2010 Sisters
Comments
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Hi LadyinBama - I'm getting cytoxan, methotrexate, and 5-fluorosil (CMF). They give me MF by IV twice (once per week) in a cycle and C pills for two weeks at a time, then I get two weeks off. Tomorrow is the last day of C pills for my second cycle - hurray!!! Then I get two weeks off before the next MF infusion and start of C pills. When do you start FEC and Taxotere, and how many cycles? It was terrifying the first time I went in, but it really turned out to be no big deal. They gave me pre-meds so I had no nausea. They watched me real carefully to make sure everything was okay, and it was. They gave me ice chips to suck on while the methotrexate was going in to prevent mouth sores, which seems to have worked. I sure hope it all goes well for you!! Sorry you have to get chemo, but it is doable and we will get through it!!!
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morning sistas.I see some good news and sad news every day.when i start reading the posts i feel happy but by the time i get to the bottom one or more of my sistas have problems.Dear God one day i wanna wake up and see all good news on here.That is my prayer for today
tomorrow is mammo and ultra sound and wed onc.my granddaughter and my friend are working out the transportation.THANK GOD. no more visits until the surgery in Sept.I hope
huggggggggggggs to all
K
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Happy Monday Ladies!
Grannydukes - you sound better. I hope that having a plan has give you some comfort. So glad you are getting help with transportation.
On the Neulasta front - I wonder if cost doesn't have something to do with whether or not they prescribe it (aside from which chemo cocktail you get). I picked up my pre-chemo Rx on Friday; two vials of Neulasta have an "actual price" of $6,975 - yes, thousands. Thank God for my job and medical benefits - my copay was only $20.
I went in last Monday to have the last stitches removed and my nurse noticed a red area that was warm to the touch, so I started Keflex. The next 3 days, my drain site, which seemed to be healing up just fine and closing, was suddenly putting out really nasty fluid resembling baby diarrhea (the only description I can think of!!). I went back Friday, had an US-guided needle extraction, but the contents were so thick nothing would come out through the needle. There is a hard/lumpy spot at the end of my ALND incision that is apparently the culprit. When I push on it, the drain site under my arm leaks.
So I go see my surgeon again today to see what she says. Sounds like I may be in for a surgical drainage or something, which would make 4 surgeries in 3 months and I'm really praying I don't have to go that route. This has delayed my chemo plan; I was supposed to have my port put in today but of course they won't do that until we get this cleared up.
One step forward, two steps back. THIS AIN'T NO FRICKIN POLKA!!!
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MrsNice- Dang! You just can't get a break. You have a great attitude, you'll get there. I'm sorry to hear about this new delay in chemo. Though chemo is certainly not a picnic at the beach, I know you are anxious to get on with your treatment. I LOL at your frickin' Polka comment. You got that right. This is not a Polka, Square Dance, Waltz, Jitterbug or any other dance I would much rather be doing! Hang in there!
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Mrs. Nice, though not so serious as yours I am in the same spot. Taking keflex and waiting for things to clear up.
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grannydukes - best of luck with the mamo and us tomorrow. So glad you got a ride!! Let us know how it goes. I'm with you, one day hope to see all good news here!!!
Mrs Nice - Arrrggghhh! I am so sorry things aren't clearing up more quickly. I had chemo pushed back a number of times due to these kinds of delays. It is so frustrating!! I'm no expert, but to keep it draining is probably good. My first lump had so much stuff draining it freaked me out, but eventually it healed. That surgery was mid March and I think it drained well into May. I'm glad you're on some anti-B's. I had to take anti-B's when my axld drain came out and then the whole area under my arm got pink and hot. I can tell how frustrated you are and all I can say is hang in there, it will heal but it sure can seem awful for a long time. I had 3 surgeries and 3 biopsies in 3 months - you are right it's no fun. I hope you don't need another surgery. I will be praying for you to get past this awful part of it!!!
Hi there DesignerMom - you sound good, hope that's the case. Thinkin of you with all best thoughts...
Omaz - Hope yours heals up quickly too!!!
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Re: Drains: It's good to know that others still have drains. I had my surgery July 8 and started out with 4 drains and am down to one. I noticed a terrible smell last week in my fluid and they changed my antibiotic; it seems to be getting better, I sure don't want it to get infected. Some people have warned me that 6 weeks is too long to have a drain in. But what the heck can you do when you are still draining??? Here's hoping we all get our drains out soon and can move on to the next step.
