Double mastecomy and trying to decide whether to do chemo or not

@waterlilies1899 it was weird with the teeth. It was after the second infusion and I yawned and felt the lower teeth shift. It just changed enough to where one of my lower teeth now hits the back of an upper tooth. I’m sure there’s also a difference to the bite but hasn’t caused any problems so far. Dentist is just keeping an eye on it to make sure it doesn’t damage the upper tooth.
As to how I felt, my infusion was on Thursday and they put the Neulasta thing on which injected me on Friday. (This is where it gets a little tricky - I’ll explain later). First one, started having a lot of pain Saturday evening. Sunday I was really bad - slept all day, started Tylenol -lasted till Tuesday. Oncologist said to start ibuprofen at next infusion and if still problems, would script codeine. Next 2, Sunday was still a bad day, just tired, didn’t feel good, slept a lot but fine by Monday afternoon. I thought the last infusion was going to kill me - actually used the codeine I had left over from surgery for 2 days, still felt bad when I saw oncologist 2 weeks later just couldn’t recover. NOW - don’t panic. The explanation: I had been put on resuvostatin for cholesterol 3 months before all this and had been having problems with it. I stopped it about 4 days before the first infusion (but again, still in my system). Was off it for second and only back on shortly before third. So at 4th, I had been back on it almost 5 weeks. I really think that it either caused it’s own complications or reacted with the chemo to cause my problems. After they sent me to cardiologist who found nothing, I came off the statin and recovered in a couple weeks. So while yes, there were side effects, I really feel the 2 middle ones were representative of my actual side effects and that was 1 day of feeling really crummy and just babying myself and staying in bed. Keep some ibuprofen handy, take the loratidine as recommended (both help with the muscle pain). I never had to use any of the anti vomiting medications they gave me.

I had DCIS - Oncotype of 22. They told me I did not need chemo. That middle gray area of the Oncotype test. They had a new study in 2018 that said that chemo did not help in the middle range. I was at University of Nebraska Medical Center - my oncologist said no chemo (in 2018). I did radiation & the 5 years of AI. Wishing you the best advice you can find, find an oncologist you really trust.

4 rounds of Taxotere and Cytoxin. I’m trying to find peace in my decision, but I’m really struggling. The doctor keeps telling me most patients do fine and not to worry.

Good Morning - It is a horrible journey you are on. My sister was diagnosed as stage 2 IDC and ILC. She had a double mastectomy with spacers for later reconstruction. She had 4 lymph nodes test positive. She really did not want chemo. The oncologist was wonderful. He did not want to put her through chemo unless she absolutely needed it. The cut off for chemo is if you have 4 or more lymph nodes positive. Since she was on the line, he recommended and facilitated a second opinion from MD Anderson in Houston. I was thrilled that she was referred to a cancer center of excellence. The oncologist sent all of my sisters' information to MD Anderson and they did a virtual consultation (she wouldn't have to travel to Houston). MD Anderson concluded that she needed chemo.
My sister was still hesitant; however, her oncologist explained it this way and that helped her to make the decision to have the chemo. He said that lymph nodes are like pool skimmers. They get 98% of what is in the pool, but there is always a leaf or something that gets by. This is why the chemo was important, for whatever the lymph nodes missed.
My sister has finished her first round (using the ice gloves and boots). She did great. Second round next week. She chose to shave her head since 100% of the women lose their hair on this chemo. I believe that her action to shave her head was important. It gave her a sense of control over the process and rather than wait and dread the day the hair came out in the shower, she had already mentally prepared herself. A few hats and scarves and she is in a good place mentally.
I am hoping all goes well for you.

@waterlilies1899
I was 72. ATM gene and triple negative early stage. I chose double mastectomy. I did not want radiation as my tumor was right over my heart and there is much written about avoiding radiation with the ATM gene. I had taxol/Carboplatin and I did just fine. Was always able to function normally. I always wore ice gloves and booties. I did try an ice hat, but I still lost my hair. My hands were fine and I have some numbness in my toes. I bought a wig I liked in advance and nobody knew.
I am not familiar with your drugs, but if they are concerned about circulating cancer cells, if it were me, I would do it. Even an 12-15% improved survival chance is significant.

@waterlilies1899
I was 72. ATM gene and triple negative early stage. I chose double mastectomy. I did not want radiation as my tumor was right over my heart and there is much written about avoiding radiation with the ATM gene. I had taxol/Carboplatin and I did just fine. Was always able to function normally. I always wore ice gloves and booties. I did try an ice hat, but I still lost my hair. My hands were fine and I have some numbness in my toes. I bought a wig I liked in advance and nobody knew.
I am not familiar with your drugs, but if they are concerned about circulating cancer cells, if it were me, I would do it. Even an 12-15% improved survival chance is significant.

@juliafire it is a rough journey! I had negative nodes and negative margins on my tumor. However, my oncotype was 27, 2 points over the cutoff number of 25. My grade was 3, so it was aggressive. The analogy of the lymph nodes is spot on. That’s what they told me…it only takes one cell to escape. So i am now committed to 4 cycles of TC chemo. I am doing the ice gloves and boots and the ice cap for my hair. The oncologist said it works very well. If not, i will shave my head and start fresh. I did get several opinions, the oncologists all came back the same, but 2 other docs said get a third opinion. I know there are a lot of other options out there, but unfortunately there is not a ton of solid data that it is effective in preventing reoccurrence. My cancer is a more rare form, invasive micro papillary carcinoma (IMPC) which makes up about 1-3% of BC. In the end, it’s hard to know exactly what to do. I do have a post-chemo plan of metabolic therapy and some other therapies to hopefully keep this from recurring. I’m currently trying to follow a macrobiotic diet. Any suggestions from your sister on getting through chemo?
Thank you for sharing with me! Best of luck to your sister.

@waterlilies1899 My sister had an acquaintance in another state that was having the same chemo and was two treatments ahead of her.
The recommendations she made were a big help. Take the meds for nausea before you feel it. My sister takes one pill the day before and another the day of.
Plan on lots of small snacks of different tastes. Some people want salty, some people want sweet. My sister ended on the salty side. However, she had made some strawberry / lime pops before the chemo and the cold in her mouth really felt good.
Drink tons of water. Get up every hour to walk around, even if you don't feel like it. Small amounts of movement consistently during the day.
She is using the cold gloves and feet socks while she has her first chemo medication. She got a really thick gel like salve for her hands and skin.
She does all of her activities in the morning and assumes she will be worn out by the afternoon, so her and the cat hang out on the couch in the afternoon.
She starts round 2 of 4 next week. She has her last round on December 30. Then starts radiation in February.
None of this is especially helpful, but I hope it reaffirms your path.
I know that I feel better that she is doing the chemo and radiation. If it does come back, at least she will have the comfort of knowing that she did everything she could at this point in time, with the knowledge she has, to try and get rid of it.