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Old 10-20-2016, 09:46 AM   #1
CindyW
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Join Date: Oct 2016
Posts: 3
HER2-triple positive/shingles

Hey everyone! I'm new to this group, I really wish I'd found you
Last year when I started this 'journey.'
I was DX with HER2-triple positive last September. I had 4 of 6
Treatments of taxotere and carboplatin along with herceptin. The side effects became so bad that I opted out of heavy chemo. I just got diagnosed with shingles for the 2nd time. (I had it a year ag). I didn't realize it's a side effect of herceptin. My oncologist wants me to continue herceptin; I have 2 left before I'm done. I have a mild case, just like before, except it's on my abdomen this time. Last time on my face. I'm uneasy walking into my clinic with other cancer patients without warning them I have it. Chances are slim I'd pass it but I guarantee I'll be using their bathroom at least twice and it will have to be sterilized. The rash has spread downward, yup, on my butt. I won't mince words. I don't trust my Oncologist anymore and plan on finding a new one once treatment is done. I asked him about post treatment Oetscans and got this answer: "I don't do them. I don't believe in them. They can show too many false positives." My cancer is a recurrence from 14 years ago and it's one of the deadliest, and this guy doesn't believe in them? Am I wrong thinking that yes, could be true but it's still the best we have. As far as my shingles? I am announcing it to the patients there and if one person is uncomfortable with me being there, I'm gone. Last time I had shingles my cardiologist had me reschedule my appt with him.
What do y'all think of this?
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Old 10-20-2016, 09:50 AM   #2
CindyW
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Re: HER2-triple positive/shingles

Sorry for not catching my spelling. I'm sure you all know I meant 'Petscans.' ��
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Old 10-20-2016, 11:16 AM   #3
Carol Ann
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Join Date: Dec 2013
Posts: 1,045
Re: HER2-triple positive/shingles

Hi Cindy!

I have had shingles twice myself ... see my signature ... but they were both after I was totally finished with chemo and Herceptin. They were both mild cases too. I did have to wait to have my port removed because of them, but that was a surgical procedure and the surgeon was concerned it would make my own infection worse.

I have not had any scans ever but that is because I was diagnosed at Stage 1 with no positive nodes. You don't say what Stage you are, but since you don't mention Perjeta, just TCH ... that is what I had, and again, I didn't qualify for Perjeta because of being Stage 1. Typically, no scans for Stage 1 is pretty commonplace. My HER2 tumor was also triple positive (see my signature).

By all means, if you don't trust your oncologist ... you need to find a new one!

I understand that you don't want to take any chance, no matter how slim, of spreading shingles! I would talk to the oncology nursing staff too (They would be the ones overseeing sanitizing the bathroom and perhaps they have had experience with this, I have found with my team that they have pretty much seen everything!) and then decide how to handle the last 2 Herceptin infusions.

I am so sorry you are back in primetime Cancer land after so many years.

Please keep us posted ... I am sure there will be others here who will post too!

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 10-20-2016, 12:14 PM   #4
tricia keegan
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Re: HER2-triple positive/shingles

Hi,

I'm so sorry about the shingles but regarding the scans, pet or otherwise my Onc doesn't do them either unless there are symptoms, I believe for early stage bc this is the norm and generally any pain or symptom that lasts longer than a few weeks should be investigated more.
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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 10-20-2016, 01:09 PM   #5
Donna H
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Join Date: May 2014
Posts: 307
Re: HER2-triple positive/shingles

Welcome! I was stage 2 and my onc only does any type of scans if there are symptoms. I agree that if you dont trust or dont like your onc then definitely find another. You have to be your own advocate and do what is best for you.
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Old 10-20-2016, 02:07 PM   #6
CindyW
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Join Date: Oct 2016
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Re: HER2-triple positive/shingles

I'm sorry! I forgot all about saying what stage I started all this. I was stage 3B and my Onco back in MA, (I didn't have an Onco here in NC and have so many insurance problems here that I went home for surgery. Had chemo here in NC), did a Pet and an MRI that showed lesions on my left kidney and liver. It was determined to be a cyst on my kidney and they said they weren't concerned about the lesion on my liver. The radiologist at MA General in Boston said it appeared more like a shadow so my Onco and I was satisfied. She saved my life back in 1994 so her word is gold to me.
When I go for treatment tomorrow I'll just let the nurses know about the bathroom issue and they'll take it from there. The nursing staff is outstanding and I'll miss them once treatment is done. 2 more and it's over.
I plan on keeping my port for a while, I have no veins at all so in the next few months if bloodwork is needed I can have them use it as long as an RN can flush with heparin. I'll be so happy once this is done. My only regret is not having a double mastectomy. What was I thinking! At this stage of my life they're useless, only decorations as my Aunt put it! (I turned 60 last spring). Going for a mammo two weeks ago reminded me I should have had one. I'm sure I can now if I pressed it but I won't unless something comes up. I'm tired of surgery and treatment now. I pray for the women, and men, who have to remain on herceptin forever. I'm not sure I could do it.
Thank you all 😘 I really appreciate the quick responses. My prayers that you all continue in in great health and beat this beast back to where it belongs!
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Old 10-30-2016, 11:37 AM   #7
Lisalou
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Posts: 184
Re: HER2-triple positive/shingles

Just a word on shingles. You cannot spread shingles to other people, it is caused by a dormant chicken pox virus in your system that erupts along the nerves. Thus you can give someone chicken pox(if vulnerable) from shingles.
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[SIGPIC]Lisa
Routine mammogram 12/20/2013
Call back with repeat films on12/31/2013 Ultrasound with core needle biopsy same day
Dx 1/2/2014 IDC ER/PR+
1/10/14 HER2 +
2/14/14 BRCA results negative
2/17/2014 skin & nipple sparing BMX with reconstruction Tissue expanders placed
IDC Stage 2A left breast. 9mm tumor no other CA 1/4 nodes positive
ER + PR + Her2 +(by FISH)
Right breast no cancer, sclerosing adenosis
3/13/14 Round 1 AC minimal side effects
3/27/14 Round 2 AC
4/10/14 Round 3 a little more nausea
4/24/14 round 4 hurray! Done with phase 1!
5/8/14 THP ( taxol weekly x12, Herceptin & perjeta every 3 weeks x 4)
7/24/14 done with chemo
Continue of Herceptin every 3 wks x 1 yr
5/14 start Tamoxifen x 5 years
8/18/14 removal of TEs silicone implants placed
9/14/14 Cellulitis Right Breast, suspect infected implant. Managed with Oral antibiotics, avoided surgery to remove implant. Whew!
12/17/14 nip & tuck revision of Left breast

We gain strength, courage, and confidence by each experience in which we really stop to look fear in the face. The danger lies in refusing to face the fear, not in daring to come to grips with it. We must do that which we think we cannot do. -Eleanor Roosevelt
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