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Old 12-19-2011, 03:56 PM   #1
Kroesen
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Pictures of Herceptin Rash

Is there anyone out there that would have pictures that they could share with me that show a Herceptin rash? I've checked online, but to no avail. I would like to have something ready to compare before my next appointment Friday. Unless there is some miracle out there that shows that I can stay on Herceptin with rash covering more of my body than skin, I will be having to find another treatment plan.

I'm desperate.
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Old 12-20-2011, 05:17 AM   #2
Ellie F
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Re: Pictures of Herceptin Rash

Sorry to hear this news. I only have pics of my taxotere rash.
I personally haven't seen a herceptin rash and the only allergic reaction I have seen has involved lower back pain during an infusion.
Hopefully someone will have some pics to help.
Ellie
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Old 12-20-2011, 05:31 AM   #3
sarah
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Re: Pictures of Herceptin Rash

No, but now I wish I had taken some photos but they were disgusting! open sores!!!! but you're right, we should document all these things to help others in the future. I still have tiny white scars from them.
health and happiness
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Old 12-20-2011, 07:26 AM   #4
Kroesen
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Re: Pictures of Herceptin Rash

Sarah,

Is there some place that I can upload pictures of my rash and you could tell me if it looked like the same type?
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Old 12-20-2011, 08:46 AM   #5
Kroesen
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Re: Pictures of Herceptin Rash

http://kroesen-cancer.blogspot.com/2...umpy-ride.html

Please try this link. I just started a blog so I could have pictures of what my rash looks like. I think it is important for others out there to see and respond. Please let me know if this works.
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Old 12-20-2011, 10:22 AM   #6
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Re: Pictures of Herceptin Rash

Wow! Can Benadryl help with this? Does your oncologist know?

Hope you get relief soon,
Karen
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World Trade Center Survivor (56th Floor/North Tower): 14 years and still just like yesterday.
Graves Disease, became Euthyroid via Radioactive Iodine, June 2001.
Thyroid Eye Disease. 2003. Decompression surgery in 2009; eyelid lowering surgery in 2010.
Diagnosed: June 2010, liver mets. ER-/PR+10%; HER2+++.
July 2010: Begin Taxol/Herceptin. Eliminate sugar from diet. No surgery or radiation.
January 2011: NED
April 2011: Progression in liver only. Other previous affected areas eradicated. Stop Taxol/Herceptin after 32 infusions.
May 2011: Brain MRI: clear.
May 2011: Begin Tykerb daily, Xeloda twice per day for one week on, one week off, and Herceptin.
November 2011: Progression in liver. All other tumors remain eradicated.
December 2011: BEGIN TRIAL #09-093 Taxol, MCC-DM1 (T-DM1), Perjeta.
Trial requires scans every six weeks, bloodwork and infusions weekly.
Brain MRI: clear.
January 2012: NED. Liver mets, good riddance!
March 2012: NED. Developed SMA (rare blood clot) in intestinal artery and loss of sight in right eye due to optical nerve neuropathy. Resolved when Taxol removed this month.
Continue Protocol of T-DM1 weekly and Perjeta every 3 weeks.
May 2012: NED.
June 2012: Brain MRI: clear.
June-December 2012: NED.
December 2012: TRIAL CONCLUDED; ENTER TRIAL EXTENSION #09-037. CT, Brain MRI, bone scan: clear. NED.
January-March 2013: NED.
June 2013: Brain MRI: clear. CEA upticking; CT shows new met on liver.
July 3, 2013: DISASTER STRIKES during liver ablation: sloppy surgeon cuts intercostal artery and I bleed out, lose 3.5 liters of blood, have major hemothorax, and collapsed lung requiring emergency resuscitative thoracotomy, lung surgery, rib rearrangement and cutting deep connective tissue, transfusion. Ablation incomplete. This life-saving procedure would end up causing me unforgiving pain with every movement I make, permanently, otherwise known as forever.
July 26, 2013: Try Navelbine/Herceptin. Body too weak after surgery and transfusion. Fever. CEA: Normal.
August 16, 2016: second dose Navelbine/Herceptin; CEA: Normal. Will skip doses. Watching and waiting.
September 2013: NED, Herceptin only. CEA: Normal. Started Arimidex.
October-November 2013: NED. Herceptin and Arimidex. CEA, CA125, 15-3: Normal.
December 2013: Something brewing. PET lights up on little spot on liver; CEA upward trend, just outside normal. PET and triphasic liver scan confirm Little Met. Restart Perjeta with Herceptin, stay on Arimidex. Genomic sequencing completed for future treatments, if necessary.
January 2014: Ablate Little Met on the 6th. Happy New Year.
March 2014: Brain MRI: clear. PET/CT reveal liver mets return; new lung mets. This is not funny.
March 2014: BEGIN TRIAL #10-005 A(11)-Temsirolimus plus Neratinib.
April 2014: Genomic testing indicated they could work, they did not. Very strange drug combo for me, felt weird.
April 2014: Started Navelbine and Herceptin. Needed something tried and true, but had significant progression.
June 2014: Doxil and Herceptin.
July 2014: Progression. Got nothing out of it. Brain: NED.
July 2014: Add integrative medical hematologist-oncologist to my team. Begin supplements. These are tumor-busting, immune system boosters. Add glutathione, lysine and taurine IV infusions every three weeks.
July 2014: Begin Gemzar, Herceptin & Perjeta. Happy.
August 2014: ECHO perfect.
January 2015: Begin weekly Vitamin D Analog infusions. 25 mcg. via port.
February 2015: CT: stable.
April 2015: Gem working, but not 100%. Looking into immunotherapy. Finally, treatments for the 21st century!
April 2015: Penn Medicine. Dendritic cell immunotherapy.
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Old 12-20-2011, 10:28 AM   #7
Kroesen
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Re: Pictures of Herceptin Rash

