TRIPLE POSITIVE GROUP

Suburbs

KimCee. I am sorry to hear this but glad that you are checking in. I learned the definition of nosocomial recently. Hospitals are great places for treatments but the infection risks are a bear. I hope when you feel better that you will like the outcome of your exchange. I can't imagine that having pneumonia makes getting accustomed to the implants easy. While you are taking your antibiotics and running from doctor to doctor, please know that you are not alone. I am still trying to kick this mycobacterium fortuitum infection to the curb. Hang in there.

For anyone dealing with post-surgery wounds, I highly recommend the rolls of medipore adhesive which can be placed over sterile gauze. After nine months of bandaging, I have tried the works. The wider adhesives cover gauze nicely and let your skin breathe a bit. I like the precut roll which can be rolled out to fit as much gauze as is necessary.

Needless to say, I retain my opinion that being triple positive makes for an extra long trip with a lot of detours. For anyone in the throes of one of those detours or temporary stops, I remain assured that I can always stop here and find a listening ear and positive encouragement.

Thank you for all the private messages. I don't loose my cool often, but when I do it's not pretty. I apologize if I have offended anyone with my frankness. And that is all I will say on the subject

Tresjoli2

love ya burbs!

LillyDuff

Hi:

I'm from the HER2+ boards but wanted to pop in and add what I did.

I'm also stage IIB, and fell in the "grey" area for Rads. I had a cPR from TCHP and had negative nodes during surgery, BUT considering axillary nodes, intramammary lymph nodes, were enlarged prior to treatment and my age, the tumor board "ok'd" Radiation Therapy. I also had an area of concern that seemed to be developing near the chest wall. Did I want it? You bet! I want to do everything I can to beat this monster down! I went through Rads. in February. I had 25 treatments, got red skin, peeled etc. but you know what? Glad I did!!! (My skin is just fine now. I used every cream they gave me but used silvadine cream during the peeling stages. All is well now and I only have slight discoloration which seems to fade little by little as time goes by.)

Now, I am on the fence about Nerylnx. I wanted to go through with it, but not sure now, as I called their patient line and found out if a person is taking PPI's like Prilosec,Nexium, or Zantac, that has to be discontinued. Unfortunately, I am on Zantac for terrible GERD. I also have a Schatzki's ring caused by severe GERD and reflux, so I have to be on some type of antacid to avoid that developing into Barrett's esophagus. I don't see me discontinuing Zantac for an entire year so I can proceed with Nerylnx. Still need to review again with my MO, although for the record, he said he didn't see a need for it in my case but would support my decision either way. Also, I am planning a prophylactic oophorectomy this summer as well.

Everyone has to make these difficult decisions when dealing with this terrifying diagnosis! I just want to buy as much time as I can to make it to the next "targeted drug/ vaccine" discovery to at least keep the odds of a recurrence as low as possible!!!

Oh, and I found my breast tumor(s) myself too! Mammography was not the imaging of choice for me. Ultrasound and MRI demonstrated basically a fireworks of tumors in my dense left breast. Five months following my "normal mammogram", I felt the tumor beast and called my doctor's office ASAP!!! Two weeks later, TCHP began and my life was turned upside down.

Best of luck with your decisions!!!

kae_md99

LillyDuff,

i am considering Nerlynx too, i did not know i have to stop the PPI's! i have terrible GERD that almost made me stop TCHP.

deni1661

Kimcee - I'm so happy to see you back on the board but oh my gosh have you had a tough time! I am sorry you had to deal with such a terrible illness on top of dealing with cancer. That is the absolute worst - I will say extra prayers that your upcoming appointments are good and you can get back on Herceptin to finish up your treatment.


Suburbs, thanks for posting the radiation info. It was not recommended for me either - I had clear margins and nodes and just a few single cancer cells in the breast tissue. I can't remember exactly, but my MO said radiation would only provide a percent or two difference and he felt I already had the best possible response so no need to put my body through more. I had a full year of Perjeta which I believe is very different than everyone else. Of course I was in a clinical trial.

I agree there are all kinds of detours but we all eventually get to the other side!

