August 2010...anyone starting chemo besides me?!
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Calamtykel: I did not hear anything either but unlike you, my results were supposed to be in on Monday, today at the latest. I am only pretty sure I am going to be ambushed at survivorship clinic about this matter.
Ckptry: you are correct, Carolyn. Check your PMs.
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Well, I heard from my doc but still no results. He said he will find the results tomorrow. I am really thinking about skipping the survivorship clinic! I am really concerned the onc's office has my CT scan results and are going to pull a "here is the menu of the next step(s)" deal on me!
What has got me on edge is the tech reminding me my last CT scan showed nothing in my liver! Thanks.
BTW, guys, it is entirely feasible one of us from this thread is going to join Tex in Stage IV land and that could be me or any of us. It is just the facts with the big C!
Let's just stick together, roll with the next punch and hope for the best. Lady has a second primary, Rachel had a second primary and I could have mets...or not. We don't know but don't be scared as I will remain your FEARLESS LEADER! .....the not knowing/waiting part really scares your leader, however!!!!!
Ckptry: "Bridesmaids" was hysterical and "Horrible Bosses" is a must see!
I am going to watch "The Lincoln Lawyer." Yes, I am a huge McConaughey fan...if he was in silent films it would be even better
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Lizzie....here's to getting the results ASAP. I always think that if there was something...they would call right away...they did in my cases. Just sucks this waiting. I have my onco checkup at end of month and am hoping for no bad news. It seems like every time they do a test in me, they find something else...Urrrggghhh. Sending hugs for clear scans.
I took my MIL for her chemo prior to leaving for vacation. It was strange being there as a caregiver instead. We sat beside someone just starting chemo for breast cancer. I can remember that first chemo and the fear of the unknown. We chatted for so long...my MIL slept most of the time. My MIL is stage 4 colon that has spread to her abdomen and lungs..she is on chemo every two weeks. Makes me remember to enjoy each day.0 -
Good evening all!
Lizzy and Cal - thinking of you both and sending good vibes for great news tomorrow.
My mammo went well last week, good pap result but now have a cyst on my ovary. Need to go back in three weeks. I know how the "what ifs" and "what is that pain" thing goes. Today it is one thing, a week from now it will be something else.
Miss getting to be on here as mauch as before. Prayers to you all.
Michelle
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Rachel: very good point and thank you for centering me! If it was bad news I would think they would have been in touch sooner as well but, you see, I just tore off my "logic" hat and slapped on my "I am going to have a break down" hat!!!
That must be rough going with your MIL. It must be rough just being back in that chemo room. It is so nice of you to go with her and support her and based on what I know of your character, you would not have it any other way. She is lucky to have you.
Mommichelle: thanks for the good wishes and same to you. Geesh....every test brings a new challenge. I will be so glad to be done with the plastic part of this situation and be done with cancer for a few months.
BTW, it looks like we all go to the same hairdresser now!!!!!!! We all have the same look! You have to laugh...it is better than the opposite!
OMG..in a very disturbing turn of events, I am starting to look like Christopher Walken with this hair!! Now it is growing upwards!!!!!!! It is horrifying. I suppose I should get it cut but I don't want to part with any of it!
Hey Gabe Kotter over there on LI (Sptmm), try and beat my new look! The Christopher Walken special! I am getting afraid to look in the mirror!
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Lizzy - For what it's worth, when my onc PA does a test she doesn't call if it's OK.0
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Lizzy and Cal- here's to a good long restful sleep for both of you tonight. And for good news tomorrow. Big hug goodnight.
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Hi Everyone!
Lizzy and Cal: I just wanted to post quick to send you all the positive vibes I can muster. Hoping you both get good news tomorrow!
As for the hair Lizzy, I am still looking like Gabe, in fact in the car tonight my son asked me why my hair wasn't growing "down" like it used to be, but rather "out". I just shrugged my shoulders and said that I didn't know, I could only hope that soon, gravity would begin to take it down..LOL! And this hot and humid weather is not helping any!
Sweeney, it's great to have you back.
