the next 6-7 hours, but I was toast until the next day. Shakey and drugged.

Do you get pill form, drip form or syringe "push" form?
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NOV 2012 - 9 yr anniversary
JULY 2012 - 7 yr anniversary stage IV (of 50...)

Nov'03~ dX stage 2B
Dec'03~
Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive
Jan'04~
Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo.
Sept'05~
micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only
Aug'06~
micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin
Feb'07~ Genetic testing, BRCA 1&2 neg

Apr'07~
MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin
May'07~
Started Tykerb/Xeloda, no WBR for now
June'07~
MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic!
Aug'07~
MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2
Oct'07~
PET/CT & MRI show NED
Apr'08~
scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone)
Sept'08~
MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers
Oct'08~
dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion
Dec'08~
Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable
June'09~
new 3-4mm left cerrebellar spot zapped with IMRT targeted rads
Sept'09~
new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors.
Oct'09~
25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen.
Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen.
June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen.
Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice.
Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots.
Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011.
Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah.

"I would rather be anecdotally alive than statistically dead."
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Old 10-06-2008, 08:22 PM   #15
caya
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Laurieanne,

I never had any kind of pre-meds while taking Herceptin. I also had the infusion over 60 minutes, instead of 30.

all the best
caya
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MRM Dec.18/06
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Old 10-06-2008, 08:31 PM   #16
jones7676
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I'm not sure about Benedryl itself, but through the years what I'm allergic to has changed. I have a good friend who has developed different allergies also. I also have a good friend whos had improved allergy problems after having chemo - that is all I can offer.
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10/03 Radical Mastectomy 3 cm tumor - 1/17 Nodes Stage II B, Her 2 +++ ER-/PR- 11/03 4 AC 4 Taxol 12/05 Stage IV - Lung met , Bone mets - Carbo, Taxotere, Herceptin 9/06 - 2 cm brain tumor 10/06 - Tumor removal surgery - Herceptin Halted 12/06 gamma knife tumor base.1/07 Navelbine/Herceptin 4/07 Rads to R femur 5/07 Stereotactic - new 2 cm brain tumor 4/07 Start Xeloda 5/07 Tykerb added 7/07 Brain MRI clean 10/07 .055 cm brain met found. 12/07 Stereotactic -1 cm brain tumor Start Tykerb 11/07 Abraxane/Herceptin 5/08 Cisplatin, Gemcitabine/Herceptin 6/08 Stereotactic to 1cm 9/08 Stereotactic repeat (growth). 11/08 Pet Scan Good but new tiny met on L lung/dead Brain surgery (no cancer cells found/scar tissue) 1/09 Chemo restarted 2/09 Pet Scan Bad - R larger very active/active L active lymph nodes both sides of chest MRI- mets slight increase 2/09 Start Doxil/Tykerb Treatment
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Old 10-08-2008, 04:17 PM   #17
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if i take benadryl for anything my legs really jerk and jump. i have to be up and moving for about 45 minutes before they finally calm down.
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Old 10-08-2008, 05:46 PM   #18
'lizbeth
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Hutchibk,

I received the syringe push-type in the hospital, twice. Then I took 25 - 50 mg pills at home.

'lizbeth
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Diagnosed 2007
Stage IIb Invasive Ductal Carcinoma, Pagets, 3 of 15 positive nodes

Traditional Treatment: Mastectomy and Axillary Node Dissection followed by Taxotere, 6 treatments and 1 year of Herceptin, no radiation
Former Chemo Ninja "Takizi Zukuchiri"

Additional treatments:
GP2 vaccine, San Antonio Med Ctr
Prescriptive Exercise for Cancer Patients
ENERGY Study, UCSD La Jolla

Reconstruction: TRAM flap, partial loss, Revision

The content of my posts are meant for informational purposes only. The medical information is intended for general information only and should not be used in any way to diagnose, treat, cure, or prevent disease
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Old 10-10-2008, 07:05 AM   #19
swimangel72
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I've been on Herceptin alone since August and never get pre-meds and have no SE's whatsoever, thank God. Once, while I was still on Navelbine, the new onc's nurse started me with a steroi, which gave me extreme constipation and insomnia.......I told her I didn't need the pre-meds, so she stopped and then I was fine.
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2/5/08 - dx age 53, post-menopausal;
IDC Stage 1, Grade 1
ER+ 90% /PR+ 90% /Her2++++, BRAC1 & 2 neg
3/5/08 - mast with muscle-sparing free tram;
0/7 nodes clear; Stage 1 lymphedema in right arm
3/11/08 - MRSA infection in abdomen causes large hernia
4/11/08 - Oncotype DX score 22 (intermediate)
4/12/08 - Muga score 67%
4/23/08 - Chemo, Navelbine and Herceptin every 2 weeks
8/20/08 - Last Navelbine infusion! Yay!
1/22/09 - First mammo since dx - unaffected breast CLEAR!
1/30/09 - Second Muga score 63%
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Old 10-13-2008, 04:24 AM   #20
Sheila
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Brenda
I always get 50mg IV push....I feel the same way you did....gee, I thought it was a benefit...kind of put me in the "I don't give a sh*t mode!
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Diagnosed at age 49.99999 2/21/2002 via Mammography (Calcifications)
Core Biopsy 2/22/02
L. Mastectomy 2/25/2002
Stage 1, 0.7cm IDC, Node Neg from 19 nodes Her2+++ ER PR Neg
6/2003 Reconstruction W/ Tissue Expander, Silicone Implant
9/2003 Stage IV with Mets to Supraclavicular nodes
9/2003 Began Herceptin every 3 weeks
3/2006 Xeloda 2500mg/Herceptin for recurrence to neck nodes
3/2007 Added back the Xeloda with Herceptin for continued mets to nodes
5/2007 Taken Off Xeloda, no longer working
6/14/07 Taxol/Herceptin/Avastin
3/26 - 5/28/08 Taxol Holiday Whopeeeeeeeee
5/29 2008 Back on Taxol w Herceptin q 2 weeks
4/2009 Progression on Taxol & Paralyzed L Vocal Cord from Nodes Pressing on Nerve
5/2009 Begin Rx with Navelbine/Herceptin
11/09 Progression on Navelbine
Fought for and started Tykerb/Herceptin...nodes are melting!!!!!
2/2010 Back to Avastin/Herceptin
5/2010 Switched to Metronomic Chemo with Herceptin...Cytoxan and Methotrexate
Pericardial Window Surgery to Drain Pericardial Effusion
7/2010 Back to walking a mile a day...YEAH!!!!
9/2010 Nodes are back with a vengence in neck
Qualified for TDM-1 EAP
10/6/10 Begin my miracle drug, TDM-1
Mixed response, shrinking internal nodes, progression skin mets after 3 treatments
12/6/10 Started Halaven (Eribulen) /Herceptin excellent results in 2 treatments
2/2011 I CELEBRATE my 9 YEAR MARK!!!!!!!!!!!!!
7/5/11 begin Gemzar /Herceptin for node progression
2/8/2012 Gemzar stopped, Continue Herceptin
2/20/2012 Begin Tomo Radiation to Neck Nodes
2/21/2012 I CELEBRATE 10 YEARS
5/12/2012 BeganTaxotere/ Herceptin is my next miracle for new node progression
6/28/12 Stopped Taxotere due to pregression, Started Perjeta/Herceptin
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