TRIPLE POSITIVE GROUP
Comments
-
I had no choice. My tumor was too big for my small 34B breast. When they say LCIS in the other breast the double was recommended. I still think this is one study but needs to be repeated. I am still in the camp that one is not better than the other. Survival is the same.
0 -
I didn't have a choice either, but then again I also had MX plus rads, so I wouldn't have been included in the study any way.
0 -
Hi cgesq,
Thanks for the post re: your feelings re: taking Tamoxifen. Intellectually, I understand I would be an ABSOLUTE idiot not to at least try it because the cells they tested from my tumour were 1OO% positive for estrogen, progesterone and HER2 receptors. Yeah, I've stopped buying lottery tickets 'cause I don't think a lucky star is shining upon me (hee, hee!!). I will begin taking it on a memorable date, Valentine's Day. Hubby should like that.
0 -
Hi fluffqueen01,
Thanks for the info about the gal in Italy who opted not to try Tamoxifen but tried the vitamin/alternative options route. I guess we all consider that option, too, but as my RO said to me, "Ellizabeth, you are asking me if engaging in regular aerobic activity (reduces levels of estrogen) , consuming no dairy or alcohol (estrogen producing promoters) and taking a naturopathic pill that reduces estrogen levels will be as effective as taking Tamoxifen, and my reply is that no long-term studies have been done relating to this regimen, so while it MAY be effective, truthfully, there is not enough data for me to recommend it; however, there is a great deal of proof, data-wise, that a woman with your hormone-receptor status, esp., benefits HUGELY from taking Tamoxifen." I know, I know, I know, I have to take it, but reading about the horrible hot flashes you are having makes me anxious. How long have you been taking Tamoxifen? Again, my RO and MO have both said that it takes one's body about 6-12 weeks to adjust to the medication, and then life becomes bearable, if SEs are an issue at all.
0 -
Hi cgesq,
The tattooing is easy-breezy. I was envisioning some kind of large tattoo (eagle, lion--just kidding!!!), and it turns out that, for me at least, they were four, tiny dots that were made to look like freckles, at the technician stated to me, "In the event you may want to wear a bikini." After I nearly fell off the table laughing at him, I did congratulate him for saying the comment with a straight face. Don't worry, it was not painful.
0 -
Hope this link works......the benefits of radiation therapy.may be a factor in the new study.
http://www.nytimes.com/2011/10/20/health/research/20cancer.html0 -
Ashla - thank you for that link, it is working and backs up what my second opinion RO is telling me re: benefits of having radiation even though I was in a 'gray zone'
0 -
Websister..
That study came out days after my dx. Despite the hundreds of articles and studies I've read since then, this one struck a resonant chord. As I was considering and reconsidering the choice I always told my very patient BS that I would like to have some rads. He even laughed when I told him.
We shall see.0 -
Ashla - my MO referred me to RO feeling that it would be beneficial for me to have rads. The first RO was quite dismissive of the need and didn't seem to want to be bothered to discuss my pathology, didn't even seem familiar with. This second opinion RO said that due to recent studies she would radiate chest wall as well as regional lymph nodes and referred me to these two studies. It seems like it is pointing to decreased risk of recurrence both loco regionally as well as systemically, even with those who had chemo. The benefits seem to be increased over time.
http://jnci.oxfordjournals.org/content/97/2/116.long
http://oncolink.org/conferences/article.cfm?c=3&s=67&ss=348&id=2148
Thanks
0 -
Gratitude.....chemo threw me into menopause, but I was 55 and way overdue in my opinion. So, I don't know if it is that or the tamoxifen or a combination of both that causes the hot flashes. I have been on it since July 2011, and I still have them really bad.
Everyone responds differently though, so you may not. The lack of estrogen can have an effect on your love life. You might want to check out a couple other threads for that.
As much as I wanted vitamins or supplements to work, I was kind of in the camp with your doctor, and I was only 40%er, and 14% pr. Too chicken to rely on the supplements.
Chesq....I was talking about the nipple tattoos, not the radiation ones.0 -
Gratitude, re hotflashes with tamoxifen, they haven't been that bad for me. 2/12 will be one year that I've been taking it. I live with the flashes, and they make me feel reassured that tamoxifen is working, even though my MO says it doesn't work that way. In any case, the flashes haven't affected my quality of life.
0 -
Websister..
Thx....very, very interesting.0 -
Gratitude, I started taking tamoxifen 12/12. At first I was so shocked by my hot flashes I really thought there was no way I could do this for 5 years or possibly even 10 with the newest study....but last week was my 6 week mark and the hot flashes have lost their intensity. They are not gone but much more doable and I have taken to deep abdominal breathing to get through them.