Rachel and Tex: Glad to hear that your vacations went well, I hope you are both well rested although I suspect that Rachel is not..that Disney is anything but relaxing..LOL! Tex, your vacation sounds perfect. Right about now, there is nothing I would like better than to just "hang around", visit, and have fun!
Okay everyone, I still haven't had a chance to catch up so I hope I didn't miss anything major. I haev to get to bed now or I will be unable to function tomorrow. I am awful these days if I am not in my bed at least 8 hours, as that usually equates to 5 hours of actual sleep...ARGHH. Hopefully I can catch up over the weekend.
Good night everyone,
Debbi
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I am keeping all of you who are waiting in my prayers.
Lizzy your silent films comment regarding Matthew McConahy had me on the floor. Then... you come along with Christopher Walken hair, too much!
Me, my hair is still clown hair, out in little ringlets in all directions.
I go for my first physical, since long before BC,. tomorrow. I was supposed to go last month but blew it and had to wait a month to reschedule. I must go. I don't want to go.
Has anyone else had their fingernails grow like crazy since being on Arimidex and all the vitamins? I look like I have painted on nails. Crazy, they are all long.
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Lizzy -I've discovered hair bands and little mini hair clips - the kind that are spring jointed with teeth. I need this to keep my hair "down" -it's huge on top! I keep wondering when it will start going down instead of up.
It's really fun when I get out of the shower though - I can do this wild thing where it spikes up like 3". I should take a photo because it's scary and funny!
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Rachel - I hear ya about being on the other side of it. About a month ago, I attended a funeral for a lady in our church who had died of cancer. I knew her daughter and had even seen them at the cancer center a couple of times while I was there. My mom was her caregiver on Mondays between the time the daughter went to work and hospice arrived. She was stage IV from bladder cancer.
It was odd to be at her funeral....but also peaceful. She died very peacefully, looking forward to going home to her Lord and Savior and was okay with that. She took one deep breath and just passed into eternity without any pain. Lizzy - that's odd that they aren't in or that you weren't called; I would think if there were something really wrong, they would have let you know ----ru going to call today or just let it go (like I'm doing
I never did call for my tumor marker bloodwork. Now it seems so long ago - I was anxious for those first couple of days and then decided I wasn't going to call at all, so I never did and that was six weeks ago.Gabe Kotter......I remember a Saturday Night Live epsiode in the 90's where they spoofed Beverly Hills 90210 - the guys had ridiculously high hair like they did on the show; and had a "hair fight" where they were stabbing and poking each other with their hair. I think we should have a hair fight!
Mommi -- sorry about the cyst. If you missed it, I had an endometrial biopsy last Wednesday because I had my period for 15 days. It really does never seem to end, does it? I had a friend who developed benign cysts on her ovaries and uterine fibroids from tamoxifen shortly after she started on it, and they were harmless - fingers crossed that's what it is! I think we get watched like a hawk once we've got the C word on our records!
Here's hoping everyone has a good one. Taking the kids to Land of Make Believe. PRAYING the water slides aren't too crowded because I wanna go down the giant toilet bowl thing a few times!
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Good day warriors-
It appears my CT scan is inconclusive and now they want an MRI which, of course, I can't have because the deflated TE is still in!!!!!!!! PLEASE, readers of this thread, spread the word: NO IMMEDIATE RECON! Wait until after mx/bmx to see if you need chemo and/or rads and only then, after chemo and rads is done, consider recon. Just do the extra surgery as it could very well save your life.
Ginger: I look atrocious! Not only is my hair reaching for the stars in this Walken-esque look, now I have dark circles from not being able to sleep much for days while waiting for results!!!! I am almost embarrassed to go out AND I am avoiding people! At least you have attractive ringlets and clown hair! My niece told me my hair looks cool because it is growing upwards in the back!!!! I think I am going to wear my wig again!
Calamtykel: I hope you have such a good time at the park today and ride fly down in that toilet bowl water ride to your heart's content! You all are lucky you have kids....I look kind of odd at the water park!!! I can't believe how much my hair is growing upwards! I was holding my great niece the other day and I wondered why her new hair is growing in "normally" and my new hair is looking like heat miser!!! Geesh...someday perhaps I will be proud of my appearance again!
