TRIPLE POSITIVE GROUP
Comments
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Chrissie29 - Taxotere killed my nails. First they started changing colors...very dark. You can cover them with dark nail polish. Unfortunately, that wasn't the end of it. Eventually they actually fell off (all, even toe nails)...DON'T WORRY - IT DIDN'T HURT.
I was on a pretty high dose of chemo according to my Onc and she said that may happen. The good thing is that they eventually did grow back.
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Ducky Taxotere ruined my nails. Everyone of them lifted although only some feel off. One of my toenails I did have to get removed and that did hurt some. So are your nails as good as before?
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Ducky - I see you had rads and then nipple recon...what kind f recon? Did they graft from your groin or abdomen? Or did they just do a type of skate flap? My PS wants to graft since I had rads...he doesnt think he will be able to close a twisty type with my rads side. I've been nervous trying to decide what to do.
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Yay ang!
Cami I missed you! I like Lago idea of i remember I was there. LOL
Linda, chemo effects can last a while. I go next week for another magnesium test. I am 2 plus years PFC! I have had to get infusions every couple Months since then. Just a pain but I'm still taking 4 magnesium tablets every day. And if I take them every day and still need infusions it may be a while yet. If I'm good this time, it will be 4 months since I needed any. Then he'll try to cut down on the supplements. Last time I cut them I needed infusions for 3 months straight. So things get wonky but don't necessarily mean anything really bad.
Each and special, that's so hard when it's the kids. My sister had her ovary removed at 20 due to a cyst. She had 3 kids later too.
Rozem. You will make the right decision for you.
Much love to all
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Hi ladies! I have a question about when you started Tamoxifen. I finished my radiation Sept 11th and my onc. has not started it and doesn't seem in a hurry to. I feel like I want to start ASAP, being ER/PR +. Let me know how soon after treatment you started hormone therapy.....thanks!
Kathy
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I finished my rads on Sept 5. I just got a script on Thursday from my onc for Tamoxifan and will be picking up and starting today.
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I finished chemo in June. Started my Arimidex in August.
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@lago - My nails came back pretty thin at first, but have gotten better. They are now pretty much back to normal.
@geewhiz - My expanders were placed in during the mastectomy. After quite some time with those rock hard things in me, I had them swapped out for silicone implants with fat injections taken from my abdomen. Once the sutures from that were totally healed (I had an issue where one actually opened on the side I had radiation on) I had nipple reconstruction. You can youtube the procedure. basically they cut and twist the tissue to make it look like a nipple. Then, when that heals they tattoo it to look like a nipple. It's never like the real thing. The one that was radiated is still super tight and the fat injections could feel lumpy (which can be scary if you aren't expecting that).
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I posted about this on my chemo board too but wanted to share here with other triple positive ladies. I've had three infusions of TCHP and at a diagnostic ultrasound today, the tech and radiologist could not find either lesion AT ALL. NOTHING that they could see, and these were lesions that were around 13-14 mm back in August. The chemo plus Herceptin and Perjeta is working! Best day I've had in two months, I think.
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Hmmm... I didn't even think about nipple construction. I guess it's because I just did a right mx so I still have one on the left. For those that did nipple construction, did you do what Ducky described or a tattoo? Any pros or cons for what you did? Does the construction look like a real nipple? I'm considering getting my port removed a little early so I can have my reduction/lift on left side at the same time as my exchange. I'm not sure I want to do multiples surgeries.
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CassieCat, that is so cool! that is really terrific!
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Mommato3 I did what ducky did. They take local tissue and twist origami type thing. Then about 2 months later I had it tattooed.
CassieCat very cool!
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I had the twisty thing too, but after a number of years one went flat. When I swapped out the saline for silicone after nine years, I had that nipple redone and had the tattooing done again for both. The first time they used cosmetic tattoo ink, which doesn't last very long. The second time I made sure to get the real tattoo ink. So far so good.
Awesome news Cassie!
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Thanks Ducky and Bren - I am dreading going under anasthesia again...my PS thinks he needs to do more grafting so that the radiated side will "take" better and the nips stay. He does not feel that my skin can handle the twisty procedure, so wants to graft a thin flap from my abdomen...NOT HAPPY.