Benadryl doesn't help much at all. My oncologist does know. We first wondered if it was the trial shingles vaccine that I signed up for. She tried to get them to unblind the test, but they said that I could be allergic to the placebo, the vaccine, or anything else. After last Friday's herceptin, I broke out even worse after a couple of hours.

I meet with her again on Friday to see if there are any premeds that I can take or if I am just finished taking herceptin. I have been on herceptin for 18 weeks. I'd love to find out more about the 9 weeks Finland trials to see what the survival rate is yet today.
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Old 12-20-2011, 03:32 PM   #8
tricia keegan
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Re: Pictures of Herceptin Rash

I'm sorry I did'nt take pic's of mine and it did bother me for quite a while (I have a thread here about it brought forward) but hopefully it'll pass soon as mine did and hope you feel more comfortable then.
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Dx July '05 IDC 1.9cm Triple positive 3/9 nodes positive
A/C X 4 ..Taxol/Herceptin x 12 wks then herceptin 1 yr
Rads x 36 ..oophorectomy August '06
Currently taking Arimidex..
June 2011 osteopenia/ zometa x1 yearly- stopped Zometa 2015 as Dexa show normal bone density.
Stopped Arimidex July 2014- Restarted Arimidex 2015 for a further two years on the advice of my Onc.
2014 Normal Dexa scan
2018 Mammo all clear, still NED!
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Old 12-20-2011, 03:38 PM   #9
Kroesen
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Re: Pictures of Herceptin Rash

Tricia,

Could you check my blog to see if yours looked like that? I'm going back in tomorrow to see if there is anything else that can be done for itching. Let me know what you think about my rash. Thanks for your help.
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Old 12-21-2011, 07:25 PM   #10
tricia keegan
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Re: Pictures of Herceptin Rash

Sorry I'm so late checking in here but it looks like my rash but far more extensive and Benadryl did help mine to clear and stop the itch! I wish I could help more and it does look like an allergic reaction
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Tricia
Dx July '05 IDC 1.9cm Triple positive 3/9 nodes positive
A/C X 4 ..Taxol/Herceptin x 12 wks then herceptin 1 yr
Rads x 36 ..oophorectomy August '06
Currently taking Arimidex..
June 2011 osteopenia/ zometa x1 yearly- stopped Zometa 2015 as Dexa show normal bone density.
Stopped Arimidex July 2014- Restarted Arimidex 2015 for a further two years on the advice of my Onc.
2014 Normal Dexa scan
2018 Mammo all clear, still NED!
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Old 12-21-2011, 07:39 PM   #11
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Re: Pictures of Herceptin Rash

I had something similar when I first started Herceptin. I had to take some steriods to help with it. It did go away and then it never came back again the rest of the time I was on Herceptin.
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Biopsy Dx'd 3-23-05 Age 48
MRM 4-5-05 w/ 2 tumor's 5cm, and 6 cm (right side)
IDC (poorly differentiated infiltrating ductual carcinoma)
5+/16 nodes
Stage III A
Grade 3
ER/PR-, Her2/neu ++
Ki67 78%
Begin Chemo 5-2-05 4XAC Dose Dense , 4X Abraxane Dose Dense (ended August 05)
28 Rad's ended October 13 2005
Started Herceptin Weekly August 2005 for one year
Had a Simple mastectomy left side after Mamo showed incresed micro-calcifications. Jan. 17 2006.
Brain MRI Feb.2006--All Clear
August 28, 2006 Last Weekly Herceptin.
October 2006--Colonoscopy, 6 Polyp's removed--all B9
PET Scan July 2007
Abdominal MRI Oct. 2007---2 Right Kidney Cysts
Core Biopsy-- Lump on Scar Line 1-10-08---B9
Brain MRI 6-2008--All Clear
PET/CT Scan 6-2008
Sept. 8 2008, 4CM area removed from mastectomy scar line. Proved to be B9.
PET/CT Scan-- July 2009 --All clear
August 17,2009 ---Had Port Removed
6 Years NED -- April 5,2011
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Old 12-21-2011, 09:05 PM   #12
Kroesen
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Re: Pictures of Herceptin Rash

