TRIPLE POSITIVE GROUP
Comments
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Just popping in. ChickaD you crack me up.
Anyway I'll be MIA for a few days. My last day at ACS is tomorrow but I'm only putting in a 1/2 day. Family member passed late last week and I will be dealing with that for a few days.0 -
Ashla: I just checked out the SCAR project. Wow. What an insightful piece. I am going to share this.0 -
lago - so sorry to hear of your family loss, hope the next several days are not too difficult, these situations are never easy.0 -
Miss Lago...glad I could make you smile during this difficult time...my condolences.
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Sorry to hear of the loss in your family Lago.0 -
I can't remember who told me about the cavier shampoo/conditioner-but it arrived today. Here is hoping for shiny instead of dull hair tomorrow! Had the 2-part nuclear stress test today. Sort of like a MUGA scan on steroids. Will get results in about 10 days-but I feel so much better on the cardiac drugs I know my EF must be up from the low of 35.
Love the Bat Baby and Robin costumes. Both so darn cute.
Ports. Mine is small. Has worked like a charm for 17 months. Know I will keep it while I await news of a clinical trial. But am nervous about having it taken out. Tempting fate maybe?
Marlene-I did the same thing. Never ate much red meat. Was almost vegeterian several years prior to diagnosis just feeding little cells with soy based foods. Not anymore. My genetic testing was clear so my girls are good-but they are all avoiding soy. By son avoided--no man boobs for him!
Isn't it our job to embarras our kids? Think i learned that in Mean Mom School.0 -
If the cavier shampoo is made by Alterna it's probably a very good product. I've been using their Hemp shampoo since the late 90's. The product I use is no longer made but I still have a lot left. 32oz bottle goes a long way when you have hair as short as mine.
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lago sorry for your loss0 -
Susan, that was me and mine just arrived yesterday. Today I have soft hair and it is pouring rain outside. This is usually when I turn into bride of Frankenstein...
Leanne and Girl, keep us posted on the Perjeta. Like Herceptin, maybe only certain people struggle with the side effects. One of the things I've learned about Herceptin is that it is the solvent that supposedly cause the issues, and not the antibody conjugates. Wild.
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Pbrain-I love this stuff! Better than anything I purchase @ my salon. Soft hair and can see (if I squint) a bit of a shine! Before my hair fell out 3 times I was a bit of a hair snob. Mine was thick, shiny, a good color. Also sort of a boob snob. Were sort of long due to breast feeding 4 hungry off spring for years and years. But had 2. Now have none. Could go out as Scar Chest.
A happy candy night to each0 -
Lago sorry for your loss ,my condolences .
Chicka D thank you for the laugh
Pbrain I started the B6 and sublingual B12 today , hope it works cause the neuropathy is getting pretty bad . Have 4 more txs of taxol / herceptin to go .
Health n Happiness to you all!0 -
Happy Halloween! It rained all day, so I was glad the kids got to Trick or treat on Saturday around here.
My hair is kinda curly. Not really as curly as it was right after chemo but definitely not as flat and oily as before chemo. Doesnt seen to matter what shampoo I use its a bit thin. I do take biotin.
Lago, my sympathy on the passing of your relative. Its never easy to lose someone you loved.0 -
Mom, I took 2 B6 pills tonight and 1 sublingual B12. I'm still dealing with a bunch of neuropathy in the balls of my feet, so I'm going to keep taking it. Unlike a fat soluble vitamin, it isn't stored by the body, so if we don't need it, we'll just pee it out. I'm disturbed by how much burning I feel when I walk and I do need to get exercising after all of this crap.
Susan, the Caviar shampoo is great, right? Maybe not forever as our hair goes back to normal, but it is wunderbar for now :-)0 -
Speaking of hair, I decided this was the week to ditch the wig for good. So why was it so hard to go to work and out in public without the wig, when I spent the last year baring my chest to countless doctors, nurses, technicians, residents and fellows? Sometimes I didn't even wear the gown they left for me to put on in the exam room. But walk into work without my wig? I felt positively naked! Can anyone relate to this???0 -
bren - I just had a vision of you going to work wearing your wig and no shirt, lol! I think it comes down to having no modesty about the chest after all the poking and prodding by an assortment of people, but showing your naked head to people who are not connected to the breast cancer process is different. For me, my wig provided a cloak of invisibility as a cancer patient to the outside world. I did get some interesting looks and comments from folks when it was finally long enough to spike up in the front - definitely some stereotypical judgements about sexual orientation, which surprised me.0 -
Bren 58....I was the same way! I had a constant feeling of forgetting something once I stopped wearing it lol
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Hi Ladies! I have been MIA for a while, just taking a break from the ol' boards and "lurking" a bit on the sly. :~)
I finished up my neo-adjuvant chemo on Friday the 25th and I am having surgery on the 15th of November. To say that I am completely and utterly nervous about the surgery would be a gross understatement. I am second guessing my original decision to get a BMX. I keep reading all of the research on how lump+rads is just as effective and I can't help but wonder if I am making too drastic of a decision. My original decision was made completely out of fear, so much so that I never even DISCUSSED other options with the BS. Not sure if lump IS even an option for me since I have known lymph involvement and will be getting an axillary dissection, BUT it seems like I have read that they can do the dissection, even when they do just a lump. I am meeting with the BS on Tuesday and will definitely be discussing options {I bet she thought it would be a quick meeting, haha!}, but what I am praying/ hoping for is some peace and clarity about the whole thing. I am also super nervous about what they will find at surgery time. I really hope there are no surprises, so if you are the praying/ hoping/ chanting/ well wishing/ whatever type, if you could send some thoughts my way I would really appreciate them.
