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?

Re: HER2-triple positive/shingles
 

Sorry for not catching my spelling. I'm sure you all know I meant 'Petscans.' ��

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

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.

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.

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!

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.