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03-31-2014, 04:42 AM
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#1
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Senior Member
Join Date: Feb 2014
Posts: 33
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Herceptin question
I go in today for Herceptin only (I finished my TC & perjetta combo on March 10th) and I have a question for the Herceptin veterans. Those of you who experienced a drop in your EF, does it continue while on Herceptin only or subside? Also, did you have many side effects?
__________________
(Insert... I had my 2nd son at 26 weeks... for the first 15 months of his life I pumped around the clock for his nutrition. Since then-Sept 2012- my breasts went under a huge transformation. That led me to find my lump, I believe...)
Mid september 2013- found a lump in right breast
Had annual already scheduled for Oct. 2nd, where he said he wasn't impressed with the lump, but I urged him to order me a mammogram.
Oct. 14th- At the mammogram the technician said he should've ordered me a diagnostic one...
Oct. 28th- got a call to come back for diagnostic mammogram.
Oct. 30th- diagnostic mamm and ultrasound revealed something suspicious, and a cloudy lymph node. Couldn't get me in for biopsy for 2 weeks
Nov. 1st- called around to another hospital to see if I could be seen earlier... Nov. 4th biopsy scheduled.
Nov. 4th- ultrasound guided needle biopsy, they felt the lymph node looked fine & didn't biopsy.
Nov. 7th- DIAGNOSIS...
Nov. 11th- pathology reveals ER-/PR- HER2+++.
Nov. 13- Met with BS- discussed 85%+++ chance of beating this, neoadjuvant therapy will be best approach.
Nov 14-22-pre-chemo testing. All scans came back unremarkable except for breast MRI revealing something suspicious on left breast also.
Nov. 25th- Began TCHP every three weeks until March 10, 2014!!!
March 31st- began Herceptin only, radiologist says "congratulations, you've had a complete response to the chemo!" Very lucky.
April 15th- lumpectomy/SNB. Pathology reveals clear margins and negative nodes! Time to celebrate!
May 13- June 24- 28 radiation trmts to lumpectomy area, node biopsy area, and sub-clavicular node region, followed by 5 'boost' rads to lumpectomy area only.
Finished with radiation!!!
Herceptin only every 3 weeks until October.
October 27th last Herceptin!!!
November 17th port removed!!!!
P.S. My picture under my user name was taken July 11th after my first trim and color since starting my fight back in November!
July 2015- PET scan results- NED!!! Popping the champagne!
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03-31-2014, 05:50 AM
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#2
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Senior Member
Join Date: Sep 2005
Location: Stockton, NJ
Posts: 4,179
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Re: Herceptin question
The risk is about equal throughout and is ongoing with or without chemo. I was okay throughout but my echo at the end of treatment showed a drop in EF. I went from 65 to 50. Thankfully it was the end of Herceptin. It popped up again as we redid in 3 months to make sure.
__________________
Kind regards
Becky
Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Prolia every 6 months for osteopenia
NED 18 years!
Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
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04-02-2014, 08:36 AM
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#3
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Senior Member
Join Date: Jul 2013
Location: Hot Springs, South Dakota
Posts: 158
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Re: Herceptin question
Ive been on Herceptin for two years, feel very fortunate that the only side effects Ive had was fatigue on and off. Wish you well with you treatment
__________________
Paula T. (saygoon means dog, yes I am Native)
DX March 2012
Stage IV w/ 5 bone mets to spine 2 on ribs
Herceptin, Zometa, Taxotere and Anasterole and of course radiation
2/14/2014 2 mets on pelvic bone
Stop Anasterole continue on Herceptin and Zometa start radiation (again)
2/24/2014 start T-DM1 continue Herceptin and Zometa
4/28 more radiation that brings total to 5 (10 days ea) - I think I will soon glow in the dark....
6/01/2014 Great news! Rib mets gone, 4 of 5 spine mets showing new bone growth and pelvic mets shrinking.
8/28/2014 T11 on spine is being stubborn started Perjeta, Herceptin, Zometa and Taxol - goodbye hair!
9/04/2014 Tomo therapy - pain finally gone
1/3/2015 - starting New Year out as still stable. Feeling positive
2/23/2015 - problems with left leg, bone met flaring up - MORE radiation Whew!
2/24/2015 Stress fracture in right side of pelvic - (great just great) back to wheelchair then walker then.....
2/26/2015 Off Taxol!! Still on Perjeta, Herceptin and Hormone Blocker starting to feel a little more human.
4/10/2015 Cancer has spread to spinal fluid - not sure where I go from here
6/29/2015 Omaya Port placed,begin IT Herceptin on 7/7/2015
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04-03-2014, 07:45 PM
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#4
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Senior Member
Join Date: Dec 2013
Posts: 1,045
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Re: Herceptin question
Fighting fire, I had my first Herceptin alone on Monday too ... how are you doing? I swelled up all over like a hoptoa, especially my feet, they're like Barney Rubble's.
I've been drinking lots of water, I think I'm going to call my onc's office in the am to ask about a diuretic if it isn't at least a bit better in the morning. Especially with the weekend coming up.
Carol Ann
__________________
July 24, 2013: "Infected" Right Nipple and benign cyst removed, pathology report revealed Paget's, DCIS, and ILC 1.25 cm, ER+/Pro+/HER2 equivocal, Grade 2 under benign cyst, previous diagnostic mammo/ultrasound said I was perfectly healthy in both breasts.
Aug 18, 2013: MRI report says Left breast is perfectly healthy "consistent with previous studies".
