Starting Chemo May 2008
Comments
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Hey Kristy,
concerning rad choice, I had a mastectomy so didn't think i would be doing rads after chemo, but only had a 1mm buffer zone between cancer and chest wall so rads was a strong recommondation for me. Also i am triple neg so don't have the added protection of other drugs that can come after chemo so i have to hit it will all i have now. !
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Hooray for Shea!! (butter) I've been using it on my face and hands since my dx...I bought 100%, and it's hard, so I've been mixing it with a few drops of raw almond oil to soften....hope that's not undoing anything the shea is doing!! Hadn't really thought of putting it on my head, but will add that to the regimen.
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Hooray for Shea!! (butter) I've been using it on my face and hands at night since my dx...I bought 100%, and it's hard, so I've been mixing it with a few drops of raw almond oil to soften it and make it easier to spread around....I hope that's not undoing anything the shea is doing!! Hadn't really thought of putting it on my head, but will add that to the regimen.
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Karin, where do find those pics??? I sure hope she who shall not be named (a.k.a. "boulder the hairless") stops by here once in awhile to read this thread, even if she doesn't want to post.
Hang in there, everybody--the worst part is nearly over for most of us. I'm not getting Herceptin, but I've heard it's a piece of cake compared to all the other chemo drugs (as far as immediate SE'S). To those of you who are already getting Herceptin: Don't you hate when somebody says, "It'll be a piece of cake?" I apologize.
Oh, my--there is no way I could put shea butter on my head! I'm sorry. Just couldn't do it. BTW, my hair is soft and fuzzy and growing longer every day....but so far, it's sticking STRAIGHT UP! At this point, I'm still modeling a crew cut; I don't know what I'm gonna do when it's an inch long and still sticking up. Hey, I remember a discussion about Brylcreem awhile back... OTOH, maybe shea butter would work for that?
otter
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I sell about 300 lbs of Shea butter a year, me and my customers use it everywhere. I use it on my head because I have dry patches and psoriasis. Chemo temporarily cured it, but it is back now.
Herceptin? My first does was a piece of cake- lousy cake mind you, but I'll take lousy cake over chemo anyday! I was pretty nauseous and muscle pain-ey for a few hours after.
Almond oil won't hurt your Shea, don't worry Sherri. If you microvave it for a few seconds you won't need to add the oil.
N
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I've been using shea butter for several years. I even put it on my head now. Pure, unrefined shea butter is the best. We put it in all our soap that we make too! A little goes a long way.
Been pretty uneventful here the past week--left arm still sore from all the sticks last week. Go tomorrow for labs, hoping WBC hasn't hit bottom. Nausea finally went away today and can eat a little more.
Karin--love your pics! I miss Boulder the Hairless too and I hope that she is enjoying her vacation!
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Yesterday and today have been achey days - but the fact that I know what to expect by now, and that I only need to get through the taxotere SEs this one last time, is making everything a LOT easier. Jean, my hand is out to you as you get ready for your final taxol!
I'm going to have to pick up some shea butter. There are vendors who sell it at the farmer's market here, but I've never tried the straight stuff. (I also have a dry/psoriatic patch on the back of my scalp that went away during chemo - thank goodness, because it would have been really hideous on my bald head! The only other time it hasn't bothered me was when I was pregnant with my daughter. Isn't that weird? Do I gather from Noelle's experience that it's probably going to come back?)
Congrats to all the schoolkids (and their parents). My daughter doesn't go back until the Wednesday after Labor Day. I'm really, really hoping that this will be the year she finally gets motivated. (She's a bright kid, but tries to skate by doing the minimum.)
Time to go veg out . . .
Linda
Edited to add: the radiation discussion on this thread is really interesting. I really, really don't want rads - since I had to have a mastectomy, I feel as though I deserve some kind of a break - but I also feel duty-bound to bring it up with my oncologist at our next appointment. I went into this thinking that the general rule of thumb was "fewer than 4 nodes, no; four or more nodes, yes," but have since learned it may not be that clear cut. For those of you who had mastectomies but are moving on to rads, what were the key factors? Is it margin from chest wall? Size of tumor? Something else?
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Linda,
My rad onc described it as percentage of positive nodes of those that were removed....made sense to me. Also that scar tissue has a lower blood supply so possibly not as much chemo got in there to kill the cancer cells....she also said as my tumor was 3 cm, that was approximately 3 billion cancer cells. I had a 3mm margin from the chest wall and 2 of 7 positive nodes. I feel good about having rads, I don't have much fear, and I think it is the right decision. But my medical oncologist told me on my first visit with her she wanted me to do rads, so I've had a lot of time to think about it and do research. Hope this helps.
