TRIPLE POSITIVE GROUP
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SpecialK - thank you!
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Bluesky,
I had a six month dental check up on 8 April. My dentist said my mouth is in better shape than before chemo. He said he could not tell from my mouth that I had chemo.
I had a cleaning before I started chemo and one at least every six months. I brush four times a day which is an increase from before chemo.
My breath was horrid at times. One minute I was fine and then boom it was awful. I used a Biotene Gel that I "swished" in my mouth for a few minutes each morning.
Just to add a little humor ... this isn't an embarrassing question to me. The one for me was "where did my pubic hair go?" LOL
Best wishes. Try going for a walk to help with the exhaustion. And as SpecialK always reminds us ... hydrate, hydrate, hydrate.
Vicky
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coach - my question was when is it coming back? Lol! I will tell this story briefly because it is both horrifying and hilarious. I showed up for my first chemo, looking like a deer in the headlights, trying to get my bearings. A nicely dressed woman came in and sat next to me for her infusion, and proceeded to talk non-stop - about everything. Wigs, clothes, boots, etc., my DH looked over the top of his ipad at me like, what is happening over there? Then she tells me that her husband really likes that she has no pubic hair - I was like, ok I'm just done... I don't even know her name, but now I know this about her? WTF? It's funny now, and there is not much that shocks me, but, seriously?
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Dang, Special. That is funny in a look-back kinda way. This was you FIRST chemo and you get Ms Motormouth about everything? Well, at least you knew not what to do when someone new sat next to you.
I selected a treatment center with a curtain around my chair. I did not want anyone to look me. Where am I now? Showing these reconstructed puppies to anyone who says yes. I guess this is progress. At least it makes for good stories.
Vicky
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coach - it was crazy! She actually said that she will have a panic attack if she doesn't interact with someone and her friend couldn't come with her. So it was somehow my job to entertain her. Um, no. I literally turned my back to her and she freaked out and they had to Benadryl her to settle her down. The next time I went I actually hid from her in the farthest away corner. She came for her final chemo in short shorts with high heels and a pink hard hat with a bottle of champagne. All I could think about was the people in the room with advanced cancers and how insensitive it was.
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What an insensitive Motormouth, as Coachvicky put it. It can be funny only after some time, can't it.
When I went for my first AC, all shaky with anticipation and dread, there was this loud, loud lady on her phone. Someone told her nicely to speak more quietly... Did't help. Then another patient told her to just finish that phone call, we other patients were not interested to hear that!! Well, she proceeded to finish the call which took about 5 more minutes. And, after like 10 minutes her phone rang and she started from the begining, as loud as before! Well, she deserved what she got then. I'm glad there were other patients to tell her, I wouldn't be able I think.
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I found the loud ones were new into this journey and scared. (The exception is your "chemo mate," SpecialK.) Maybe terrified is a better word. Some of us retreat inside and others can't. I remember a "newbie" at my center had a relative with her who could not come the next time. She kept saying over and over (and over and over) how she didn't need anyone. I thought she really needs someone.
The ones I really feel sad for are those who native language in not English. They would have an interpreter. The nurses would look at the interpreter and not the patients as if they were not there. I know they did not mean to be insensitive but I thought that they were.
In some ways I pray I never forget how scared it was and how much courage I had to find deep inside of me to allow access to my port for chemo. I found that courage because I didn't want to let my husband down. I could not bear the pain in his face if I denied treatment and the cancer returned. I guess we all find what it takes to get through this.
Vicky
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I had no other weird or unpleasant experiences in the chemo room other than this one person. It was a pretty convivial group, particularly a husband and wife getting chemo together - she with ovarian, he with colon - they were sweet and fascinated with my “underhair” hairpiece made from my own pre-chemo long hair. The nurses kept it light, and comforted those who had emotional moments, as discretely as they could. Because I was there for such a long time due to the year of H and receiving port flushes for years afterward I got to know the nurses very well. Several times I was asked if I would sit near someone newly diagnosed to offer reassurance. Remembering my first day in that room, I offered any support and info that I could whenever they asked. I even came to feel sorry for the woman from the first day.Maybe her way of dealing with the whole experience was to be over the top - who knows?
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I was sitting in the chair once and beside me was a very quiet woman who was in the throes of chemo induced nausea....dark circles under her eyes, tired, oh so tired. I retreated to my book. A man with a very jolly gait joined us, was hooked up, and then thought it might be a good ice breaker to turn to the sickly lady and say “sooooo, where's your cancer?" There was a long pregnant pause where all our eyes flicked between us, no one knowing what to say. I didn't realize I could experience so many thoughts at once! The lady broke the silence with a heavy Italian accented “oh no...no no no no no..NO". She put her head down and never looked back up again. When she left I had the urge to say “ummm dude, if it's not ok to ask a lady's age, what the hell made you think it's ok to ask what part of the body her cancer resides???" I think his embarrassment was punishment enough, so I refrained.