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Mrs Nice. DAMN DAMN. thats all i can say for you.also im sorry. everyone says this damn bc is easy shit thats not true.more of my sistas are suffering with one thing or another every single day.i dont call that easy..im prayin for ya.real hard.
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LadyinBama - I had a drain for 4 weeks after my axillary dissection. I had not had the pleasure before - ha, ha, ha. I will share that it started smelling badly. What I mean is that when I would open the drain to pour out the fluid to measure the volume, the fluid which previously had a neutral, non-odor, started smelling bad. I called my doctor and was told that the bulb part of the drain needed to be replaced, as after so long it was getting funky. Since I was 3 hours away, it was not possible to just stop in for a replacement bulb. In this situation they told me to clean it out with rubbing alcohol. This worked and the smell went away. Doc told me that the way the drain works, the fluid in the bulb could not go back up the tube to my body, so it couldn't infect going back up the drain line. So every morning after the smell started I would rinse the bulb out with tap water, then pour (suck from a jar) rubbing alcohol in it and swish a few times, then pour it out and re-evacuate the bulb. This was a Jackson Pratt drain. I'm no expert, so check with the pros who know. My drain never got to 30 cc either. It stayed up around 100 cc on average for 4 weeks. My doctor took it out anyway and then it got all pink and hot under my arm and I had to take anti-B's for 10 days. That finally kicked it's butt. Geeeaaaawwwwddd what a hassel!! I sure hope you get that drain out soon, they are just awful!!
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Hi Ladies: Had my SNB yesterday. Thank God its over. Wish I'd had it done at the same time as my Lumpectomy but its done now. I must say the isotope injection was the worst part. That and getting sick after waking up in Recovery. I did ok with my bloodsugar waiting for surgery and fasting. I'm on a 24 hour insulin so I can drop into a low if I don't eat. They said I could just sip a bit of clear apple juice if I got too low. Anyways its all behind me now. All but the healing. Thinking of you today Granny - hope all goes well with your tests. I did hear back from my liver and kidney scan - all clear - Thank God! Still no results back from the pelvic scan. I have had this nausea for a couple of weeks and now pain for a few days just under my rib cage. Hoping I just pulled something. Praying. So sorry so many of you are having such a hard time with draining and infection. I healed well from the Lumpectomy - hoping I do as well this time. A bit sore but taking pain meds and doing pretty good so far. Best to you all.
Cathy
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Cathy - Do you have Type I or Type II Diabetes? I have Type I, and have for 33 years. Sometimes, it seems like bc is just another thing to deal with to keep my body alive.
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hi cathy.i had the same thing.2 surgeries instead of 1.glad thats over with too.
I went for the mammo today.the breast is benign..thank God But the Lymph nodes are indeterminatemammographically.further evaluation based on clinical followup with onc.tomorrow.I dont know what to ask this onc...DOES ANYONE KNOW? I am bringing a tape recorder so i can play everything back.everyone says ask a lot of questions but i dont know what questions to ask
I need my sistas help
K
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Hi Cathy--I have also developed a pain under my rib cage. It is worse since chemo and I am wondering because I was vomiting so much--that might have pulled a muscle? I have my bone scan on August 30th and super nervous for good results. However, as my doctor said yesterday--from now on all tests will make you nervous--have to live in the day. Easy to say, harder to do! Hope and pray for the best.
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Lisasinglem- I'm insulin dependant now but was dx type 2 at aprox. 38 years old. You get used to living with it.
Granny- not sure what the means. I'm not much help sorry. I guess just ask your onco to explain so you can understand it. Let us know what they tell you and gl.
rache5738- hope that is all it is. I know it is easy to fear the worse when you don't know. My pain has been better today, not gone totally but better. Maybe because of the surgery I've be rather quiet today and not doing much yet. Hope your bone scan goes well! For sure easier to say than do. Sorry to hear your so sick with chemo. I am kind of dreading it at the same time looking forward to getting into treatment. I asked that question to my surgeons assistant yesterday - could I have pulled a muscle? and she said No. No other explaination just No.
Take Care sistas! Best to you all.
Cathy
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Happy Hump Day!
I started to post an update yesterday, and then the cleaning crew (my DH and kids!) unplugged my laptop and kicked me out of the living room! Anyway, saw my BS on Monday and she said everything looks just fine. The "mass" that was visible on US is FAT necrosis (oh yeah, now my fat is dying!), because the incision was opened twice and the body is just not happy about that. The cellulitis infection is under control with Bactrim, and the small amount of fluid leaking from either my breast incision or the drain site is normal and will eventually just stop. All of this news was a great relief as I really feared another surgery was coming to drain the mass. I didn't want another 3 week recovery from surgery to delay chemo. So I'm on schedule to start AC on September 1st. Of course not looking forward to it, but I'm at peace having a plan in place that (with God's grace) will remain steady.
