TRIPLE POSITIVE GROUP
Comments
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leeA i dispise these TE's -i finally got 2 fills, as uncomfortable as not having them so i figure i might as well barrel through this process. I am just afraid that the tightness will still be there after exchange. I want to be one of those ppl who feel immediate relief at exchange but i doubt it! i envy those who breezed through this process
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SpecialK: "Some days I am in control of "it", other days "it" controls me!"
Yes!!!
For me, one of the worst times is before I fall asleep. I have to keep my mind "busy" until sleep hits but then again, I've always been like that - it's just worse now that the Big C has taken up residence in my life.
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rozem, I don't blame you...if you're going to have discomfort you might as well have some gain along with it and from what I've read, some women do feel a big relief when the new ones go in so hopefully you WILL be in that group!
I do feel discomfort but I don't think it's anything compared to what you've experienced. I just don't feel normal anymore so I guess this is that new normal cr@p.
Right now, I'm lopsided. I was filled on both sides the week before the infection hit but when righty came out (and was replaced) I don't think he added any fluid.
Now, I'm at the point that I don't even care. I just want to get past this infection and get past having an IV line hanging from my arm 24/7 - although we have kind of graduated to the point where we can hook it up, flush it and re-hook it back up on our own (meaning, hubby and myself - or more accurately, hubby as he handles setting it all up - the IV pump, flush, etc.).
I think tomorrow might be Herceptin #1. I'm nervous about that but this, too, shall pass.
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Cami, eesh, your family has really been through the wringer.
Kayb, I feel the same way (though I’m not as far along as you). I have made some positive life changes and come to some important realizations as a result of this diagnosis, but I am always trying to learn, so naturally I learn things from awful experiences. I also learn things from good experiences! I usually want to smack those people as well. I also kind of think – wow your life must have been really f-ed up beforehand! Of course I may keep reading and having to eat my words….
SpecialK, congrats on the clear on the PET scan! Also agree – I’m sure we’ve all learned a lot of things from this and some of those things are good things to have learned.
Rozem, you’re reminding me of how when I was first diagnosed I ran around saying that it was like being a member of a club that no one wants to be a member of. You know, how they keep sending you stuff and your medical center calls you proactively to set up appointments for you. The brochures!
I think the whole conversation came up because I was in a really angry state that day. Because – well for obvious reasons!!!
TonLee, NO. You are totally jumping to conclusions here. You used to know your body but now everything is different b/c of the cancer and all the treatments. And please don’t tell yourself that a recurrence is inevitable – it is far from inevitable! But you should still get it checked out and report back.
Pbrain, you are hilarious!
LeeA, good luck tomorrow.
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Thanks ladies
I know it appears as if I "went there" but you know what? I never left there. But I shouldn't have posted my thoughts. A BC faux paus if you will.
Most days, no big deal I give it the finger. lol But a week into the weirdest/worst pain I've ever felt in my back and well....cloudy judgment. I'm going to give it one more week. Then I'll make the dreaded appt. And they'll pat me on the head and give me an x-ray. I won't get more unless I can't walk and have to be taken in by ambulance (past experience proves this).
Anyway, I love my Kia. And I plan to suck the life out of every day I have left!
So thanks for the words of encouragement. That's probably the thing I miss most about having close female friends. Encouragement! I tend to have male friends because I don't have a lot of patience for the subtle games women play. (Not all do, I know!)
My male friends, when we talk about it at all say, "well T. I know it's not curable. But if anyone is gonna beat this, it is you."
Which is exactly what most of the women with BC in my life (groups) have mentioned people have said to them. Guess it's a standard thing
Oh well.
Today is a new day. I will REJOICE and BE GLAD IN IT!
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Why am I so dang thirsty? I dreamt of water all night last night and headed directly to the fridge this morning for OJ. I feel like I could drink and drink and drink and still be thirsty. I don't have any other symptoms of diabetes, and pre-chemo my HbA1c was 5.3...I'm just so thirsty!!!
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Amen to that, TonlLee! Hugs and prayers to you.
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tonlee/cypher thats what we are here for! vent when you need to vent. its a rollercoaster of a ride and some days you are just on the bottom and thats ok
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tonlee - I have acquaintances, but my true friends I can count on one hand for the very reason you mention. Interestingly, my DD is the same - lots of male friends, because she can't deal with the petty crap from girls her age (early 20's) so she hangs out with the boys. Of course, she drives a truck, is serious about fishing, and can out-shoot her BF at the range, so she is pretty much a boy in a girl suit!