Sept 2013: I insist on a bilateral mastectomy anyway. Too nervewracking to let left breast remain with higher risk after 3 cancers in right, nipple in right is already gone anyhow.
Sept 18, 2013: Bilateral mastectomy, 11 right nodes removed, ALL negative BUT -- ER+/PRO+/HER2+ tumor, 1.0 cm, Grade 2 found in a piece of "grossly unremarkable" breast tissue from prophylactic mastectomy of left breast, no nodes removed.
Oct 25, 2013: 13 left side nodes removed, ALL negative, Stage 1 across the board, NO RADS needed, YAAAAY! Port also installed.
Nov 25, 2013 Begin 6 rounds TCH.
March 10, 2014 Just finished 6th and LAST Chemo today, YAAAAAY!
March 24, 2014 Echocardiogram to make sure I'm still good for Herceptin every 3 weeks.
March 31, 2014 Echo results NORMAL, first Herceptin all by itself. Now if only my eyes would stop streaming from the Taxotere ... :)
April 21, 2014 Started Arimidex and therapy for "mild" lymphedema in left hand and arm
May 2014 Therapy completed, I have sleeves and gloves for both arms, a Flexi touch lymph pump to hook up to for an hour every day, and I've become an arm bandaging expert. :)
June 2014 Begin Fosamax to prevent osteoporosis; bone scan revealed osteopenia
Nov 17, 2014 FINAL Herceptin!
Dec 4, 2014 My right thigh muscle has been extra achy for days ... I discover a blister rash cluster on the side of my right thigh while taking a shower. Port appointment cancelled until Dec 17, my doc is working me in tomorrow afternoon to see me and the rash. My muscle at least feels less achy.
Dec 5, 2014 Yep, I have shingles. Boo! I start acyclovir and also have a prescription for a painkiller just in case for over the weekend.
Dec 17, 2014 Port is OUT!
January 2016 Shingles again and this time it started where my left breast (where the hidden HER2+++ tumor was!) used to be. My onc nurse got me a same day appointment to see my doc when I called and told her I had a rash on the site. The antiviral meds are working once again, though, so that is good news. :)
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04-04-2014, 04:45 AM
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#5
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Senior Member
Join Date: Feb 2014
Posts: 33
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Re: Herceptin question
The watery eyes are still here... And I also have very swollen ankles. Looks like I've been on my feet for hours on end! But that began just before I went in for my Herceptin only this past Monday. My oncologist didn't seem concerned, just said to elevate and stay active (having a hard time balancing the 2!) I too wonder if a diuretic would help. Needless to say, I'm happy the side effects aren't like the chemo!
I've got surgery in a little over a week and I'm sure I'll swell up from that... There poor feet and ankles. Do you have any support hose/socks? They seem to help me a little when I'm on my feet all day at work.
I think I see some peach fuzz! And some soft hair growing back on my legs. I never thought I'd be looking forward to shaving my legs, but I am now!
__________________
(Insert... I had my 2nd son at 26 weeks... for the first 15 months of his life I pumped around the clock for his nutrition. Since then-Sept 2012- my breasts went under a huge transformation. That led me to find my lump, I believe...)
Mid september 2013- found a lump in right breast
Had annual already scheduled for Oct. 2nd, where he said he wasn't impressed with the lump, but I urged him to order me a mammogram.
Oct. 14th- At the mammogram the technician said he should've ordered me a diagnostic one...
Oct. 28th- got a call to come back for diagnostic mammogram.
Oct. 30th- diagnostic mamm and ultrasound revealed something suspicious, and a cloudy lymph node. Couldn't get me in for biopsy for 2 weeks
Nov. 1st- called around to another hospital to see if I could be seen earlier... Nov. 4th biopsy scheduled.
Nov. 4th- ultrasound guided needle biopsy, they felt the lymph node looked fine & didn't biopsy.
Nov. 7th- DIAGNOSIS...
Nov. 11th- pathology reveals ER-/PR- HER2+++.
Nov. 13- Met with BS- discussed 85%+++ chance of beating this, neoadjuvant therapy will be best approach.
Nov 14-22-pre-chemo testing. All scans came back unremarkable except for breast MRI revealing something suspicious on left breast also.
Nov. 25th- Began TCHP every three weeks until March 10, 2014!!!
March 31st- began Herceptin only, radiologist says "congratulations, you've had a complete response to the chemo!" Very lucky.
April 15th- lumpectomy/SNB. Pathology reveals clear margins and negative nodes! Time to celebrate!
May 13- June 24- 28 radiation trmts to lumpectomy area, node biopsy area, and sub-clavicular node region, followed by 5 'boost' rads to lumpectomy area only.
Finished with radiation!!!
Herceptin only every 3 weeks until October.
October 27th last Herceptin!!!
November 17th port removed!!!!
P.S. My picture under my user name was taken July 11th after my first trim and color since starting my fight back in November!
July 2015- PET scan results- NED!!! Popping the champagne!
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04-04-2014, 07:47 AM
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#6
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Senior Member
Join Date: Dec 2013
Posts: 1,045
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Re: Herceptin question
Hi Fighting Fire,
I am still really waterlogged this morning so I did call my onc's office and talked to the nurse ... the doc is giving me a prescription for Lasix over the weekend, and I have to go in Monday afternoon to see him.
I noticed some stubble on my legs, too ... not so much on my head yet, but that's encouraging! I never shaved my head, I still have wisps of hair, so when the peach fuzz starts I will go to my hair stylist and have her even things out.  Hope its soon!
