Chemo in Sept 08
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I'd post it here, but I'd probably get banned.
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I am drinking the glop for colonscopy now. It hasn't "hit" yet, but I'm close to the bathroom.
I am starving.
ugh.
Spring.
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Beverly - I don't envy you at all!!! Good luck, sweetie!
Robin - I was told to put stuff on my radiated side 4 times a day now. What are you using?
back to typing reports.
hugs
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Bev: I'm sorry that you have to go through that...I'd rather be glued to the toilet than have to drink that stuff. Is it less than a gallon, like it used to be? Hey... thanks for your comment on my verbal vomiting on FB! I have a couple of friends that are urging me to write a book.
Juli: I'm using RadiaGel before and after I get blasted, and when I'm home, I use AquaPhor because it feels like my poor nipple is gonna explode. They keep telling me that the skin looks really good. No peeling or blistering so far...I'm hoping to miss that part!
For those that aren't on FB, I'll post it over on my blog...and just for clarification, I'm not referring to any of you in my blurb. I'm mainly speaking of/to the new posters and how they get all caught up in the whining and "I've heard" crap. This group, Chemo 08 was different. We researched. What little whining we did was all when we were each at our low point and we bounced back pretty fast. What I mean to say, is that our group is comprised of fighters...not whiny, wussy women.
I love you all.
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I saw my med onc for a follow up today. He put me on Femara. He did some bloodwork and will do chemo markers. I talked to him about the information I read that ER+/PR- has a poorer response and he said that was true. I asked about frequent mammograms on my remaining breast and he said that he was more worried about mets than a new primary - how encouraging! He must be somewhat optomistic, though. He said the port can come out. I see him again in a month.
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Jane - I was also ER+ but only by 20%.....all the docs say the hormone meds (like tamox.) won't really help as I don't have enough hormone markers ...???? They haven't said anything about any scans or blood work.
Spring - Soooooo sorry, it will be ok. You can eat all you want after the colonoscopy. My dh's doc was a client of mine and took us out to dinner after his !!!! LOL He was starving too !!!
Robin - hope you are ok, I will pop to face book to check it out !!!!
Trude
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Hi Girls,
Robin, pls pm me so I know what is going on or send me the link to your blog.
Spring, why are you having a sopy, is it just routine? I have one a while back, at least you are asleep, when you wake up you can pretend it never happened.
Genia, where are you in the treatment plan, what happens next and are you all healed up?
Trude, before I had my chemo my was 70% ER and PR postive, but after chemo it went down to less than 20%, very dissapointing, but my oncol said it is definately still worth taking tamoxafine, I asked him about it last week and he was quite insistant that I should have it.
As far as the scans go, my oncol and surgeon said that it is in the first two years ithat the cancer will come back, IF it is going to, that's why they want me to have regular scans, I was stage IIIc with 10 nodes positive, so he doesn't want to take any chances. I feel completely confident that it will not come back.
Juli, you take care and don't work too hard!
Where is mina?
All is well with me, I went to a fashion show last night which was fun, especially as there was champagne there! I am off to England at the end of the month, I can't wait to see my son again.
Take care everyone. Singapore Chris x
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Bev - how did the procedure go?
Genia - How are you feeling, g/f?
Trude, Jane - I have no idea what percent I am for ER & PR. Should I ask?
Chris - Yay! you get to see your son soon!
My 25 yr old son and his g/f are making plans for my b/f and I to all go on a weekend Carnival cruise to Baja together in November or December. This will be my 1st cruise.
Yay for having things to look forward to!
hugs!
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I'm ok Juli....getting ready to go to see the RADS Oncologist. This is my first visti with her. Then I have to have my Herceptin afterwards. Yaay......getting back on that herceptin will make me feel safer. Not sure I will be........but at least it's a safety net for me. Not looking forward to the radiation.....but I gotta have it too.......sooooo.
That's great you get to go on a cruise. I always wanted to go on one. My sister goes every year with my her daughter and her family. I may be a stow away one of these days.....lol
Chris.....glad you get to see your son. I know it has to be hard to live so far away from him.
Hey Trude.....how's your incision doing?
Gotta run....love you all
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I survived my first colonoscopy, (Chris just routine, turned 50 last year and was about to have it when the BC diagnosis headed it off at the pass!) and am pleased to report I officially have a clean and clear butt! Not even a pollyp, but I do have hemarhoids and a fissure, but I didn't need this scope to tell me that! LOL. He says to go back in 5 years for another, thought it would be sooner given my history of BC.
Jane, What has a poorer resonpse when ER_, PR-? Femera? Get this: Biopsy showed I was 90% ER 90% PR. Surgery analysis said 90% ER and 0%PR!! WTH?? odd huh? So far so good for me on teh Tamoxifen.
