TRIPLE POSITIVE GROUP
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I remember filling out pages and pages of questions at my initial BS visit. I do believe the radiation question was asked.
Edit:
Just checked. I still have the form that I filled out for my initial onc visit. This is what's on there:
Toxin & Radiation Exposure:
Were you ever exposed to radiation, toxic chemicals, toxins, fumes, or extensive sun? Yes No
If yes, please list toxins, place and dates of exposure:Redninrah that seems like a fast return.
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it stopped in SEptember and now back again, at least i know things have returned back to normal in that dpt
Lago- when did ur stop?
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Congrats Saralmom! That must have felt wonderful walking out of there knowing you'd not be back for another Herceptin treatment!
To everyone else...I have not been feeling that great the past few days. I had what they thought at first was a hernia from my DIEP. What it actually was, was a very thinning wall of my abdomen, wasn't quite a hernia but it could've ended up being one. It was a bigger surgery than what they originally thought. I was in the hospital for 3 days and more than a week later I am still on percocet every 4 hours. I did see a ray of light this morning when I woke up so I think I am finally getting better!
They reinforced the area with mesh. I was thinking perhaps a size of half of a dollar bill (I honestly hadnt a clue) come to find out she told me it was more like a sheet of paper! She also had to do a lot of internal stitches in my muscles.
Anyway, enough of me complaining I hope you all have been doing well
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nora - I hope you keep feeling better every day!0
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oh forgot to mention....to top it all off, I was having my stage 2 of my DIEP done. The dog ears on my waist and breasts. Seems that while I was under anesthesia my blood pressure dropped, so they dealt with that, then when I came to, my blood pressure got high and I went into a coughing fit. I have no memory of this of course. Whatever this blood pressure and coughing fit did, caused stress to the work they did on my side and burst a blood vessel and caused a hematoma. They couldn't control the bleeding and about two hours after being in the recovery room I was put back under again to fix that area.
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Thanks Omaz....
I have to say....with the combo of percocet and xanax for pain and muscle spasms I have having some very wild dreams! It's also completely cured my insomnia but alas next week I'm thinking that will come to an end
So how have you been?
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Nora - I'm doing alright. Getting energy back, thankful to be able to exercise again because it makes me feel better. My LE/cording arm is better too so far. Just the neuropathy and dealing with sore joints, mostly knees, and some leftover things from radiation. I seem to be doing alright with the tamoxifen so far. I am actually thinking the hot flashes MIGHT be easing up a little too. We have a vacation coming up in 3 weeks and I am looking forward to that. I haven't done anything or gone anywhere since last May!0
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Ohhh that's what my eyes are on as well. VACATION! Where are you going? Somewhere cooler than here? Lord knows, we all deserve a vacation after all this stuff we've been through recently.
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Saralmom - congratulations! HUGE milestone :-)
Cotinh - I was also given the TCH vs. AC-TH choice, initially. Then I switched oncologists, and my new one strongly preferred ACTH. The reasoning was that a) in a healthy person without heart problems, lasting heart damage is rare, b) TCH seems to cause more unpleasant side effects overall, particularly neuropathy, and (most important to me), c) AC-TH has slightly better outcomes. With an aggressive cancer and a healthy heart, I wanted to give it everything I had.
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redninrah I had my last period 2 weeks before chemo. Both my onc and I are not expecting it to come back that's why I'm on Anastrozole. They are doing blood tests to be sure though.
Nora, OMG what a PITA. Hope things continue to improve from here on in. Good thing you don't remember the coughing fits etc.
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Nora wow you have had a rough go of it, hope you are on the road to recovery now. Hang in there. Funny how you want a vacation somewhere cooler and all we want here in the east is some sun and warmth, and for all the rain to stop.
Tonlee i totally understand about the excess radiation, being a woman that intuition thing is powerful stuff, and really hard to ignore. I have a lot of nursing friends who are always asking me "why are they doing that" which makes me second guess my decisions. We just need to trust our instincts and pray for the guidance to make the right choices.
BTW I dont remember any questions on any forms pertaining to rad exposure, chemicals,etc.
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Thanks girls!
You know what's funny carberry? is the fact that since Omaz and I are in Arizona, it's been nearly 100 the past couple of days. It's only going to get worse from here on out.
Normally when I make comments about wanting to go to a cooler climate I dont even think about how everyone else is wanting to get some sunshine and warm weather their way.
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Come to Chicago. It was almost 90 on Thursday but today it barely reached 50. Tomorrow in the mid to low 40's with rain and wind. Hello out there mother nature. It's not March it's the other M month!
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in reference to what redninrah said....
Isn't the goal to keep our periods away to lessen the chance of recurrence of BC?
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I think the goal is to keep the periods away, my onc said if mine came back they would do something. Can you have your period on tamoxifen?
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I hit chemopause too. I had my last chemo well over a year ago and at age 44, I think it's going to stick. I believe I read somewhere that recurrence rates are lower in those whose periods do not return. It may be something along the lines of why those who experience hot flashes on tamoxifen have lower rates of recurrence.
TonLee...for what it's worth...rads really bothered me. I went by myself, leaving my house at dark all alone at 5am to get the first appointment. My husband wanted to go..but I poo poohed it.
That machine, and what it could be doing to me...scared the crap out of me. My friend actually sells these machines. I spent a lot of time researching the various facilities to make sure I got THE most current technology. BUT, I was still scared.
