TRIPLE POSITIVE GROUP
Comments
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solt - no worries - I agree, you need extra protein during chemo and rads. I drank those ensure extra protein drinks when I couldn't get much of anything else down (til I got too sick of them, lol). Yes, there are things you can do to improve the chemo side effects, I realize my post sounded like there isn't...that's not what I meant to convey! What I was trying to convey was for those who have a rough time of it to not be hard on themselves for not being "strong enough" - I've seen lots of newbies beat themselves up for this and just want to reassure them that they aren't being weak. It really does affect each individual differently and some women do great, others have lots of SE's...
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Pbrain I first was on Prilosuc… never worked for me. Then on Protonix (prescription) eventually had to add Carafate. Tell you onc and see what s/he wants to prescribe but don't wait. I initially waited a week. No need to suffer. I hate heartburn and gerd. I also have IBS so that made it even worse. Usually they don't reduce chemo unless you are getting SE that are life threatening or will cause permanent damage.
Bren don't ya just hate being special. I hope they can help you figure it out.
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OMG everyone has so much going on==let's see what I remember.
Ang I'm sorry this is happening to u with u'r husband, but like Lee said Everyone takes chemo differently just as their loved ones do. It really sounds like he just can't think about it any further and wants it over with for u and I know it's not that easy.for everyone involved.
Pbrain it sounds like u feel better, maybe this time u'll know what to do right away and it'll help. The first is the surprise one and that gives u the edge for the others.
Eileen if only gas smelled u'll be lucky--there was a horrible smell from my whole body--I once told the Dr.it was like a family of skunk got mad at me all at the same time--it cames out of my pores.--like garlic. LOL
Bren??? U'rs sounds so complicated to me--well it must be for them to hace all those Drs. around trying to figure u ouy. Geeze that's tough.
Lee u are on top of things--u always look everything up--that's so smart of u.
Sol I hope u'r doing ok
And everyone chin up not to high cuz if it rains u'll drown.
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Cami, Thx so much for the advice, i I'd prefer not to drown! LOL
Lee, its always interesting when they find correlations of different things, so who knows, might be something to that.
Bren, I thought my mom must have had her2 because she had bc and was fine for over seven years, when it totally metzed and she passed away just three days after they found it. She had been in the hospital for dehydration just two months before and no sign of it, in blood tests or xray. So who knows, I am glad that they only found stage 2 for you.
And Eileen, I had gas a lot, didn't know it was Herceptin. Cami, I smelled through my skin too, reminded me of the cat litter box. But I was the only who could smell it.
Pbrain, I mentioned they changed my chemo because I was so sensitive to it and it made me so suck with diarrhea and vomiting. I learned to stay on top of the nausea and didn't throw up after the first time. But by my third Tx, they had adjusted all my chemo. They start the dose based on body weight, but the adjust by sensitivity. So make sure you tell your mo ALL the SEs so if they need to change something up they can. Of course, they still want it to be effective, so it still wont be a walk in the park.
Angel, your DH is handling it as well as he can. Yes, you went through it, not him, but he really has no clue how you felt, and he feels its over. I think we all deal with the get over it now people. Hope he realizes he is pushing soon.
Ok, now can you all tell me WHY everyone is telling me that "you look so good!" The only thing I fan think is I looked so BAD before! I finally asked a good friend if that was it, and to her credit she admitted that I really looked bad just two weeks ago. I was still on antibiotics at that point so could I look so much better in two weeks. BTW, my PT mentioned how much better I looked than when she first saw me a month ago. This makes me feel like I was delusional back then! LOL if this keeps up, I am going to look fantastic next month! LOL
Wow, sorry about the long post. Guess I feel better not just lookin good! LOL0 -
Good evening, Moonflwer!
I just looked at your diagnosis date: Dx 11/11/2011
So, you're just about one year out from your diagnosis.
