TRIPLE POSITIVE GROUP
Comments
-
LeeA..
Gotcha... Looks like alot of us arimedex ladies are gonna have male pattern baldness! Sigh......0 -
ashla and anyone else who is on arimedex, here's a question I've been meaning to ask - did you start on it immediately after chemo ended or did you start after the seventeenth infusion of Herceptin?
0 -
LeeA My onc wanted me to start 1 month PFC (I didn't have rads). My NP had me wait an extra week so I could start March 1st… so we would remember when I should stop. She said that women who do rads wait till rads is done so 5 weeks is no big deal. I think my onc waits the month so you can recover from some of the chemo SE.
0 -
LeeA,
I started immediately after rads Correction...one month post rads. Likely my first herceptin visit post rads when I saw my mo,. My first mo..I switched @ herceptin 11....had wanted to wait till I finished herceptin before starting the AI.0 -
LeeA~did you take Biotin from the beginning of chemo? Did your MO give an opinion about it?
I never went completely bald (smooth I mean) and have had some regrowth between TCH #2 and #3 and I'm wondering if I'm going lose it? I'd like to start taking the Biotin if I can! I will ask my MO about it...
And pedicures and manicures are a no no right?0 -
Wow, so sorry for all the problems and SEs that are out there recently. Hugs to all. That sucks.
My hair is still curly. I will be one year pfc on June 9. (TCH) unless you count Herceptin, then its Aug. 10. my sister said I used to have curly hair, .I don't remember that, but she's six years older, so I guess she could be right. So maybe ill keep the curls. I like them, and I don't have to wash my hair every day like I used to, it was so limp.0 -
My onc actually started me in Aug last year, but I was pulled off Herceptin first.
0 -
lago, ashla and moonflower, thanks for the info! I haven't told my MO that I'm doing rads yet. I'll mention it to him when I go in Thursday. He mentioned me starting on it when we got back from vacation but perhaps the rads thing will change all that.
--
Speedy4, I took 1000mcg throughout chemo and then cut it back to 500mcg toward the end of chemo. I'm still taking 500mcg. I took it out of my purse twice (different appointments) and showed it to my oncologist and he was fine with it.
0 -
Wow Lee, you have alot of hair I think. We're about the same amount of time post-chemo (my last was Apr 22) and mine is just starting to come in. I actually shaved it again last week because during taxol, the hair that didn't fall out was growing so my head had a fuzzy look I wasn't loving ('cause otherwise having chemo-head is so pleasing, I know...) I am so antsy to have just a bit of coverage as I'm tired of my head being cold in the damp climate that is Vancouver this month. I try wearing a cap at night but then I wake up drenched in sweat. The other irritant the past few weeks is my eyelashes falling out. They keep falling into my eyes and now my left eye is puffy and red. I'm having a hard time resisting rubbing it even though I know that is perpetuating the cycle of irritation.
I start rads tomorrow...
0 -
Good luck with starting rads, Marlene. I've decided to have radiation as well. I think we talked about this a while back.
How is your baby doing?
Yours remains one of my all-time favorite avatar photos.
0 -
Speedy4 I took biotin all through chemo. As I mentioned I had been taking it since 2004/2005. My onc doesn't like you to add or subtract anything unless what your taking is know to interfere with chemo. She wants to be sure all SE are from the chemo and not from starting/stopping meds/supplements.
0 -
Marlene, you might want to see an eye doctor about the puffy red eye. I had a similar situation and the eye dr said that the loss of lashes from chemo disturbs the tiny oil glands at the base of the lashes which causes the irritation. The irritation can then lead to swelling and infection. I had to go on prescription eye drops 2x day for 10 days to clear it up. I know the thought of another Dr appt is not appealing. Chemo, the gift that keeps on giving
0 -
I got a puffy lid PFC. I found warm compresses brought it down.
0 -
Lee, last Friday was my first Herceptin treatment since finishing rads, and they drew blood to test my hormone levels (they told me they don't think I'm totally menopausal, so they need to decide on tamoxifen vs. AIs). My NP told me I'll get my script when I go for the next Herceptin, so I'll start about 5 weeks after finishing rads.
Yipee!