In regards to hair, any idea when I can expect to see some hair growth? I have some horrible grey {I am 35!!!!} peach fuzz right now, but it's definitely not hair growth. I am worried I am going to be one of the people whose hair just doesn't come back {even though I didn't get taxotere!}. I am already taking biotin and shampooing with Nioxin, haha.
Lago ~ Really sorry for your loss. Sending peaceful vibes your way right now.
Maureen ~ Holy CUTENESS Batman!!
And I know it's a day late, but here is a pic of my guys on Halloween. :~)
And one of me and the boys, in my blonde wig, which the husband picked out, my hair is brown {or apparently grey!}. :~)
And now we are off to the zoo. I need to soak up some normal while I've got full range of motion. :~/0 -
Bren, i canot go to my kids school or groceries shopping without my wigs. TwinmamaHeather, you and your boys look goegeous!!!!
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twinmama Heather
Beautiful.. Just beautiful .. You and the children!
I did neo adjuvant chemo as well Second guessing .... Everything... Seems to be a severely under reported side effect of breast cancer dx&rx! I second guessed my decision to go lumpectomy till just recently... Nearly 19 mos. Now I am ok, My BS strongly steered me in that direction. No nodes and the neoplasm was located on outer surface 1 o'clock.
I drove my self crazy after since I had a bloody nipple discharge and constant imaging problems due to dense breasts.There is anxiety. My feeling though is that I would worry about things anyway. Every lump, bump change etc.
You are very young . I think I would look at things differently.
Good luck with your decision. You will second guess no matter what you do IMHO.0 -
Twinmama, you three are SO cute! Don't worry, your hair will come back. Mine is coming in pretty thick finally (my last chemo was in April though) and I keep going to get the back and sides cut to give the top time to catch up! I can't give any advice on your surgery since I had a lumpectomy for my 2.5 cm infiltrator. It was suggested that mx could be evaluated later depending on the surgery outcome but that didn't have to come up. I'm sure you'll feel better after you meet with your surgeon next week. Make her reassure you, she is the expert!0 -
Hello All, I am a "lurker" and haven't posted in a while, but do read regularly. Talking about lumpectomies got me thinking about mine, and I thought I'd ask others their experience with healing from the surgery, and how the breast is afterward, and also those who have had radiation, any changes to expect in the texture of the breast. My lumpectomy was May 10th. I had very large breasts, so I was a candidate for the lumpectomy because it was easy to get clean margins when you can take a lot of tissue - and I had a plastic surgeon do a reduction at the same time, so my new breast is nicely shaped and 3 times smaller than it was. (eventually I may get the other side reduced to match). Anyway, it was a pretty big incision - I just measured 11 inches of the main scar, then there is a small 3 inch scar and a scar all around the nipple, which was re-positioned. The big incision starts all the way back on the side of my ribs. The scars are fading, but I guess my question is about what is left of the breast, and how it should be feeling..
sorry to go on and on and thank you for reading. there's more. I had a sentinel node which was positive, had 3 nodes removed in total. I still can palpate a node under my arm - they did an ultra sound and didn't see anything.
I don't have lymphedema in the arm, but think I have "boobedema" - I get swelling above and around the incision under my arm and breast. I sleep on that side a lot, because when I sleep on the other side my port bothers me, and I have tried but can't sleep on my back or stomach (I sleep on the arm)....
anyway, a roundabout way if getting to my question about how the breast should feel. It feels like there are lumps in it. Are they just a result of previous fibrocystic disease? Am I riddled with tumors? I finished 6 TCH treatments October 16th, start radiation on the 11th. No one has examined my breasts in months - should I ask the radiation oncologist to examine me... of course I should.... also I think my port has shifted...