0 -
Ok ladies I'm stressed! Found a small knot( swollen lymph node) in my groin. MO not worried. Said give it 6 weeks, if it is still there we will investigate further. I did just have a hysterectomy 6 weeks ago. Anyone have this problem???
0 -
The study on lumpectomy reinforced my feelings that the lumpectomy plus radiation was a good choice for me. We've heard over and over that those who chose mx were glad they chose that and they had no regrets, and I think that's great for them. But at the same time made me feel like maybe I didn't do enough. I'm very grateful for the study in that it makes me feel better about my decision to do lumpectomy plus radiation. I may have to face this decision again in the future, but if I do it makes me feel that it won't be because I didn't do enough the first time around.
0 -
Hello-I am curious if anybody has received just weekly Taxol with Herceptin with NO prior chemo treatment? Curious what to expect. Chemo starts next week 2/5 *gulp*
0 -
Macho-Mouse, yes, I had weekly Taxol and Herceptin with no prior chemo. For me it was pretty easy. I had no nausea, no taste issues, (almost) no fatigue, I never needed anything to boost my blood counts (my hemoglobin and red blood cells were lower than normal but not in a danger zone, and my white blood cells remained normal throughout). I did have either constipation or diarrhea throughout, so I was always taking something over the counter for one or the other.
I got the doctor to reduce the amount of steroid in my pre-meds, and after that I was able to sleep better. I did develop some mild neuropathy in my feet, but took vitamin B6 and L-Glutamine (OK'd by doc) to counteract and it never got bad. I craved carbs - and ate them - and gained about 12 pounds, which are not magically going away now that I'm finished with chemo. Something noone ever mentioned to me - the steroid causes your face to flush the day after chemo. I was all worried I had a fever or something - don't know why noone ever mentioned that to me. I looked very healthy that day each week! I worked throughout, just taking off the day of chemo and arriving late to work some days when I couldn't leave the bathroom... I did cold caps to save my hair, but I think some getting weekly Taxol don't lose their hair but just have some thinning. I'll be interested to hear your experience with that. You will do fine!0 -
Very good news....new comprehensive programs in hospitals for cancer rehab...
http://online.wsj.com/article/SB10001424127887324039504578263914081204892.html0 -
PatinMN-Thanks for sharing! I read up on the cold caps but they're so expensive! I hear not some ppl do not lose their hair when just receiving taxol but I am preparing anyways. Did you take supplements other than the B6 and l-glutamine? I took. Couple weeks off work to see how i react but it's good to know it's possible to manage
I am having my eggs extracted and frozen. My insurance covered this shockingly. I am 33 years old and have no kids... thought I'd play it safe 0 -
LeeA,
I am curious now about the calorie restriction and Herceptin.
I have to tell you. The worst cardiac event I ever had was after taking Herceptin on a day I was also fasting. It just happened to fall on the same day...I fasted all day...did Herceptin that morning....that night my heart really struggled and at my next MUGA had dropped significantly...and of course, I had to stop tx. My heart has not recovered.
I'm not saying it was the last Herceptin and fasting. But it COULD have been the straw. My Onc was really angry when I told him...Oh yeah I was fasting that day.
He told me fasting during tx is stupid. Well he couched it in very nice terms, but basically told me I was being a bonehead. lol
I'll always wonder if I pushed my body to hard by not giving it the energy it required to repair the damage Herceptin was doing to my heart. Until therte are definitive studies on it....I am not recommending it!
0 -
Congrats Fluff!!
0 -
I am so far behind on this board! Lago, I tried to PM you and I keep getting "can't find page..." I'll try again and thanks for checking on me. Technology is making me nuts!
So since I am not caught up, why don't I just start a nonsequitor--anyone have any good remedies for hemorrhoids? I'm dying over here! I am trying to increase fiber, but I definitely don't need a stool softener.
2/3rds of the way through chemo. Just one more month! My neuropathy is making me a little nervous, but my MO knows about it so maybe he'll decrease my dose of taxol these last 4 treatments.
Sorry for just butting in with more questions about poop. ;-)
0 -
TonLee,
My Onc said to get plenty of calories in me during treatment and said most people loose weight during treatments. I've been trying to eat things with a lot of protein and less sugar, but for some reason I'm craving sweets. I never crave sweets.0 -
Hi again. I was on a few weeks ago complaining about my drain never coming out
and you ladies were all so welcoming and helpful. The update is the drain is coming out Thursday even though it's still draining. Apparently this lymph leak may be with me for a long time. My BS is going to see me weekly if necessary to drain any seromas by needle. Chemo is starting Friday. Have any of you had that experience? After being ready to yank it out myself, I have completely swung the other way after being educated on the consequences of pulling it "early". Friday is 8 weeks to the day from my surgery.I also have a possibly stupid question after following along this thread sporadically. Tattoos? I'm so far from reconstruction that maybe that will make sense later on, but why/where are tattoos necessary?