0 -
pbrain - I stopped having periods after the first chemo. I was 51 and still having regular periods when I started chemo. I was on tamoxifen for about a year, no periods for about 18 months and low estrogen levels. The onc PA switched me from tam to an AI (letrozole) and within about a month (I don't remember exactly how long) my hot flashes got a whole lot better. This made me suspicious and I told the onc PA and when we checked my estrogen it was high again. I went back to the tamoxifen and my regular hot flashes started again (hourly). I discovered through reading that in women with chemotherapy induced menopause a few women will recover ovarian estrogen production on letrozole. It doesn't mean they will start having periods again, just that they have more circulating estrogen which isn't the right environment for an AI. a recent article about it link
0 -
pbrain I had my last period 2 weeks before chemo. I was 49. My periods were regular but fewer days (4-5 vs 7 in my 20s). Since my sister just finish menopause at 53 and mom started at 51 my onc felt I done. Put me on Anastrozole from the start but tested my levels for 5 months. I also think the family history of blood clots might have swayed her to want to stay away from Tamoxifen for me. Another friend of mine, 48 at diagnosis started with 2 years of tamox then moved to Anastrozole. She too said the hot flashes were milder on Anastrozole.
0 -
Well, the MO and NP are suspicious of me because even though my last period was in December of 2010 (at 50), I have told them I've never had a menopausal symptom. None, at all. I attribute it to genes (supposedly my maternal grandmother didn't have any either) and to the fact that I take Paxil, which can help.
So I'd be happy on an AI, but they think I'm still producing a lot of estrogen, just maybe no follicle stimulating hormone, so no menstruation. I so don't want the symptoms of menopause. So far, even with chemo, nothing...fingers crossed.
So a couple of questions--when do you go from being a patient to being a survivor? I think I might be one, but I don't know.
And second, I just want to vent a bit. I know some of you know about the fiasco with the "friends" who cleaned my house when I was hospitalized after the first chemo. The drama and unkindness was just too much for me, so I've never patched things up with the two leaders of the pack, but I work with them, so I am friendly. The one doesn't speak to me, which is of no consequence. After cancer, I am starting to realize what matters. But the other lady is seriously odd. She invites me to lunch with a group and then won't look at me or talk to me. It is strange. It is like she wants to be my friend, but she doesn't like me.
I've forgiven them after I told them that they upset me. To me it is water under the bridge and I just need to keep my distance but be friendly. I guess what I just don't understand is why they are so mad at me. I was polite when I told them they'd hurt my feelings and made my poor Mom and BFF cry (both live in Philly and it would have cost them a ton to hop a plane out to Indy. I knew I was in good hands in the hospital and that I wasn't dying--just felt like it
). I didn't yell and I don't do drama, I just stood my ground and said they'd really done something the wrong way. I don't know, I guess I just don't understand their hostility towards me since they don't think they did anything wrong...I don't get people... 0 -
pbrain
- You were a survivor the day you found out. (ACS definition… makes sense)
- NED (no evidence of disease) depends. In my case it was surgery.
- Stop being a patient. Well technically you are one every time you go to any doctor. But for me I was feeling pretty done with this while I was just doing Herceptin and my hair was long enough for me to feel normal. Granted I still had exchange surgery, nipples/revision, tattoos but that stuff is cosmetic not treatment. Important but it's not treating the cancer.
As far as those friendamies. I wouldn't worry about this. It's their problem not yours. The want to be jerks about it there is nothing you can do. I'm done dealing with my sister and her insincere way of trying to patch things up. Every time I go for it she then throws road blocks. Who needs that kind of bullshit in their life.
0 -
PBrain I know u work with these people and seeing them loads but tht doesn't mean u have to be always smiley and friendly to everyone. So if they are out of u'r feelings they are out of u life and it really is their loss. I pretty much remember how u handles it and u were just fine so it is them for their reasons and u know---u don't need to know their reasons cuz it shouldn't matter to u anymore. It happened and it's done and as long as there are other people at lunch don't give it another thought--it's not worth u'r energy. And if u prefer the word Survivor then u are one. YaY for u, u had a rough time.
0 -
I agree lago, I felt like I was a survivor when I got to herceptin alone, every 3 wks. You get your life back. Surgery, chemo, rads over. The great thing is it is starting to recede, I dont think about it all the time, not the first thing when I wake up anymore. I sympathize with you girls, the friend issues. I only told my dx to immediate family. For me the right decision, I couldn't have handled the questions or people letting me down. I had enough to deal with. Now I feel like I have come through. Didnt know it would be possible 7 months ago.
