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Old 04-03-2013, 07:09 AM   #1
jaykay
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Question Side effects from Herceptin only (after 6 TCH)?

Hi,

Will begin Herceptin only tomorrow (finished chemo 3 weeks ago) and was wondering what side effects can I attribute to H vs TCH.

I know everyone is different, but I like to be prepared.

Thanks

Janis
__________________
March, 2000: 48, Post menopausal (5 yrs HRT) Left breast, IDC 3mm/DCIS 1.6cm, ER+/PR-/Her2+++, mod differentiated, MIB low, lumpectomy, node neg via SNB, rads=33 Stage 1a
June, 2000: Tamox 4.5 years,Femara for 5 years (end in Jan. 2010)
Sept, 2012: 61, Via mamm, ultrasound, biopsy, right breast, 2.3cm tumor, ER+/PR-/Her2+++, poorly diff, KI67 60-70%
BRCA 1 and 2 negative
October, 2012: Bi Mast with tissue expanders, port placement
Final Path: IDC 2.8cm, DCIS, 1/4 sentinal nodes positive (@#$%). Stage IIB
Nov 29, 2012: Begin TCH/6x/every 3 wks, H for 1 year/every 3 weeks.
March 14, 2013: Finished chemo
April 9, 2013: Begin radiation 28x
May 22, 2013: Finished rads
June 1st, 2013: Started Aromasin for 5 yrs.
July 15, 2013: Switched to Letrozole (Femara). Probably for the rest of my life
October 16, 2013: Exchange surgery
October 31, 2013: Finished Herceptin
December 5, 2013: Port removed
Glad this year is over!
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Old 04-03-2013, 08:32 AM   #2
snolan
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Re: Side effects from Herceptin only (after 6 TCH)?

I only had a runny nose, my RBC count remained low and still does. But overall it didn't bother me at all. I know others will chim in with some side effects but I got lucky and it was much easier then chemo.
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dx: DCIS 6/8/10, HER 2+ 7/26/10; Stage I Age 41
Double mast w reconstruction
6 TCH w 1yr herceptin
Tamox.
25 radiation tx
Removal of expander on L due to infection. Tried to save it had 3 bouts of antibiotics and went to see plastic surgeon 2-3x wk to get drained. Saving it was my idea not his. But lost it anyway.
Reconstruction set for December 21st,2011
Finished chemo 12/2010
Finished Herceptin 8/26/11
Reconstruction 12/21/11
Expanders exchanged for silicon 3/19/12
Nipple reconstruction 5/18/12
Nipple tatooing- 7/9/12- All done yay!
11/22/12-Went back to get scar tissue stretched to even the outside of breast, didn't work due to it being radiated skin.
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Old 04-03-2013, 10:38 AM   #3
roz123
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Re: Side effects from Herceptin only (after 6 TCH)?

so easy compared to chemo/rads/surgery !
just tired, runny nose and achy but I think the aches may have been chemo related or even being slammed into menopause. I liked going for my 3wk infusion, felt very protected
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diagnosed aug/11
right breast IDC 2.2 cm LVI
neoadjuvant fecx3, tax and her x3
surgery -pCR 0/2 nodes
25 rads
herceptin x18
tamox
prophy bi-msx with TE's oct 15/12
LD flap reconstruction (PM me if you want the details)
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Old 04-04-2013, 06:16 AM   #4
Jackie07
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Re: Side effects from Herceptin only (after 6 TCH)?

http://her2support.org/vbulletin/sho...in+side+effect
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Jackie07
http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
http://www.asco.org/ASCOv2/MultiMedi...=114&trackID=2