Sue
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Linda, make sure your Shea from the market is not pure white, and not anything much darker than off white. What Gracie meant by unprocessed was unbleached. The bleaching process uses a gasoline derivitive to make Shea pure white, and removes a lot of the healing properties. The bright yellow and brown stuff that is sometimes seen is either coloured, not pure, or not cleaned properly.
Jean, I will jump in the river and swim about with otter just in case you need help. I need the practice before the race.
Cheers to everyone! Boulder on a fun and safe journey and Sue on a safe flight to get the pupps
Chemoooo and all that too!
Edited to add here too...
Linda I was thinking the same thing about Rads. Someone else on another board has what looks like the same dx as me, and she wanted to know why I was not getting them. Of course that made me freak out (a little) I was told that here 5cm of total tumour size meant rads, I had 3 tumours that added up to 4.9cm. I only had one micro-metastasized cell out of 17nodes removed in the lymph area, after a talk with the rad onco my onco said I did not have to have them.
Funny, the spell check hates my british/ canadian spelling of "tumours"
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Thanks, Sue, that's helpful (and makes sense). I was told early on that rads wouldn't be necessary, which I was only too happy to hear, but want to make sure that I'm not failing to ask questions just because I might not like the answers.
Linda
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P.S again.. I was told early on rads would not be necessary, but my nasty Doc mentioned the day b4 my last chemo that there were no notes in my file from the rad-onco and she would have to check if I was getting rads or not. You guys all may remember how mad I was that she did that to me when I thought I was done.
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For those that don't read the Road to Hell thread I have to share this with you. Sue had made a statement to me saying I'm so faithful. This was my reply:
Sue,
You can tell I work with little kids. When I read the word faithful it made me think of "Horton Hatches The Egg." "I said what I meant and I meant what I said an elephants faithful 100%". Well I meant it when I told her I would try to keep her alive here on the boards. But wait, does that make me an elephant? Wasn't the hug from me for Sable on our May thread from an elephant? Yep, guess that makes me an elephant.
As for the rads, going OK. 4 down. First time they gave me 3 tats too. They weren't bad. Next time I got 3 more from a different tech. Those I could feel, ouch! I think my tech just likes to draw on me because the last 2 days he still uses the sharpie. I think when I'm done all treatments I'll tell him to connect the dots.
OMG! Your not going to believe this. I just found this. If I'm an elephant and she is an Oink, then this is us.
In the story Piggie tries hard to cheer her dejected friend. I'm the one thats sad so this book is so true and fitting. Consider this tomorrows tribute but I had to post it now as I will be busy during the day and this was too good to wait.
Enjoy the day, Karin
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Hi women,
Lots of good posting here. Congrats to Jean on final taxol. We are all looking forward to our last chemo treatments (woo hoo!) and love hearing from those of you who already have...Noelle, I sing the body electric too. You are dating yourself with Fame. Really. I am used to drawing on my eyebrows now and depending on my mood in the morning, I can match my eyebrows to it...hmmm.
Angels, how far are you from Seattle in Kelowna? Maybe I could sneak away and bring you a treat sometime...is it six hours? Curious.
Rock, Boulder, Stone, Pepple, come home.
Sable, one more, one more, one more. We'll still feel punk after it, but then no more except herceptin -- a piece of cake.
Those of you whose children started school, my guys start after Labor Day as well. My favorite kindergarten story? When my second one began, I was watching a little girl in tears talking to her mommy. She said, "It's not that I don't want to go to school; it's just that I will miss playing outside and the fresh air." I remember tearing up at all of her wisdom and I wanted so much to say, "Run! Run while you can, honey. You're right. It's better to be in the air and out playing." We are pushing our children too fast too hard these days. What happened to childhood? I have one starting middle school. He is short and scared. He'll be fine. He's the same one who just received a WII from the Susan G. Komen Foundation for being the youth who raised the most money for the breast cancer walk earlier this summer. We had no idea there was a contest. He didn't have a WII. The only game console we had was a Game Cube we bought him when he got his kidney out when he was five. He is trying out for Oliver this week. Hope he doesn't get a big part as he just had a lead last year and it takes up a lot of time. Oh oh...I am rambling about sons instead of cancer. When do we get to say we are cancer survivors? After chemo? After diagnosis? After herceptin or radiation? After cancer-free for five years? What is that protocol? We had the BEST thunder storm yesterday. It cheered me. I know I have been a bit of a downer lately which is good because I am usually an eternal optimist. It means I am "feeling my feelings." I get that I am depressed right now and I will check in with myself in three months to see if things have shifted. If not, I will get some help to shift things. If yes, it'll mean I went through a "normal" depression period. Speaking of periods, I do not miss mine. At all. What should I do with all of those Costco size boxes of Tampax? Save them just in case it all comes back, right? Is anyone laughing yet?