Soon after I started posting here someone on this thread (it might have been KayB but I'm not certain - it was a week or two ago) said "you and Bren58 (I think it was Bren58) have about a year of psychological and physical trauma to get through. There will be ups and downs, etc." (this is all loosely paraphrased and it may have been ashla who said it - anyway, since reading this thread I've had the one year figure etched in my mind because of the chemo and then the herceptin all adding up to about a year).
Maybe your body is finally starting to feel and look like it's on the fast track to being mended! It's been one year and three days since your diagnosis...
Just a thought -
Either way, I think that's great! Sometimes other people can see progress in ways we cannot?
Have a great evening!
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Pbrain - you didn't answer my question about what meds you were given, so I'll list what I was given so you can compare.
dexamethasone - the day before, the day of and the day after tx
emend an hour before tx - 2 to take home for the next 2 days
onadestron - 2 or 3 to take home - can't remember exactly
and probably something through the iv.
Also, I had terrible tummy grumbles which were fixed with somac and the digesic and claratin to fix the leg pain.
I never felt like vomiting and only got the runs for a day or so about a week after tx.
Sue
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Such great rads info!! How am I going to remember this when my rads time comes next April?? I feel like I'm on this neverending road for chemo. Meeting with a bs in a week does help to get some perspective that there will eventually be an end to it. Everyone here is such an inspiration!!
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Enough of the woe is me stuff newbies.....drop and give us 20! I'm just kidding of course.
I missed so much here that I'm hopelessly behind in just a few days but this forum is so amazing . I wish I had found this forum before I started treatments. Like I wish I knew about steroid highs because I would have done all my heavy cleaning on those sleepless first few nights after chemo. Gotta say that after this past year and facing down cancer...keeping an immaculate house is no longer high on my list of priorities!
Ang,
Everyone deals with illness in different ways. He may very well be more frightened than you are. Keep in mind also that your perception of his behavior may be skewed by treatments, hormone imbalances, new medications, stress, lack of sleep etc. I was very psychologically fragile and on a roller coaster of emotion or most of my year of treatment. I started crying in Target one day because they didn't have my shampoo! Why now? Woe is me. Nothing good ever happens. I don't need this.
As for rads I used the Omaz method like TonLee. I had no skin problems whatsover with rads even though I have DD boobs! I wore the tank t folded under my boobs under my sports bra during the day. I used miaderm cream and aloe 4 times a day as moisturizer. Hated rads but had no skin trouble!0 -
Good morning, ashla. I don't have anything to add other than I'm glad to see you're back.
Also, are these tank tops in the women's department at Target?
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Thanks Lee, you are always such a wealth of information! I am off to work, but definitley want to read that info. Maybe I will log in from work if I have time
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Moonflower (and Pbrain) they actually base chemo on weight and surface area. That's why they take both measurements. I remember when I first saw my onc the triage nurse measured me at 5' 5.5" I told her that wasn't right. Measured again and claimed it was. When I finally met my onc I did tell her I don't care what the nurse says I'm 5' 6". My onc measured me again and I was right… then ran out to talk to the nurse even though she wasn't done with me. Granted this formula is the best way they have to estimate. It's not a perfect science.
Moonflower when you are doing treatment every one expects you to look like near death like the do on TV. They just don't understand that most of us beat this thing, not die of it.
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Morning Lee....
Still no sleep for you?
I got mine @ Old Navy . I actually used the men's version. I don't think it matters other than the cotton softness and moisture absorption. The sleeveless tanks. Are they called muscle shirts? I also used cornstarch ...after the miaderm dried in.....someone suggested putting the cornstarch in a sock and dabbing it under and between the breasts . I still use that when the weather is warm.
I didn't use the emu oil but have learned since that it is a wonderful anti aging oil for the face as well. It takes a bit of research to find the good emu oil .
Your RO team will tell you to get soft, cotton wireless bras as well . The sports bras go a little lower and don't cut right under the breast where breaks in the skin are most
common. I bought one sports bra with a seam down thru the middle of my nipple after treatment and it
irritated my skin immediately.0 -
LeeA - The tank tops I got were nearer the Juniors department about $5-8. I got a few of them. I also ordered a bra that was larger and looser and that helped as well. Be sure to include the area on your side all the way up to the armpit. They radiate there too.