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SpecialK - awesome news about your scan...congrats!
Tonlee - take it from a stage IV girl, I know just what's going through your head but chances are that it's something else. I plan on being here a longggggg time and I am positive you will be enjoying your new house and whatever new car comes AFTER the Kia!
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SpecialK - congrats on the clear scan!!!
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TonLee, you should certainly feel free to voice your concerns here! I know that fear never quite leaves but sometimes. My two cents is that it’s better to go in earlier than latter. I’m sure there are other things it could be and they might want to do other things to rule out those things before they give you scans. Is this responsive at all to pain meds?
On another note – I need to get back to work and can’t read the rest for now, but I am having consistently high phosphorus levels. I’m around 5.1. Pre chemo I was about 3.3. I have been exercising a lot but I was exercising a lot before I started chemo as well. I have stopped taking vitamin D. MO seems concerned. Apparently my kidney functioning is ok. Do we have other ideas for me besides bone mets? I’m having some joint/muscle pain and that weird abdominal thing but it’s hardly severe…. Aaaaiiee!!!
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Cypher, couple of thoughts--most of the time, high phosphorus levels are indicative of kidney issues. Have you seen your blood tests for your renal function? Phosphorus can be high if you are breaking down red blood cells too. Has your MO told you what your hemoglobin/hematocrit is? Also you'll see it increased with muscle breakdown.
A couple of odd ball questions--Do you drink a lot of soda? (I actually started drinking diet pepsi again after starting chemo because it tasted so good--it has always been a vice of mine and I gave it up a few years ago, but heck, all bets are off now). Are you using a sodium phosphate containing laxative? Both will increase your circulating phosphorus levels.
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Ton Lee -
How is the DHEA working for you?
I saved the links for the DHEA stuff you posted, but still confused how you got it. Did you purchase it from Vaginorm? I know you said you had to have your doc fill out a form and send it to a company - how do I get my hands on that form?
I also saw in one of the links you provided that you can just buy DHEA OTC (I see GNC sells it), and then have your onc write a script for a compounding pharmacy to make it into a vaginal cream. Did you explore that route? Would that be easier/cheaper or more difficult?
I saw my gynecologist yesterday. She feels my urinary urgency, pain, and itchiness is all due to very low estrogen. (Ruled out UTI, tested me for yeast infection, but doesn't think it looked like that.) Since I am thin with low body fat, she said it is likely when I am on Tamoxifen my estrogen levels are extremely low, like that of a 70 year old. (I would imagine the same case for you, for sure, esp. since you had the ooph!) She recommended Estrace cream, but ONLY using a tiny amount, and ONLY if my onc approves. (I see my onc tomorrow.) She said she likes the cream for those who have urinary symptoms b/c it can be applied externally exactly where you need it. She didn't think I needed to administer the full dose via the plunger thing, just use the smallest amount needed externally to ease my symptoms. I didn't think to ask her about the DHEA (remembered about it today when you mentioned it in the heart thread!). I will ask my onc about both the Estrace and DHEA tomorrow.
Thanks so much for sharing this info! I really want to stay on Tamoxifen if I can, but these urinary symptoms are really not liveable. Who wants to have pain every time they go to the bathroom? Ugggh.
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Pbrain, I think he did the blood tests. I saw him yesterday and he said my kidneys were working ok. I also had a urinalysis and that came out normal. It included bilirubin and leukocyte esterase, whatever those are. All negative. I was drinking a ton of club soda – like perrier but the TJ’s version – through much of chemo b/c water tasted funky often, but have stopped that. No laxatives. I have been exercising a lot and trying to rebuild muscle tone, but don’t know if that’s enough to present these results. I will have to save the blood tests and email them to you later. Thank you!
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Dance,
You can talk to your Onc. I am not sure if any pharmacy will do it, even a compounding one. Which is why I order mine from ND.
Ok TMI ALERT~
Yes, the DHEA cream has helped. This is how. First, it's not as "dry" down there but still need lube during sex. Not as much though and the pain is about 1000% reduced. There is still some pain if things get a little well, robust, but not much and it goes away.
Second, maybe it's just me but things below the belt don't feel as, er, dead. It took A LOT for arousal, and I never once since the Ooph had the urge to come home and rip my husband's clothes off. It's not even close to being that way now, but the desire is building up a little more. I attribute it to a healthier tissue kind of thing.
