TRIPLE POSITIVE GROUP
Comments
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first off, hugs all around. Sounds like everyone needs one right now.
I'm so glad you guys brought up the gyno /ovary related stuff. My poor girl parts are all confused, and both my MO and midwife are happy to wait and see what happens before we do anything. But I'll have to say, that just makes me nervous. My ER status was >90%.
How many of you premenopausal ladies did only tamoxifen? Did your MO do anything to confirm that it was working? Did any of you seek out ovary suppression? Did your cycles regulate after the chemopause wore off? How did you know if you had irregular bleeding if your cycles were still wonky?
I'm just full of questions tonight.
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McKatherine - my ovaries are being suppressed with zoladex every three months, I will have my estrodial levels checked before my next injection to make sure they are going down, it can take a couple months I guess . My MO suggested it immediately after surgery, I am also on tamoxifen, which I requested to start PRIOR to radiation because I was/am/whatever 100 percent ER+ and wasn't comfortable with waiting so long. The jury is still out on whether ovarian suppression + tamoxifen is better than tamoxifen alone. There were supposed to be results from the SOFT trial, which is looking at just that, by now, but ALL groups are doing better than expected, so the trial has been extended! So that's good news at least! As for your other questions, I have no idea and have some of the same myself regarding how to tell if bleeding is abnormal.
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Bren58, I love the new photo! Wow! You remind me just a bit of Kim Basinger.
I also love Nicky's photo (good luck with your surgery, Nicky).
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I'm still in recovery mode from the exchange surgery. I ended up with gummy bears (595 cc each side). 595 seems like a lot of ccs to me but I didn't question him nor did I research it. He did a great job on my secondary set of tissue expanders so I just let him do his thing (including removing my port).
Holiday wishes to all!
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Iago,
I'm fully convinced my LE was caused by chemo too. It came as a total shock to me - because of no surgery or node involvement the risk was never mentioned and even just this week my onco expressed his surprise (again) at the extent of involvement. It's now been 13 months of being severely affected. My arm and hand are particularly bad, to the point that the bank recently sent a request for examples of my signature. The only asked for mine, not dh's, even though the accounts are joined! My leg is bad enough that it caused the stress fracture in the OTHER leg. Not having much sensation means I often limp.
With regards to ovary suppression, it was never mentioned to me. Now that tamoxifen has failed and I'm going to start faslodex in January I'm not sure if my onco has something planned or not. I'm almost 43, and haven't had a period since my first round of chemo which was the end of August 2012
Nicky
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McKatherine I will relay more story so you can see how I know my bleeding is irregular.
I was 44 when I started chemo. My periods had been regular prior to that. I had my last "regular" period during chemo. I started Tamoxifen a few weeks after finishing chemo. I did not have ovarian suppression.
At one year post chemo I had my first episode of bleeding. I thought it was my period trying to come back, but the bleeding lasted only a day and a half and did not come back the next month. My MO/gyn insisted on an endometrial biopsy to be sure I did not have endometrial cancer due to Tamoxifen. The biopsy results were benign, thank goodness.
A month or two after that I had stopped Tamoxifen for a few weeks due to an extensive surgery. Shortly after restarting Tamoxifen I started bleeding again. This time, it was not just spotting. I bled for a full 5 weeks. The last week it was very heavy and scary. We were just about to do a d&c when the bleeding stopped all of a sudden. My gyn felt it was all hormonal (my period trying to come back, sloughing off of a years+ worth of build-up, etc.) and said she did not feel I needed a d&c b/c of my recent benign endometrial biopsy results combined with the fact that I had been on/off Tamoxifen which probably really messed with my hormonal balance. So, she recommended a wait and see approach - follow-up was to be in 3 months.
Well I went almost 3 months with no bleeding at all. And I have not missed any Tamoxifen. Then just last Friday I started spotting again. During my follow-up visit with her this week she said she didn't feel comfortable at this point with watching any longer and recommended I do a d&c for full confirmation that there is no endometrial cancer and also to stop the bleeding (it's been a week now with no sign of it stopping).
So that is how I know the bleeding is irregular.