NICU 4.4 LB
Erythema Nodosum 85
Life-long Central Neurocytoma 4x5x6.5 cm 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infertility tmts 99 > 3 u. fibroids > Pills
CN 3 GKRS 52301
IDC 1.2 cm Her2 +++ ER 5% R. Lmptmy SLNB+1 71703 6 FEC 33 R Tamoxifen
Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
6 TCH Cellulitis - Lymphedema - compression sleeve & glove
H w x 4 MUGA 51 D, J 49 M
Diastasis recti
Tamoxifen B. scan
Irrtbl bowel 1'09
Colonoscopy 313
BRCA1 V1247I
hptc hemangioma
Vertigo
GI - > yogurt
hysterectomy/oophorectomy 011410
Exemestane 25 mg tab 102912 ~ 101016 stopped due to r. hip/l.thigh pain after long walk
DEXA 1/13
1-2016 lesions in liver largest 9mm & 1.3 cm onco. says not cancer.
3-11 Appendectomy - visually O.K., a lot of puss. Final path result - not cancer.
Start Vitamin D3 and Calcium supplement (600mg x2)
10-10 Stopped Exemestane due to r. hip/l.thigh pain OKed by Onco 11-08-2016
7-23-2018 9 mm groundglass nodule within the right lower lobe with indolent behavior. Due to possible adenocarcinoma, Recommend annual surveilence.
7-10-2019 CT to check lung nodule.
1-10-2020 8mm stable nodule on R Lung, two 6mm new ones on L Lung, a possible lymph node involvement in inter fissule.
"I WANT TO BE AN OUTRAGEOUS OLD WOMAN WHO NEVER GETS CALLED AN OLD LADY. I WANT TO GET SHARP EDGED & EARTH COLORED, TILL I FADE AWAY FROM PURE JOY." Irene from Tampa

Advocacy is a passion .. not a pastime - Joe
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Old 04-04-2013, 11:38 AM   #5
jaykay
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Re: Side effects from Herceptin only (after 6 TCH)?

Thanks everyone.

Jackie - I did check that thread but there was nothing specific about Herceptin only after TCH.

Best

Janis
__________________
March, 2000: 48, Post menopausal (5 yrs HRT) Left breast, IDC 3mm/DCIS 1.6cm, ER+/PR-/Her2+++, mod differentiated, MIB low, lumpectomy, node neg via SNB, rads=33 Stage 1a
June, 2000: Tamox 4.5 years,Femara for 5 years (end in Jan. 2010)
Sept, 2012: 61, Via mamm, ultrasound, biopsy, right breast, 2.3cm tumor, ER+/PR-/Her2+++, poorly diff, KI67 60-70%
BRCA 1 and 2 negative
October, 2012: Bi Mast with tissue expanders, port placement
Final Path: IDC 2.8cm, DCIS, 1/4 sentinal nodes positive (@#$%). Stage IIB
Nov 29, 2012: Begin TCH/6x/every 3 wks, H for 1 year/every 3 weeks.
March 14, 2013: Finished chemo
April 9, 2013: Begin radiation 28x
May 22, 2013: Finished rads
June 1st, 2013: Started Aromasin for 5 yrs.
July 15, 2013: Switched to Letrozole (Femara). Probably for the rest of my life
October 16, 2013: Exchange surgery
October 31, 2013: Finished Herceptin
December 5, 2013: Port removed
Glad this year is over!
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Old 04-04-2013, 06:31 PM   #6
thickdescription
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Re: Side effects from Herceptin only (after 6 TCH)?

Just had 2nd Herceptin infusion. No chemo yet. Have a runny nose, a little tired and achy the day after, skin is dry and inside of nose is sometimes very dry. Otherwise feel great!
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Old 04-04-2013, 07:34 PM   #7
chekmark
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Re: Side effects from Herceptin only (after 6 TCH)?

Easy, running nose and achy joints but once I started glucosamine it got alot better. I did find that when I was in the sun alot I had tingling skin. Like prickly heat. Once I got out of the sun it went away. Your hair will start to grow and you will feel stronger everyday, well at least I did. It will be a breeze after TC. Not like chemo at all. Breath easy,it will probably be smooth sailing now. Good luck!!!!
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DX Sept 30 2010 at the age of 49. Oh crap! 1.5 cm idc, stage 1 grade 3 er/pr+, her2+ no lymph nodes, mastectomy Oct/10. Started 6 rounds of TCH Dec/10 and will continue herceptin until Nov /11 and just started femara.
Stray kitten found my lump while I was playing with it. It is now my pet and my dog is not real happy about that.
Mammo good
last herceptin 11/21/11 YAY
reconstruction 12/09/11
Chapter closed 12/10/11, hopefully, fingers crossed
Bone scan, chest xray, clear
04/27/12 Expander removed, implant put in, ahh sigh of relief, much more comfortable
Sept 30, 2014, 4 years NED
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Old 04-04-2013, 07:41 PM   #8
thickdescription
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Re: Side effects from Herceptin only (after 6 TCH)?