Gah, you know how hard it is to talk about this stuff with euphemisms? lol I'm usually more direct. (Makes my OBGYN blush.)
Ok. All that to say....ask your onc if you can get it at a compounding pharmacy. I'm thinking, no. Mostly because DHEA is not FDA approved for vaginal use. This one ND pharmacy has approval as the supply point for the trial.
If you need the info on the pharmacy in ND I have it. Actually I posted pics a million pages back and the addy is on that...I think if you search my name and DHEA it will come up.
My Onc says no estrogen, period....and I tend to agree...mostly because for me, I took the pill for 20 years and I think it really contributed to my BC. One of the things anyway.
Hope that helps. If you are able to get it and try it...it takes a good 6 weeks before you notice change DOWN there....lol. I was thinking it should work asap, so literally jumped into a situation too fast...there was pain and blood, lots of blood...
TMI OVER~
EDITED:
Hey Dance.
Here I talk about it and link the trials.
http://community.breastcancer.org/forum/80/topic/764183?page=375#post_3266194
This is the link to the pictures
http://community.breastcancer.org/topic_post?forum_id=80&id=764183&page=381
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Thanks so much TonLee. I called the pharmacy (saw the address and looked it up online) and talked to them. They said as you said, that it is prescription only right now, but this is interesting - they are working on trying to get it to be OTC. Cool, eh?
She advised I have my onc call them for details on dosing, etc. Once he figures out the dose I need, he will just fax a script. They will call me to tell me how much it will cost (varies depending on dosing) - usually not covered by insurance.
They were so nice and helpful when I called. Thanks so much for pioneering this! The info I read on it sounded very encouraging. Will see what my onc has to say. Not sure if he'll go for something this new or not - will see what he thinks.
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And TonLee - so glad it is working for you! Yay!!! I'm hoping it help with urinary sx related to depleted estrogen, too...I so far am successfully managing the vaginal dryness with lubricants - luckily no pain except for the first few times or if we wait too long in between "activity". So maybe I won't need much of this stuff at all if I just apply it externally.
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Dance....
My friends gyn told her to" go shopping". She said to " shop" at least twice a week or you lose It. Shopping.....you have to go shopping more often... Shop till you drop if you will...0 -
Hi All,
I have lots of questions and this is the right place to get some answers. Did anyone who had a mastectomy have reconstruction done immediately following the mastectomy? What is this surgery called. Do all reconstructive surgeries require insertion of TE's? Did anyone have a mastectomy done after having a lumpectomy done first? I am in the second leg of chemo, finished with A/C, now underway with taxol/herceptin. I had a lumpectomy, so following chemo will have to have rads. I am thinking about having a mastectomy done, for one thing no radiation, for another it would be putting it behing me if the breast was removed. My left breast is healthy. Any feedback is so welcome.
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Ashla, thanks, I've heard that, and yep, we aim to shop once a week.
Twice a week would be too much for us! My gyn said once or twice a week. 0 -
Waitingforthenextstep....
Not all reconstructions need TE's. It's called direct to implant...possibly nipple sparing....reconstruction after mastectomy. I just attended a forum with one of the pioneers in the procedure two weeks ago. This is pretty much the only reconstruction he does these days. He is in the NY area. If you are a candidate, it is an incredible procedure with great results.
His patients return to full range of motion in 3 weeks.0 -
Waitingforthnextstep - I had this procedure done. I also had a Lattisimus Dorsi flap done at the same time. The surgeon actually took the muscle through the mastectomy opening and did not require separate incisions on my back. I am very happy with the results and I did get 100% of my range in motion back very quickly.
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Hi all, not sure if you have seen it, but I saw a research article this morning stating that they have found that Effexor may inhibit the effectiveness of Tamoxifen. Here is the link for the article Effexor May Not Mix with Tamoxifen: http://www.medpagetoday.com/MeetingCoverage/SABCS/36392
I know I've seen a lot of women on here who are taking Effexor to reduce hot flashes...
regards Jenn
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waiting i had a lump/rads then a bmsx. Keep in mind that if you do rads now it may affect your reconstruction options later if you change your mind and do the msx. Implant failure rate is higher on radiated skin. Yes you can do immediate reconstruction. If you don't go the implant route (with expanders or direct to implant as ashla mentioned) you could also do DIEP/SGAP/PAP which all require taking tissue from other parts of your body to build your breasts. Your PS will tell you if you are a candidate. Avoiding radiation is a very sound reason to want to do the msx but speak to your RO about what your risks are with radiation therapy as this may help you make your final decision
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pbrain - I was thirsty all the time, still am, I drink 8-10 16 oz glasses of water a day. You said you started drinking diet Pepsi again, it has caffeine and is a diuretic, could be making you more thirsty, also are you eating more salt?