0 -
Thanks Lago and Cami, you are so right! And Waiting, I feel the same way. I never thought people (female "friends") could be so cruel, but I saw nothing but amazing behavior from so many of my friends and coworkers, especially males. My German colleagues sent me flowers directly from Germany, and they all wrote the sweetest card. I still feel so touched when I think about that. And like I've mentioned before, one of my male buddies came to every chemo, brought me lunch and sat with me until the benadryl hit. Since I did 12 chemos weekly, that was something.
It is sad how people let you down, and you are all right, I have to get over the hostility and realize it is their issue. It is kind of tough though.
I have a mammo tomorrow and an appointment with my breast surgeon afterwards. I'm nervous about the mammo, but seriously, after that onslaught, how could anything still be there?
0 -
Pbrain, nothing is easy, but we get through it. much love to all.
0 -
Oh, and just a few more things because I'm in a chatty mood tonight. I need to get up very early, so I have no idea why I'm still up!
The hostile lady who keeps inviting me to lunch--her sister was diagnosed with rectal cancer about a month before I was diagnosed with BC. They put that poor lady through chemo (daily) and radiation (daily) at the same time and she was very sick. She was hospitalized 3 times. They did the surgery to remove the tumor in December and she had a PET scan two weeks ago. They've found the cancer everywhere, and so she is going to hospice now. This woman is only a few years older than me. I get the vibe that my frenimie looks at me like "well you didn't have much of a cancer, not like my sister who is dying."
I don't know, sorry for venting. I guess I just think people get mad at you if you do ok after treatment, and if you were diagnosed relatively early, and if you have the "popular" cancer? I don't know...I've got so much to sort out.
The other thing about being a survivor--how can it be when you are diagnosed? My Dad was diagnosed with adenocarcinoma, no origin specified and he passed away after 2 weeks in hospice. I don't think of him as a survivor
0 -
Thanks Moon!
I've got ants in my pants these days with angst and fear. I am reading the book Picking Up the Pieces, and it is soothing. I need to shut my brain down ;-)
0 -
Pbrain, I hear you on the ants in the pants part.
Also, nice photo!
0 -
Good discussion! I had a difficult time physically with cancer and hardships all over the place due to treatment, but am something of an oddball in that I never have had any angst or fear of recurrence. I was terrified of treatment all the way through it.
My older sister, who was diagnosed with IDC 2 years before I was and who chose not to do tamoxifen or chemo and never has had recurrence of IDC (but who has had a dx 2 years ago of IBC and then did chemo and hormonal therapy) cannot discuss cancer due to her terror of recurrence.
We love each other though.
We all have ways of being hardest on ourselves, but it IS mostly our choice.
A.A.
0 -
AA:
<<We all have ways of being hardest on ourselves, but it IS mostly our choice.>>
Thanks for posting this. Right now, my pins and needles are related to something else going on concurrently with BC and what you wrote is a good reminder that I do have a choice in how I handle it.
0 -
Jane....love the photo !
0 -
PBrain I love u'r new photo--Great.
And AA, u'r right we all have our own way and whatever makes it easiest for ourselves--but I just don't let my brain thik about it ever it's easiest on me--that's all
0 -
Aw thanks Lee - a cute little baby does add a little something to a picture
Chloe is doing so good, she has her four-month shots tomorrow and I'm so curious to get her weight update 'cause she is getting SO fat! And I'm so glad because she was skinnier than I had hoped at birth at just 6 lbs 10 oz. I'm pretty sure she's around 15 lbs now...! When do you start rads?Bren, I had applied ice to reduce swelling and chamomile tea compresses throughout the evening last night and when I woke up this morning the eye was improved so I think I lucked out. Phew.
A.A. - Like you, I have a sister who went through this whole thing a few years back. And because we're twins, I really took it hard and lived with a lot of fear that my turn was coming (even though she was tested for the BRCA mutations and that was not a genetic contributor to her cancer). And honestly, while I was pretty upset when I got my own diagnosis, I feel more relaxed about the future now. I had tried so hard to control my health outcome through diet and exercise the past few years - vegetarianism, veganism, running a half marathon... I thought I could control my fate but I think differently now. I'm still trying my best to live healthy but I am surrendering whatever control I thought I had.
I just got my genetic testing results from a University of Washington study I signed up for, for women diagnosed under age 40 or with triple negative BC. The BROCA DNA sequencing test identified no mutations in the 42 genes included. So this doesn't help me answer WHY DID I GET CANCER. I'm back to "guess I ate too many Cheez Whiz sandwiches as a kid"...
0