Kel, that was when SNL was still funny! What has happened to that show?! I was thinking that perhaps we should organize a short, perhaps 3 day cruise sometime next spring for the girls from this thread. Maybe we can bring wigs and have our hair fight then!!!!
I am going to see if my nephew has baby hair clips for my great niece yet and, if so, I shall take a few today! Reduced to borrowing my 2 month old niece's hair clips who probably has not even had a chance to use them yet!
Mommichelle: cysts, boo hiss!!!! All these little innocuous things are enough to scare our post-bc dx hair regrowth off our heads!!!!! I hope all is well for you. Please keep us posted.
Sptmm: I hear you on the 5 hours! Man, I look like a raccoon. Plus, in an attempt to knock myself out, I was doing laundry and on my treadmill at 2AM! Then my friend from high school wants to come and visit Sunday! Perhaps I should tell her to wait until October 31st when she won't question my look!!!!! That is soo funny what your son said!!!! Why is it growing out?!? Oh man, the accidental abuse we take!
Omaz: I am still hot flashing it up over here! All night....oh well...I was told I could not take black cohosh? For women who all have pretty similar variations of the same disease, we sure do get different information/advice!
Well, I must get ready to go to my survivorship clinic! I am hoping for no ambush! I also hope I don't fall asleep in the shower.
Calamtykel: I travel with an Ipad or my little travel computers and always have internet on the road via those or my blackberries. Please post when/if you get results today. I will be thinking of you and, as always, sending the most positive vibes ever!
Good day, girls-
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Tex: where are you?! I hope to hear from you soon, woman! No pressure, no pressure!0
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Lizzy - A new study just came out saying it was ok to do the black cohosh.
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Lizzy- I would say that inconclusive is good news...physicians are usually pretty confident when they see what they know is cancer. I remember that when I was getting diagnosed- they knew right from the ultrasound (and remember my lump was 1.1 cm, so could've been a benign ductal thingy). But nope, they knew. They'd seen so many of them they could just tell. So I'd say if they're saying "inconclusive" it just means that they don't want to be wrong 5 years from now when it's too late. They may think "nope, not cancerous" but want to have back up before they declare it. Again, I was really blown away by their ability to read the scan so conclusively in favour of cancer- it was an ultrasound! I was demanding an MRI, which I eventually got, but only to give them the clearest picture possible for the surgery. Add that to the soup of thoughts you've got going on in your weird-haired noggin!0
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p.s. what is black cohosh????
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Lizzy: Enjoy your survivorship clinic, hopefully being busy will take your mind off the scans for a little. Since they can't do the MRI, what will they do now? Maybe while at your survivorship clinic you could ask one of the professionals for all of us, how we are supposed to cope in this world where every ache and pain you feel, in your mind, could be cancer. I could certainly use some new coping techniques. As for the hair clips, as a joke at Christmas my kids bought me a bunch of little baby hair clips, the problem is ALL my hair is sticking out so the clips only hold down little pieces...don't work too well.
Omaz: That is interesting about the black cohash, because I too thought you weren't supposed to use it. Isn't it so annoying that there is so much conflicting information out there! Luckily my hot flashes are just warm flushes so they don't really bother me too much. Although, I read somewhere that the worse your hot flashes are, the better the Tamoxifen is working, so in that case I am not lucky, cause it looks like my Tamoxifen is not working too well.
Ginger: Good luck with your physical. Make sure you go!!! I know you gave us step by step instructions on hair coloring dos and don'ts but I can find them. I am thinking about coloring my hair soon, a little lighter. I know you said something about only going a few shades lighter..but could you please advise. I just want to lighten it up a bit, and cover the nasty gray patch in the front.
Sweeney: Love that avatar pictures, you look great!
I second Lizzy's idea....I think we should look into a short cruise sometime next Spring...Chemosabes and Radical Warriors on the Sea!! It could be like a huge pajama party like back in the old days! Maybe by then, we will all have nice normal hair, or they may just call it the "Bozo" cruise!
