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Old 09-01-2017, 07:11 AM   #1
Senior Member
Join Date: Mar 2014
Location: UK
Posts: 563
Kadcyla rash

Hi All

Been on Kadcyla for 9 cycles. All good so far.

Noticed a rash (upper chest & forehead) in last few weeks.
Anyone else have this and any suggestions to get rid of or calm?

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Old 09-05-2017, 04:58 AM   #2
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Join Date: May 2013
Posts: 568
Re: Kadcyla rash

Glad all is well, other than your rash. Fingers crossed for a long, long SE free go on this treatment.
Tracy Arcari
11/12 BSE ignored the lump for SIX months.
5/1/13 IDC ER/PR- HER2/neu+++
5/14/13 Mastectomy and SN biopsy
5/20/13 IDC Stage IIb Grade 3 Nodes 1/4 also IDC and DCIS multi focal in remaining dissected tissue.
5/30/13 MUGA and CT thorax, abdomen & pelvis, establish baseline.
6/4/13 Installed my little purple power port.
6/14/13 Chemo started TCH
6/14/13 Informed of suspicious ares on scans scheduled PET.
7/1/13 PET Scan NED!
9/27/13 FINAL CHEMO taken! ----well, maybe not.
10/15/13 Three little tattoos.
10/24/13 Radiation begins and fourth tattoo placed.
11/27/13 Perfectly radiant! Radiation completed the day before Thanksgiving and so, so much to be thankful for this year and every day hereafter.
1/2/14 Happy New Year, you have a Goiter? Muga down to 59%.
1/17/14 Hashimoto's Dz Dx'd. Now maybe I'll feel BETTER!
5/2/14 Herceptin completed! New kitten!
8/19/14 Prophylactic mastectomy (right) and PORT OUT! I'm DONE and now I really am a SURVIVOR.
2/15 Started not feeling so swell. Memory lapses and GI issues with nausea and blurry vision.
4/30/15 U/S cystic gallbladder, cyst on right ovary and mass in my uterus. GYN consult scheduled---and cancelled. I'm not ready.
5/4/15 Brain MRI clear (big sigh of relief)
7/30/15 Back Pain
8/31/15 Radiograph: compression fracture L2
9/10/15 Bone Scan positive
9/21/15 CT scan conclusive for tumor
10/1/15 CT guided biopsy & Brain to Pelvis MRI reveal additional lesions on spine C6, T10, T11 and L2 is collapsing.
10/8/15 Abbreviated pathology: new tumor(s) poorly differentiated carcinoma consistent with known breast primary.
ER-/PR+ (40%)
HER2/neu+++ Ki-67 4% Pancytokeratin AE1/3 Strong Positivity in all malignant cells.
10/13/15 Abnormal Dexa: moderate risk of fracture to both femoral head/neck R&L. Significant risk to lumbar spine.
10/14/15 Radiation consult back to the cooker.
10/20/15 MUGA 50% down from 54% after a year off Herceptin (???)
10/21/15 Kyphoplasty L2
10/22/15 Re-start Chemo: Perjeta, Herceptin & Taxotere
10/26/15 PET Scan confirms C6, T10-11, L2, new lesion noted at L4 but no visceral involvement---Happy dance!!!
10//29/15 Xgeva
10/29/15 Radiation Simulation--three new tattoos to add to my collection. Just call me Dotty.
10/30/15 CA27-29 63 U/mol (<38 U/mol)
11/3/15 First Trip to see Dr. E. Mayer at DFCI
11/4/15 Surgical consult to re-install my little purple power port.
11/9/15 Radiation treatment one of five.
11/10/15 Installed my little purple power port and not a moment too soon, took them four tries to get an IV started today.
Yes, we really are going down this road again.
12/5/15 CT for suspected pulmonary embolism demonstrates increase in T10-11 mets.
12/8/15 Bone Scan uptake at T10-11 (not seen 9/17/15) & Right 8th Rib (not evident on PET 10/26/15)
12/10/15 Consult Re: PROGRESSION. Halt THP due today. Schedule PET and order TDM1 for next week. PLAN B.
12/14/15 PET scan: NO PROGRESSION! THP is working, metabolic activity minimal. Merry Christmas to me! Sticking with PLAN A, it's working.
1/7/16 Start Taxol weekly instead of Taxotere (has been too taxing and not rebounding between txs.) Zometa instead of Xgeva.
3/28/16 CT shows new sclerotic lesions on T12, L3, L5, L6, right ilium and head of right femur. No uptake on Bone Scan (progression????)
3/31/16 Discontinue Taxol start Arimidex, still getting H&P.
6/2/16 Discontinue Arimidex and start Exemestane.
6/18/16 PET is NEAD!!
7/1/16 Discontinue Exemestane and restart Armidex (SEs)
8/29/16 CT/Bone Scan Stable (still uptake at T10-11)
10/3/16 BSO pathology negative
10/10/16 MRI: Brain clear!
10/14/16 Switched care to Harold Alfond Center for Cancer Care
11/24/16 Xgeva, New MO preference to Zometa
12/12/16 CT/Bone scan Mostly stable significant uptake at L2 plan to PET
1/12/17 PET shows NEAD celebrate with a new puppy!
3/29/17 CT & BS = NEAD
7/31/17 Aetna denies access to H&P <gearing up for a fight>
8/4/17 CT& BS= STABLE
8/9/17 No treatment, Aetna still denying H&P
8/14/17 Aetna appeal approved H&P through February 2018!
2/5/18 CT & BS = STABLE