I am working on exfolliating. Shea is too big of a leap....Noelle, is Ahava okay? My hair is coming in more corse than I thought...it's a little softer than before but I was hoping to become a blonde beauty...it's gray and dark brown just like before...hmmmm. Can we talk about Michelle Obama? Did she do a great job or what? And, by the way, Adam asked if she had a mastectomy because he thought she looked a little lopsided. Is it time to stop rambling?
Not yet! I am looking for that next pole dance picture and still planning my September 4 one. Sable, I am expecting a good pole dance from you as well. Talk to you all soon.
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Oh the pressure of a good pole dance! Good thing they stick me in a private room to stab me first... maybe I'll do it then before I get put out in the room of 30+. Might try to con my nurses into dancing with me.
I had tried shea butter once in a flew market.... it was bright yellow... so it means it was dirty?? egads if I had known then yikes. The lady who schmeared me with some asked if I used it cause my hands were so soft..... Nope, I'm a handlotion junkie. I'm so bad that my mom always said she was surprised that I didn't squieep out of their arms when they hugged me.
Finally shaved the top of my head tonight... missed a few spots but got most of it. When those new hairs come in I wanna see them in all their glory. What does hubs do first thing.... calls me kojak. Good thing I love that man LOL. I even exfoliated my chrome dome at the same time. Thought of you noelle the whole time, thinking you'd be proud of me.
As for being cancer free.... I think I will consider that part once chemo is done. It seems like a good point to start. I may ask my doc about it though. Supposidly they got it all out during surgery so that would make be CF now wouldn't it?
We made it thru the first day of 1st grade! He came out of the school all smiles and excited. So that means they didn't lose him or send him in the wrong direction. The principle saw him head towards me and came a flying himself. He wanted to make sure that I knew they did the room testing for sounds (ds is hearing impaired) and the levels were really really good and that he checked on ds himself a few times today to see how he was doing. We may not have to be bears with these people just yet. Last year was a fight to the death..... we won.
Ok I have my swimmies on and I am standing on the bank doing my warmups for my swim next week.... 8 days and counting! Hold your hands out far ladies, with my ass I'm likely to sink like a rock.
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Thanks all! Otter and Noelle, I will be looking for you in the water - Karin, I will reach out for your hand to pull me up to the other side! I am really excited to be finished with the chemooooo.
Kristy & Linda - I was told that I was getting rads due to the chest wall margin of 1-2mm (had a mastectomy as well). What is interesting is that they are doing a large area rather than a specific chest wall blast. Studies at the Mayo clinic stated to hit the tissue above the removed breast in the event any remaining breast tissue may exist. As an fyi, here in MN they only do rads for lymph node involvement if there are 3 or more.
Chemooooooo everyone!!
Jean
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Yeah Jean, good luck together. can't wait for you to join us. Boy I sure remember grade school. My oldest left this morning for her apartment at UW-Milwaukee and my youngest starts her sophomore year of h.s. on Sept. 3.
I have a second opinion for rads next week Thursday. I too had the mastectomy and want the trump card in case it returns. I've being doing a lot of reading though and I believe it'll reduce my risk of re-occurrence.
Love shea butter....my hair is slowly sprouting.
Roxi
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Yellow Shea is a normal thing in the markets in Africa, sometimes it is dyed, sometimes it is Shea mixed with other butters. Don't worry Jen, it was likely fine.Yay for exfoliating your head!
Your butt will help you float in the water, I promise! That is one of the joys of being a female swimmer with a bootie.
Eddie- yes I am old enough to know all the words to that FAME song. I choreographed ( badly) a dance to that song at church summer camp in some long ago and scary time called the 80's. I believe you are allowed to call yourself a survivor on the day of diagnosis, that is what I was told... but it made no sense to me. Ahava is fine, I am not sure what preservative system they use, but I will check for you. Preservative systems are something I will teach you guys more about later. I heard Michelle Obama was awesome last night, I missed it sadly.My BF thinks she is more articulate than Barack. I need to get my shit together and register to vote with Democrats Abroad.
I thought I was going for my first bike ride on the road today( I have been training on a stationary trainer for a few weeks) but I got a flat one block out.... better now than in the race I guess.