Thinking about you Grannydukes - hope your appointments are going well!
Omaz - how long have you been on Keflex? If it doesn't appear to be working after 3-4 days, it might be prudent to call your doc and they may change your Rx. I noticed a marked improvement within 24 hours of switching to Bactrim; just depends on which "bug" is in there.
Cathy - wondering why they did your SLNB separately? Anyhoo - hope you're healing comfortably. Don't deny yourself the pain meds if you need them - I did for a few days and I just got exhausted from *fighting* the pain. Once I went back on even a half-dose of Percocet it was much easier to relax, which helps the healing process.
Hope everyone is having a blessed day! I just might go get a pedicure!
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MrsNice - great news, I'm so glad things are going better for you!! Sorry about chemo, but if I can do it anyone can. That will be fine too!
Happy Hump Day and Best Wishes to all!!
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Mrs.Nice - glad to hear your doing somewhat better and heading into treatment soon. I had first been told (from core biopsy) that DCIS was found. My BS thought it may not be required to do the SNB if that was all I had. Unfortunately it was much larger and not only DCIS but IDC that neither the US nor Core Biopsy showed. We were trying to avoid a surgery that may not be required and from all that I had heard its not a nice surgery (very very sore) and can lead to other complications as I'm sure you know. As it turned out it was necessary after all and I wish I had just gotten it over with. (hind site) I will also be starting chemo after I'm healed. I see onco Sept 2. Yes in one way we dread starting it in fear of the side effects but in another way we are anxious to start the treatment we need and get on with it.
Cathy
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I love this site! My 12 year niece is 5 years past the dx of leukemia and told me not to worry about the port or chemo she would help me thru it. She is my hero! If she can do this, so can I. However, it is nice that there are others dx this year too!
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cherylQ- You gotta love kids! They can teach us how to be strong. It looks like you were just diagnosed. I'm glad you found this forum. I can't tell you how helpful it has been to me. These ladies are amazing. You are going to be amazing too!0
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hi everyone.doin the happy dance.breast is fine.the onc feels 1 node is involved.probably meds and a few rads.possible needle biopsy.not in that order until she speaks to the DS but it looks a little brighter now
thanks for all the prayers.God bless my sistas.
I wish one day we will all hear the words cancer free.Mrs M...glad to hear your doin better.prayers do work.
K
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Hello Sisters-
As I write this I am crying. I was diagnosed June 30th. It's been a roller coaster ride and I'm sure I'm preaching to the choir. So many ups and downs. Could be this could be that. I live in Maine and felt I needed to travel to Boston for treatment and glad I did.
After 1 biopsy on my right side and 2 on my left, a lumpectomy and node removal, i don't know how I'm going to handle chemo. Still not sure if I'm HER2+ was borderline with biopsy. Today my oncologist called to tell me that the HER2 results from lumpectomy are negative, but wants better clarification from the director of pathology. Never a straight answer.
Tomorrow I go in for my CT scan, bone scan, echo and God knows what else. I decided to have the chemo done in Maine the 4 hours of travel one way to Boston and 4 hours back seem impossible. I think I start chemo around Sept 1.
I'm a mother of 3 sons, ages 17, 16 and 9. My husband and I started the separation process a couple weeks before being diagnosed...I turn 41 next week and can't believe this is happening.
I used to be the one in control, the strong one. I now am the weak one who can't sleep, can't smile and I'm so out of control.
I'm beyond afraid of chemo. I hate that I have 2 scars from surgery, I hate that I'm going to lose my hair, I hate that I have lost myself. I hate that I'm on this site.
I am thankful this happened to me and not my kids, I am thankful for this site, I am thankful I have good doctors and health insurance.
Not sure how I'm going to get through all of this with very little support. Ready to just say no to chemo. My surgeon got the tumor with clean margins and 1/4 nodes had very micro cancer in it - is chemo worth it????
Sorry to vent, felt good to let it out. I know it could be worse, I really do.
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hello Jag
easy does it.we all walked in your shoes and they hurt...ouch...when one sista cries we all cry,when one sista smiles we all smile.we hold your hand when you need us.we are on call 24/7 not like our drs.soon enough other sistas will jump on here with lots of huggggggggggggs and good strong advice. all i can give you right now is a prayer,love,friendship and yes hope.
there is a safety in numbers.