Thanks both of you. I went in today because of the itch. I was given steroids, benadryl, and zantac via IV. I was also given a medrol pack of steroids to take for a week. I'm going in on Friday to get my rash checked to see if it is helping. I'm supposed to be getting a treatment again Friday, but have requester to wait until next week so I can get through the holidays and not worry about possibly having to go to a different hospital since we are traveling.

Thanks for the information. I will try to stay ahead on the benadryl to see if that will help the rash disappear.

You can say a prayer that on Friday or next week that I won't have any more break outs. I can handle pain of rash on the parts of my body now, but don't want the other possible side effects like swollen glands or difficulty breathing. Then again, really, I want the rash to go away if I'm truly honest.

Thanks for your support.
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Old 12-22-2011, 04:43 PM   #13
tricia keegan
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Re: Pictures of Herceptin Rash

Sending good vibes Kroesen for an itch free holiday period and hope the meds help!!! xx
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Tricia
Dx July '05 IDC 1.9cm Triple positive 3/9 nodes positive
A/C X 4 ..Taxol/Herceptin x 12 wks then herceptin 1 yr
Rads x 36 ..oophorectomy August '06
Currently taking Arimidex..
June 2011 osteopenia/ zometa x1 yearly- stopped Zometa 2015 as Dexa show normal bone density.
Stopped Arimidex July 2014- Restarted Arimidex 2015 for a further two years on the advice of my Onc.
2014 Normal Dexa scan
2018 Mammo all clear, still NED!
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Old 12-29-2011, 07:56 PM   #14
choyces
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Re: Pictures of Herceptin Rash

Kroesen- I just started getting a rash last week. It's just under my right breast. I didn't know what it was. It doesn't itch. Thank you for your post. Now I know what it is. It's funny, I've been on herceptin since August and this is the first rash.
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Old 12-29-2011, 08:55 PM   #15
rhondalea
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Re: Pictures of Herceptin Rash

I have not had any rash, just some mild itching and a bloody, runny nose and watery eyes. I blamed everything on Taxol (even though I knew it had to be the Herceptin), so when it continued after Taxol, I was distraught but not surprised.

What did surprise me was the great result I got when I started taking Claritin again. My nose is almost entirely dried up and only intermittently bloody. My eyes feel almost normal. I've stopped itching.

You might want to ask your oncologist if you can give it whirl, because I, at least, am almost human again. Almost.
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2/6/09 Core needle biopsy: negative; Mammos through 2010: no change
3/30/11 Pea-sized lump in left breast at site of prior biopsy; mammo negative, sonogram not so much
4/14/11 Core needle biopsy: negative for cancer
5/18/11 Excisional biopsy 1.2 cm tumor, LVI, positive margin; ER+60%,PR+20%,HER2/CEP17 5
6/15/11 BMX: Left DCIS & LH; Right ADH; SNB: 2/3 nodes: 1.4 cm and 1 mm; ALND L1&2: 0/10; Stage IIa, Grade 3
7/14/11 CT/Bone scans NED; MUGA 66%
7/19/11 Biweekly dd AC w/Neulasta; done 8/30/11
9/13/11 Transfusion (Hemoglobin 8.6); MUGA 64%
9/20/11 Start Taxol + Herceptin; Taxol done 12/6/2011; continue Herceptin until 9/4/2012
12/27/11 Radiation - 6 weeks; 2/27/2012 - DONE! Yayyyy!
2/29/12 Start Tamoxifen 20 mg/day; continue until 2/28/17
5/16/12 Start five-years Metformin trial
6/19/12 MUGA 61%
8/21/12 Brain MRI NED (head still hurts, brain still fogged)
9/4/12 Herceptin done!
9/6/12 Port out!
7/11/13 Aricept 5mg for cognitive impairment; increased to 10mg as of 8/23/13; back to 5mg 12/2013
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Old 12-30-2011, 03:44 PM   #16
Kroesen
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Re: Pictures of Herceptin Rash

Choyces,

Keep a good eye on it. Make sure you let your onc know.


Thanks for everyone's support. I'm going to try herceptin again on Friday. We will be at the cancer center the whole day so we are right there in case of a worse reaction. Many are nervous as I am. You can keep me in prayer at 8:30 next Friday morning. Pray that no tongue swelling or difficulty breathing.