Have a great weekend ... how are your tastebuds doing, mine are pretty much back to normal, YAAAAY!
Yeah, this is SOOO much better than chemo, WE ROCK!
Carol Ann
__________________
July 24, 2013: "Infected" Right Nipple and benign cyst removed, pathology report revealed Paget's, DCIS, and ILC 1.25 cm, ER+/Pro+/HER2 equivocal, Grade 2 under benign cyst, previous diagnostic mammo/ultrasound said I was perfectly healthy in both breasts.
Aug 18, 2013: MRI report says Left breast is perfectly healthy "consistent with previous studies".
Sept 2013: I insist on a bilateral mastectomy anyway. Too nervewracking to let left breast remain with higher risk after 3 cancers in right, nipple in right is already gone anyhow.
Sept 18, 2013: Bilateral mastectomy, 11 right nodes removed, ALL negative BUT -- ER+/PRO+/HER2+ tumor, 1.0 cm, Grade 2 found in a piece of "grossly unremarkable" breast tissue from prophylactic mastectomy of left breast, no nodes removed.
Oct 25, 2013: 13 left side nodes removed, ALL negative, Stage 1 across the board, NO RADS needed, YAAAAY! Port also installed.
Nov 25, 2013 Begin 6 rounds TCH.
March 10, 2014 Just finished 6th and LAST Chemo today, YAAAAAY!
March 24, 2014 Echocardiogram to make sure I'm still good for Herceptin every 3 weeks.
March 31, 2014 Echo results NORMAL, first Herceptin all by itself. Now if only my eyes would stop streaming from the Taxotere ... :)
April 21, 2014 Started Arimidex and therapy for "mild" lymphedema in left hand and arm
May 2014 Therapy completed, I have sleeves and gloves for both arms, a Flexi touch lymph pump to hook up to for an hour every day, and I've become an arm bandaging expert. :)
June 2014 Begin Fosamax to prevent osteoporosis; bone scan revealed osteopenia
Nov 17, 2014 FINAL Herceptin!
Dec 4, 2014 My right thigh muscle has been extra achy for days ... I discover a blister rash cluster on the side of my right thigh while taking a shower. Port appointment cancelled until Dec 17, my doc is working me in tomorrow afternoon to see me and the rash. My muscle at least feels less achy.
Dec 5, 2014 Yep, I have shingles. Boo! I start acyclovir and also have a prescription for a painkiller just in case for over the weekend.
Dec 17, 2014 Port is OUT!
January 2016 Shingles again and this time it started where my left breast (where the hidden HER2+++ tumor was!) used to be. My onc nurse got me a same day appointment to see my doc when I called and told her I had a rash on the site. The antiviral meds are working once again, though, so that is good news. :)
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04-04-2014, 07:51 AM
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#7
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Senior Member
Join Date: Dec 2013
Posts: 1,045
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Re: Herceptin question
Oh and my eyes are still streaming too, it seems to be a bit better, they're more like watery vs gushing, I'll take what I can get!
CA
__________________
July 24, 2013: "Infected" Right Nipple and benign cyst removed, pathology report revealed Paget's, DCIS, and ILC 1.25 cm, ER+/Pro+/HER2 equivocal, Grade 2 under benign cyst, previous diagnostic mammo/ultrasound said I was perfectly healthy in both breasts.
Aug 18, 2013: MRI report says Left breast is perfectly healthy "consistent with previous studies".
Sept 2013: I insist on a bilateral mastectomy anyway. Too nervewracking to let left breast remain with higher risk after 3 cancers in right, nipple in right is already gone anyhow.
Sept 18, 2013: Bilateral mastectomy, 11 right nodes removed, ALL negative BUT -- ER+/PRO+/HER2+ tumor, 1.0 cm, Grade 2 found in a piece of "grossly unremarkable" breast tissue from prophylactic mastectomy of left breast, no nodes removed.
Oct 25, 2013: 13 left side nodes removed, ALL negative, Stage 1 across the board, NO RADS needed, YAAAAY! Port also installed.
Nov 25, 2013 Begin 6 rounds TCH.
March 10, 2014 Just finished 6th and LAST Chemo today, YAAAAAY!
March 24, 2014 Echocardiogram to make sure I'm still good for Herceptin every 3 weeks.
March 31, 2014 Echo results NORMAL, first Herceptin all by itself. Now if only my eyes would stop streaming from the Taxotere ... :)
April 21, 2014 Started Arimidex and therapy for "mild" lymphedema in left hand and arm
May 2014 Therapy completed, I have sleeves and gloves for both arms, a Flexi touch lymph pump to hook up to for an hour every day, and I've become an arm bandaging expert. :)
June 2014 Begin Fosamax to prevent osteoporosis; bone scan revealed osteopenia
Nov 17, 2014 FINAL Herceptin!
Dec 4, 2014 My right thigh muscle has been extra achy for days ... I discover a blister rash cluster on the side of my right thigh while taking a shower. Port appointment cancelled until Dec 17, my doc is working me in tomorrow afternoon to see me and the rash. My muscle at least feels less achy.
Dec 5, 2014 Yep, I have shingles. Boo! I start acyclovir and also have a prescription for a painkiller just in case for over the weekend.
Dec 17, 2014 Port is OUT!