Can I ask, why did you take glucasomine? Did your doc prescribe it? What was it designed to deal with?
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Old 04-04-2013, 07:49 PM   #9
chekmark
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Re: Side effects from Herceptin only (after 6 TCH)?

It is designed for joints and bones. I was told it worked well. I checked with my oncologist before I took it and she said it was fine. It has worked wonderfully for me. I have no pain. I could barely walk in the mornings due to my joint pain and about 2 weeks into the glucosamine I was feeling better. I am also on femara which causes joint pain and feel pretty good. Everyone is different but it works for me. I also take Vit D and calcium and my bone density was excellent. Good luck. It will go well. Promise!
__________________
DX Sept 30 2010 at the age of 49. Oh crap! 1.5 cm idc, stage 1 grade 3 er/pr+, her2+ no lymph nodes, mastectomy Oct/10. Started 6 rounds of TCH Dec/10 and will continue herceptin until Nov /11 and just started femara.
Stray kitten found my lump while I was playing with it. It is now my pet and my dog is not real happy about that.
Mammo good
last herceptin 11/21/11 YAY
reconstruction 12/09/11
Chapter closed 12/10/11, hopefully, fingers crossed
Bone scan, chest xray, clear
04/27/12 Expander removed, implant put in, ahh sigh of relief, much more comfortable
Sept 30, 2014, 4 years NED
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Old 04-05-2013, 05:15 AM   #10
Jackie07
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Re: Side effects from Herceptin only (after 6 TCH)?

Janis,

Try click on the last posting (which will be the most recent posting) of the thread unless you have reset the order ...

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Jackie07
http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
http://www.asco.org/ASCOv2/MultiMedi...=114&trackID=2

NICU 4.4 LB
Erythema Nodosum 85
Life-long Central Neurocytoma 4x5x6.5 cm 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infertility tmts 99 > 3 u. fibroids > Pills
CN 3 GKRS 52301
IDC 1.2 cm Her2 +++ ER 5% R. Lmptmy SLNB+1 71703 6 FEC 33 R Tamoxifen
Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
6 TCH Cellulitis - Lymphedema - compression sleeve & glove
H w x 4 MUGA 51 D, J 49 M
Diastasis recti
Tamoxifen B. scan
Irrtbl bowel 1'09
Colonoscopy 313
BRCA1 V1247I
hptc hemangioma
Vertigo
GI - > yogurt
hysterectomy/oophorectomy 011410
Exemestane 25 mg tab 102912 ~ 101016 stopped due to r. hip/l.thigh pain after long walk
DEXA 1/13
1-2016 lesions in liver largest 9mm & 1.3 cm onco. says not cancer.
3-11 Appendectomy - visually O.K., a lot of puss. Final path result - not cancer.
Start Vitamin D3 and Calcium supplement (600mg x2)
10-10 Stopped Exemestane due to r. hip/l.thigh pain OKed by Onco 11-08-2016
7-23-2018 9 mm groundglass nodule within the right lower lobe with indolent behavior. Due to possible adenocarcinoma, Recommend annual surveilence.
7-10-2019 CT to check lung nodule.
1-10-2020 8mm stable nodule on R Lung, two 6mm new ones on L Lung, a possible lymph node involvement in inter fissule.
"I WANT TO BE AN OUTRAGEOUS OLD WOMAN WHO NEVER GETS CALLED AN OLD LADY. I WANT TO GET SHARP EDGED & EARTH COLORED, TILL I FADE AWAY FROM PURE JOY." Irene from Tampa

Advocacy is a passion .. not a pastime - Joe

Last edited by Jackie07; 04-05-2013 at 05:24 AM..
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Old 04-05-2013, 05:53 AM   #11
Jackie07
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Re: Side effects from Herceptin only (after 6 TCH)?