Chemo is a bit like prison....you put yourself at risk if you ask “what ya' in for?"
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hapa:
Sorry your cancer did not respond significantly to the chemo. I'm guessing the point of the radiation is to get any micrometastasis that might be in the tissue. Please do talk to your RO more about it. Herceptin resistant HER2 positive cancer is not something I would want to treat conservatively. There research in the works aimed at reversing herceptin resistance. You might also want to discuss that with your doctors. Maybe there is a clinical trial.
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The biotine comes in tooth paste, mouthwash and spray too. I have used it for a dry mouth for years. The spray is a small bottle that you can slip into your purse or even your pocket.
For those of you who are new, welcome. I just had my third post-surgery mammogram with NED. AI's are tolerable (I take femora but don't let me get too far ahead of you). My hair came back slowly but everywhere but I swear it is thinning again. I try to tell myself that if that is the worse SE, I am fine. Stay close and remember there are no dumb questions. Someone will have personal experience to share. I also suggest you find a thread on this site which is "starting chemo on ____" and/or "starting rads on ____." My chemo group set up a private facebook page and have gotten very close.
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Taco1946: How often do you do post-surgery mammogram?
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Thanks you guys. I had herceptin today and met with the NP who has been managing my treatments but she didn't seem to understand the path report. Neither did the nurse who called me with the path results on the phone last week, who told me I had four lymph nodes removed. I had 18 removed according to the path report, 4 of them were sentinel nodes, three of which were cancerous. The path report also noted lymphovascular invasion - another bad sign. The only good news on the whole thing was that the remaining tumor was grade 1. It was originally grade 2 or 3, depending on which biopsy and/or path report you looked at, I had four biopsies all together.
SpecialK - my cancer was originally multifocal or multicentric, I forget which is which now. I had several masses on imaging, one main mass and somewhere between one and three satellite masses, plus an area of non-mass enhancement. Only the main mass was biopsied as far as I know, plus one of the lymph nodes. Only one tumor was found in the surgical path. No mention of tumor beds or any other sign of the other tumors.
I am beginning to wonder if I maybe had two cancers? Originally, my cancer came back as ER+/PR+/Her2-. A subsequent biopsy came back as Her2 equivocal on IHC testing and Her2 positive on FISH. I do know that the Her2+ and Her2- biopsies were taken from different parts of the tumor. They did not test receptors on the surgical specimen. I have an appointment with my MO on Friday and will talk to him about my recurrence risk, testing the surgical specimen, and options for further treatment.
My chest is starting to feel raw. I'm about 1 week out from BMX and up until yesterday I had taken maybe four Advil for pain, which was virtually non-existent. Now it feels like I just had my tits scraped off.
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About pCR, just saw this:
"Are there subtypes within HER2 that could predict better response to therapy?
We subdivide HR-positive/HER2-positive cancers out from the HR-negative breast cancers. We see that these are actually very different biologies and, in many trials, this has been recognized. We are starting to realize that the HR-positive/HER2-positive cancers—even though they don't have a high rate of pathologic complete response (pCR), they still do have better overall outcomes than the HR-negative/HER2-positive breast cancer subtype. Eventually, they will be treated as different diseases in more ways than just adding endocrine therapy [to one over the other]."https://www.onclive.com/web-exclusives/her2-breast...
So as said in earlier posts, not having complete pCR is not that important.
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hapa, my MO told me that I may have had two different cancers from the beginning. Grade 1 is slow growing and to me that sounds like excellent news. Was your cancer strongly positive to hormones?
As for movement and tightness, are you planning on going to physical therapy? Did you get exercises to recover range of motion, particularly in the node removal side? Both worked wonders for me. Also I see that your cancer was in the right breast, that is good news if you decide to get radiation, because it won't be on the heart side.
Your experience with the NP is frustrating. I would be furious and take over from the NP. I received several letters offering those services but never trusted that a total stranger NP would be able to parse all the different pieces of my info better than me, even with chemo brain. I felt that being good at that takes organizational and analytical skills that an average NP may not have and that using one would add an opportunity for something important to fall through the cracks. I have all respect for the nursing profession and appreciate them now much more than ever, but don't think that case manager job makes sense. Maybe I am wrong on this, and I admit I am a control freak.
