TRIPLE POSITIVE GROUP
Comments
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I absolutely will!! Who'd of thought I'd be so excited for chemo?
I was initally told "no chemo for you due to staging dx....Tamoxiflen (sp?) only", so when I found out they were really "going at this" with the chemo, it made me feel like they at least thought I had a chance of killing what's there, as opposed to containing it. We'll see!! I had the port put in, least they can do is use that ugly annoying lump!
Remaining...cautiously optimistic!
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Jlynn0807 if anyone asks you what that lump (port) is, just tap it twice and say "I'm doing fine down here" then say "it's how a communicate with the mother ship" I so wanted to do that but no one ever asked me.
Oh and another thing I wanted to say. If anyone asks about being bald, tell them you shaved your head in protest of female genital mutilations in the middle east and Africa. Usually the talk of genital mutilation puts a stop to the conversation.
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Shore,
Good for you!
I HATE spin. Can't stand it....lol. My cousin (the one diagnosed a year after me) owns a spin/pilates studio and teaches classes.
She's tried to get me to her classes.
No way.
She'd murder me!
The whole time I'm on the bike I think to myself..."Gah, all this and my upper body isn't get a darn thing!"
When I have pain like that...I like to distribute it evenly over the whole body
Seriously, I think mixing things up keeps it fresh and fun. If I only have cardio to do, and have been lifting faithfully, it's a great cardio workout.
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lago.... I'd sure stop asking questions myself at that point!! lol
I debated and debated re this dumb thing. Had a choice. Arm or chest? I'm funny about things being permanently stuck in my body that I didn't start off with....every time I've had surgery, first words when I open my eyes, and can speak...."When are you taking out the IV??" This I had a helluva time wrapping my brain around, but when it's that or veins being destroyed....etc etc you take it. I am, however, SOOOO glad it's not in my arm. I think that would have been worse...for me. I know it's, like everything else in this cancer journey, somewhat of a personal choice.
Gotta have a Wawa. Can't kick this rotten Ambien. Didn't seem to work during the night when I needed it to, but I sure could fall asleep as I type! I know, enjoy my coffee now....I've heard coffee+chemo not necessarily a match made in Heaven.
Lynn
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Awesome Shore!
Marlene, your baby is beautiful! And.. welcome : )
I love Spin. I went to one called Soul Spin. I super popular class in the dark. It's currently one of the most popular exercise classes in New York City (friend of mine works in one of the major facilities). It does incorporate some arm movements, but obviously the legs and back are hit the most. Biking agrees with me. I live right by one of our state's mountain bike trails. I just go at my own pace and don't do any of the crazy jumps. Even going through reconstruction I could still ride my bike, so it was very empowering.
AAARRRGGGHHHHHHH!!!
Ok. There. That's why I came here today. To vent a second about cancer. It sucks. One of my dear friends, 45 years old and 2 kids, called a few days ago. IDC Stage 2. Port went in this morning. Chemo TC, starts Wednesday. She is coming over for dinner and support tonight. We are going to work on the cold caps so her spouse has that figured out and talk about frozen peas and glutamine, etc. I am cleaning the house, making everything serene (as serene as it will ever be) and trying to NOT show her the level of anxiety this is causing me having to revisit these issues. I want her leaving my home tonight feeling supported and positive.
Back to scrubbing a toilet bowl. Vent over.
Thanks : )
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JLynn - here is a link to the thread I saw about Perjeta http://community.breastcancer.org/forum/8/topic/790575 . I am stage IV too but I did TCH and will stay on Herceptin indefinitely. I also did radiation and am on Tamoxifen. I am so glad there are more treatments (Perjeta and Kadcyla) out there so that I have options if the Herceptin fails me in the future. I am NED after 6 rounds of TCH and maintenance Herceptin (since July). This is a great thread for us triple pos girls. I also haunt the stage IV threads but I try to stay away from topics that depress me. Don't google survival rates, they are not accurate and everyone's response is different. I know several women who have been stage IV for over 10 years. My MO refers to it as a chronic illness. Good luck, let me know how the Perjeta treats you!
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geewhiz - you are a wonderful friend and she is lucky to have you!
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Geewhiz,
Must be something in the air or water. . . I was out running errands just now, and I ran into a former secretary at the school where I am employed. She has a similar diagnosis to mine, is TOTALLY terrified and freaked out, so I invited her over for a long, leisurely, lunch tomorrow. The way I view this whole episode is as follows: I did not want, ever, for any kind of cancer to enter my life, BUT given that it did and I survived, mostly due to the GREAT love, support and compassion and kindness that others showed/continue to show me, maybe it happened so that I can "pay it forward," so to speak, all the kindness, knowledge, compassion and humour that others have directed my way. Life's journey really is about evolving into whoever you are supposed to be, based on HOW you respond to life's challenges. I feel stronger, calmer, and very, very present and thankful for every waking moment. Your friend is blessed to have you in her life.