Allergist is going to talk to Harvard this week to discuss this. Hopefully they will have some answers too.


I also start RADs Wednesday. Busy week.
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Old 07-25-2012, 05:35 PM   #17
Holly
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Re: Pictures of Herceptin Rash

I am getting a rash around my port and it spreads. Don't know for sure what is causing it, but I am getting Herceptin through that port. My radiologist prescribed an antibiotic, and I used Metrogel (insanely expensive, but works on other rashes I get). Not sure which worked, but it cleared up. But, this week's Herceptin brought it back again. The rash is quite itchy, and reddened. When I let it go untreated the first time, not knowing what it was, it got very dry and slightly bumpy, and it spread from a dime size spot to a teacup size with a trail along the path of the port tube. I do take Singular, but am not supposed to have Benedryl.

I'm not a doctor, so this is just an OTC suggestion. If the area is fairly limited, I'd try an OTC anti-itch cream and see if that works before going to something prescribed. It would be less problematic than steroids might be. I already had Metrogel from a previous breakout totally unrelated, so I used that and Metasone (think that's the right spelling), both are prescription, but both helped a lot.

The radiologist took a picture, I'll see if I can get a copy and post it here.
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Old 07-25-2012, 06:25 PM   #18
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Re: Pictures of Herceptin Rash

Hi there-

Sorry for the discomfort. I had a rash for many months...but I cannot remember if it was from Taxol or Herceptin (sorry). Here is a photo. It was ALL over my body. Topical sterioid, applied carefully, was very helpful.

I hope you feel better soon,

Maureen
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My loves

IDC & DCIS, HER2+++ Diagnosis: October 1, 2008
  • Tumor: 6.8 centimeters, never showed on mammograms
  • ER-/PR-
  • November 2008: Sentinal Lymph node surgery. 6 out of 9 lymph nodes with cancer
  • Stage IIIc
  • Lapatinib Clinical Trial start: November, 2008
  • Surgery: May 5, 2009
  • Started Herceptin: May 19, 2009
  • Started Radiation (33 rounds): June 10, 2009
  • September 2009: Moved to Michigan to be closer to family
  • 12/09 - still on Herceptin until May 2010
  • August 2010: Port out, port out, port out port out port port port out port ooooout...da da da dant! (to the music of the Pink Panther)
Blog: http://moonsfamily.blogspot.com
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Old 07-25-2012, 06:29 PM   #19
mmoons
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Re: Pictures of Herceptin Rash

Sorry. One more. Not sure if these really show it across my chest and even all over my face. But I hope they will help you.
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My loves

IDC & DCIS, HER2+++ Diagnosis: October 1, 2008
  • Tumor: 6.8 centimeters, never showed on mammograms
  • ER-/PR-
  • November 2008: Sentinal Lymph node surgery. 6 out of 9 lymph nodes with cancer
  • Stage IIIc
  • Lapatinib Clinical Trial start: November, 2008
  • Surgery: May 5, 2009
  • Started Herceptin: May 19, 2009
  • Started Radiation (33 rounds): June 10, 2009
  • September 2009: Moved to Michigan to be closer to family
  • 12/09 - still on Herceptin until May 2010
  • August 2010: Port out, port out, port out port out port port port out port ooooout...da da da dant! (to the music of the Pink Panther)
Blog: http://moonsfamily.blogspot.com
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Old 07-25-2012, 07:24 PM   #20
Delaney
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Re: Pictures of Herceptin Rash

Thank you Kroesen and Maureen for the photos. I have a very very mild rash, thought it was cancer spots. Its nice to know the reason for it. Am off herceptin now so hope it goes.. Wishing you both the best of luck in getting rid of this pesky rash.
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Delaney, dx 2008 lumpectomy,mastectomy,a/c,paxitaxol, tyverb 1 yr.
dx 2010 mets lymph nodes, skin, lung. start taxotere/herceptin.
Stopped taxtere/herceptin, now on tyverb/xeloda.
Lung mets shrinking.
Back on Herceptin with T/X. Partial response.
Skin mets progressing. Radiation scheduled mid february 2011.
Spot found on hip - radiation to hip beginning mid February 2011.
Now trying Gemzar/Tyverb/Herceptin and Zometa.
CT scan Feb 2011 - lung clear!
Brain mets (specks) - radiation mid Feb.
Brain Scan June'11 - Clear
CT Scan June'11 - Good - skin met active - watch and wait.
Surgery to remove skin met. Surgery to back 2012, four titanium rods inserted. Skin mets reappear. On Navelbine, not working. 4 week washout, start Myocet for skin and lung mets August 2012. Brain scan clear despte intermittent blurry vision (something hiding? Am suspicious but hopeful. )On we go, glad to be here.
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