January 2016 Shingles again and this time it started where my left breast (where the hidden HER2+++ tumor was!) used to be. My onc nurse got me a same day appointment to see my doc when I called and told her I had a rash on the site. The antiviral meds are working once again, though, so that is good news. :)
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04-04-2014, 11:48 AM
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#8
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Senior Member
Join Date: Feb 2014
Posts: 33
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Re: Herceptin question
My taste buds are also back to normal! Such a great feeling.
I'm going to see my surgeon on Tuesday and I hope these ankles subside by then! When I can I elevate them higher than my heart, and I can't drink enough water, so I feel like I'm doing my part. If the swelling doesn't come down I'll also be taking some Lasix. It's funny how this didn't happen when we were receiving all that extra fluid over the last 20-some weeks. Why did it wait til now??? Oh well...
Onward and upward!
__________________
(Insert... I had my 2nd son at 26 weeks... for the first 15 months of his life I pumped around the clock for his nutrition. Since then-Sept 2012- my breasts went under a huge transformation. That led me to find my lump, I believe...)
Mid september 2013- found a lump in right breast
Had annual already scheduled for Oct. 2nd, where he said he wasn't impressed with the lump, but I urged him to order me a mammogram.
Oct. 14th- At the mammogram the technician said he should've ordered me a diagnostic one...
Oct. 28th- got a call to come back for diagnostic mammogram.
Oct. 30th- diagnostic mamm and ultrasound revealed something suspicious, and a cloudy lymph node. Couldn't get me in for biopsy for 2 weeks
Nov. 1st- called around to another hospital to see if I could be seen earlier... Nov. 4th biopsy scheduled.
Nov. 4th- ultrasound guided needle biopsy, they felt the lymph node looked fine & didn't biopsy.
Nov. 7th- DIAGNOSIS...
Nov. 11th- pathology reveals ER-/PR- HER2+++.
Nov. 13- Met with BS- discussed 85%+++ chance of beating this, neoadjuvant therapy will be best approach.
Nov 14-22-pre-chemo testing. All scans came back unremarkable except for breast MRI revealing something suspicious on left breast also.
Nov. 25th- Began TCHP every three weeks until March 10, 2014!!!
March 31st- began Herceptin only, radiologist says "congratulations, you've had a complete response to the chemo!" Very lucky.
April 15th- lumpectomy/SNB. Pathology reveals clear margins and negative nodes! Time to celebrate!
May 13- June 24- 28 radiation trmts to lumpectomy area, node biopsy area, and sub-clavicular node region, followed by 5 'boost' rads to lumpectomy area only.
Finished with radiation!!!
Herceptin only every 3 weeks until October.
October 27th last Herceptin!!!
November 17th port removed!!!!
P.S. My picture under my user name was taken July 11th after my first trim and color since starting my fight back in November!
July 2015- PET scan results- NED!!! Popping the champagne!
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04-04-2014, 02:20 PM
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#9
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Senior Member
Join Date: Dec 2013
Posts: 1,045
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Re: Herceptin question
I was thinking the same thing! But, like you say, onward and upward ... I just got out of an Epsom Salt tub nap, I put my feet up on the wall above the tub and dozed right off. It was a dirty job, but somebody had to do it!
I've taken the Lasix for today (just 20 mg, minimum strength) we'll see how bloated I am tomorrow morning ... still slugging down lots of H2O too.
TGIF!!
CA
__________________
July 24, 2013: "Infected" Right Nipple and benign cyst removed, pathology report revealed Paget's, DCIS, and ILC 1.25 cm, ER+/Pro+/HER2 equivocal, Grade 2 under benign cyst, previous diagnostic mammo/ultrasound said I was perfectly healthy in both breasts.
Aug 18, 2013: MRI report says Left breast is perfectly healthy "consistent with previous studies".
Sept 2013: I insist on a bilateral mastectomy anyway. Too nervewracking to let left breast remain with higher risk after 3 cancers in right, nipple in right is already gone anyhow.
Sept 18, 2013: Bilateral mastectomy, 11 right nodes removed, ALL negative BUT -- ER+/PRO+/HER2+ tumor, 1.0 cm, Grade 2 found in a piece of "grossly unremarkable" breast tissue from prophylactic mastectomy of left breast, no nodes removed.
Oct 25, 2013: 13 left side nodes removed, ALL negative, Stage 1 across the board, NO RADS needed, YAAAAY! Port also installed.
Nov 25, 2013 Begin 6 rounds TCH.
March 10, 2014 Just finished 6th and LAST Chemo today, YAAAAAY!
March 24, 2014 Echocardiogram to make sure I'm still good for Herceptin every 3 weeks.
March 31, 2014 Echo results NORMAL, first Herceptin all by itself. Now if only my eyes would stop streaming from the Taxotere ... :)
April 21, 2014 Started Arimidex and therapy for "mild" lymphedema in left hand and arm
May 2014 Therapy completed, I have sleeves and gloves for both arms, a Flexi touch lymph pump to hook up to for an hour every day, and I've become an arm bandaging expert. :)
June 2014 Begin Fosamax to prevent osteoporosis; bone scan revealed osteopenia
Nov 17, 2014 FINAL Herceptin!
Dec 4, 2014 My right thigh muscle has been extra achy for days ... I discover a blister rash cluster on the side of my right thigh while taking a shower. Port appointment cancelled until Dec 17, my doc is working me in tomorrow afternoon to see me and the rash. My muscle at least feels less achy.
Dec 5, 2014 Yep, I have shingles. Boo! I start acyclovir and also have a prescription for a painkiller just in case for over the weekend.
Dec 17, 2014 Port is OUT!