Juli, Cruises are fun! You will like.
enjoy. You will gain weight!!!! Oh well! Worry about it later! 0 -
Hey ladies...
Home from the Herceptin infusion and my appt with the RADS Dr.
I absolutely LOVED her to pieces. Talk about smart.....I met with her for over an hour. She had my path report and she went over it with me. She told me that when my surgeon cut across the bottom of my breast.....he cut through another tumor. He took what he could take.....but there were no clear margins. So as she said....."He gave her the hot potatoe"......meaning he could not remove all of it because of not having clear margins. So there are still cells left in there. She is going to do 25 rounds of radiation....and 10 boosts. I also found out my tumor went from a grade 3 to a grade 1 after chemo. I go back to her next Weds for my simulation and then they will make the appts for my radiation. She did tell me she thought my prognosis was very good. That made me happy. My rads will be from my neck down to under where the right breast was. I don't know the technical words....but basically that's the area. She also said she wanted to see RED......especially with the boosts! She said that let her know it was doing it's job.......OUCH! lol
I got my Herceptin today......my bones are aching......don't know if it is from the Herceptin or not. Only took an hour from start to finish. That included the benedryl, tylenol and my saline flush. Not bad every 3 weeks.
Beverly....glad that is all over with.....did you go pig out??????????? lol
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ER+/PR- tumors represent about 10% of all tumor presentations. These tumors do not respond to Tamoxifen. That's why he put me on Femara which is an AI. Actually, they are finding AIs better than Tamoxifen overall, but you can only take it if you're post-menopausal. I've also read that women with ER+/PR- tumors have a poorer prognosis and my onc said he has read those reports as well. No one seems to know why, though.
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15 more rads to go!!
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Genia,
Your surgeon didn't mention that he didn't get clear margins??? I'm guessing it is on the skin side that he didn't get the margins. Just as well I suppose, because it sounds like your rad onc did a much better job of explaining the plan. You didn't get expanders, did you? So you will get clear margins through radiation. BTW, my rad onc also said she is looking for my skin to turn red. She said if it doesn't there is something wrong with her machine. Still using aloe, and to be honest, no real reddness yet. I just finished #11.
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Colleen....no I didn't get expanders. Not sure if I'm goin to.
My surgeon tried to explain everything to me about the tumor.....he did mention something abou it being all the way to the bottom of my breast. In other words 2 spots....one at the top and one at the bottom. She said the one at the bottom was ILCS. The one at the top was ILC. Not sure about the margins either....other than she told me today he didn't know which way to go taking out the tumor to find clear margins and I guess he didn't want to take anything that wasn't necessary to take. Makes sense to me.....not sure how it was missed on the MRI tho. This whole thing has been a mystery from the get go!
Good for you Robin....keep up the good work g/f!!!
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I didn't get red until my 25th rad...then it really took off.
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Hey ladies!
No, I didn't actually fall off the face of the earth this last few weeks! I'm still kicking (some days higher than others).
It's been busy around here-- Spring break and out of town the first week. Second all energy went into Dinner Theater at church. This last week I had my Dad over from Texas and my Sister up from Miami for easter week. Whew!
Now I can stop and breathe and take a moment to catch up with you girls! Great big hugs to you all. I've thought about every single one of you.
Take care of yourselves!
L
btw: The pic is me two weeks ago on Spring Break Vacation. My hair is coming back in curly! I've had stick straight hair my whole life. I'm loving it.
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Just came by to say hello...I'm scheduled to start radiation therapy 4/29/09. The tat process was interesting..no pain...and I know I prefer it to black permanent markers. Do patients get tatted with permanent black marker for radiation , did that ever happen and my brain forgot until just now. That's a painful sentence.
I took notes to talk here but my R arm is kicking my arse, I think holding my arm over my head for nearly an hour Tuesday might have started a little Fibromyalgia trigger madness. I have an appt. with my rheumy next Wednesday and will ask him for trigger point injections so I can clamp down on this pain pre-radiation.
Yeah.... fellow travelers...no Breast Cancer on the Mammogram this past Tuesday, none detected in my Thoracic spine. I'm fully scanned and tatted for Radiation. My Oncologists apologized as did her nurse for making me nearly poop my pants when she told me she felt something??? last Friday evening.
Why do our Oncologist's insist on telling us alarming things? I don't want to share all her thoughts. My friend told me it was nearly time for my yearly mammogram...June...so she could have just scheduled it, but NO, she had to tell me that she felt something... TY Wink...Scar tissue is what she felt perhaps; I don't care as long as I'm getting better every day.
I enjoyed reading the discussion about our chances of getting this disease again and I have to be a 1/2 full gal...I stopped my own treatment to get better treatment Thank God I did and had the money to buy a Medicare Supplement.