Hope everyone is having a great day,
Debbi
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sptmm - My hot flashes did not change with tam. I started having them after the first chemo and have had them ever since. I am just now starting to lose that slightly nauseous feeling I was getting just before one started.
sweeney - I don't know very much about black cohosh except that it is supposed to help with hot flashes. I also thought we were not supposed to use it if ER+ tumor but now my onc PA said they have new data.
I am wondering if this might be the new study, but I don't know.
Black cohosh (Cimicifuga racemosa) in tamoxifen-treated breast cancer patients with climacteric complaints - a prospective observational study.
Rostock M, Fischer J, Mumm A, Stammwitz U, Saller R, Bartsch HH.
SourceInstitute of Complementary Medicine, University Hospital, Zurich, Switzerland.
AbstractObjective. The antihormonal therapy of breast cancer patients with the antiestrogen tamoxifen often induces or aggravates menopausal complaints. As estrogen substitution is contraindicated, herbal alternatives, e.g. extracts of black cohosh are often used. Design. A prospective observational study was carried out in 50 breast cancer patients with tamoxifen treatment. All patients had had surgery, most of them had undergone radiation therapy (87%) and approximately 50% had received chemotherapy. Every patient was treated with an isopropanolic extract of black cohosh (1-4 tablets, 2.5 mg) for 6 months. Patients recorded their complaints before therapy and after 1, 3, and 6 months of therapy using the menopause rating scale (MRS II). Results. The reduction of the total MRS II score under black cohosh treatment from 17.6 to 13.6 was statistically significant. Hot flashes, sweating, sleep problems, and anxiety improved, whereas urogenital and musculoskeletal complaints did not change. In all, 22 patients reported adverse events, none of which were linked with the study medication; 90% reported the tolerability of the black cohosh extract as very good or good. Conclusions. Black cohosh extract seems to be a reasonable treatment approach in tamoxifen treated breast cancer patients with predominantly psychovegetative symptoms.
What does THAT mean???
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I was on black cohosh I believe, before I was in labor with my kids. It's used to stimulate contractions or something. My midwife had me on it. Also my osteopath recommended that I take it for hot flashes but they flashes pretty much stopped - -or they stop and start - depending on my menstrual cycle, so they're not too bothersome. I'm pretty sure it's safe - he's been practicing medicine for over 50 years!
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Hi, I had talked to one of the drs at the alternative medicine center at MSK about using a supplement (can't remember what it was now:-) during chemo but they had no data on it. He did give me a link to their website. I know years ago we used to tell women that taking black cohosh was like taking unopposed estrogen and could cause thickening of the uterine lining. This was before the studies found HRT (estrogen plus progesterone to cause bleeding) was linked to heart disease. We did tell breast cancer patients that they couldn't take it but it looks like they're not sure now.http://www.mskcc.org/mskcc/html/69140.cfm I see my onc on Friday and I'll try to remember to ask her.
I have my MRI tomorrow. Hoping it just shows plain old herniated discs. My turn in the waiting room:-)
Carolyn
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omaz maybe psychovegatative is a fancy name for chemo brain;-) Whatver it is it doesn't sound good.0
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ckptry - Doesn't does it!0
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had an awesome day with the kids - you know you're still a kid when you want to go on more water slides and they're ready to go home!
no biopsy results - will have to call tomorrow........
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psychovegetative?! I think I've been that once or twice....or maybe most of the time...........
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Good evening warriors!
Survivorship clinic was good. It was interesting and it was good to see them all again. The only thing is I thought we were supposed to have 4 sessions but apparently today was it. I did ask to go back and see the nutritionist so I am allowed a 3rd visit. I really think it was 4 times when they started it and now it is down to 2. All the chiefs seem to indicate it was only twice at inception but we Indians seem to all remember that it would be 4 visits?! Alas, it was a good experience.
I guess on the CT scan, because we can't MRI they are going to do another sonogram. We now have a baseline sonogram and I guess they would be doing another to see if that "thing" is changing/growing etc.. . I guess time will tell. It is just living with the suspense of "no idea" that is killing me. Also my APRN told me that a liver biopsy is really kind of dangerous. I had no idea. It really depends on where the mass is as to whether they will biopsy at all. As always, I remain cautiously optimistic!