January 2016 Shingles again and this time it started where my left breast (where the hidden HER2+++ tumor was!) used to be. My onc nurse got me a same day appointment to see my doc when I called and told her I had a rash on the site. The antiviral meds are working once again, though, so that is good news. :)
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04-04-2014, 03:24 PM
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#10
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Senior Member
Join Date: Oct 2005
Location: LAND OF YES!
w/home in Boca Raton, Florida
Orig from L.I., N.Y.
Ever hovering IN THE NOW...
Posts: 1,904
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Re: Herceptin question
I was on Herceptin for -- 10 yrs.
The drippy eyes came w/the Taxotere. Severely dry eyes, meaning use preservative free saline drops (I use Bausch & Lomb Soothe individual vials)!
I was told by ophthalmologist #5 to use drops EVERY HOUR all day. I did this for 2 wks and began improving. I now use first thing in the AM and last thing at night.
Also I take LUTEIN 20 mg w/1 mg of Zeathin daily.
I get all my supplements from Vitacost.com
This anti-oxidant helps the eyes remain healthy and -- stops the tearing which occasionally was returning for days on end. I was scheduled for surgery as ophthalmologist couldn't get into tear ducts. Too clogged, needed a specialist.
I took the Lutein and -- the tearing has stopped. I canceled the surgery.
Yes swelling, puffiness, face, feet, even calves from Vitamin H. And fatigue, but I have always had a fatigue issue.
EF went from 65% to 50% on H, as others have mentioned. I get regular ECHO cardiograms to check on my heart.
Nutritional oncologist recommended DR. BEST ARGENINE (500 mg X 2 on an empty stomach (I do first thing in the AM). Sustained plus immediate release. I'm back up to 65%.
They told me if I dropped below 50% they would have to stop the H. And I believed, it was essential to my survival. Hence I stayed on from '98 - '08. Been off for almost 6 yrs.
I take hydrochlorothiazide 20 mg for my blood pressure, in addition to other bp meds and it helps the puffiness, but when I look at pix from those yrs on H, I have moon face. Still, worth it all. Still did makeup, wig and earrings... Makes me feel better.
Wishing you much good fortune, my Sister!
ANDI
__________________
Andi BB
'95 post-meno dx Invasive LOBULAR w/9cm tumor! YIKES + 2/21 nodes. Clear mammo 10 mnths earlier. Mastec/tram flap reconst/PORT/8 mnths chemo (4Adria/8CMF). Borderline ER/PR. Tamoxifen 2 yrs. Felt BLESSED. I could walk and talk, feed and bathe myself! I KNEW I would survive...
'98 -- multiple mets to liver. HER2+ 80%. ER/PR- Raging, highly aggressive tumors spreading fast. New PORT. 9 mnths Taxotere Fought fire w/fire! Pronounced in cautious remission 5/99. Taxotere weekly for 6 wks, 2 wks off -- for 9 mnths. TALK ABOUT GRUELING! (I believe they've altered that protocol since those days -- sure hope so!!)
+ good old Vit H wkly for 1st 3 yrs, then triple dosage ev 3 wks for 7 yrs more... The "easy" chemo, right?! Not a walk in the park, but not a freight train coming at 'ya either...
Added Herceptin Nov '98 (6 wks after FDA fast-tracked it for met bc). Stayed w/Vit H till July '08! Now I AM FREE! Humbly and eternally grateful for this life-saving drug! NED since '99 and planning on keeping it that way. To hell w/poor prognosis and nasty stats! STOPPED VIT H JULY '08...! REMAIN STABLE... Eternally grateful...Yes is a world & in this world of yes live (skillfully curled) all worlds ... (e e cummings) EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE. Smile KNOWING you too can be a miracle. Up to me and God now...
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04-04-2014, 05:43 PM
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#11
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Senior Member
Join Date: Feb 2014
Posts: 33
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Re: Herceptin question
Andi- thank you for the info! Carol Ann do you copy?
This is why I love this blog. Info from women who've gone through this, not a Dr. Or nurse who mean well, but really have no clue what these side effects actually do to us! I feel like I'm 100 years old carrying tissues with me in my sleeves
Another question- my poor nails. Ivebeen soaking them in peroxide and they all (except the thumbs) have lifted away from my finger. They don't really hurt, but they ooze and look hideous. I keep band aids on them at all times, and wash them constantly when home. Any easy fix here?
__________________
(Insert... I had my 2nd son at 26 weeks... for the first 15 months of his life I pumped around the clock for his nutrition. Since then-Sept 2012- my breasts went under a huge transformation. That led me to find my lump, I believe...)
Mid september 2013- found a lump in right breast
Had annual already scheduled for Oct. 2nd, where he said he wasn't impressed with the lump, but I urged him to order me a mammogram.
Oct. 14th- At the mammogram the technician said he should've ordered me a diagnostic one...
Oct. 28th- got a call to come back for diagnostic mammogram.
Oct. 30th- diagnostic mamm and ultrasound revealed something suspicious, and a cloudy lymph node. Couldn't get me in for biopsy for 2 weeks
Nov. 1st- called around to another hospital to see if I could be seen earlier... Nov. 4th biopsy scheduled.
Nov. 4th- ultrasound guided needle biopsy, they felt the lymph node looked fine & didn't biopsy.
Nov. 7th- DIAGNOSIS...
Nov. 11th- pathology reveals ER-/PR- HER2+++.
Nov. 13- Met with BS- discussed 85%+++ chance of beating this, neoadjuvant therapy will be best approach.