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hapa--sending good thoughts your way as you deal with all of the frustrations/healing/rigamarole.
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Thanks whywhy for the link.
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hapa, I had different cancers in both breasts. The feeling will get better. Please be easy on yourself. It takes some time and I am sorry you hurt.
whywhy, thanks for the link.
Laughing, my insurance Case Manager was a nurse. She did not know all the technical aspects but she could manage the system like a pro. When my first Oncologist made a comment about the cost of a test, she set him straight on what would be paid for and for him to submit the paperwork. After a year, my Case Manager moved to a different region and the second CM was not worth the time. I think it just depends on who you get.
LilyCh, I had mammograms once a year for the first 2 years. At the 3rd year, I will have an MRI.
Taco, try rosemary oil on your hair. I think it works for me.
Have a great day everyone!
Vicky
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Thank you, coachvicky!
I was understand an impression that, the post-surgery checkup will happen once every 3 (or 6?) months. Maybe the physical examinations are still that often but mammography is not?
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I think a lot of women get mammos every six months following treatment.
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Ingerp,
I got mammos every six months for two years. Now, I only get mammos once a year. I'm four years out from diagnosis, but I still see my medical oncologist every three months. It's because I'm doing Zoladex. She does a manual exam. I see my radiation oncologist once a year, around Thanksgiving time.
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At the time of my 4th TCHP (3 weeks ago), I told my MO that the lump felt noticeably bigger to me. She measured it in-office and agreed. A week later, I met with both her and the surgeon, neither was too concerned even though it was larger than previously, it's still considerably smaller than originally. Both described it as "stable". I will have an ultrasound next week to get more precise measurement. That said, I had another talk with MO at chemo #5 a couple days ago. The mass has shrunk again (yeah!). She reminded me that I have not yet started endocrine therapy, so while chemo may not give me pcr, that endocrine therapy will probably take care of things. That made me feel a lot better. Also, she told me that until surgery, there's no real way to determine exactly what the mass consists of. Maybe tumor, maybe mucous, maybe some dead stuff. So I'll continue and see what happens. Hope this info may be helpful to others, as I was frustrated last week trying to find info that might give me some peace of mind.
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Kat22: Great, thanks for sharing.
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LilyCh- I have a mammogram on my surgical breast every 6 months but only every 12 on the other one. Haven't seen RO since my breakthrough during chemo (I had brachytherapy). Right now, I see MO and BS every 6th months shortly after mammogram. I try to schedule my Primary visit on alternating six months so I see a physician or PA every 3 months. I'm assuming I will be continuing with MO every 6 months as long as I'm on AI's but we haven't specifically had that conversation. BS's PA does the best breast exam of the group.
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my RO makes me see him 2x a year, every six months. I see MO once a year now, right after my annual mammogram. I had been doing MRIs but we stopped after two because she thought they would be a good baseline.
I have my appointment with my psychopharmacologist next week. Still trying to find an antidepressant that will work since celexa, lexapro, amd effexor were dealbreaker for me.
I always had chemo at 8am on Friday. Had the whole place practically to myself and when I left it was mayhem lol. Is it weird that I sometimes found the chemo chair comforting (except when i was having allergic reactions of course). I find life after treatment so much more unsettling. My chair was like a security blanket. Now I just worry and pray for clear scans once a year.
Hugs to all.
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So a question. Some of you talk about people sitting next to you for treatment. Was your infusion room a big room with lots of people.?
Where I went you had your own cubicle or room. Each cubicle had a TV, & massaging recliner, and each room had a TV &, bed. Both have a door for privacy.
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The treatment room I go to has about 10 recliner chairs and 2 beds. there are 3 nurses.
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My treatment area has about 30 chairs and zero privacy - the nurses are amazing - I’ve only had one super chatty person so far - I’m more if the type that likes to just try to relax and zone out during treatment - not have a full on convo for 4 hours
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Individual rooms, although there was one "group" area--not sure who used that, although I was thinking maybe people who were there for a shorter time?
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My treatment center is brand new. There are over 40 cubicles with massage/heated chairs, TV, and ipad (loaded with movies) in each one. There's also some individual rooms with beds. It's open enough that you can hear others within the next couple cubicles, but not so much that it's loud or annoying (unless you're right next to someone loud and annoying). The staff makes the atmosphere very friendly, upbeat, and positive. I like it. Oh, and there's refrigerators and snack carts and coffee....anything you'd want from nutrition drinks, juices, soup, cookies, chips, you name it.....take all you want. They even have volunteers come around with the snack cart so you don't even have to get up to get it.
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