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Old 09-05-2017, 07:10 AM   #3
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Join Date: Mar 2014
Location: UK
Posts: 563
Re: Kadcyla rash

Thanks Traci

10th cycle of Kadcyla on Thursday. So far all good.

Read a post on another site regarding rash & suggestion is a steroid cream if it gets worse.

Hope all good with you!

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Old 09-05-2017, 05:57 PM   #4
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Join Date: Jun 2014
Posts: 153
Re: Kadcyla rash

Ok, Don't want to miss inform or worry anyone. I was on Herception for 1 yr after
My orginal chemo . NO issues. Was on Arimidex for a year, and noticed lymphnode
lumps in my neck. Very small. CT showed 6 so tiny spots on lung. Went back on
Herception and perjeda (how ever you spell it) It worked. Herception ONLY every
.21 days . It worked for 6 months. Developed rash on breasts that took hydra cortiszone.
Within 3 months NOTICED even smaller lumps on neck. Herception stopped working.
ONLY lymph node affected and Kadcyla wiped it clean. I get cts every 90 days.

I hope you can ask for one if you are not getting them regularly. You may be just
allergic to it. I have been on Kadcyla for a year and 1/2 and I am starting to think
it's not working as well as it did. Right side neck problem, will be seeing Onc. Monday
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Old 09-06-2017, 04:02 AM   #5
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Join Date: Mar 2014
Location: UK
Posts: 563
Re: Kadcyla rash

Hi Ariana

Thanks for info.

I was on Herceptin and Perjeta trial for 19 months until Dec 2015. Unfortunately bone met found so had to come off trial. Moved to Xeloda for a year until it stopped working in Jan 2017.

Got into new trial with Kadcyla & immunotherapy ( or placebo) in March. Because its a trial I have Ct's every 6 weeks. Just had Ct a few days before rash appeared. Doctor had a look & didn't seem over concerned. Next cycle is tomorrow so will mention rash again.

I think I read on the Kadcyla drug site that a rash is a fairly common side effect on Kadcyla. The other Ladies and I have noticed that the side effects on Kadcyla seem to come and go. Some cycles we are tired, others its nausea or flu like symptoms. So far no side effect is consistent!
In general we have all been good on it! Long may that last.

How have you found it?

Hope all goes well on Monday.

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Old 09-07-2017, 04:01 AM   #6
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Join Date: Jun 2014
Posts: 153
Re: Kadcyla rash

Some cycles we are tired, others its nausea or flu like symptoms. So far no side effect is consistent!

I will be tired on one dose--Flu symptoms another. Along with several others.
BUT never at the same time. It seems to change with each round I take.
Then it starts over with the flu--next dose tired etc.
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Old 09-07-2017, 08:15 AM   #7
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Join Date: Mar 2014
Location: UK
Posts: 563
Re: Kadcyla rash

Hi Ariana
Exactly the same!

Just back from hospital & didn't get treatment today as bilirubin too high ( as per trial protocol) First time this has happened. Told not to worry! Thought I might get moved to next week instead but told I can wait 3 weeks.
I'm trusting my Doctor on this!

Rash is side effect of kadcyla and Doctor not worried about it either. Geez - I hope he's right!!
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