Nov 14-22-pre-chemo testing. All scans came back unremarkable except for breast MRI revealing something suspicious on left breast also.
Nov. 25th- Began TCHP every three weeks until March 10, 2014!!!
March 31st- began Herceptin only, radiologist says "congratulations, you've had a complete response to the chemo!" Very lucky.
April 15th- lumpectomy/SNB. Pathology reveals clear margins and negative nodes! Time to celebrate!
May 13- June 24- 28 radiation trmts to lumpectomy area, node biopsy area, and sub-clavicular node region, followed by 5 'boost' rads to lumpectomy area only.
Finished with radiation!!!
Herceptin only every 3 weeks until October.
October 27th last Herceptin!!!
November 17th port removed!!!!
P.S. My picture under my user name was taken July 11th after my first trim and color since starting my fight back in November!
July 2015- PET scan results- NED!!! Popping the champagne!
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04-04-2014, 07:13 PM
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#12
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Senior Member
Join Date: Dec 2013
Posts: 1,045
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Re: Herceptin question
Yes, I got it, thanks Andi! And Fighting Fire! I am so grateful for both of you, this forum and everyone on it! I didn't find it until right before I started chemo ... when I was recovering from surgery #3, before my double mastectomy I didn't know I was HER2+++ because that tumor was found on the "prophylactic" side.
Have a super weekend!
CA
__________________
July 24, 2013: "Infected" Right Nipple and benign cyst removed, pathology report revealed Paget's, DCIS, and ILC 1.25 cm, ER+/Pro+/HER2 equivocal, Grade 2 under benign cyst, previous diagnostic mammo/ultrasound said I was perfectly healthy in both breasts.
Aug 18, 2013: MRI report says Left breast is perfectly healthy "consistent with previous studies".
Sept 2013: I insist on a bilateral mastectomy anyway. Too nervewracking to let left breast remain with higher risk after 3 cancers in right, nipple in right is already gone anyhow.
Sept 18, 2013: Bilateral mastectomy, 11 right nodes removed, ALL negative BUT -- ER+/PRO+/HER2+ tumor, 1.0 cm, Grade 2 found in a piece of "grossly unremarkable" breast tissue from prophylactic mastectomy of left breast, no nodes removed.
Oct 25, 2013: 13 left side nodes removed, ALL negative, Stage 1 across the board, NO RADS needed, YAAAAY! Port also installed.
Nov 25, 2013 Begin 6 rounds TCH.
March 10, 2014 Just finished 6th and LAST Chemo today, YAAAAAY!
March 24, 2014 Echocardiogram to make sure I'm still good for Herceptin every 3 weeks.
March 31, 2014 Echo results NORMAL, first Herceptin all by itself. Now if only my eyes would stop streaming from the Taxotere ... :)
April 21, 2014 Started Arimidex and therapy for "mild" lymphedema in left hand and arm
May 2014 Therapy completed, I have sleeves and gloves for both arms, a Flexi touch lymph pump to hook up to for an hour every day, and I've become an arm bandaging expert. :)
June 2014 Begin Fosamax to prevent osteoporosis; bone scan revealed osteopenia
Nov 17, 2014 FINAL Herceptin!
Dec 4, 2014 My right thigh muscle has been extra achy for days ... I discover a blister rash cluster on the side of my right thigh while taking a shower. Port appointment cancelled until Dec 17, my doc is working me in tomorrow afternoon to see me and the rash. My muscle at least feels less achy.
Dec 5, 2014 Yep, I have shingles. Boo! I start acyclovir and also have a prescription for a painkiller just in case for over the weekend.
Dec 17, 2014 Port is OUT!
January 2016 Shingles again and this time it started where my left breast (where the hidden HER2+++ tumor was!) used to be. My onc nurse got me a same day appointment to see my doc when I called and told her I had a rash on the site. The antiviral meds are working once again, though, so that is good news. :)
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04-04-2014, 07:44 PM
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#13
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Senior Member
Join Date: Dec 2013
Posts: 1,045
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Re: Herceptin question
Fighting Fire, I saw some posts that talked about vinegar, jojoba oil, and coconut oil for the sore/separating fingernail problem. Also cipro (antibiotic) if it turns out they are infected. Mine have been sore but so far they are still on my fingers, I was on cipro for a UTI so maybe it helped my nails too.
If you put "fingernails" into the search box that will bring up all the posts ... I hope they feel better SOON!!
CA
__________________
July 24, 2013: "Infected" Right Nipple and benign cyst removed, pathology report revealed Paget's, DCIS, and ILC 1.25 cm, ER+/Pro+/HER2 equivocal, Grade 2 under benign cyst, previous diagnostic mammo/ultrasound said I was perfectly healthy in both breasts.
Aug 18, 2013: MRI report says Left breast is perfectly healthy "consistent with previous studies".
Sept 2013: I insist on a bilateral mastectomy anyway. Too nervewracking to let left breast remain with higher risk after 3 cancers in right, nipple in right is already gone anyhow.
Sept 18, 2013: Bilateral mastectomy, 11 right nodes removed, ALL negative BUT -- ER+/PRO+/HER2+ tumor, 1.0 cm, Grade 2 found in a piece of "grossly unremarkable" breast tissue from prophylactic mastectomy of left breast, no nodes removed.
Oct 25, 2013: 13 left side nodes removed, ALL negative, Stage 1 across the board, NO RADS needed, YAAAAY! Port also installed.
Nov 25, 2013 Begin 6 rounds TCH.