I'm not usually such an anxious hypochondriac... thank you for reading.0 -
Twinmamaheather, Absolutely you can change your mind. That's what I did after much research and learning about nodes and breast tissue. I was going to have a BMX until I found out they don't take all the breast tissue. They have to leave some. In a lumpectomy they just leave more tissue. Then I learned there are lymph nodes in the breasts that come out with the BMX that can lead to lymphedema. I also learned that radiation to positive nodes is just as effective and in some cases more effective than having all removed. Plus, having all nodes removed has a bigger risk of lymphedema than having them radiated. There is still a risk with radiation but much smaller. There are things you can do during radiation to cut the risk of having a bad outcome (re: breast becoming hard, etc.) from radiation and less burning and peeling. It's a very difficult decision, but you can get a BMX later if you so desire. They can still do reconstruction after radiation in most women. If you would like more information I have the links to research articles that helped me with my decision and some articles that have come out since. PM me if you would like them. Also I asked my insurance company about getting BMX later plus reconstruction if I changed my mind after lumpectomy and radiation and they said yes. I had sentinel node plus one more they were worried about, removed, but made my BS promise they would not take more nodes if either or both of those 2 were positive. Thankfully they were not, but if they had been I would have wanted the rest of the nodes radiated instead of removed.0 -
flaviarose, during chemo I saw my MO every 3 weeks, and he did a breast exam every time. It was reassuring. Now I'm seeing him less often, but he will do a breast exam at every appointment. My radiation oncologist also did a breast exam before I started radiation, and I've had my 1-year mammo which was clear. I would guess that your lumps are from the surgery - but definitely have an exam done! I got lumps and bumps after radiation, and was told that was normal.0 -
TwinMH, cute boys. Cute pics! If you are not sure get the info you need to be comfortable with your decision. What ever you decide will be what's right for you. I chose BMX due to family history. Mom and two aunts passed from BC. Found in one breast not the other which also held BC. Mom decided BMX because she didn't want to be like her sisters. They found the invasive in the prophy breast. She had no chemo and lived 7 years before it got her. So when I was dx, I chose BMX. Guess where the BC was? Yep. So I made the right choice for me. But since you don't have my background, you use your own to make your decision.
Flavia, I saw my onc every time I went for chemo. I am still seeing him every 3 months due to low mag levels. He does a breast checkup every time I see him. Found a lump I needed to get checked out. Luckily it was a Fatty node and scar tisdue. Both very common after MX . So I'm guessing that something like that is going on. But it has to get checked out.
Much love to all.0 -
thanks for the reassurance, patinMN and moonflower0 -
Twinmama, very cute pictures! Your hair will grow, but it might be slow with the Herceptin. I am 33 weeks PFC, and my hair is just over an inch and a half long and I just started going out without the wig. I can't believe it has taken this long to grow. It used to blonde and now it is dark brown.
SpecialK, I definitely would have turned some heads going to work like that!0 -
Hi ladies. I am a breast cancer survivor and now find myself researching Her2+ cancers for my newly-diagnosed aunt. Her diagnosis is DCIS with a 0.5cm invasive tumor that is stage 1, grade 2, ER+/PR+, Her2+. From what I've read she is in the grey zone for needing chemo or not. If she does need chemo it would be the Her2+ status that would require it. What do you ladies know about chemo with a small Her2+ tumor? I'm afraid she is not able to take everything in emotionally just yet and I want to make sure we truly know her options before she makes any decisions. Thanks so much in advance for the help!0 -
Hello SLG: Most of us HER-2 positive ladies had chemo with Herceptin and some with small tumors. I was also Stage 1(a) and Grade 2 with a 1.6 and required chemo just because of the HER-2 status. What has her onco said? Congrats to you and sorry to hear about your Aunt.
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slg - here is some info for you. This is a link to a thread that specifically deals with Her2+ masses that are greater than 1mm, but not larger than 6mm:
http://community.breastcancer.org/forum/80/topic/781897?page=9#post_37003270 -
what I've read makes it seem that anything over 1 cm and Her2+ is best off with chemo. Her mass was 0.5 cm so not sure if that still applies. We have a strong family history but she also has other health problems and it worries me that she may not do well with chemo. This seems weird to me but after her positive mammogram she was sent right to the surgeon. She had a lumpectomy and they need to go back in and clean up the margins but she still hasn't seen an oncologist. I'm pushing her to talk to at least one MO before she has another surgery.
I will check out the other thread. Thank you!!
Thanks for your congrats. I was 33 when dx was stage II (or maybe III we aren't sure) ER/PR+ and while I was pregnant. Not a good time for me but now baby (who is 3) and I are healthy and doing great
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