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Old 09-22-2018, 02:21 PM   #61
Juls
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Join Date: Mar 2014
Location: UK
Posts: 541
Re: Treatment after Kadcyla?

A step forward.

At long last!

Got telephone call from Doctor's Secretary yesterday. Doc wants to do ablation on 3rd Oct

Guess where I'm spending my "big" birthday!
Geez!
Juls
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Old 09-22-2018, 05:12 PM   #62
Carol Ann
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Posts: 1,031
Re: Treatment after Kadcyla?

Progress, YAY!!


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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Old 09-23-2018, 05:10 PM   #63
Laurel
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Location: Hershey, PA. Live The Sweet Life!
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Re: Treatment after Kadcyla?

Well, even having the ablation on your birthday is still a great thing! What a battle you have had. I am honestly in awe of your toughness! You may be reserved, but I think you may have a bit of the "iron fist in the velvet glove" in you! Good luck with the procedure and I hope the pain will be minimal even though on the liver surface.
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Smile On!
Laurel


Dx'd w/multifocal DCIS/IDS 3/08
7mm invasive component
Partial mast. 5/08
Stage 1b, ER 80%, PR 90%, HER-2 6.9 on FISH
0/5 nodes
4 AC, 4 TH finished 9/08
Herceptin every 3 weeks. Finished 7/09
Tamoxifen 10/08. Switched to Femara 8/09
Bilat SPM w/reconstruction 10/08
Clinical Trial w/Clondronate 12/08
Stopped Clondronate--too hard on my gizzard!
Switched back to Tamoxifen due to tendon pain from Femara

10 Years NED
I think I just might hang around awhile....

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Old 09-24-2018, 03:27 PM   #64
Juls
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Re: Treatment after Kadcyla?

Carol Ann -

Thanks! Slow progress but good!

Laurel -

Thanks for your kind words. I first asked for this procedure over 5 years ago. Been a long time coming!

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Old 10-04-2018, 02:36 PM   #65
Juls
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Re: Treatment after Kadcyla?

Ablation done yesterday.
So far so good!

Juls
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Old 10-04-2018, 03:06 PM   #66
Becky
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Re: Treatment after Kadcyla?

And Happy Birthday to you too
__________________
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 14 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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Old 10-04-2018, 08:06 PM   #67
Carol Ann
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Join Date: Dec 2013
Posts: 1,031
Re: Treatment after Kadcyla?

YAY!! And Happy Birthday!


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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Old 10-05-2018, 11:45 AM   #68
Melissa
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Re: Treatment after Kadcyla?

Juls,
Happy Birthday!
Sending healthy vibes your way!
hugs,
Melissa
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Melissa

04/06, (42), 2cm tumor, 7/13 nodes, one positive node under clavicle
mastectomy/reconstruction
grade 3, stage lllb, er-65+, pr-90+, her2+++(80%)
4/AC, 12wks TH then 6wks rads
40 wks herceptin, and tamoxifen.
onc test tamoxifen resistance = poor metabilizer
04/07 ooph & on arimidex
08/07 completed herceptin

04/2018 - 12 years!
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Old 10-05-2018, 12:13 PM   #69
Juls
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Re: Treatment after Kadcyla?

Thanks Becky, Carol Ann & Melissa,


Feel like I've been run over by a truck today!!


Juls

Last edited by Juls; 10-05-2018 at 12:14 PM.. Reason: addition
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Old 10-05-2018, 02:27 PM   #70
nancy dip
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Posts: 41
Re: Treatment after Kadcyla?

best wishes for everything!! nancy
__________________
Found lump myself 8 months after routine mammogram.
29/11/06-WLE and then re-excision to get clear margins.
Tumour was 1.2cms; Grade3; Er+ Pr+ HER2 3+++; SNB negative out of 9 nodes.
Chemo was Epirubicin every 3wks x4 then Xeloda (2wks on, 1wk off) for 4 cycles. ( I am part of the TACT2 trial.)
Rads x25
Arimidex for 5 yrs.
Hoping to start Herceptin within the next 2 weeks (we have to follow the HERA protocol to qualify for Herceptin in the U.K.) I worry about the delay in starting Herceptin!! Started 8/10/07
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Old 10-10-2018, 08:25 AM   #71
Donna H
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Posts: 217
Re: Treatment after Kadcyla?