I am up too late tonight, and my ds is back from the cottage and sleeping in my bed..... so I will get kicked all night.
Chemooo and soft skin to everyone!
N
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Jean - So glad you chimed in to let us know - Chemooooo!!!! Can't wait for the pole dance pic. I think I missed Linda's.
Karin - I love your tributes to she who must not be named (Otter!! haha!!). And I love the Horton reference, too! We took the girls to see "Seussical" and if you ever have the chance, go! It is so cute. So there is a song that Horton sings about being "faithful 100%". I'll see if I can find it. O.K., here's a link to the album and you can hear some of the songs if you want to: http://www.rhapsody.com/album/seussicalthemusical?pagestart=0
Eddie - You have such a talent for "free associative posting". (I think we should copyright term!) And how great for your son to win something unexpected!! Here's my story for the day from the 4 y.o. She's in bed, surrounded by stuffed friends and blankies and says: "Am I going to have a bodyguard at school?" I think she means "yard duty" which are the people who monitor the kids on the playground at school. Cracked me up.
Jen - So glad he had a good first day! My older dd asked me tonight if there were going to be any "mean" teachers at her new school. She had a hard time in 3rd grade. It was not a good match for her. Really glad that they took his hearing issues seriously, at least so far.
Sherri - Hi and, yes, it is a neat school. She's a bit anxious, but I think that will fade quickly.
Sorry to be so school obsessed. It's a big deal for us this year. Chemooooo again, Jean just for good measure and because it's your last one!!!!! I can't remember if we picked a spot...Randie, do you remember?
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Oh, and here's my rads story. I was told I was having rads before I was told about chemo. So the chemo was a bit of a shocker to me. But I met with the rad onc long before my med onc. When he told us about the tatoos, I said "Can I make them into a butterfly when I'm done?" He just sort of looked at me open-mouthed - I don't think he got my funny!
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Sue,
Have a safe trip. We'll see you when you get back with your babies.
Enjoy the day, Karin
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Thanks! Hope you have lots of smiles today!
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Sable - I made an assumption you were talking about kindergarten! So glad your son had a good first day of FIRST grade. And how awesome that the administration was so attentive to his needs. YAY!
Eddie - My Onc had told me at my first appt with him that I could consider myself a survivor. I wasn't sure that I agreed with him, so just kind of blew it off. I've been reading my After Breast Cancer book and it seems like the more "acceptable" term is NED (No Evidence of Disease). Not sure I am on board with that one either. HOW do you know there is NED? Others like the term survivor because they've made it through the battle of treatment. While others think that the term survivor belittles those that didn't win the battle.*shrug* My very nosy neighbor approached me at the mailboxes and asked if I was in remission. I must have had the most blank look on my face...uh... I can't even remember what I said to him
BTW...Congrats to your son. What he accomplished is so very awesome!
Jean - today is the day! YAY! CHEMOOOOOOO!
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When my mom was dying of cancer almost 2 years ago, she warned me never to use the words/terms "lost her battle with..." and all the other things that seem to get said about cancer patients once they die. She wrote her own obituary to make sure we did not mess it up...I think I get it now.... she meant that all the terms that the "normals" use like survivor and such. I am just not sure I like the terms either! NED is a whole other question!
Is the term "remission" even used with BC?? I have never heard it used.
Cancer Warrier? it is a constant/ life long battle right?
Cancer Hunter?
Cancer Beater? Harry Potter fans might giggle at this one!
Cancer Pirate?
Cancer Murderer?
Cancer Kicker?
ok, I need to get back to work!
Sue... your Dogs may have new tricks to learn!
read this everyone!
http://www.physorg.com/news138965392.html
Jean, I have my swimming togs on, waiting to sight your entry into the river
chemooo y'all!
N
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Dooooooooooooooooone! Thanks to Otter & Noelle for helping me stay afloat in the water and getting me to the other side! Thanks Karin for the tug out of the water. Hello to all that are already there and I will cheer on the rest that are still on their way.
Picture to follow. Jean
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Yay!!!!!! Welcome to Camp Recovery Jean... the hot tub is over there! Dinner will be ready soon!
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Way to go Jean !!!!!!! I'm hoping your last round of SE is minimal
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Congratulations Jean! You are done! Yee Haw!
WBC's down, Hgb still down--and I've got until December before I am done--but I am halfway there!
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Jean,
Welcome to the other side. So glad you made it. Looking back I bet you thought this day would never come.
Enjoy the day, Karin
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Congratulations Jean! A day to be celebrated!
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WOOOOHOOOOO! Way to go jean!!!!!!!!!!!!!!!
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