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geewhiz. You could also just get 3D tatoos. They look pretty good. More and more people are doing those but if you want to look check out Vinnie Meyers.
Cassia so happy for you.
Much love to all
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Hey ladies,
Does anyone have links to studies about HER2+ cancers recurring earlier? I've only read that on this board (recurrence more likely in first 2-3 years) but I'm curious about the source. I just passed my 2-year anniversary in September. And my daughter turns 2 in January - how cute is this girl?
Thanks for any help.
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Marlene, I don't have any info for you, but it is good to see you pop in and your daughter is adorable!
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Marlene18 in general fast growing cancers like HER2+ and triple negative tend to recur early… but also realize that most breast cancers that recur usually do it in the first 2-3 years not just the fast growing ones. I would ask your MO if s/he could direct you to the most recent studies. Also remember recurrence can be local or metastatic.
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Thanks lago, good way to think of it. I'd ask my MO but I don't like to see her more often than the prescribed follow-up schedule (every 6 months at this point)
Hi Bren58. I try to keep up with this board but not so good at posting. I hope you are doing well.
My only complaint lately is my hip pain, which I read is not uncommon on tamoxifen. It hurts quite a bit but I'm not sure if that's from carrying my daughter around on vacation last week. Now that I'm back to my cushy office job, I'll see if sitting on my butt all day helps alleviate the discomfort. :S
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Hi Marlene18! Welcome back. So great to see you are doing well.
Your daughter is soo beautiful ! And is that a soft coated Wheaten I spy on the chair?
My mo and I had the discussion about early recurrence a few times but he didn't cite sources. Think it's as Lago said . He told me that I'm near the end of the "acute " stage for early recurrence. Just passed 3 years from dx.
There is a lot of good news on the her2 pos front. In fact, pretty much all the progress in BC research is there:)
Your baby is just darling....
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CassieCat
Wonderful! Just wonderful! Great to read about your successful treatment:)
About as good as it gets on this trip
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Wish me luck tomorrow. I go for another magnesium stick. 3rd time a charm? Maybe I would t need an infusion. Well see. LOL. .
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Best of luck to you, Moon!
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Moon, I certainly do wish you luck and hope you do not need another infusion!
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Cassiecat such great news!!
Good luck Moon!! Hope you do not need an infusion.
Update on my liver enzyme journey. Still elevated after last test and still way too high and now my GI doc and MO are concerned so I am having an MRI. I am not sure when yet - insurance finally approved the procedure yesterday so I should get a schedule today. GI doc thinks it is possible that I have "sludge" in my bile duct. I am hoping it is something like that. I still think that it may be the preservative used in the herceptin infusion (as Pbrain suggested) but my center can't seem to figure out how to give it me without the preservative. It apparently arrives in a large cake form and then is mixed at the center and they have to add the preservative as the cake is multiple doses. I have offered the solution that they could schedule me first thing in the am and add the preservative after my dose but they can't seem to make that work either. If the MRI doesn't determine a cause for this then I think I will call Moffit and see if they can find a way to give me herceptin without a preservative. I think they may be busy enough with HER2+treatments that they could use a cake in a day and not need to add preservative.
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Good luck, Moon:)
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Good luck Moon .0 -
♣+♣+♣+♣= 3 four leaf clovers for moon
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moon - hoping for no infusion - you have had your share of them, that is for sure!
linda - good idea on the Moffitt possibility, then I could come see you too!
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Momma,
I too am on Tamox. I just turned 54. I was pre-menopausal when I was diagnosed last year. I had a partial hysterectomy at 26. My ovaries are still entact. I have to say, I still have a few hot flashes, but nothing like before. The only SE that I have experienced is some joint pain. Nothing that is unbearable. Mostly in my fingers. I have also had a few muscle cramps, mostly waking me up at night -- in the arches of my feet. (weird I know) My Onc said he would like me to stay on Tamox for 2 years than change over to Arimidex.
Good to catch up on the news and welcome all you newbies ! This is a fantasic forum.
G
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