March 10, 2014 Just finished 6th and LAST Chemo today, YAAAAAY!
March 24, 2014 Echocardiogram to make sure I'm still good for Herceptin every 3 weeks.
March 31, 2014 Echo results NORMAL, first Herceptin all by itself. Now if only my eyes would stop streaming from the Taxotere ... :)
April 21, 2014 Started Arimidex and therapy for "mild" lymphedema in left hand and arm
May 2014 Therapy completed, I have sleeves and gloves for both arms, a Flexi touch lymph pump to hook up to for an hour every day, and I've become an arm bandaging expert. :)
June 2014 Begin Fosamax to prevent osteoporosis; bone scan revealed osteopenia
Nov 17, 2014 FINAL Herceptin!
Dec 4, 2014 My right thigh muscle has been extra achy for days ... I discover a blister rash cluster on the side of my right thigh while taking a shower. Port appointment cancelled until Dec 17, my doc is working me in tomorrow afternoon to see me and the rash. My muscle at least feels less achy.
Dec 5, 2014 Yep, I have shingles. Boo! I start acyclovir and also have a prescription for a painkiller just in case for over the weekend.
Dec 17, 2014 Port is OUT!
January 2016 Shingles again and this time it started where my left breast (where the hidden HER2+++ tumor was!) used to be. My onc nurse got me a same day appointment to see my doc when I called and told her I had a rash on the site. The antiviral meds are working once again, though, so that is good news. :)
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04-04-2014, 09:07 PM
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#14
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Senior Member
Join Date: Jul 2011
Location: Sydney, Australia
Posts: 473
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Re: Herceptin question
Hi FF
I've been on Herceptin continuously since Jan 2008. Had a drop in the EF early on to around 50 (from memory), so onc tested again, but from learning here about the benefit of Co-Enzyme Q10 for heart muscle function, and taking it ever since every day, EF went up again, and has been sitting ever since at 54. Only side effects I get is dry eyes, and as Andi BB mentions, I also use eye drops every few hours (Systane Ultra). I also get split nails. Other than that, I find Herceptin very tolerable. I do have weekly acupuncture, and I believe very much that it helps my body manage well when on Herceptin, or when having chemo.
Best wishes
Marie
__________________
dx Dec 2000 dcis 2.5cm clear sentinel node, ER/PR- Her-2+
lumpectomy, 6 cycles AC, 6 weeks rads
October 2007 three x 2.5cm lung mets. 8 months Taxol, started Herceptin and continue. Significant reduction in lung mets.
June 2011 3cm x 4cm liver tumour. Started Abraxane and continue with Herceptin.
November 2011. Finished with Abraxane, continue with just Herceptin. Liver tumour now reduced to 15mm x 12mm. Lung tumour now 10mm x 0.5mm
February 2012. Scans show everything stable, and brain scan clear.
July 2012. PET/CT scans show I'm in remission - no active cancer!
]Dec CT brain cllear, lungs stable, liver tumour has increased to 20mm. PET scans showed active liver met and active lung thinglet, and possible bone met.
Jan 2013 recommence Abraxane, continue with Herceptin.
June 2013 finish Cycle 6 Abraxane, continue with Herceptin. 30% reduction in liver tumour, everything stable.
December 2013. CA15-3 on rise.
February 2014. PET and CT scans show single liver tumour has increased to 35mm. No other activity.
March 2014. Planned for SBRT for liver met, but couldn't have treatment as tumour too close to bowel. Continue Herceptin.
April 2014. Surgeon advises that I am a good candidate for liver resection, so will have operation early May (after camping holiday). Tumour now 44mm x 29mm.
May 7, 2014. Two liver tumours surgically removed. Third of liver removed, and gall bladder. Am I NED?May 2014. Pathology of tumour shows it's now ER+ (95% staining).
June 2014. CA15-3 has decreased to 18 from a pre-surgery reading of 59!
June 2014. Started Femara, continue with Herceptin.
July 2014. Stop Femara due to severe Osteoporosis. Commence Tamoxifen, continue Herceptin. Waiting to hear if I can have Aclasta infusion.
August 2014. CA15-3 has decreased further to 12 - YAY!
October 2014. Aclasta infusion for Osteoporosis. November 2014, CA15-3 decreased to 11. Scans of liver all clear, something new showing up on lung, but just watching at the moment.
November 2015. Started SBRT on solitary lung met.
November 2015. Bone density scan showed very good improvement so back on Femara - yay!
December 2016. 6 treatments of SBRT radiation on lung. Seems to have had some effect.
June 2016. CA15-3 still stable and low at 9.
June 2016. Started subcutaneous Herceptin replacing infusion.
Jan 2017. LVEF dropped to 46%. Stopped Herceptin.
Feb 2017. Started ACE Inhibitor and BETA Blocker. Still off Herceptin.
Aug 2017. Two new mets - Portacaval lymph node and mediastinal lymph node.
Aug 2017. Blood tests show extremely elevated liver enzyme levels. Many tests to investigate.
Sept 2017. Portacaval lymph node blocking liver bile duct causing liver enzyme and Bilirubin problems.
Oct 2017. 8cm stent inserted into liver bile duct. Procedure caused pancreatitis, and hospitalised for 3 days. Liver enzymes improving rapidly.
Nov 2017. Commenced 4 weeks of radiation on Portacaval lymph node. 5 week break before chemo.
Jan 2018. CT scan. 11 new small liver mets, and new superclavical lymph node med.
Jan 2018. Start Kadcyla. CA15-3 426.