Jenn - Thanks for the article on tamox & effexor, wonder if it's the same with AI's?
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Jenn - thanks for that article - important to know!
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Thanks Linda, I'm so seriously thirsty it worries me. But I also have the bloody hercetpin nose and dry mouth so I know it is just part of the chemo. I am so in love with water these days!
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Jenn, thanks. I'm taking it to my oncologist at yoga class next week.
Special K, congrats! My onc doesn't like to run scans without symptoms, so after I won my pet scan battle in September, he said I have to wait two years before talking to him about it again.
Tonlee...right there with you, sister. Moving forward is really hard. I constantly think...is this the last time that I will.....my SIL died of the same brain cancer that Ted Kennedy had a couple years ago. Did not make it to her sons wedding or her daughters last year. I was kind of a stand in. I don't want that. And I am not good knowing that there could be something going on that I don't know about. Guess that is why I am not keen on surprise parties. I have given my husband notes on the type of woman he could remarry. Told him the kids must approve, and I will haunt him if it is a stupid wishy washy woman. I have planned out my funeral wishes (although I did that during my paranoid time when first diagnosed).
I have some of the Braggs vinegar. I will start swigging it tomorrow . Bout it for something healthy but never started, lol.
Waiting, you have several options for reconstruction, immediate or not. If you want me to send you the list of questions that I used to interview my PS options, just PM me.
On a happier note...it's my birthday! Twelve/twelve/twelve. So cool! AND...two years and one week ago, I had my first of three biopsies trying to find the cancer. If I had stopped with that surgeon, who told me the biopsy showed only LCIS tissue, to meet with an oncologist and get a prescription for tamoxifen, I might be dead today. It was only through the perseverance of my closest friend, the nurse practitioner, who dragged me to breast specialists, that it was identified after two more biopsies, and turned out to be agressive.
On speaking, I would not be a poster child for the ACS or Komen either. The only thing I could possibly talk about is that looking back, my fears were greater than my reality, my friends were more loyal than I anticipated, I could still laugh, and I can still be an active contributor to the world. I have a friend who said she felt after her BC, the positives outweighed the negatives. I totally don't agree.
Had some other things to say, but they related to things a couple pages back and I cant remember. Lol
Oh! On the pertujumab...there is a stage IV lady on my 2011 chemo thread that is getting that now. She has been through it all, included a new treatment that removed half her liver. She gets it with chemo, at least for a while. It has made a big difference in her mets.0 -
Found this on the San Antonio symposium
Drug Combo Extends Breast Cancer Patients' Survival.
Reuters (12/9, Koltrowitz, Copley) reported that Roche announced that a combination of its Perjeta (pertuzumab), Herceptin (trastuzumab) and docetaxel chemotherapy significantly extended the lives of women with previously untreated HER2-positive metastatic breast cancer. The Basel, Switzerland-based pharmaceutical company also presented the updated Phase III clinical trial data on Saturday at the San Antonio Breast Cancer Symposium. Overall, Roche said the Perjeta combination reduced the risk of death by 34 percent compared to the treatment arm that received Herceptin, chemotherapy and a placebo.
Breast Cancer Drug Shows No Advantage Over Capecitabine During Trial.
Trastuzumab May Provide Survival Advantage In HER2-Positive Breast Cancer.
Medscape (12/8, Osterweil) reported, "A decade of data continue to demonstrate that adding trastuzumab ( Herceptin, Genentech) to standard chemotherapy in women with HER2-positive breast cancer improves both overall and disease-free survival." Findings "from the final planned joint analysis of overall survival from the NSABP B-31 and NCCTG N9831 trials" were presented "at the 35th Annual San Antonio Breast Cancer Symposium." Investigators found that, "at a median follow-up of 8.4 years, women randomly assigned to receive doxorubicin and cyclophosphamide (AC) followed by paclitaxel plus trastuzumab had a 37% lower relative risk for death than women who received AC alone." HealthDay (12/8, Dallas) also covered the story.0 -
Ten pages since I last checked in. I will go back to read them, but just wanted to say I'm back. Funeral was beautiful, but sad. But different for a 90 year old, sad, but a part of life. Much love.
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