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soriya123 you're driving! wow better than I did after 2 weeks. I got a freelance gig from my old boss and rode the bus to the job… thank goodness I finally got a seat. Had the bus stopped short I would have been in deep trouble with nodes removed on both sides
Seriously if you are thinking "I can't wait to get back to running" I would say you are doing awesome!camillegal just talking about you yesterday with Adey. Someday I'm going to meet you in person. You are a very funny lady linky
Nicky in my case my arm was at risk because of surgery. It wasn't just the chemo that did it. It's really odd but it sounds to me like you too had a predisposition and all that fluid retention during chemo set it off.
McKatherine I had my last period 2 weeks before chemo. My onc felt I was so close to menopause (based on my mom & sister) that she put me on Anastroszole from the start and just tested my estrodial levels for 5 months to be sure.
LeeA enjoy the new squishies.
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Oh I can't give any opinions on periods, but I think u just have an added goofy thing happening to u. And u don't need any more complications. I hope all of this gets sorted out.
Lago I watched the linky and that was a great scene in that movie and just like him too. But really I'm not funny I'm just me, I'm just not serious. Which has always hindered or helped me at times.
Well my job started early today--people are panicking with this weather and no electricity--I don't blame them, more and more and with no furnaces which always happens now. But it difficult for me on a cell phone to understand everyone so who knows what I'm emailing out if it's right---Well maybe I'll get a bonus if I actually get a message correct.I know this won't last much longer LOL
I hope everyone has a decent day today, I'm still taking my Aunti-B's, I should be done in a couple of days it's been over a week and nothing has changed.
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Thanks for the complement, Bren. You look wonderful with your short hair, though I know it will take time to get used to the new you.
Lee A,, I know you are happy to have that port removed. You look great in your photo, by the way.
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I may not be able to post in the next few days so I want to wish all of you who celebrate. A Very a Merry Christmas!
Love you guys!
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Thanks Ashla! You have a VERY Merry Christmas too! I think I need to make it a goal to NOT be able to post on here as well. :~)
On the hair subject, did anyone else's hair grow back in GREY?! Even if it wasn't before?! Even if you were 35!? Ahhh! Thankful for the hair though and I am pretty sure I am going to need my brows waxed soon because they are unacceptable, haha. I'd forgotten how WIDE they were before I started waxing them ;~)
Does anyone know if it's okay for me to take a bath if I don't have lymphedema but am afraid of getting it? I could really use a nice relaxing bath!
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Merry Christmas to you to Ashla - and to everyone who's heading off, or preoccupied with family. May we all have a happy, peaceful, stress-free Christmas. Meet you all back here in the new year!!
Nicky
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Twinmama I don't know about the bath at all, but it sounds good.
Ashla I wish u a very Merry Christmas with love, health, and peace.
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Since I work on here everyday I pop in and out ll the time.
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Merry Christmas to Ashla!!! Twinmama I am still bald...i can see it growing little hair n there but look like in black....I hope no gray . LO L and i am 39 yrs old. Before chemo i dont have gray hair (nice long black straight hair) so i hope it come back black n straight
Merry Christmas to all of you lovely ladies!!!! 0 -
My hair grew really slowly on Herceptin. It took me 7 months for it to be over an inch long. It is only since I stopped Herceptin 2 months ago that is growing in faster. So for those still on H, hang in there it will come in eventually.
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Merry Holidays to each! Hair questions always make me smile. Mine fell out three times. The first time it ceme in black and white. I never had a black hair on my body-anyplace! I looked like I dropped from the 101 Dalmations! Fell out at about 1/2"-hairs were sharp and straight. Next time the color could not be described. As a friend (male) said-that is a color that would NEVER exhist in nature. Lasted about 1/2 again and fell out. This time it is almost my natural color closer to an auburn. But has soft curls-which I have NEVER had in my life. It is almost 2-3" in some places-so may stay. My eyelashes and brows come and go. The hair on my arms has fallen out again though. Odd.
Day 5 on Tamoxifen. No change in pain level from the AIs.
Last year seems like yesterday and 10 years ago.
Blessings and love to each
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Mine came in black and grey/white. I did have some grey before but not that much. Never had black hair. I looked like my husband's side of the family. They all have dark salt & pepper. Eventually the brown came back but I didn't wait. Had it colored the day after I went topless at 12 weeks.