Apr 2018. First scans since starting Kadcyla. All tumours reducing. CA15-3 dropped to 30 from 426.
Dec 2019. Still on Kadcyla, but two small brain mets have been treated in the past month with SRS. CA15-3 stable for 12 months at 11.
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04-05-2014, 04:02 PM
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#15
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Senior Member
Join Date: Oct 2005
Location: LAND OF YES!
w/home in Boca Raton, Florida
Orig from L.I., N.Y.
Ever hovering IN THE NOW...
Posts: 1,904
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Re: Herceptin question
Fire,
I too love this blog, which I didn't have during my episode 1 & 2... my joy to share. We all learn so much from sharing.
The drippy eye thing, lol carrying tissues -- I kept mine in my bra, much to my grown dghtrs dismay. Otherwise I was clutching a tissue every waking hr and had a ziploc in my handbag filled with seriously soggy tissues to throw away. Hard eating, cutting whatever and dabbing eyes alternately. But I could spot everyone on Taxotere in the chemo room -- dabbing.
Poor nails. From Taxotere -- they turned BLACK and lifted off the nailbed. I went to top dermatologist who consulted one of his big medical journals and found that this could be a side effect. He assured me the oozy stuff was not infected. That was a relief. So I stopped wearing my rings, not wanting to draw any attention to my hands, and had manis -- w/dark red nail polish to camoflauge... Assured nail tech that my nails were not infected.
After a while I had "little girl nails" one manicurist told me. Thin and frail. So not the rest of me, too bad! They are thicker now with Deborah Lippmann Hard Rock base and top coat. But my right hand nails tend to split vertically often and I carry a file so I don't snag and make things worse.
FIRE -- I READ YOUR AVATAR! These docs who are not concerned/impressed with our lumps are regularly pushed by women like us to go further. Should not be necessary OBVIOUSLY!
With you, it reminds me of when I was in my 40s and presenting with 180 over 100 blood pressure. Docs would say, you're probably nervous. I would assure them, I was not. They'd take it again and I'd be 160 over 100. They just kept ignoring me. I was too young. Same with menopause. Hot flashing all over the place, going from every 28 days between 10 and 11 A.M. getting my period and suddenly going 6-8 wks and practically hemorrhaging uncharacteristically. Docs just kept denying I was peri-menopausal. Geez!!!!!!!!!!!!
My Dad had died of heart disease at age 63. But I was a woman. And young.
When discussing family history I'd write that my Grandmother and Aunt had bc. They'd ask -- maternal or paternal. Swear to God! I'd say paternal, and they'd wave it off. INSANITY!
Fire, ultrasound needle guided biopsy AND THEY DIDN'T BIOPSY??? Determined it looked fine???
YES WE ALL NEED A DIAGNOSTIC MAMMO. And I get a sono as well cause I was lobular and they hide. Been STABLE since '99 but -- last June -- mammo was fine BUT they found something
new with the US! Had to have a needle guided biopsy. MAN, THAT SUCKED. Really hurt. And for months afterward. Still now, I sometimes get that pain when one of my 10 lb Maltese pounce on me in bed.
Stay proactive dear Sister! Ask questions. Speak up. Be a lady, but be persistent! You too Carol Ann. And ALL of us.
Marie, I too have been doing Co Enzyme Q10 (150 mg) twice a day since 1998!!! Good for lots of things! Even gums. You are amazing. You go girl!
Had my 2nd port for 12 yrs!! When I had it removed in outpatient surgical center they asked a thousand questions and when they asked -- do you know why you are here -- I said -- to remove my 12 yr old port. She glanced up at me, looked deep into my eyes and said, I'm going to write exactly what you said. And the nurses started gathering. Asking me another thousand questions, like, Do you believe your positive attitude helped?, Do you know how amazing that is and other utterly awesome questions re mindbody and spirituality!
I left on a high for mnths!!!
BE WELL. STAY IN TOUCH. SHARE.
LOVE,
ANDI
__________________
Andi BB
'95 post-meno dx Invasive LOBULAR w/9cm tumor! YIKES + 2/21 nodes. Clear mammo 10 mnths earlier. Mastec/tram flap reconst/PORT/8 mnths chemo (4Adria/8CMF). Borderline ER/PR. Tamoxifen 2 yrs. Felt BLESSED. I could walk and talk, feed and bathe myself! I KNEW I would survive...
'98 -- multiple mets to liver. HER2+ 80%. ER/PR- Raging, highly aggressive tumors spreading fast. New PORT. 9 mnths Taxotere Fought fire w/fire! Pronounced in cautious remission 5/99. Taxotere weekly for 6 wks, 2 wks off -- for 9 mnths. TALK ABOUT GRUELING! (I believe they've altered that protocol since those days -- sure hope so!!)
+ good old Vit H wkly for 1st 3 yrs, then triple dosage ev 3 wks for 7 yrs more... The "easy" chemo, right?! Not a walk in the park, but not a freight train coming at 'ya either...
Added Herceptin Nov '98 (6 wks after FDA fast-tracked it for met bc). Stayed w/Vit H till July '08! Now I AM FREE! Humbly and eternally grateful for this life-saving drug! NED since '99 and planning on keeping it that way. To hell w/poor prognosis and nasty stats! STOPPED VIT H JULY '08...! REMAIN STABLE... Eternally grateful...Yes is a world & in this world of yes live (skillfully curled) all worlds ... (e e cummings) EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE. Smile KNOWING you too can be a miracle. Up to me and God now...
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