TRIPLE POSITIVE GROUP
Comments
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Wow! I haven't been on here for months. I see the Herceptin discussion is up again. I'm with TonLee, I think the shorter infusion times caused my heart problems and thus unable to continue all treatments - I made it through 10. Slower has to be better.
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Except for the loading dose, my Herceptin has always been 30 minutes with no ill effects that I notice. Just had another infusion today. Only 4 more to go! Thankfully, my Muga scans have always been good - in the 60s. I agree with others though, if you're experiencing SE's that you think are due to the quicker infusion, definitely tell them to slow things down. It seems like the patient should be the one in charge of that decision.
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Just finished number 4 of TCHP. Gout good news from follow up echo. Heart is good no
Changes and ejection fraction still at 71. They were talking about raising my dose (I was down to 80% of full dose but my blood counts are trending down. Not bad but myhemoglobin and hematocrit are just below normal as are potassium, calcium, phosphorus and total protein. To be cautious they lowered the carboplatin again as those are a sign of kidney changes. Iamhoping this will make for less se's. I did have a scary experience. They increased my iv benedryl due to a skin rash that has shown up. The extra benedryl caused me to have several petite mal seizures. The nurse said next time they will use oral benedryl at a normal dose.
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My ejection fraction was 59% before I started anything. They told me anything over 55% was normal. I have to schedule my first echo since starting Chemo for August. My Herceptin with the Taxol has been 30 minutes. Are you ladies talking about always having Herceptin be 90 minutes - or just the doses that are every three weeks? my nurse told me that sometimes they give the Herceptin only doses weekly, bi-weekly, or every three weeks. Anyone know why you might chose a regimen that is anything other than every three weeks?
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RobinLK You can always ask if you can have your ovaries suppressed with meds and try one of the ESD's (Tamoxifen is an EBD…estrogen blocking drug). Granted you might suffer from hot flashes. I switched from Anastrozole to Exemestane. I find on the Exemestane I didn't have the same weight issues. Granted I've but on some but that because of another med I'm taking. But my weight isn't a problem even with the extra pounds.
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Quick question: has anyone here had a UMX and then started considering another UMX on the healthy side? I know the risk of developing a second cancer is low (this depends on the genetic test that I'm petitioning my insurance company to approve), but I have 1) a thing with symmetry, and 2) a thing with cancer anxiety. Any thoughts?
My medical team is opposed to this idea, so I thought I'd throw it out there to the HER2 experts.
BTW: update . . . I'm doing adjuvant TCHP, beginning 8/13. Thanks to all who recommended that I ask about Perjeta; my MO is on board 100%.
-kate
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Kate,
I desperately wanted that back in 1990, just for safety's sake as I was TN back then. But back in 90 that just was not done, no how no way plus I was in my 30's and they thought I was crazy wanting that. The idea of a preventative anything forget about it. I felt I was walking around with a time bomb on my chest for 25 years. The second time last year I was TP so go figure, stuff changed. I didn't test positive for any of the mutations either for BC or OC yet I've still had breast cancer twice. If this were my first time I'd be demanding they do the other one
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Kate, I was undecided for awhile and sought the advice of my medical team. Here's the responses I got:
MO (male): "Why would you remove a healthy breast? What does your husband think of this?" lol, still makes me laugh.
PS (male): kind of neutral, just said the obvious that a uni would reduce the surgery time and the risks. (I was having immediate diep recon).
BS (female): held up 2 fingers and whispered "Do both". I asked why, did she think I had a good chance of getting cancer in the healthy breast. She replied, "No, but you're going to like the way they look much better, the symmetry. "
I took the woman's advice and did both and I'm very happy that I did, however, my story almost didn't have a happy ending. Surgery was an extra 4 hours (13 hours total) because PS had trouble getting blood flow to the flap that replaced my healthy breast. For the first week it was unclear if that flap was going to survive. So there is a risk that you could remove the healthy breast then have an unsuccesful recon and end up with no breast or face more surgery.
The decisions are the hardest part.Good luck to you!
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http://www.ncbi.nlm.nih.gov/pmc/articles/PMC279923...
Has anyone ever seen this article does is mean we have better chances than her2 neg
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Stephmoen, both my BS and my MO gave me the thumbs-up and said, in essence, that HER2 used to be a death sentence, but now it's one of the best kinds of BC to have. I take that with me.