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Gee and Gratitude,
You both are awesome for opening up your homes and hearts to these women.
I also came to the realization that all the knowledge and mistakes I made along the way....they'd be terribly wasted, and it'd be horribly selfish of me not to share when someone comes across my path.
I'm not into activism like Lago....(WOOT Lago!)...but when it comes across my path...I jump right in
There is strength in a group of women working toward the same commendable goal! Strength and honor.
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Geewhiz and gratitude u'r both ver special for doing what u'r doing and helping to calm someone down is a great gift to have and a very importnt one too. I hope u both have rewarding visits for u'r friends cuz u can make a difference in how they react to all of this crap.
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First I must stress that I'm fine now. Sunday did not go well. Suddenly I couldn't catch my breath, my heart was racing and it hurt while I was breathing We called the on call dr who told me to go to the er. Apparently the bone pain from the neulasta shot suddenly hit my chest . We went and they ran all the tests. Almost made me stay but didn't and I was due to see my dr on Monday anyway. For the additional Herceptin. . They checked my heart EKG and more I learnt that I should have taken stronger pain killer. (I had Percocet from my bc surgery). And now an anti anxiety just in case. Also. The steroids didn't help with the neulasta shot. According to my dr. I had warned her that I don't do well w drugs. I understand that the first time w chemo is the worst and scheduled an acupuncture session this Thursday. This is much harder that I ever anticipated. How are you able to deal with this. Sorry for ranting. I'm much better now should be getting stronger. Just didn't realize how hard it would be. I really admire all of you.
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Hi there Kelloggs...
A Stage IV NED? CONGRATULATIONS to you!! You have no idea how happy that makes me, for you and for me too! I've realized since this dx was handed to me....I shouldn't give my things away just yet. Actually, the things that matter most to me, I cannot give away anyway. The rest, whatever. I don't care.
Anyway, I was originally told NO chemo....so this is a sudden and unexpected turn by my onc (who I love dearly...he is not only smart, but incredibly compassionate...I'd recommend him to anyone). I went to his office Friday, and when the nurse handed me the Perjeta Medline info, I told her she'd made a mistake...nicely, of course. But she hadn't. From Monday to Friday am with his cancer board, I went from Tamoxiflen to Perjeta. (I have NO idea if I'm spelling these drugs correctly, but I think you know which I mean).
So, I am ready for chemo. Scared? Oh yes. I don't know what to expect. I am getting my long hair cut short tomorrow, and getting a wig from the ACS. I will have to order an extra for myself, but this one is "on the house" so to speak. I do not, admittedly, have the courage to shave my head, but I will cut it short so I don't find long clumps of my hair in the drain. As prepared as I think I am for the Alien look, I am sure that when it does happen....I will freak. Thankfully, my husband is incredible....and I am a lucky woman in that regard. (yea, he's a stinker now and then, but so am I).
I will post here as the symptoms hit. We will see. Thanks for the positive information!! It truly makes such a huge difference!
Warm wishes to you,
Lynn
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Shasha10 - I didn't have Neulasta the first time but I did have it the second time and I woke up the next morning after the shot feeling like I had been dropped off a building.
No specific pain but an overall feeling of malaise.
I did take Claritin before/after so I don't know if that had anything to do with helping with the pain.
It just so happened that I really started to lose my hair after the second round and my scalp was really uncomfortable during those post-Neulasta days.
ashla hit the nail on the head when she said that, with the first time, your body is being hit with something unlike it's ever been hit with before. I really do think the body goes into a sort of shock - kind of like "what the h*ll have you done to me?"
With the second infusion you'll kind of know what to expect and you'll be able to combat the Neulasta side effects with the Percoset.
I'm so glad to hear you're feeling better today!
I've quoted one of the women from the December 2012 chemotherapy thread here at BCO several times but I don't think I've quoted her here. This is how Nicole503 describes it:
The only way out of the chemo valley is through the chemo valley
I think there's a learning curve each time. For me, it was "eat more protein/drink more water."
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Shasta: My first was the worst of all too. Major bone pain everywhere, teeth, bones above the eyes...you name it. I too ended out in the ER with big time heart palps two days in a row. The rest of the treatments were so much better. Again, keep up with the 100 ounces of water a day. Vent here all you need to....it does help!
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Camillegal and TonLee,
Thanks so much for your kind comments. Yes, there is great strength and honour when we gals all work together. Well said, TonLee!!