Calamtykel: great new avatar!!!! That is funny about you wanting to go on the slides more and the kids wanting to go home! That is great! Glad you had a good time. Please let me know what you find out tomorrow. I guess it is really good that they are not buzzing us up with results right away as, like everyone here said, if it was bad they would undoubtedly be right on it. I think we have dodged a few bullets here, Kel!
Sweeney: thanks for the info on the how docs pretty much know when they see cancer. I mean they have been processing millions of us for decades now...I would hope they can recognize it on a scan!
As for my weird hair, my sister encouraged me to take off my sun visor today and my sunglasses so she could see my heat miser hair!!
Sptmm: Deb, why don't you put ALL the clips in your hair each holding down 10 or 12 strands!!!! I promise you I will come visit you at Bellevue!!!
This entire bc deal is making me psychovegetative! I swear, I cannot wait to put this behind me, to get these last surgeries done and get back to my life. I am officially TIRED of bc and all the nonsense. I have a life to get back to. It is unbelievable how tired of all this cancer crap I am getting. I need these new boobs fixed up, get it over with and move on! Geesh...I hope this is all done by the end of this year. I want a cancer-free 2012!
I hope you all have sweet dreams-
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Morning Everyone!
Lizzy-My hair has grown back in just as thick as it was before, therefore I would have to go to a few CVS stores and buy out their whole stock of kiddie clips to hold it all down..LOL! Hats work great, except when you take them off and look decidedly like Bozo the Clown with flat hair on top and the rest of it flaring straight out right above your ears! BTW..bellydancing is a blast! I am getting really good at rotating those hips..LOL!
Psychovegetative?? Not sure what it means but I would be insulted if someone ever referred to me as psychovegetative.
Carolyn: Good luck with your MRI.
Sending everyone positive vibes who is awaiting test results! The waiting room is full!
I am going to the surgeon today, decided to have them try and aspirate the seroma because I really don't want to have more surgery. That would definitely interrupt my workout schedule and I am having sooo much fun. Hopefully aspirating it will stop the drainage.
Have a great day everyone!
Debbi
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Lizzy: Ditto on what Sweeney said. When the radiologist did my biopsy, she knew exactly which spot in my breast to biopsy and she also took a piece out of a lymph node, which turned out to be my only positive lymph node. She knew where the cancer was by looking at the ultrasound!
I was given the OK to use black cohash for hot flashes, but it didn't do anything for me, so I quit using it.
I googled psychovegetative. I still can't figure out what it means!
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I am here
Funny cuz my hubby had his week vacation then only went back to work for 2 days then had his reg days off...Lizzy that sucks! I agree immediate recon may not be the best idea for women because of just this. Hopefully the sonogram is able to determine if this thing is good or bad.
Your comment saddened me about one of y'all my join me in my stage 4ness LOL i know the stats are in that favor but it just SUCKS!!!! only since getting put on an antidepression last month have i stopped crying myself to sleep most nights. Which is good
It does get to ya you know!ALso my hair just will not stay down!!!! No amount of product or anything! i tried wearing a really tight head band when it was drying so it would stay like that but NO of course it poofed out still LOL It is starting to be as long as my ear lobes- i decided against trimming it cuz its growing so slow and i want to be out of this odd hair length as soon as i can!!!
Kel any word?????
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I met a lady in the infusion room Tuesday who was 14 years out from stage 3 with 5 positive nodes. She had surgery, chemo and tamoxifen.
Also, I don't know if you remember but I told you about my friend with uterine cancer - well good news, when they removed it it turned out to be 'regular' uterine cancer and not the aggressive type and it was very small so she doesn't have to do chemo or anything. However when they did the pre-surgery CT scan they found what they think is renal cancer and she is going in for another surgery next week. They said it was fortunate that they thought it was the aggressive form of uterine cancer because that is why they did the CT scan and caught the kidney mass, with 'regular' uterine cancer they don't do the CT I guess.
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