Here are the last couple of them:

#628 by norkdo
· I finished my herceptin in August. Side effects: none. (slept heavily afterwards tho.)

·
#627 by Andrea Barnett Budin
#Herceptin was tolerated fairly well. Low energy. B-12 sublingual. Phyto Formula for chronic fatigue recommended by nut onc (supplement guy).

Ayr gel in a tube for nose. I used to have to blow my nose for the first 1/2 hr I got up in the morning. And it was bloody.

Poopies/bathroom drama really bad. After all is said and done, I have created a FOOD TRIGGER list that I must stick by religiously. After 5 gastro guys and every med they could throw at me, 1 Wobenzyme 1/2 hr before meals plus LIQUID IMODIUM have proven to be fantastic. My chronic IBS since the first chemo is somewhat under control. (KY jelly for diaper rash works wonders when you've spent hrs on the toilette...)

I was on Herceptin for 10 yrs. Off for nearly 5!!!!!


#626 conomyself

Overall the herceptin has been fine for me.

I have minor issues, but I don't know if they are due to Herceptin or leftover from Taxotere:

Knees. When trying to get up from a crouching position it is difficult and painful.
Stiffness. I am quite stiff after sitting.
Nostrils. They are scabby and painful.
Diarrhea. On and off, not chronic. Never know what I'm going to get.
Fluid retention. It has improved, but my face still looks puffy to me.
Energy level. I can do about 50% of what I used to do before diagnosis.

Rachael


#625 rondo
I'm sorry you are having such severe symptoms but glad to hear about your NED status. I
Definitely experienced increasing fatigue from the Herceptin during the year I was on it as well as some other milder symptoms. It is interesting that you mention dizinness and loss of balance. I have been having the same issue and am in the midst of vestibular rehab therapy now since my symptoms, which were mild for several years, have progressed over the last 6 months. The onc and ENT that I have seenthink it's caused by the carboplatin but now I am wondering about the herceptin since from what I have read, carboplatin usually only causes hearing loss(which I don't have.) They are having some trouble getting my symptoms under control so I am going to another specialist soon. No one seems to think its a brain met. Has anyone else that had TCH (or not) had this issue?


#624
frankp
kstrahm--you might check your serum HER2. A very recent Danish article pretty much concludes that chances of progressing are slim if your serum HER2 is in the normal range. You can read more at www.hertestonline.com, the March blog.

#623 kstrahm
Herceptin has become a side effect nightmare for me after almost 7 years on it. I started it in April 2006 for stage IV with liver mets. It was great at first - just a headache on infusion day and tired that day over the years it has progressed into full blown neuropathy with burning, tingling, numbness in hands, feet, legs, arm, tongue and throat, frequently dropping things and losing my balance as well. It also causes me to be dizzy and have pressure in my head as well as extremely exhausting me. I also have what the doc calls flu like symptoms which is severe pain the day off and day after the treatment in my upper back and neck. Here recently I have almost felt like I was dying the evening of taking it I was so out of it and felt so like nothing I could even explain. The verdict of this since I am NED now and have been for 6 years we are going to stop Herceptin. It is so scary and is a gamble but my body is giving me no other option. I hope to be NED for a long time because I am not looking forward to going back on it anytime soon. I certainly think the Herceptin side effects are cumulative.
__________________
Jackie07
http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
http://www.asco.org/ASCOv2/MultiMedi...=114&trackID=2

