TRIPLE POSITIVE GROUP
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I had pcr after chemo and had 30 rounds of radiation. I was diagnosed 2016
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Laughing, just going to throw in my 2 cents here. Hopefully you won't have to deal with the Surgeon again. If you do, I would find another if at all possible. In the beginning I had one (Breast Surgeon) who was just awful to deal with. She did my biopsies and would have done my port placement & BMX but I just couldn't feel peace around her and so I found another. I really appreciate all my doctors now and the new Breast Surgeon I really like her a lot! We haveto deal with so much during this traumatic season, I'm so glad I listened to my gut and changed Surgeons. I haven't met the RO yet but I will use my 'peace over uneasy' feeling to either proceed with his advice or move on to another. I am so glad I trust and have been given comfort as well as excellent medical treatments through all of this so far.
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Thanks ladies.
I am reading the new guidelines and scheduling appointments with MO and RO and waiting for the complete report -and trying to remember to breath regularly in the meantime. Will keep you posted.
I am now regretting not having changed surgeon earlier, but what it's done it's done and as cupcake says hopefully I don't have to deal with him again. And if I need a surgeon in the future I will find another one.
Love and peace to all
LaughingGull
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Hi there everyone,
Suburbs, thanks for asking about me...I went through the mill.
After exchange surgery on March 15' btw still hate the new boobs, wish I didn't even bother, I got sick. I have great resistance but this knocked me down. Was misdiagnosed by PCP for two weeks, on strong antibiotics which were ineffective. Went to ER, had mycoplasma pneumonia, super bad, spent a week in the hospital. Discharged 4/18 but still SOB. Heart rate and BP shot up before discharge, now wearing a holter monitor for two weeks even though cardiologist doesn't think it is cardiac related. Have my echocardiogram next week. Missed my Herceptin 3 weeks ago. Doctors almost daily, ugh.
Seeing pulmonologist next Friday and hopefully will be released to go back to work. It ain't fun when you have to relax constantly vs. wanting to.
On a good note, if there is one...hair is growing back, I have a pixie lol, however, it's GRAY. Had my eyebrows tattooed and love them.
Welcome to all the newbies, happy you found us but sorry you are here. I read so many pages but can't remember individual issues so as I read, I prayed for the writer.
Missed you all xoxo. Oh and I start Aromasin today, yuck, side effect is thinning hair...just what we need
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thank you.
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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
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love ya burbs!
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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!!!
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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.
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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
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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
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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."
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LillyDuff,
will discuss this with my MO.Thanks.
KimCee,
i am not liking my implants too...and i have been 6 months out
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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...
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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
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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.
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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....
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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?
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Thanks for the reassuring words, HapB, even though it is a couple of months away...the anticipation is worrysome
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it is a wet Ky Derby. Yes, that is my cleavage and I am showing it.
Vicky
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it is wet KY Derby. Me, my hubby, and cleavage!
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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.
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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!
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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...
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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.
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Derby 2018 with DH.
Yes, that is cleavage ... mine!
Vicky
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Whoo hoo Coachvicky! Fun day for you thank you fir sharing, 👏👏👏😘
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for, lol
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Vicky. Where is a picture of your hat?
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Awesome picture, Vicky. Thanks for sharing!!
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