I miss posting on Decadron...nothing hurts. My Onc told me some of her Arthritis patients love the pain relief we get from the roids...I would love it too if I weren't so hyper and if I weren't Diabetic.
Sharing my weight story now that I am over the terrible twos again. I lost 67 lbs in Overeater's Anonymous in 1991 and gained it back on Prednisone in early 2000s. I was like, "Listen God, don't you want me to be a thin gal." I was like Oprah, without the money, whining and mad as h*ll at being back up over 200 again. I've tried unsuccessfully to lose it again:(
I met and started talking to a man on my elevator and out to the bus all about my BC, my weight gain
lol ( poor dude) Well it turns out he has a job at the local YMCA. He gave me a day pass to come over and take swimming lessons again. I became phobic when some idiot playing in a lake pushed me over backwards. I swallowed lots of water, then came panic/stress etc. I told him to look for me in a few months. How wonderful of him to offer me this free pass.Jane, your Onc is (&^%%&^*^&)*()*)*(. +++++...I hope you get rid of him real soon.
This Breast Cancer is tricky...I've read on other forums about Mammograms missing the tumor. Thanks for sharing your stories with us...I need to hear them so I can get better at doing my self-exams.
nitenite everyone and lots of hugs to everyone,
mina
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Hi Girls,
Genia, pretty shocking news, but I am sure the rads will take care of it.
Mina, thank god you are all clear, excellent news.
Tanz, great to SEE you, you look wonderful in you new curly hair.
Take care girls, Singapore Chris x
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Genia, didn't pig out! Trying to maintain some of the colonoscopy weight loss! ha.
Jane, I am ER+/PR- and an extreme metabolizer of Tamoxifen, and taking tamoxifen. I will ask my ONC about it in July. I am to move to an AI after 1-3 years. When I was first diagnosed, the tumor was ER+ (90%), PR+ (90%). It all seems strange to me how it changes. Makes you wonder. Can you please point me to the research on this? I don't want to be taking Tamoxifen if it is not working!!! (I thought given I was an extreme metabolizer, it would work really well??) I need to understand more...
Genia, LCIS is "in Situ" so not invasive, right?. She will blast it with Rads, right? It is good we do all these things, chemo, surgery, rads, drugs. It's a multi-pronged approach... GLAD YOU ARE GRADE 1!!! Woooo! (stupid, slow, dumb tumor cells, not spreading! )
Tanz, as Chris said, good to see the hair!!!
Mina, Mammogram and ultrasound missed my tumor, so that was part of the reason I was more comfortable just removing as much breast tissue as possible. I have no regrets, but it is such a personal decision...
Spring.
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Lei - Good to see you and the new hair! It's good to be busy with stuff that's not bc related.
Mina - I found my lump with a self exam, but hadn't had a mammo in 6 or 7 years. Bad me...
Ct scan of my lungs today, but won't get results till Thursday, when I have a dr appt.
TGIF!
hugs
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Janie pooh - I found the reasearch on TAM and ER+/PR+ vs ER+/PR-. Have shot a question about this and a couple of other things to my ONC's office. I'll report back.
Good luck on the scans, Jules!
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Beverly....I think I got the letters switched around on the second cancer he found. lolol...........I'm so dumb when it comes to some stuff. Yes....it is in situ! Even so....with no clear margins....it is a little scary.
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Spring- Yeahhhhhh!!!!! Great news.....well at least the part about no polyps....LOL. After alot of discussion on Tamox...AI, my bc surgeon (the one from Stanford) was not impressed with the results of AI's. She felt the testing was not good enough and there was not enough proof of good results. Drug studies are such a crazy thing. You may be better with the Tamox.
Genia - My incision is pretty well healed now. I go the the surgeon on Monday, he had the nerve to go to Tahiti for 2 weeks, so I still have a few stitches in.....and my dumb DRAIN!!! He didn't want to take it out before he left and me have problems while he was gone. Especially since my incision was healing so slowly. But no infection and it looks really good now....
Juli - if you want your percentages, it should be on the extended pathology report from your biopsy. It could help you as you look at treatment choices.
Wow, we sure are a busy group, I miss for one day and there is almost a page of posts!!! Robin is right when she says we are a group of strong women. The support we offer each other is such a blessing.
Happy Friday .....I go back to work on Tues.....bummer
Trude
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Mina-- my lump showed on neither my mamo, or my ultra sound.
It could only be felt... Thank God I had a Doctor that believes in jumping on anything 'abnormal'. Also, lemme smack your Onco and Nurse around a bit with a fish! We have to deal with enough without getting the beejeebers scared out of us for no reason!Beverly and girls-- I'm ER+/PR- too... after reading your posts about it. I went looking for the research myself. From what I've read.. it says that findings show my PR- tumor/cells would be relatively Tamox resistant.. I'm on an AI.. which makes me wonder if I'm wasting my time with it.... Maybe I need to do even more research!