NICU 4.4 LB
Erythema Nodosum 85
Life-long Central Neurocytoma 4x5x6.5 cm 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infertility tmts 99 > 3 u. fibroids > Pills
CN 3 GKRS 52301
IDC 1.2 cm Her2 +++ ER 5% R. Lmptmy SLNB+1 71703 6 FEC 33 R Tamoxifen
Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
6 TCH Cellulitis - Lymphedema - compression sleeve & glove
H w x 4 MUGA 51 D, J 49 M
Diastasis recti
Tamoxifen B. scan
Irrtbl bowel 1'09
Colonoscopy 313
BRCA1 V1247I
hptc hemangioma
Vertigo
GI - > yogurt
hysterectomy/oophorectomy 011410
Exemestane 25 mg tab 102912 ~ 101016 stopped due to r. hip/l.thigh pain after long walk
DEXA 1/13
1-2016 lesions in liver largest 9mm & 1.3 cm onco. says not cancer.
3-11 Appendectomy - visually O.K., a lot of puss. Final path result - not cancer.
Start Vitamin D3 and Calcium supplement (600mg x2)
10-10 Stopped Exemestane due to r. hip/l.thigh pain OKed by Onco 11-08-2016
7-23-2018 9 mm groundglass nodule within the right lower lobe with indolent behavior. Due to possible adenocarcinoma, Recommend annual surveilence.
7-10-2019 CT to check lung nodule.
1-10-2020 8mm stable nodule on R Lung, two 6mm new ones on L Lung, a possible lymph node involvement in inter fissule.
"I WANT TO BE AN OUTRAGEOUS OLD WOMAN WHO NEVER GETS CALLED AN OLD LADY. I WANT TO GET SHARP EDGED & EARTH COLORED, TILL I FADE AWAY FROM PURE JOY." Irene from Tampa

Advocacy is a passion .. not a pastime - Joe

Last edited by Jackie07; 04-05-2013 at 05:55 AM..
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Old 04-08-2013, 08:32 PM   #12
starwishn2
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Re: Side effects from Herceptin only (after 6 TCH)?

I have been on "just" Herceptin since Dec 26. I'll finish that up in August. I have a runny nose (that seems pretty common) and some aches but not bad. SO much easier than Taxotere! My hair is growing and I actually had a person at work comment that it looked like I tried to make a "part" at the side... ha! I had some swelling the first 2 treatments but nothing since. That could have been some "left overs"....

Best of luck!
Jeri
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Diagnosed 16Dec1993 ITP (auto immune disease - low platelets)
Splenectomy 11Nov2009
Rituxen May2011
ITP playing nice
Diagnosed 3Jul2012 BC

2 cm - Grade 2 - Stage IIB
HER2+++

ER+/PR+
bilateral mastectomy 20Jul2012
Metastasized cancer found 1 lymph node
expanders placed during surgery
TCH chemo "cocktail" started 24Aug2012
every 3 weeks - 6 treatments
Herceptin - 18 treatments
LAST treatment Taxotere & Carboplatin 7Dec2012 -yay!
Continue with Herceptin 26Dec2012

Started Arimidex 01Jan2013 (for 5 years)
Surgery to remove expanders/reconstruction 18Jan2013
Infection in left breast from reconstruction/infection in most nails - SO many meds! 22Feb2013
Left implant not playing nice.... might need to remove and try again - blah! 04Apr2013
3Jul2013 - one year since diagnosis - booo cancer!

15Aug2013 LAST chemo infusion!! YIPPPEEE!!!
13Sep2013 2nd reconstructive surgery.. the FOOBs are looking good!



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Old 04-09-2013, 12:13 PM   #13
jmihay
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Re: Side effects from Herceptin only (after 6 TCH)?

I have been on Herceptin only for 12 years, starting in 01 after a 15 year hiatus, I had mets to chest. For last two annual PETS have been NED. No real problems at all. My fingernails are very weak but it never occured to me that Herc. could be causing it until another patient complained of that. It is a miracle drug as far as I am concerned. Don't be afreaid of it!
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Old 04-11-2013, 06:51 PM   #14
jaykay
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Re: Side effects from Herceptin only (after 6 TCH)?