Sending hugs and strength your way (and belated Happy Birthday!)
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Old 10-12-2018, 10:09 AM   #72
Juls
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Join Date: Mar 2014
Location: UK
Posts: 541
Re: Treatment after Kadcyla?

Thanks Nancy & Donna.


At hospital yesterday & all good after ablation.
My Bilirubin level has been an issue for months but in 1 week bilirubin level has gone down from 47 to 22.
Don't need to go back for 12 weeks!! Yeah!!

I asked again for Herceptin to be reinstated but told "no", to stay on aromasin with zometa. Going to continue stating I think I should still be on Herceptin.


Otherwise taking this as a win!

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Old 12-09-2018, 02:29 PM   #73
Unclaimed
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Posts: 36
Re: Treatment after Kadcyla?

Hi Juls,
How have things been since the ablation? Any luck getting back on Herceptin?
__________________
September 2017: woke up one morning and noticed my wrist was slightly swollen. A puffy wrist. That is how it all started
October 2017: went to orthopaedic surgeon to find out what kind of injury was causing my forearm to swell, orthopaedic surgeon recognizes lymphedema, and sent me to breast clinic
November 17, 2017: biopsy: 4.4x1.7x2.8 mass, IDC
December 2017: treatment by homeopathic physician
January 24 2018: lumps in neck (supraclavical nodes)
January 31, 2018: first appointment with Medical Oncologist
February 1, 2018: first scan, found Mets in bones, possibly liver but inconclusive since I refused dye injection
February 2, 2018: follow up with MO for scan results, he had samples of Capecitabine and advised to take 4 pills every 12 hours for 7 days. Ordered HER2 test which had not been completed on my sample at time of biopsy in November, convinced me to meet with Radiologist, tumor was very large and grown into skin, agreed to try radiation
February 8, 2018: first radiology appointment and first Xgeva
February 9, 2018: follow up with MO, results are back from pathology and my sample is HER2-positive, MO wants me to do this infusion "antibodies" thing...look, I just got my head around radiation, now you want IV stuff????
Febuary 15, 2018: first radiation treatment, cried like a baby
March 1, 2018: first Herceptin infusion, cried uncontrollably
March 2, 2018: radiation treatment halted due to extensive skin damage after just 12 treatments
March 21, 2018: applied to John Hopkins for lymphedema vein bypass surgery
March 22, 2018: second Herceptin infusion, social worker made referral to Physical Therapy for me for lymphedema treatment
March 26, 2018: had assessment for lymphedema and follow up with MO, physical therapist made MO sign waiver because of my active cancer status, MO wants me to add Perjeta to my next infusion...really, more stuff..
April 2, 2018: first lymph drainage massage treatment
April 5, 2018: follow up with Radiologist, skin healed well enough to wear a sports bra...woohoo...not resuming radiation
April 20, 2018: heavy bandages applied to left arm to reduce lymphedema swelling
May 3, 2018: first Perjeta infusion, now on H & P, and Capecitabine, and Xgeva every 3 months
May 30, 2018: first PET scan, came back NEAD
June 15, 2018 discontinue Capecitabine since NEAD
July 31, 2018 Johns Hopkins Plastic and Reconstructive Surgery for consult for Vein Bypass Surgery for lymphedema, surgeon determined I am good candidate and surgery scheduled for October 5th...
October 5, 2018: Lymphaticovenous Anastomosis at Johns Hopkins Hospital. Surgery was poorly done and failed miserably, the swelling is worst than before surgery.
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