0 -
TonLee,
For some reason I got the impression that the remark about calorie restrictions was in general, i.e. not during chemotherapy. I think he might have been talking about the behavior of Her2 positive cancer cells and how they react to reduced calorie restrictions, i.e. eating a high calorie diet versus a more restricted diet. There was also some discussion of Metformin and how it affects the Her2 pathways (or whatever they're called).
I also need to respond to you re: the ALND versus RADS thing. Thanks for your post a few days ago. I was a few days post treatment 2 and kind of all over the place physically/mentally when I read your reply.
Anyway, I'm being very Scarlett-ish about the node thing right now (i.e. I'll think about it tomorrow, next week, next month). Part of me just wants to say (scream) "isn't chemo and removing both breasts off my chest ENOUGH?" but there is the issue of that pesky little micromet. I'm so glad it shrunk (in evaluation!) by the time the slides/whatever got to the Disney Center but it was there nonetheless.
I also need to ask my MO about PET scans and how good they are (if at all) at revealing lit up nodes. I know that SpecialK had a 2 mm (I hope I'm remembering that size correctly) further out from the sentinel node so that haunts me.
And another I haven't mentioned is a segment on a local news program that actually featured my breast surgeon as the go-to-guy expert. I saw it last summer before I was diagnosed but during my research on surgeons.
It was a segment about radiation creating what they referred to as "super cells." My BS disputed it - saying that what happens in a Petrie dish is different than what happens in the body but being OCD, stuff like that gets stuck in a little loop in my brain...
OTOH, I'm pretty sure cypher's mom is a many year survivor of BC and IIRC, she had a mastectomy and rads...
There are no easy answers.
And for the zillionth time, like that one blogger said so well: BC = the end of careless living...
0 -
DiZZyMom - I'm so glad to hear you're going to lose that drain in a few days!
Tattoos refers to nipple tattoos. There's one tattoo artist in particular who does amazing work with nipple tattoos, i.e. tattooed nipples that almost look 3D-like. I think Fluffqueen mentioned his name. He has now changed his business around to do nipple tattoos only and IIRC, splits his time between the Baltimore, MD area and New Orleans.
If you had a nipple-sparing mastectomy this probably won't be an issue for you.
ETA: Unless you have a yen for a third nipple - and I say this because I recently saw an image of such a set-up.
0 -
hi dizzy. I had a seroma 3 months after my lumpectomy and wound up having a tube put back in for a week. also had infection in the area and now some lymph nodes in the area are slightly enlarged. hopefully because of that. reason I'm babbling on is because I always say I would rather go into the city weekly to get it drained than have another tube put in! good luck to you
Karen0 -
Pbrain, great to see you, in the virtual sense.
I buy Preparation-H wipes at Costco. They come in a 3-pack. I developed one of those H-thingies when I was pregnant years ago and then (I think) it sort of went into hiding.
Back in 2007 I tried to pick up my father when he fell out of bed and it came back to haunt me again.
My husband likes the Preparation-H wipes as well (oh, the TMI...it burns!). I think they have Witch Hazel in them or some such soothing thing.
Fun, fun, fun!
Glad to hear you're 2/3 of the way through! I think of you often and always chuckle to myself about what your MO said about bringing an army to kill a couple of muskrats.
It's funny (weird) how often I think about that muskrat remark.Editing to add: Oh look, here's a little picture (of the wipes, not a muskrat)
0 -
Thank you Karen!
I did not have nipple saving surgery, they lopped it all off! I'll just jump off that bridge when I get there. Thanks again.
0 -
Pbrain stools softener is key. First time I was so constipated and finally figured out what worked. I got also hemorrhoids. Best thing is to sit in a warm zits bath several times a day.
I found Metamucil worked the best for me. It's both a stool softener and promotes wanting to go. You must drink lots of water but you should be doing that anyway. I also took (and still do) NutraFlora daily (prebiotic enhancer). I was eating lots of fiber, salad, chili with lots of beans but if you're not going then you can get very bloated. At least that's what happened to me. So be sure to use some kind of stools soften. I believe the NutraFlora aids in that too. I started the Metamucil the night of chemo and continued till things started moving at the right pace again. Milk of Magnesia didn't work for me but it might for you.
Rhonda2 Most people do lose weight with chemo but not breast cancer. Many of tend to gain but that's because of fluid retention, we might be less active, we tend to crave more carbs. Don't diet. Just eat healthy. Most of my weight gain was from fluid. My onc even told me I would gain 4-8lbs. I know some women that gained up to 25 but that was because of all three factors I mentioned.
0