Jeri - now I know what you mean by swelling. 3 weeks after my last chemo, my feet/ankles decided to greatly expand. Took diruetics for a couple of days, helped a little. Onc said the it was common, leftover from taxotere and without the steroids to keep the inflammation down. She prescribed stronger diuretics, hope they work!

Thanks for everyone's response. First solo herceptin was easy. Feeling stronger daily. Funny how you forget what "normal" feels like when on chemo.

Best
Janis
__________________
March, 2000: 48, Post menopausal (5 yrs HRT) Left breast, IDC 3mm/DCIS 1.6cm, ER+/PR-/Her2+++, mod differentiated, MIB low, lumpectomy, node neg via SNB, rads=33 Stage 1a
June, 2000: Tamox 4.5 years,Femara for 5 years (end in Jan. 2010)
Sept, 2012: 61, Via mamm, ultrasound, biopsy, right breast, 2.3cm tumor, ER+/PR-/Her2+++, poorly diff, KI67 60-70%
BRCA 1 and 2 negative
October, 2012: Bi Mast with tissue expanders, port placement
Final Path: IDC 2.8cm, DCIS, 1/4 sentinal nodes positive (@#$%). Stage IIB
Nov 29, 2012: Begin TCH/6x/every 3 wks, H for 1 year/every 3 weeks.
March 14, 2013: Finished chemo
April 9, 2013: Begin radiation 28x
May 22, 2013: Finished rads
June 1st, 2013: Started Aromasin for 5 yrs.
July 15, 2013: Switched to Letrozole (Femara). Probably for the rest of my life
October 16, 2013: Exchange surgery
October 31, 2013: Finished Herceptin
December 5, 2013: Port removed
Glad this year is over!
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Old 04-15-2013, 06:37 PM   #15
conomyself
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Re: Side effects from Herceptin only (after 6 TCH)?

I'm still gaining strength while still on Herceptin, even since I wrote the post that Jackie quoted. I'm more inclined to think that the long chemo "hangover" is more the culprit, and herceptin/perjeta are very mild.

I've also been getting acupuncture and other energy work to get the body back in order from chemo, and I'm seeing improvement in the knees and energy level.

Rachael
__________________
7/30/2012 Diagnosed with metastatic breast cancer
8/3/2012 CT scan mets to liver (major!!), lungs, spine, and skin
8/8/2012 Biopsy results: invasive ductal carcinoma
ER+/PR+/HER2+ amplification 4.8 (whatever that means)
8/13/2012 Brain MRI (clear); bone scan verified CT scan
8/14/12 started Taxotere/Carboplatin/Herceptin, 2 rounds (added Neulasta after 9/4 treatment)
9/4/12 CA 15-3: >3000
9/15/12 CA 15-3: 840
9/15/12 started Taxotere/Perjeta/Herceptin, 4 rounds (no Neulasta)
10/29/12 CT scan showed dramatic improvement in all areas - largest liver met 2.5 cm, largest lung met 10 cm
12/17/12 Started Perjeta/Herceptin, 2 rounds
12/17/12 CA 15-3: 17 Yay!!!
1/21/13 CT scan showed improvement - largest liver met 1.9 cm, largest lung met 2 mm
1/29/13 CA 15-3: 12 Started Herceptin only
3/12/13 CA 15-3: still 12 yay!! Back to Perjeta/Herceptin
3/29/13 CT scan more improvement - largest liver met 1.2 cm, some lung mets disappeared!
3/7/14 started Tamoxifen
6/27/13 - 1/2015 CT scan stable
Began a diet of only single ingredient foods and went nearly NED excepts for some tiny lung spots - ask me if you want to know more...
1/2015 - 1/2017 CT scan stable
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Old 04-15-2013, 08:22 PM   #16
SusanN
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Re: Side effects from Herceptin only (after 6 TCH)?