The weather is beautiful here! The sun is out, a breeze is blowing and the high today is around 76! Whoot!
Genia-- Just what Chris said! God Speed to your upcoming Rads and may they wipe out anything that even might think about being suspicious!
Trude- Still having your drain has got to suck! Sorry, chica! Remember-- this too shall pass.
Juli- Wishing for clear results on your lung scan! And a cruise sounds wonderful. I've never been on one myself, but it sounds like lots of fun!
Robin-- I'm assuming that by now, you have 16 more to go! Sweet! I commented on your post over on FB-- Kudo's to you for speaking your mind. Sometimes it helps to just get things out!
Much Love!
Lei
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Trude, I cannot believe the 2 weeks with drains , ahhhhhhhhhhhhhhhhhhh!!!!!! Take a deep breath. What else can you do? ugh.
I know I will eventually move from TAM to an AI, that has been the plan all along. Given I am an extreme metabolizer, my onc thought this would be good for a bit. I have mailed the nurse my questions. Also. When I had my tumor surgically removed, they tested again for Her2 status. and Could not figure it out. Then they send slides home (I had surgery in another state) and THEY could not figure it out either. My ONC was supposed to dig more, I don't like this! Especailly reading that PR- tumors are more aggerssive and more likely to be, what? HER2 + ahhhhhhhhhhhhhhh!!!
This is bumbing me out. I was feeling so good to be an extreme metabolizer of Tamoxifen and to be DONE with everything and have no side effects from it, at least YET. Now I am not sure! I hate not being Sure!!!
Moooooooooooore. Waaaaaaaaaaaaaaaaaaaaaaaaaaating...........................
ahhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhh.
Spring.
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One of the links came right here to the bc.org site which stated that ER+/PR- tumors "occur in 10% of all breast cancers and only have a 33% chance of responding to hormone therapy" (it is under Treatment and Side effects - hormone therapy - what is hormone therapy - what role do hormones play?)
Here are 3 other sites I found that all said the same thing. It concerns me a little, but if I worried about all of the variables that might predict my outcome, I'd have time for nothing else. I've read that women with bc on the left have worse outcomes, women with bc in the inner aspect of the breast are worse, ER+/PR- worse, etc.
http://www.medscape.com/viewarticle/553850_3
http://meeting.ascopubs.org/cgi/content/abstract/24/18_suppl/514
http://www.ncbi.nlm.nih.gov/pubmed/16145046?dopt=AbstractPlus
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My new heart medication has me a LITTLE worried. I was researching it tonight because I suspected it was not generic (my ins will charge me $120/mo for it). My onc gave me 20 free samples along with the script. I discovered " What is the most important information you should know about Coreg CR? You should not take this medication if you have asthma." This is the same doctor that tried to give me a stress test last month that asthmatics can't have and luckily, the nurse asked just before it started, "You don't have asthma, do you?"
My cardiologist is trying to do me in!
Luckily I've only taken 3 of those pills. 0 -
Hi girls,
Juli, that is shocking, can something be done to get that doctor to retire early, he is clearly not thinking straight. the less you have to do with him the better. Now you know so much about your body, you should be able to protect yourself!!!
Step back ladies and remember that whatever you have you have, whether it is ER+ or PR- cannot be changed. Do not stress out, it seems that at the moment, too much information is not a good thing. You will all be alright, we will get through this, worrying is not good for us. Thank god we have these boards to throw our stress at! My oncol is one of the best in the world and he says that he thinks that taking tamox if a good idea, now matter how low you status is. We need to do all we can to stop this coming back. Springie, you were just getting it together and feeling good, don't allow anything to upset you. We will all hear things sometimes that frighten us, they are just words. By all means do some research and get some facts, but if it is bad news, it changes nothing. Look forward and make long term plans and trust that all will be well, don't wait for anything, just live for today and have fun.
Have a good weekend girls, Singapore Chris x
Take care everyone
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Jane, I wonder if that link was here when I was thinking I had ER+PR+. I mean, I did have that. I guess I have the other one too!!! I find it odd we can get different "readings" from biopsy and then again at surgery. Maybe I had two different types of tumors in there at the same time? hmmm.
Jules, that stinks. Let us know what happens.You would think the Dr. would check this!!!
Chris, you are, of course, right. I keep popping the little whie pill. I'm sure I'll hear something back next week, if not, I'll poke again. I was thinking, I need to be able to deal better with these things, b/c, I am sure, over the years, we will hear more and more about this and that, and we just need to stay steady and keep on going... (I am talking to myself now!!!)
Off to walk in the lovely sunlight! It is a beautiful day today in North Carolina, USA.
Spring...
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