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Bren 58,
I'm having trouble undertanding this. I understand the difficulty your team is having in assessing whether it's a recurrence or a new cancer. If it is in fact Her 2 pos and you have never been treated for it previously, why wouldn't the standard protocol..chemo, herceptin, surgery, rads, hormone therapy..... apply for you?0 -
About a month ago - before I started posting like a monkey on crack - I read a few mentions about chemo no longer being like the old eighties movies stereotype. I assumed the meme involved the Julia Roberts movie with George C. Scott's son.
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Omaz, thanks for the info! Not sure if I'll need rads or not but I like the idea of a really soft tank top (versus ribbed). I'm looking at Target's site right now.
This one has 46 positive reviews:
Mossimo Supply Co. Juniors Long and Lean Tank - Assorted Colors $6.00
Here's one review:
I bought this tank just for wearing to bed, so soft and the perfect fit. I don't like wearing pajamas, so this tank top is the next best thing.
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Thats the one LeeA! I bought some on clearance and threw them away after rads. A new one each day is best since they get pretty gooped up during the day and you have to wash in hot water before the next use.
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Good Morning everyone! I am soooooo far behind, I don't think I can catch up. I've tried.
What I got is info on rads, Pbrain and tummy cramps. And I can't remember now.
On tanks......I loveeeee the gap tanks. Not the ribbed ones. These are just soft and cottony. I wear one everyday under whatever I'm wearing and I have some that I wear to sleep at night. I got mine at the Gap outlet store. I'm sure they have them online too.
Pbrain- I have IV steroids and then only take a half pill on Saturday and Sunday. And that's it for steroids. I wasn't aware it was for keeping fluid retention down for taxotere- good to know.
Okay, so mentally, the cloud is lifting and I am feeling a lot better in that department. I just got back from Tampa and my Plastic surgeons office and happy to report he is not missing his manhood. I was nice. But shared my grief with him. He went over exactly why I am feeling the internal abdominal tightness- mesh sutured down to fascia to prevent future hernia and will loosen up over time. And external tightness because skin is still stretching; he said give it till 7-8 month mark. Also that chemo can prolong healing. And that the chemo is is tough physically and mentally. Really! Ha! Okay, so going to try and remember this and not be hard on myself for prolonged recovery. Thank you for all your encouragement over this mental depression everyone.
Welcome to everyone that's new. Great place to be for support and friendship, from people that know what it feels like.
Also- I feel like a teenager again- my chin has pimples! Really?! Bald with pimples. Ha!
Pbrain- sorry you had such a rough go this first treatment. But nice to hear your pulling out of it. I only had abdominal cramps because my bowels couldn't decide the first time what direction they wanted to go. So, I had a bit of both.
Rozem- I pray your feeling better. I know the " when is it going to end" feeling, as far as the plastic surgery is concerned. (((Hugs))).
Hope everyone is else is doing good. I will catch up. Have PT today at noon. May she can help loosen this fascia up some more. :-)0 -
Yippee I am drain free!
Lol
Headed home from doctors office. Will catch up on everyone when I get there:)0 -
MsTori, Welcome back and glad the cloud is lifting.
Jen4,yay for no more drains! Enjoy your shower!
Rozem, hope you continue to feel better.
Much love to all.0 -
Ms Tori...
You're too young to remember likely but the late Gilda Radner played a character named Roseanne Rosannadana on Saturday Night Live . Here is a clip of her reading a letter from a viewer. We've posted this before but it kinda captures how we feel and LOOK during treatment.
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Man, I miss Gilda. She was wonderful.
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Moon..
Me too. I can't figure out why but she left such an indelible mark. Her take on comedy was just so adorable....maybe it was the point in our lives where she entered..and sadly left?0 -
ashla, I missed this earlier: "Still no sleep for you?"
Actually, I've been sleeping pretty well since the surgery. I woke up at 4:00 to go to the bathroom and took the pain pill (I was behind by about 2 hours on that) and then ended up going back to sleep; however, the general rule is: I'm a hopeless/hapless insomniac.