-kate
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ohh its metastatic but still it's a plus for trip positive I guess
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Yes, it's still a plus, because of Herceptin and Perjeta, which are both prolonging life and increasing quality of life in many, many metastatic BC ladies. I have a friend who has been on Herceptin for about five years--she doesn't much care for the infusions (which never end with metastatic disease), but she feels pretty good most days, and that's something.
-kate
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I'm a UMX and I really wish I had pushed to have the other breast removed. I tentatively brought it up a couple of times but was told that it wasn't necessary, so no. I wasn't completely sold on the idea then, so I didn't pursue it. Now I wish I had. I guess hindsight is always 20/20 lol.
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Kate,
I had a uni, still have my left breast with recon on right side.
Pros:
Sensation! Still an erogenous zone. I still have a real breast.
Cons:
Any weight fluctuation means the real breast shrinks or plumps with weight, while reconstruction stays the same. (I've never had more than about 1/2 cup difference, so not a big deal, but it could be if I gained a bunch of weight.)
The recon side looks perky and eventually the left side will droop. Sometimes I think my natural side looks at the new perk girl rolls it's eyes and sighs, "I'm tiiiiiiiired." hahahaha. A sports bra keeps the field level
I tend to believe breast cancer cells prefer the breast. Yeah it's not exactly scientific! Just a gut thing about my cancer. I'd like to give it a place to grow where I can actually feel and find it. (Irrational? Probably.) Who says we have to be rational all the time?
Rational is often overrated.
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KateB79 I always wanted a bilateral but my BS initially said there wasn't a need to remove healthy tissue but would support what ever I wanted to do. Then there were 3 suspicious areas that showed up on the MRI. Said they would need to be biopsied every year. One he was concerned about. Didn't even biopsy. Just did both. 2 were cysts and the other was LCIS. I made the right decision for me. LCIS increases your risk of breast cancer in both breasts. I had dense breast tissue too. Dense tissue is a great environment for breast cancer to grow so once it starts
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that's grest to know Kate although I don't like to think about it I know the reality is I could become metastatic doing all I can to prevent that..good to know it's not an immediate death sentence hoping to have many many years with my 1 and 5 year old
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Ton Lee,
I don't know how much validity there is to leaving the healthy breast so stray cancer cells have somewhere to call home, but I had the exact same thought and for weeks thought I would do a uni.
In the end, vanity got the better of me cause I have to admit, my healthy breast was saggy and not too pretty. I found that after menopause I lost a lot of sensation in my nipples. Don't know if that's normal. The healthy breast wasn't useful to me, so I didn't mind seeing it go. Had my healthy breast been "prettier", I would have had a harder time losing it.
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Kate, I also had a UMX. My biggest reason for wanting to keep my breast was for sensation. My risk of developing BC in the other side is pretty low. I decided to go smaller so I had a reduction/lift on the left. My breast aren't completely even but they weren't in the first place. I also had the same thoughts as TonLee when I was first diagnosed. I wanted to give it another place to come back. My MO and nurse navigator thought I was crazy when I suggested it. BTW, my genetic testing came back negative
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My BS had suggested ovarian suppression with an AI before the trials were concluded. MO said no. I think he is leaning toward removal as I have no way of knowing if I stop cycling unless I get scans done. My PET and US showed evidence of cycling. There was concern about an area in one of my ovaries. It was polycystic, no surprise, my tubes were polycystic and removed during my hyst in '99.
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RobinLK,
I wonder if/when MO will recommend an oomph. I'm doing ovarian suppression and an AI, but will I really have to get a shot, every month, for 10 years? Ugh.
TonLee and Mommato3:
One reason I opted for a lumpectomy is 1) for sensation, and 2) because I'll get more monitoring. I know lots of women who've said that they chose a BMX to avoid the scanxiety of mammograms. But, I don't mind the mammos if it means that experienced health care people are checking me out more frequently for recurrence.
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I'm post menopausal, so no one is suggesting removing the ovaries, but I wish they would. I'd love to remove all unnecessary parts, lol.
