TRIPLE POSITIVE GROUP
Comments
-
Cypher did I sound scary, or demanding or mean enuff---Then I hven't lost my touch LOL
0 -
Camille... You're right and really scary....Dr Google is like Frankenstein. We all do it so we can have some control over that over which we have absolutely no control.
0 -
Ok you guys were kind of vague as to whether I could keep asking dr. google or not--cami what are your thoughts? I wasn't sure (ha ha)-- and then I peed and it had this weird smell like asparagus/burning rubber combo, but I have not had asparagus. I've had it on and off for months and months. My hypotheses -- a) pertuzamab! Maybe I'm not in the placebo group after all! But I've asked over in those threads and had zero response so ... thinking that's not it. If it were one of the other drugs, I'm sure I've mentioned it before on this thread and someone would have chimed in. b) biotin? but I haven't taken it for a few days. c) vit D? same as b. d) urinary tract infection -- I like this one b/c it also provides a nice explanation for the pelvic lymph nodes. However, I had that checked and nada. SO maybe it's some kind of hard to diagnose infection? It's very odd. I did google the phrase "ovarian cancer urine odor" b/c I apparently like to torture myself, and on the bright side, I couldn't find anything that really sounded like this.
I also keep popping up with a temperature of about 99, though I feel fine. I had my next to last hercepin today and they took it. So I'm learning toward some kind of mystery, hard to diagnose infection somewhere. Or trying to.
If there are any lurkers on this thread who are definitely on pertuzamab, or who have experienced this symptom, please chime in!
0 -
Cypher personally when I was on most of my chemo everything had an odor tht was obnoxious and I hat to say but I do not wear perfume the sae way I used to at all. Nothing smells really good on me and I was know for my fantastic choices of perfumes. Even when I'd walk by someone they would stop me and ask me where to buy it or a man wanted to get it for his wife. So odors are really not new to me, including my pee. Usually I will have an infection when that happens and sometimes a small temp change too but all u need then is antibiotics, now this is my specialty, there are different anti' and I've taken many for it so it just depends on the Dr. U'd have to bring a sample of u'r pee in and of course it;s a holiday but that's all right--just wait til Friday and call. That can cause discomfort, pain, even if there is no burning or frequency in peeing. But it can hurt mostly toward where the ovary is or was and up a ways to the side even. BTW no google in case u didn't get that straight. LOL
0 -
Cypher...
My urine had a very weird odor all the time I was on chemo and on through herceptin. Can't really remember if it was he same throughout but somhow I think not but it was pretty strong.0 -
Cami, you scared me!? LOL. Cypher, my pee smelled like sh*t. I also kept smelling a chemical smell, real ammonia smell, like cat pee. It was Me! But thank goodness no one else noticed it, just me. And, STEP AWAY FROM THAT COMPUTER
0 -
cypher I agree with the others. Lymph nodes can get swollen for many reasons other than cancer. You have told your onc. That's good. Waiting a few days or even weeks isn't going to make a difference. So be patient.
One of the ways I handled Dr. Google is to figure out what else it could be other than cancer. This is how I get through the "what's that pain, I never had that before" scars.
0 -
Thanks ladies. Glad to hear I'm nto the only one who had weird smelling pee shile on this stuff. It's not necessarily right after the infusion, but maybe it's not the stuff per se? I did see it could be a urinary tract infection but no pain or burning and I think they already checked for that. However that does not necessarily mean that late stage OC and a UTI constitute the entire universe of possibilities.... I won't get a response from anyone until next week so I'll probably just pop in and out of here, whine a bit, etc etc.
Moon, it doesn't smell like ammonia or cat pee. Ashla, was the bad odor continuous or intermittent?
xoxo!
0 -
Cypher, it probably just smells different for everyone
0 -
Moon it does smell different for everyone and some alot and some not as much.
0 -
Happy 4th of July everyone!
0 -
May everyone's pee smell like BBQ and watermelon today
0 -
Every once in a while this just pops into my head..Remember when we used to talk about boys?
0 -
Donating Tissue for Cancer Research: Biospecimens and Biorepositories
http://www.cancer.gov/cancertopics/factsheet/clinicaltrials/donating-tissue-research?cid=sf145495910 -
I would think if you are at a teaching hospital you would agree to donating. I signed so much stuff back then I don't remember if that was part of it. I do know I agreed to photos for teaching purposes.
BTW as far as organ donation. I found out that we can be organ donors. They will still use our corneas. I was told they test and review medical records so no chance of someone getting our other organs. Granted there is always a chance of human error but it sounds like that is a very small risk.0 -
our corneas, wow. That's it? Is it becasue of the chemo or because of the cancer?
0 -
Happy 4th everyone.
And yes Ashla I do remember talking about boys, then husbands, then kids (for a long time) Then husbands gain (divorce) than grandchildren, now this thing hahaha
And I'm an organ donor and they can use our corneas, but it's up to the Drs. what else--if u have mets nothing, but no mets maye something ony they know. I think that's what it is but I could be wrong of course. I really forgot alot abou all this stuff.