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Any surgeon who says their patients don't get lymphedema is full of crap. Seriously.
I believe that my lymphedema was also caused by chemo - I had a sudden body-wide swelling event - couldn't even wear shoes. I started with axillary web syndrome in that arm, then it progressed to swelling. Like Lago, mine is controllable with MLD and sleeve-wearing.
twinmama - take a bath and enjoy it, just don't make the water temp scalding. I take baths all the time - it has no effect on my existing LE.
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Just got out hospital, had left mastectomy for now!! 2 JP drains& home nurse comes in for wound care!! One of many surgeries!!
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Goutlaw,
Glad to hear you're home! Hope all went well and that you can now enjoy the holiday season.
Nicky
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Thanks Nickii u2...Enjoy holiday
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Thanks for the well wishes ladies.
I enjoy the hair photos. It's so good to see and encouraging.
I decided to try riding my bike today. I couldn't even make it around the block. Had to get off and walk it home! I have been so sedentary since treatment #3 when the fatigue really set in, but I'm going to keep trying. Maybe I will make it a little farther each day.
I have a question, since I've seen so many talking about lymph node removal. Granted I was very distracted and upset by my DH when I last met my BS, but I could swear she told me she didn't know how many lymph nodes she would have to remove and sometimes very many (30+?) come out because they're all kinda strung together. She made it sound like she really can't control how many come out. Is this true? Maybe I misunderstood, but I feel really uneasy about this.
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Yeah goutlaw. Home for the holidays!
LeanneF We all don't have the same number of lymph nodes. Some ladies have a lot and some not so many. Also they can get clumped together. Typically in with SNB the BS takes out 1 or 2. In my case because 4 light up and were clumped together he too 4 (right side. Left side had the big tumor so he took out level I, total of 10 nodes). Also read this: linky
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Goutlaw ~ So happy that you are home and will be able to enjoy the holidays {you WILL be able to!!}. I wish you an easy recovery.
Leanne ~ I was told basically the same thing by my surgeon re: number of nodes. We all have different numbers of nodes, so different numbers will come out. If the surgeon just takes an "anatomical section" instead of digging around for individual nodes, then they don't even know how many they took until it goes to pathology. In my case, I had 2 known nodes prior to surgery {hence the neo-chemo} so my surgeon took my level 1 and 2 nodes {there are 3 levels} from the axillary area, this ended up being a total of 14 nodes. Hope that helps!
Now, back to cooking dinner {chicken and wild rice soup!} and watching all my boys build a train track! Have a nice night ladies!
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Yea my surgeon said when I asked how many nodes he said I had to wait for path report
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Can someone tell me what test or scan they do to tell u there is nomore cancer found?
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Goutlaw, I hope you feel better soon .
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Goutlaw ~ tests/ scans really depend on the doctor/ hospital/ cancer center whatever. There are a lot of doctors who do not routinely scan as it is sometimes thought to cause more harm "chasing shadows" than good {ie: radiation exposure} . I know some places routinely scan people who are stage III, or triple negative, or have particularly aggressive pathology...or or or. Some scan everyone - no matter what. Some scan only if there are worrisome symptoms. So basically, it just depends on the doctor and the patient.
For now, enjoy the fact that they removed the cancer from your body. I know I felt a huge weight lifted off of my shoulders {chest? haha} after surgery, just knowing it was out! How did your surgeon feel the surgery went, smooth sailing, no surprises? Yes, some cells can still be floating around, as they are in pretty much everyone in the population, but that's why we do herceptin and tamoxifen {or whatever} and possible ovarian suppression and maybe radiation and eat right and try and exercise or whatever we can. But like I said, for now, enjoy the fact that they removed that little a-hole and that you can focus on healing your wonderful body. It remembers how to be cancer free, I know it does.0 -
it's 4.45 am, and I can't sleep. Anyone around?!
Nicky
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I worked with a massage therapist who is certified to work with cancer patients. Went to her for about 8 months after the first MX when I had 23 axillary nodes removed. I also worked with an OT and had a sleeve. All was prevention therapy per my breast surgeon. So far so good.
Goutlaw-glad you are out. Do you have a pain ball?
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