Have a peaceful weekend everyone

KimCee

Aw thanks Suburbs...nosocomial lol, one of the first words we learned in nursing school. I can not believe that you are still dealing with that infection! Saying more prayers that you kick it to the curb sooner rather than later. xoxo

Deni, thank you so much. How are you feeling? Are you back to your old self...not old like old lol. How are you liking retirement? Are you well enough to enjoy?

As for the implants....I don't think they will ever grow on me. It is what it is at this point

LillyDuff

kae_md99:

Yes, please read the pdf for Nerlynx. It lists the PPI's as a drug interaction, making Nerlynx not as effective (absorption issues.) The pdf does list antacids are ok but I believe there has to be a three hour window between the two medications. PPI's are a bit different, though. Off the table as an option to take. Just in case, I did call the customer service number to the drug company and spoke to a nurse who informed me the same. So....what to do?? I am on the fence with this. The drug company needs to highlight this a little better like mentioning it more than once, to inform patients about the drug interactions with PPI's. (I need to post this as well on the Nerlynx threads so people can investigate this and be informed.)

Here is the exact text from the Puma drug company regarding PPI's and Nerlynx. Also, there is a patient phone number on their website that can connect patients with a nurse to confirm and answer more questions.

"Tell your healthcare provider about all the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements. Especially tell your healthcare provider if you take medicines used to decrease stomach acid, called proton pump inhibitors or PPIs, and H-2 receptor antagonists. You should avoid taking these medicines during treatment with NERLYNX."

kae_md99

LillyDuff,

will discuss this with my MO.Thanks.

KimCee,

i am not liking my implants too...and i have been 6 months out

Tresjoli2

http://www.breastcancer.org/research-news/accelera...

Is it possible that these new guidelines are making it so more women need radiation? I read this hear a few days ago.

I had to have 7 flipping weeks of radiation. I found chemo physically exhausting and radiation a mental headtrip.

Hugs...

shelabela

Suburbs, sorry to hear you got sick. hope you are feeling better. This cancer crap needs to go away......

Kimcee, sorry you are not liking your new boobs. Hope you grow to at least be comfortable with them. They have to be better then expanders.

Ladies my friends have taken me away for the weekend. To place called Barn on the Bluff B&B. It's by a town called Elkader. And this place is beautiful. It's an old barn refurbished to a B&B absolutely beautiful. They have a Facebook page check it out.

But here is my veiw as i drink my coffee

KimCee

Tres, mental head trip cracked me up, although looking back...that's exactly what it was. I did not do radiation this time...maybe I would have had to with the new guidelines. Who know...this is such a crapshoot.

Shelabela....WOW that is a breathtaking view, enjoy. The new boobs are a little better than expanders, how sucky is that. A friend from home in NJ went through all the treatment I have gone through at the same time. She hates hers too. I will keep an open mind that they will grow on me 🙂

Kae..that is sad, sorry you don't like yours either. Hope they eventually grow on those of us who hate them.

Tresjoli2

I had left side cancer. So I had to hold my breath to keep my heart out of the way. No pressure or anything. I remember almost having a panic attack every morning that I was going to screw up.and breathe when I wasn't supposed to and zap my heart. I still have flashbacks and horrible dreams where I am in the radiation machine (which I named Hal). and in the dream I always forget and exhale and zap my heart. I wake up in a cold sweat. Ergh....

tld2017

Oh goodness, Tresjoli, I start radiation in about 2 months and I'm already worried about it! My cancer is on the left side as well. So I need to hold my breath during the actual radiation?

Jstarling

Thanks for the reassuring words, HapB, even though it is a couple of months away...the anticipation is worrysome

coachvicky

it is a wet Ky Derby. Yes, that is my cleavage and I am showing it.

Vicky

coachvicky

it is wet KY Derby. Me, my hubby, and cleavage!

Tresjoli2

tld I did, I'm not sure that absolutely everyone does? I wasn't trying to scare anyone, which it seems I may have. If I did I'm super sorry. That was just my personal experience with rads. Everyone handles things differently. For me it was mentally harder and physically easier than chemo.

tld2017

Tresjoli, I am grateful that you are sharing your experience! This is so good for me to hear and to learn from other women like you that have gone through all of this! Thank you for sharing! What else can you tell me about radiation? I am really fair-skinned. Did you need to get a special bra?