Shasha10, I am so very very sorry that you are really struggling. I had Neulasta after each chemo session (6 in total), and I found days 2-4 after receiving it were quite pain-filled. Percocet did the trick for me when I could no longer stand it. LeeA is correct to state that hydrating yourself is critically important. I was a good girl
and drank 2 litres-3 litres of water per day, and continue to do so. Jlynn0807,
It is a good thing to cut your long hair to short. I did the same thing, and it helped me to prepare for thinning/almost no hair. You think you may freak out when you see your "new" look, but I've got to tell you that you really do discover the profound depth of your inner strength during the treatment phase. I buzzed off my own hair after Treatment #2, and I thought I would be a blubbering mess. Instead, I looked forward in the mirror, did the buzzing and felt strangely empowered and liberated. Clumps coming out freaked me out much more, but everyone is different in how they respond to the "hair issue." Now, waiting for it to grow out, that's an entirely different story
. Take it one hour at a time, one day at a time, whatever works for you. We're all here to support you. 0 -
Jlynn0807 my port was on my chest, right side. My reach to recovery partner has it in her arm. You can't even notice it.
geewhiz cancer does suck but I've learned to deal with it. I now know so many people with the disease. Since I've been diagnosed 3 people have passed, 2 have recurred with mets. These are just people I have actually met in person and become friendly with. I've learned that most of us do make it but still hard when someone you know is diagnosed.
gratitudeforlife one of the gals I'm supporting righ now said to me "I seem to be getting offers for all this free stuff, support and services. I don't think I deserve all this." I told her "take what you need then when you are finished with treatment and things are back to normal you can pay it forward." Then I invited her to join my Strides Against Breast Cancer team this coming October
TonLee I'm no activist. I just keep getting these opportunities. I think the PR person at the ACS likes me.
Shasha10 THe first Nuelasta was the worst. I couldn't even stand up straight for an entire day. It hit my back and ribs.
Lynn I never buzzed my head either. I did cut is short. It is quite messy when it goes. Get a lint roller. Also talk to ACS about a reach to recovery partner. It's a great program. I'm a reach to recovery volunteer. Sometimes you just need to talk to someone.
Kelloggs Love hearing you remain NED!
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Thx guys I like the quote about the chemo valley. I was so sure I only needed Claritin. I guess with chemo I need drugs. I'm one of those people who never took aspirin. Now chemo really??? Keep me posted on the October stride. I'm planning fundraiser when this is over. To give back to bc. Not sure where. But definitely need to give back. Thx everyone.
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Gee & gratitude, you're friends are lucky to have you and will benefit from your knowledge & experience. I finished chemo 1 year ago and have since been in contact with 4 other women my age who were recently dx. I also know 3 others recently dx, all around 40-43. Scary stuff, and I wish I never had to share my chemo notes with anyone, but im glad they seem to take some comfort in what I can share.
TonLee & Gee -thanks for your thoughts on spin. I liked it! Ill keep up my walking, yoga & kettle bells, but spin a couple times a week will be fun.0 -
Gratitude....I don't think I'm a brave enough soul to shave my head. Maybe the next time? I don't know. I can certainly see how seeing it come out in huge clumps would be an issue...maybe at that point, when it starts to fall out, I will just say "to heck with it" and shave my head
I don't know....we will see. I do know that there are sooooo many really nice wigs to choose from, I can't decide. I have a hard time picking out a package of panties, so this could be quite the endeavor. I best hurry though, because the idea of walking around my house with nothing is bothersome. Prob more for my kids, who will be totally shocked. Probably the dogs too because my 18 yo shaved his head just last night....and they started barking at him like they'd never seen him before!We shall see. Onc called at 4 today. Turns out, my port was put in recently enough that I don't have to go in to get it flushed, and we are still hoping for a Friday target start!!! I am feeling that all too telling cancer burn in the "unaffected" breast....and am getting quite nervous. Wanna get moving!!
Sooner the better!
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Lago....when I first got my dx, I did call somewhere, I don't even remember where now. I was in a daze. They team you up with a "cancer buddy", with like staging/etc. However, at that point, I was a III, not IV yet. Also, she called me, and I wasn't ready to talk. I will have to call her soon though. I knew if I tried when she first called, all I'd do was cry. Now, I can talk without breaking down. I am finding hope here that this situation, while not curable is treatable. Hopefully, I can learn to do things without that constant "oh, that's right...you have CANCER" thought in my head. I think I will. It is getting better every day!!
Oh. My point was...I don't know if it's the Reach to Recovery program or not...but it's similar in nature.
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Shasha OMG how scary for u--it can be awful we all know--I don't know if our body gets used to it or what but u seem to go with it better after a while--maybe cuz u hydrate more and do take pain pills. I never took pain meds before-they would give me one and I stopped them I just didn't like the feeling even aspirin--Didn't like any drugs. It's a different story now and yes we are all different but one thing most of us had are some kind of SE from this crazy road trip--some are rougher than others I know but u sure did the right thing by going to the ER--Never put that off thinking Oh it will be allright--chances are it will be all right--but just go to the ER when 'r body is really acting goofy. I think each of us knows our bodies pretty well, but all this stuff throws us off a bit so it's a shock to what we think or how we've reacted to things before. It's all crap, but u do it anyway.==I truly hope that the remainder of chemos are much kinder to u.