It goes so fast though. And it was really SO much easier than chemo. I burned in my armpit but that was all over with FAST. It's crazy how fast you heal with radiation. And you are ,IMO ,on the right path with iodine...I take Iodoral.0 -
Hi can any one out there explain Hormone Receptor Negative for me, that is what I was ten years ago, and now the cancer is back.
Thanks everyone
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sam - I am very sorry you have been diagnosed with cancer again. (((Hugs)))
When they check out the cells from the tumor they look to see a few different things. One of the things is whether or not the cells have estrogen receptors, progesterone receptors and HER2 on their surface. They look to see how many of the cells have them and then on each cell they try to figure out if there are a lot or a little of the receptors. For us, the triple positive group, we are estrogen and progesterone receptor positive as well as HER2 positive. some of us have 50% of our cells with receptors and some of us have 90%. If your tumor was hormone receptor negative last time that means it didn't have any of those estrogen or progesterone receptors on the surface of the tumor cells. For receptor positive cells, estrogen can fuel the growth of the cancer but for receptor negative cells estrogen wouldn't make a difference. At least that is how I understand it. Also, women with hormone receptor negative cancer don't usually take anti-estrogen medications like tamoxifen or aromatase inhibitors like femara. I say usually because there may be exceptions. If you are HER2 positive you can get herceptin which is a very good targeted therapy that wasn't really available 10 years ago.
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HI Sam.....sorry to hear about the recurrence. Omaz gave you a great explanation on how it all works
Hang in there!
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Just checking in, I think I was avoiding this site while trying to return to "normal" after chemo. Hah! Not going to happen, I finally know what it means when people on here say "your new normal".
Rads will end for me Tuesday. It was truly uneventful, the biggest pain was the drive and a little fatigue. My skin held up really well. I had no redness, peeling or pain. I am fair skinned.
I have issues with joint pain/stiffness. I get out of bed like an 80 year old woman. I have not started Tamoxifen yet, so I assume this is chemo after effects with a dose of Herceptin and early menopause thrown in. It sucks, but I am trying to be patient with healing. I just thought I would bounce back quick!
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Hi sam1 so sorry about the cancer returning, but the up side is they have come a long way with treatment in 10 years. So sorry you have to be here, but there is great info from everyone here that should be helpful to you
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sunflower - I am about 5 months since last chemo and now I notice that the '80 year old' woman thing is starting to dissipate for me. Exercise really helps. I might be behind the curve because I had some problems with LE in my arm but now am able to exercise regularly. It'll get better, keep moving!0
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Regarding periods and recurrence -
My onc said she wanted me to stay menopausal b/c women who stay amenorrheic "have better outcomes." I guess that means less recurrence. At 44, she thought my chances were good to get my period back on Tamoxifen. She recommended ooph and I ended up having complete hysterectomy since Tam can cause uterine cancer in rare cases. Didn't want to take my chances if I didn't need to.
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Thanks sara, so periods came come back after chemo if you are on tamoxifen, I was wondering.0
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Is that why when I was first biopsied the nurse asked if I was in meno. When I said yes, she said "Oh don't worry, you will be fine". libray.i.
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Hi Sunflower...you sound a lot like me My last herceptin is going to be this Wednesday, then I can get my port out. I too have not started tamoxifen as I was only 10% + for ER and PR and I am just not sure it is worth it, with all the side effects people get. I also have RA so the stiffness thing is also a problem. I thought I would bounce back sooner and am having a hard time emotionally because I haven't. Linda
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Glad you brought up the uterine cancer link. A very good friend who had BC 10 years ago who has been so supportive to me through this time was diagnosed with an aggressive uterine cancer which her gyn-onc feels is directly related to her BC treatment from so long ago. I had a TAH/BSO almost 10 years ago - and I am glad (except for the part where I was on HRT, and have to wonder about that!)
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Hi my friends, it's been a while since last time i posted in here , I had my surgery May 3 . I am getting better day by day , but i am also feeling kinda depressed.
I got my path report from surgery. It's not the best result thoug, after months of neoadjuvant chemo and having been told that the tumor and 3 lymph nodes disappeared in the scan , after surgery there was still just couples of residual cells in breast , but thank God the margins were clear, but there was still cancer in 3 lymph nodes and the biggest was 0.6 mm, I wish there wasnt any in lymph nodes , i will have rads and continuing on Herceptin. Is anybody out there with similar results ? I am really worried that i still had cancer in my body even after so many months going through chemo , any thoughts??
thanks
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Melania you will still be doing Herceptin and I assume an Al or Tamoxifen. Sounds to me that chemo got most of it. Rads, Als/Tamox will take care of the rest… if there is even any to take care of. This is why they continue with treatments after chemo. You still have 3 guns loaded (Rads/Hormone therapy/Herceptin)
I had my surgery first. I don't even know if the chemo did as good of a job, if any as the chemo did with you. I mean 2cm down to a few cells sounds like great results to me.
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Did anyone get their port removed after chemo, even though still on Herceptin. I'm thinking of having the port removed because it is creepy and my jog bra goes right over it and it is painful (as is the seatbelt). Any issues with the Herceptin in the vein?
Arlene
Yes, I'm being positive that they will add the Herceptin back for my 6 June chemo (and hopefully last).
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