Any advice or suggestions from any of you wonderful ladies is so appreciated!

By the way, with regard to my neuropathy, the Gabapentin is working pretty well. The pins and needles are much less noticeable after taking it for a few days!

HapB, thanks for your reassuring words!

Tresjoli2

tld I went and found bras that dont have underwire. I wanted something soft and padded. So that helped.

I am very fair skinned. I had no physical issues with rads. My skin didn't even turn pink. My RO said that there is some evidence that fair skinned people do better than those with darker skin, but that was just his belief and I have no results that back that up. You will also need to get tiny blue tattoos when you get ready for rads. They look like blue freckles. They are used to line u up properly each day. I've recently been thinking of having mine removed. There are some tattoo removal places that will do that for survivors free of charge.

I'll see if I can find my picture of Hal lol...

KasiaK

tld2017 - our diagnoses seem to be similar (except that my tumor was 1.5 cm) - we`re both TP and grade 1 - was this suprising for your doctors? I`ve found only two more women (besides you) on BCO who were TP and G1.

coachvicky

Derby 2018 with DH.

Yes, that is cleavage ... mine!

Vicky

Jjewel

Whoo hoo Coachvicky! Fun day for you thank you fir sharing, 👏👏👏😘

Jjewel

for, lol

shelabela

Vicky. Where is a picture of your hat?

Jumpship

Shelaba-Elkader is one of my happy place! My dad grew up 20 minutes away from there

Ingerp

Awesome picture, Vicky. Thanks for sharing!!

coachvicky

Thank you all. I wore a fascinator purchased from Amazon of all places.

I have done big hats in the past but since diagnosis, simple is better for me. First time to wear pants at the Derby and it was the most rain ever at Derby. The track looked like a pool at times.

Last year, I was still taking Herceptin. I actually planned my 21 day chemo schedule around Derby so that DH would not miss it. He has gone since the 70s.

Last year I was exhausted. I was also determined to go and support Richard. He did not ask this of me. I wanted to do this to have "normal" part of our lives.

This year, I kept up with everyone and had no naps. I worked out daily except for Derby because I walk so much that day.

I know the picture is blurry. It is my only picture. I LOST MY PHONE!!! Dang it.

My point ... Keep you celebrations and do them however tired or downsized these celebrations may be. Because ... it will get better.

It was so much better this year.

And your year and celebrations will get better also.

Vicky

shelabela

Hapb, yes Elkader is in Iowa. I live about 60 miles away.

Juli24

tld, my rads were on the left side. I didn't need to hold my breath. I have a hard time finding my tattoos now....they just look like freckles which I have quite a few anyway. I did not burn. Just a little pink. I did talk to a lot of women tho who did burn. In most cases they had used creams before & during rads. I found very few people like me who used no cream at all. I did use cornstarch putting it on with a cotton puff when I felt hot or sticky.

As far as bras go, I needed something for quite a while to stop any rubbing. Regular bras were a no go. Ended up with a very cheap cotton sports type bra bought a couple of sizes too big from Walmart of all places. They run small anyway & I didn't want restriction....only protection. Wearing those I didn't feel uncomfortable in public as I would have without anything.

Try not to worry. I believe the worst part of rads is the pre-worrying!! Do schedule plenty of rest time until you know how you will react. My only real SE was fatigue. Hugs!!!

LaughingGull

Vicky you look great! It is always great to see pix. I am afraid I missed a couple? I promise I will post some pix soon. I am starting to get my hair back.

Thanks Lilyduff for chiming in. Hopefully I will see my MO tomorrow to discuss pathology results and possible radiation. I am also considering the prophylactic oophorectomy, do you mind sharing what went into that decision? My MO mentioned as something to discuss but I havent looked into it yet.

To those in detours, I hope you re-join the main highway soon. Suburbs: hope the infection is getting better. To KimCee: had to look up the mycoplasma thing, hope you are totally over it and getting used to the new boobs. I see you have been through a lot, first one side then the other. Best wishes to you.

Happy Monday everyone,

LaughingGull