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Shasha10 I didn't use any narcotics, no pain pump not even a Tylenol after my BMX. Nuelasta I ended up tooking Aleve and it took the edge off. (I didn't want to take narcotics because I was already constipated from chemo. Found out later when I got shingles narcotics make me nauseous, but chemo didn't). Cancer treatment sucks. If you need drugs to make it suck less then do it.
Jlynn0807 Do you know how many times I talked to those going through this and they were in tears?! That's why we volunteer. You don't think we also were in tears. I so wish I knew about the reach to recovery program. I too thought I wouldn't want to talk to someone and ended up crying alone when I was first diagnosed. We volunteer so no one will have to ever go through this alone. We get it. If you need to cry call your Reach to Recovery Partner. We are there to talk you down from the cliff.
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Wow, I am sorry you are having such a tough time. I don't have any advice for you, but I bet some of the other ladies on here have had similar experiences and can share what helped them. I feel fortunate to be having a much easier time with it so far. I'm glad you are feeling better now and I hope things go much better next round. Take care of yourself and get rest!
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Lynn there are so many new things on board for stage IV--my sister is 73 and still works full time for 6 years now- I've retired but didn't really plan on it but it's fine, I hated working anyway she likes to work--and we do have each other so that does help us I think oh and my cousin (who we are very close to) too and she's my sisters age and works full time. They amaze me and I amire them totally--So there is an up for this stage--they've come a long way.
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Lynn,
Ask your dr for a prescription for lidocaine creme (called emla creme.) Its a numbing agent. Put a liberal glop of it on your port about an hour before your infusion. Then cover the area with a small piece of saran wrap so the creme doesn't stain your clothing. This way, you won't feel the stick.
I also recommend taking an anti anxiety pill before your first chemo. I'm not a big pill taker either, but I got a prescription for xanax and take a small dose whenever I have to go to scary drs! It really takes the edge off. When I mentioned to the infusion nurse at my first chemo session that I had taken xanax, she said "candidly, I wish everybody who comes for chemo for the first time would take it! " Starting chemo certainly qualifies as a stressful situation and that is what those meds are for.
Good luck on Friday!!
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cg I never heard of that creme before but I have to honestly say it never hurt acsessing my port at all--I loved the smell of what they put on so I'd get all happy. maybe that's why.
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camillegal, when they access my port they use iodine. Several layers/swabs. I like the smell of iodine as well. Back in the day, people used to put iodine in baby oil and use it as suntan oil.
Jlynn0807, regarding hair - I've never shaved mine down completely. I did use my husband's beard clippers (not the greatest hair tool) to take off the part that was causing scalp discomfort. I am not completely bald and my scalp definitely shows. It's not a nice look and I wear a hat almost all the time (except to sleep). Strangely enough, the part of my hair that's left is the root grow-out I had. My last color weave/highlighting was August 31. I was diagnosed October 9 and didn't have my roots done because I knew I was going to lose it all anyway. I don't think I'll shave off what's left because I have thin hair and I'm hoping this will kind of blend in with the new stuff that I hope will eventually return!
I wear ski caps/beanies/Buffs and on occasion, my wig. I really prefer a halo wig I bought a few weeks ago. It can be worn under a hat or scarf but isn't as scratchy/constricting as the full wig. And now I wish I had bought a wig from a company called Estetica. I tried one of their full wigs on the day I bought the halo wig and I was amazed by how comfortable it was. I later looked up the brand on the internet and they are apparently known for their type of wig cap (pure stretch or something like that).
Good luck on Friday. You'll be in my thoughts and prayers!!
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Lee I remember the day when iodine and baby oil was mixed --ONG what a concoction. Maybe that's what I smell I never asked I just smell. LOL
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Ladies
I just picked up my first bottle of Femara today (I'm transitioning from Tamox to Femara). I know it's an AI, but I never realized that it's considered a chemotherapy drug (at least that's what it says on the bottle.)
And a lot more warning labels as well (drowsiness, shouldn't be pregnant or become pregnant.) Tamoxifen never had that. Anyway, it was a touch unnerving. Thoughts?
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Shasta10,
Have you tryed Kytril at all...I had A very bad time myself with tx to..the neulasta was awful I new when I had received the shot on a wed I wasent getting out of bed on Sunday because the pain was so bad to my neck and upper back...I know it's hard if I can do it so can you I myself do not reach well to meds so like I said it was awful for me sometime I joke and say thank god for hardwood floors even though it's not funny...good luck with the rest of your tx...0