0 -
Lago and Ashla, you guys slay me. I'm laughing over here! And Cami, you too. I swear I will only go on google to stalk ex bfs.
Cypher, over the years, I've had swollen glands in my neck and groin when I was fighting things that finally got a hold on me, like yucking giant colds. I would definitely refrain from worry. The lymph system is second to the immune system in the blood. It is kind of like the garbage collection area where the blood cells dump their garbage. Once the whole fight is won or lost, the glands go back down to normal.
Happy 4th!
0 -
Fluff, thanks for the info! I saw an ad in Indianapolis Magazine for the Community Cancer Center and all of the tough looking doctors posing with their arms crossed were mine or ones I recognized from having to go to Community East here and there. I was wondering "where are the dudes from the South?"
I'm not sure if I am a candidate for Perjeta. I'm almost done with treatment. We rarely have requests for internal participation in trails and I think it is because the FDA worries about bias with actual trial subjects being employees. I have seen some internal shout outs from Roche for semi-rare subjects like those with blood-borne cancers. I'm wondering if I should check with someone. Cypher, do you have the CT.gov number for the trial?
0 -
Pbrain I couldn't do the trail even though I was stage IIB because I was node negative.
Cypher I didn't get into the specifics with the donor guy so maybe if you don't have mets, after a certain they will use more but I doubt it if you are hormone positive.
0 -
Iago, why woudl the hormone positive part matter?
Pbrain, I would have to dig around for that number but it is the aphinity trial. That being said, they started everyone off at the very beginning; I don't think they take people who are already through most of their treatment. Also, I heard taht they stopped taking node negative women, which thankfully includes you. If you want me to pull out my paperwork on it I'm sure I can find that number someplace, but can't do it at this moment. So just let me know.
also those glands have been swollen for several months now....
0 -
Cypher hormone negative folks tend to recur early. After 3-5 years their likelihood of recurrence goes way down, even lower than those of us that are hormone negative. I recommend you ask your onc about that. S/he might be able to explain it better.
0 -
I can't believe I actually have little to no clue what is going on in the company I work for. We are a giant though...arghhhh! I'm always clueless!!!
0 -
Can anyone tell me soft lymph nodes in the armpit vs. hard and papable and easy to feel vs soft...? Would the hard be like a tumor then? When I first seen surgeon ...she said lymph nodes are soft so that's a good sign? I though to myself don't matter if it's in your lymph nodes there there.
0 -
Cypher, why are you in the trial? It looks like from your stats you are done with chemo and have been for awhile?
Ok--Q for everyone. I've been on Arimidex now for ~3 weeks and not a single side effect. Think I'm home free? Don't say no, I'll cry :-)
0 -
Another thing I read to reduce recurrence exercise, stop smoking, diet , maintain healthy weight...
Well I changed my diet dramaticallysince chemo. Hope I can keep up with it...Stop smoking June 4 day before chemo :-P, joined the gym trying to lose 50_75 lbs...I had to friends both really overweight that recurred in...one also kept smoking...one did not.
Everyone tells me I look good and don't need to lose that to look anoxia. I am..but IM 5"3_205lbs don't look it. I think it recurs in poll no matter what and depends on your body?0 -
Glad you caught yours early...IM mad I didn't catch it early? IM really wondering stats on stage 3... Triple positive....anyone know?
0 -
goutlaw. I have a large tumor in my lymph node and it is really hard. Listen to your doc: soft is good.
0 -
Hi my friends...just checking in..this chemo #3 is totally kicking my butt...Neulasta bone pain is unbearable this time...ill be back when i crawl out of this hole....xoxo
0 -
Chicki I'm sorry it's been so hard on u--it's not an easy road we know.
Goutlaw--I feel so bad for u--U'r at the part where too many questions and not enough answers and u'r scared like crazy. That's so normal, believe it or not, First of all ask u'r Dr. for something for u'r anxiety and taking control is a very good thing to do, which i are--but u need to slow down u'r scary thinking and anxiety meds do help rhat. U'r at the beginning and as time goes on u'll understand more and more and altho it's not fun, it's all bearable to take. Stress is one of the worst things to have that's why u might need some help in that direction.There is so much waiting and seeing and what's next and what's now and every single lump u feel it's like here we go again. But the Drs. know what they feel and their the ones who have felt them all, and if they question something u wikl be tested--Just about 2 months ago My Dr. said I need a bone scan, why I said cuz she said she felt something she didn't like. I said everything I feel I don't like and a bone scan, but it's very small so she wants to keep an eye on it. I told her keep both eyes on it cuz I'm not. and I meant it--if it something it will show and it will be dealt with and if not fine. either way it's always some new something that could be going on. Please tell u'r Dr. ezactly how u feel in the fear and stress part and they always want to help u. U'r not alone here.
0