I had my first Herceptin April 1st..."No Foolin!"
Didn't have any side effects...TODAY...what and ORDEAL!!!
I was casually eating, having a conversation with my mom, all of a sudden I felt a bit dizzy, my heart seemed to race...I asked the nurse if she could slow down my infusion...and take my blood pressure...(she just "thought" I was panicking...)...my blood was VERY high...after I caught my breath...starting the infusioin again.
Into about 10 minutes...same thing!!
Thank God my mom was with me as I go the the VA Hospital, there is only ONE nurse...I asked her to STOP the infusion...she took my BP...still VERY high as was my pulse...called my oncologist, he ordered a steroid...I also had an EKG...
Finally got going again...I was given 2 benedryls (as usual) before my infusion...
However, I'm thinking I did okay due to the steroid that was I was given...
WHEW...what a day...!!! THANKING GOD I MADE IT THROUGH...
Has anyone experienced problems with their heart...???
__________________
10/18/12 Found pea size lump right breast
11/7/12 Biopsy
12/14/12 Lumpectomy
1/4/13 Rexcision, NO CLEAR MARGINS!! :(
2/11/13 Mastectomy with Expander Placed
2/15/13 INFECTION at Mastectomy site...emergency Surgery!!! Expander removed :(
DX: DCIS, IDC, Stage 2a, 2.7cm, 1/5 nodes positive
ER/PR-, HER2+++
3/28/13 Port placed
4/1/13 Begin 6 Cycles TCH Therapy
4/1/14 Finished Herceptin!!
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Old 04-16-2013, 06:33 AM   #17
jaykay
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Re: Side effects from Herceptin only (after 6 TCH)?

I haven't but you were really lucky to have your mom with you! Are you feeling better today, what did the dr say?

When I started on Herceptin only (just a couple of weeks ago), I declined the benedryl since I wouldn't have time to "sleep it off" and needed to drive home afterwards. No ill effects, thank goodness.

Be well

Janis
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March, 2000: 48, Post menopausal (5 yrs HRT) Left breast, IDC 3mm/DCIS 1.6cm, ER+/PR-/Her2+++, mod differentiated, MIB low, lumpectomy, node neg via SNB, rads=33 Stage 1a
June, 2000: Tamox 4.5 years,Femara for 5 years (end in Jan. 2010)
Sept, 2012: 61, Via mamm, ultrasound, biopsy, right breast, 2.3cm tumor, ER+/PR-/Her2+++, poorly diff, KI67 60-70%
BRCA 1 and 2 negative
October, 2012: Bi Mast with tissue expanders, port placement
Final Path: IDC 2.8cm, DCIS, 1/4 sentinal nodes positive (@#$%). Stage IIB
Nov 29, 2012: Begin TCH/6x/every 3 wks, H for 1 year/every 3 weeks.
March 14, 2013: Finished chemo
April 9, 2013: Begin radiation 28x
May 22, 2013: Finished rads
June 1st, 2013: Started Aromasin for 5 yrs.
July 15, 2013: Switched to Letrozole (Femara). Probably for the rest of my life
October 16, 2013: Exchange surgery
October 31, 2013: Finished Herceptin
December 5, 2013: Port removed
Glad this year is over!
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Old 04-16-2013, 08:08 AM   #18
SusanN
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Posts: 265
Re: Side effects from Herceptin only (after 6 TCH)?

Hi Janis...
I'm feeling fine today...actually, I just had a slight nose bleed, at least caught it in time!! I had another one last week...probably because it's so (furnace) dry...however, I haven't had one in years and I'm NOT taking anything lightly anymore!!
At times I feel I "annoy" her...
Yes, thank God my mom was with me...she is a nurse...retired many years ago...however, we had to ask her if she could take my BP,etc as it wasn't on my arm, then she took my pulse...not sure what protocol is elsewhere??
Anyhow, I was in the Army for 13 years...thankfully...oh how thankful...I am able to recieve my treatments at the Lincoln VA...however, there are down sides to that...she called my oncologist after the second one I had...(he is at the Omaha VA)...thank goodness he was able to be reached & ordered dexamethasone. However, when I asked her what she gave me, she didn't tell me...she just offered that it was something to help...
I then had my mom ask her & she told her...she had said the "thought" she had given it before...
I KNOW she gives me a steroid with Taxol/Carbo...
I heard her call & talk in her room to this gal call on the phone as to if heart palpitations was a side effect with Herceptin...