Years ago I had the uterus removed, but kept the ovaries, thought they would do me good. Now a very estrogen+ bc. Thanks ovaries
There was a woman in her 70's at my chemo center with ovarian cancer. Like, me, she had the uterus out pre-meno. Yikes. Would happily get them out!
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I had a bilateral mastectomy and my BS tried to talk me in to keeping the healthy breast. I am a nurse and have seen too many patients who have had recurrences in there "healthy" breast years after their uni mastectomy, I new what my decision would be if I ever had breast cancer and low and behold it happened to me!!! Never was given an option for lumpectomy unfortunately bc a lumpectomy would have been much easier! According to the ultrasound it looked like the cancer had spread thru my right breast although the pet scan showed only 2 tumors and 2 lymph nodes. Anyway, I am happy with my decision even though it has been a LONG process, I feel I was as aggressive as I could be and mentally that's what gives me peace of mind. I am having a hysterectomy on Sept. 8th, I'm not thrilled about it and how it will affect my sex life but it's better than getting cancer again!!
Kathy
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good morning all. Herceptin went well yesterday. The nurse told me use Ocean nasal spray for my nose and so far I have had a small amount of blood on one side. Got my labs yesterday and they took a nose dive from last week! WBC was half of last week red cell down hematocrit and hemoglobin down and platelets down. I was surprised cause I was expecting if it was going to drop it would have done so 7-10 days out not 14. Is the normal?.
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In defense of Tonlee's theory. I read an article a few years ago that there was a theory that breast cancer recurred in distant places because those cells that got away were looking to "go home" IE the same locations they came from. Since it was removed with surgery they end up metastasizing in other organs.
Not that I agree but it's a theory.
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It's my understanding that if you get BC in your other breast years down the road that it's a new occurrence not a recurrence. I would have preferred a LX too but it wasn't recommended because I had a second tiny spot right behind the primary. And I still would have lost my nipple due to the location.
Elaine, my MO said there is a limit to the number of years you can do OS. I didn't ask what that number was because I'm scheduled for an ooph in September.
Robin, couldn't your MO check your hormone levels to see if you stay in menopause with OS. My MO said she's never had a patient not respond to OS.
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that's one thing I wanted to speak with my surgeon about is there any studies showing that mastectomy causes more metastic cancers a lot to think about!
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Steph,
Haven't heard that but I do know that both times I had cancer both rumors were very small 1 cm the first time 7mm the last time. I could have had a LX both times but when they looked at the breasts in both cases there were more things that were brewing and I 'd have been back in a couple of years dealing with the whole thing all over again. I'm glad I did an Mx because I wouldn't want to be having chemo etc every three years. 25 yrs between diagnoses was bad enough
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Two weeks out from my first TCH and the hair decided it needed to leave. Started falling out on Wednesday and by Thursday handfuls. Shaved it off Thursday evening. It was not as hard as I thought it would be and fortunately I have a nice looking head. 😀 I bought a cute wig awhile back but I think I'm just going to go all natural. So one more step in my journey checked off. Next up dose number two next Thursday. I had a uni in June. I told them to take them both but due to a blood clot issue I have they only took one for now and I have the option to go back after chemo is done and take the other one. I could have had a Lx but just wanted them to take it all. As of now i have chose to not do reconstruction ever. I am very small chested and it is not that important to me right now. No regrets.
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That's a good way if thinking of it mmay, a nasty checklist of things we just have to get through. So you've checked off a biggee "lost hair", and your still ok. Yay!
I wore my wig only once, too uncomfortable. I preferred hats, scarfs or the little terry cloth turbins at home.
Good luck with round two!
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Hello all! Thank goodness for this site. I'm piping up to share, but am still really new to all this. Was dx'd triple +, stage 3c, at age 44 with scant family history of BC. (Gene test is being processed due to Jewish background, may have that defective gene. My boobs are time bombs 'cause of that)
Tumor in breast too large for surgery, so their shrinking it first with chemo. Cancer part, just over 2cm, is surrounded by over 5cm of disorganized scar-like internal tissue attached to skin & nipple. Just finished first administration of herceptin, perjeta, carboplatin, & taxotere. Gee whiz, what a cocktail!
I'm learning ALOT from this site & will share as things progress. What really helps is keeping a positive attitude. Not easy, but worth it:-)
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