I just watched the Gilda video twice...
Love it! (and her) but like you mentioned - it's bittersweet to see her. What a great ensemble that was - way back when.
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Thanks Moon! Yes, much better. :-)
Yay Jennifer! I hated drains. Ick!
Ashla- ahahahaha! Love it! I am pretty, or so pretty! I am 42....so know of her, but probably wasn't watching then. I have watched some of her clips before. I love her sense of humor! My whole chin area is pimply. Ick! I wore make up for the first time is a while. Wore it Tuesday and yesterday. But not sure that caused it. Also, I have rosacia. And have used a topical gel for over a year now. Maybe a flare up? I've never had it like this before. Oh well....if this is the least of my worries, I'm good.
Omaz- wow! 1997....would be interesting. I will ask MO.
Well, off to PT I go. Time for some abdominal fascia massage.0 -
LeeA,
It's great that you're sleeping pretty well. For me at least that was a problem. Despite being postmenopausal at DX , I still got at least 5 or 6 hrs of sleep in a row regularly and felt well rested most of the time. During my year of treatments I rarely slept more than 3 or 4 hrs in a row. It just made more time to fret.
I am reluctant to write it but the past week or so I have finally been sleeping 7 hrs in a row. I am one month post final herceptin. I am also feeling less weepy. Much more even keeled.
I'll keep you all posted0 -
MsTori - I had acne during the first 3 rounds of chemo and then it went away. Definitely felt like an insult....bad enough I was bald but had to feel like a teenager again to boot.
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Bren58,
I had almost the exact same thing happen, except my first diagnosis was in 2003 when I did know I was Her2+ but they weren't doing herceptin yet for early stagers. They couldn't decide this time if it was a recurrence or new but finally decided it was a recurrence since it was almost at the same spot as my original tumor and was the same in the other aspects. I also had a microinvastion of the SN too! I'm coming out the other side. Had ACTH, rads, axillary node disecction, almost done with the yearlong Herceptin, phew! Getting my nipple tattoo in a couple of weeks and my port out in December! Hooray! This is a great group of ladies. Glad you found us.
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Sorry guys, I haven't been answering questions or taking suggestions because I've just felt so flakey and awful. I'm doing better today although I threw up again last night. I've puked a lot with this first round and am now down 15 lbs. I am almost positive 5 of them were pre-chemo water because I felt very puffy after the first day of steroid pills.
Ok, so I think I'll pull through this one. My boss told me to just take the entire week off and stop trying to come in. I thanked her. It feels weird to have to miss so much work time...
Here was my meds for this round:
Dexamethasone 2X the day before, none on day of, 2X the two days after
Chemo came complete with herceptin, taxotere and carboplatin drip, plus push IV benedryl, pepcid and dexamethasone.
My take-home anti-emetic was zofran, I also took prilosec (generic WalMart brand, thinks it makes a difference). First day I felt fine, just super constipated so I beat up my abdominal muscles trying to give birth to some little pooplettes, then took senakote (2) for the next few days. All guts hurt like heck, but I wasn't about to go near an NSAID since the GERD was so righteous. I was hurting. Then the puking started up so I asked for and received phenergan. I threw that up right after taking it last night.
Now I just have lower belly pain and the big D. Cami, I can totally relate to the feeling of being a stinky mofo. I gross myself out. I had massive night sweats, but not so much anymore (thank god) and my bed clothes smelled horrible, so I was washing them.
Ok, if anyone gives me some suggestions for the next round, I will now write them down. I feel a little more clear-headed. I know I need to ask for Emmend, which I will do. And I know I need to take stuff on the feel ok day after chemo and not assume it is going to hit me. But I don't want to be out for a full week everytime I get a treatment. I get bored and lonely and feel like an invalid!!!
Glad to see everyone alive and kicking, and I kind of like Lee's info on solar activity. I'm definitely a sun addict...my sisters and mother are not...hmmmm....
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http://www.youtube.com/watch?v=nLhWWyd5SCA