Anyhow, first thing this morning, I called Omaha & talked with the head oncology nurse...I really like her. I was discussing what had happened, she knew that my infusion nurse had made a call to one of her infusion nurses & yes that what happened can be one of the serious side effects. The nurse in Lincoln is not familiar with many breast cancer patients...so, I'm really getting edgy as to what is going on...my husband is as well...we may make our trips to Omaha for my infusions now.
The downside to that is my oncologist has me with a Herception once a week throughout my 6 cycles of TCH...then once every 3 weeks for a year...who knows...the nurse from Omaha is supposed to call me back...
Thanks for your concern Janis!!
Truly, this support group is great...don't know what I'd do without being able to get honest answers, insight, hope & encouragement!!
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10/18/12 Found pea size lump right breast
11/7/12 Biopsy
12/14/12 Lumpectomy
1/4/13 Rexcision, NO CLEAR MARGINS!! :(
2/11/13 Mastectomy with Expander Placed
2/15/13 INFECTION at Mastectomy site...emergency Surgery!!! Expander removed :(
DX: DCIS, IDC, Stage 2a, 2.7cm, 1/5 nodes positive
ER/PR-, HER2+++
3/28/13 Port placed
4/1/13 Begin 6 Cycles TCH Therapy
4/1/14 Finished Herceptin!!
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Old 04-16-2013, 02:02 PM   #19
daughter_1
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Re: Side effects from Herceptin only (after 6 TCH)?

My mother was diagnosed with Pulmonary toxicity (interstitial pneumonitis) with additional infections (K. Pneumonae), towards the end of her 12 week Herceptin+Taxol cyle. After spending a considerable time in the hospital (4liter oxygen, Saturation at 90, fever) she's now recovering, but our oncos are uncertain whether this is a case of pulmonary toxicity caused by Herceptin or by Taxol!!! She was due for a year long treatment on Herceptin, but her oncos have suggested moving to Trykerb at this point, given that there is no way of knowing and they do not want to risk another episode of pulmonary toxicity.

Also, post her 4th taxol+herceptin cycle, she started developing unexplained tachychardia and peri-cardial effusion, which till date hasnt been explained. The oncos once again think it could be herceptin, but state that there is no way of knowing!!

Any inputs on the above situation would be great!

Questions in our mind right now - Is Trykerb as good as Herceptin? Was the episode really caused by Herceptin?? Is it a risk to move from Herceptin to Trykerb given that she is node+ve.



Summary:
Dx: Stage 2b, 2 lymph nodes, Her2+ve, ER-ve, PR-ve
MRM: Sept 21st 2012, 4 AC cycles started on Oct 10th after which 12 Taxol+Herceptin weekly cycles were started in Jan.
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Old 04-16-2013, 04:00 PM   #20
SusanN
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Re: Side effects from Herceptin only (after 6 TCH)?

Daughter 1...unbelievable about your mother!!! I am very sorry to hear about this!! Thank you for sharing this!!
I truly believe my infusion nurse thinks I was having a "panic attack!" That ANNOYS me in ways I cannot explain!!

I wonder what it would be like for her to be sitting in my chair...

I know that she isn't even aware of the "severe side effects."

I am going to be bringing up BIG TOPICS of my concerns this Monday to my oncologists...I have more info from you to go by...

Prayers sent her and your way!!
__________________
10/18/12 Found pea size lump right breast
11/7/12 Biopsy
12/14/12 Lumpectomy
1/4/13 Rexcision, NO CLEAR MARGINS!! :(
2/11/13 Mastectomy with Expander Placed
2/15/13 INFECTION at Mastectomy site...emergency Surgery!!! Expander removed :(
DX: DCIS, IDC, Stage 2a, 2.7cm, 1/5 nodes positive
ER/PR-, HER2+++
3/28/13 Port placed
4/1/13 Begin 6 Cycles TCH Therapy
4/1/14 Finished Herceptin!!
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