God bless.We lone you
K
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HI Jag,
First of all breathe.... You are in the right place for support. All the girls on this thread and many others are there to help you walk thru this part of your life. Just take one day at a time and if that's to much take one hour, or one minute. Try not to jump to conclusions before taking with your dr or bs, onc.
I was diagnosed in March and went thru rads in May-July. I was really anxious but found a thread with ladies going thru the same process at the same time so it was nice to have a buddy. I found for me things are moving very slowly. I can't push it, can't make it move faster.... so, I have learned to be patient ...
Blessing to you.
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Jag---We are all in the same spot---but once you have all the information and a treatment plan in front of you---you will feel more in control. For me, that was the hardest thing, the not-knowing and waiting. Once I had the treatment plan and asked all my questions, I did feel more in control. This whole thing sucks and it shouldn't happen to anyone. I also had children (8 & 10) and all I can think is that Thank God it is me and not them. We will get through this. This site helps A LOT and has become one of my key support systems. Take care, Rachel
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Hi Jag,
So sorry you have to be here. Been there, done that with all of the emotions and uncertainties. We are here with you. I know it seems unimaginable that this is happening. I'm right with you, sister. How did this happen? We will never know, really. The waiting and decision making are definitely the worst. I think it is easier for some like me who have a clear cut need for chemo to make that choice. My advise is that you listen to what the doctors say, in terms of risk/benefit ratios and try to make the best informed decision that is right for you. Right for you at this time, anyway. It sounds like they did a good job on your surgery, but the positive node worries me a little. I had no positive nodes but opted for chemo due to the large tumor size. I'm not sure what I would have done with a smaller tumor, but having been through it now (just finished) I can tell you that chemo is doable and I'd rather be going through it now when I'm otherwise young and healthy.
Whatever you decide, you should have peace about it. If you don't, then it is not the right decision. You might also consider checking out your local hospital for your chemo if you decide on it. I live in a small Florida city and have a Emory/Duke MD-Ph.D. oncologist 10 minutes away from home. You don't need a big cancer center to receive excellent care. This has made this so much easier. Breast cancer treatments are pretty standard unless there are some other underlying conditions that need to be managed or it's particularly difficult case. Check the credentials of the local oncs and see if there is one you think will do. Maybe you could visit one for a second opinion.
Gigantic hugs to you, I know it is difficult right now.
Shelley
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Hi all. This is my first time posting so I'm not sure if I'm doing it right, but I am really freaking out - and I'm not even the one with breast cancer. My stepmom (of 20 years) had a bad mammogram a couple of weeks ago in her small town in Minnesota. She had a biopsy last Wed and got the bad news on Thursday - it was cancer. Friday we got the full path reports and the news was even worse - it's aggressive and bad. A score of 8 on the Nottingham scale. This past Monday she met with a surgeon in her small town who scheduled her for a double mastectomy this Friday. Fortunately (in a weird way), she freaked out after seeing pictures of women post-mastecomy and decided she wanted to do reconstructive surgery at the same time. So on Wednesday she was in the Twin Cities, at a great cancer center, getting an MRI (which the small town doc had not done). The bad news - the cancer had spread to her lymph nodes. And more bad news today. The surgeon was examining her and was able to feel the nodes and then saw a large pink spot on the underside of my stepmom's breast. My stepmom couldn't answer how long it had been there but the surgeon said it changed everything. She immediately sent my stepmom to the oncologist, who said this was an inflammation of the lymph nodes and means the cancer has probably spread. They sent her in for a brain MRI this afternoon and will do a CAT and PET scan tomorrow, but said they couldn't do the surgery yet - they had to do chemo immediately because they're assuming the cancer has now spread. She'll start the chemo on Monday and the doctors kept saying that IF she made it through the four months of chemo, then they would do the surgery. This past week has been rough, obviously, but before today none of us thought we could lose her before Xmas. Do doctors always talk like this? Or is it a really bad sign that they're not even sure she'll make it through chemo? Oh, and the small town quack! hasn't gotten back to her yet with the results of the hormone test (we're hoping it's positive, right? because that should mean the cancer is easier to treat?). And they're doing the DNA test tomorrow to see if she tests positive for some gene which could indicate that she's also at a high risk of ovarian cancer. My kids are only 3 and 6 and I'm now afraid my stepmom won't even live long enough for my 3-yr-old girl to remember her grandma. Is there anything positive I can cling to right now (besides the fact that my stepmom is, underneath it all, one of the toughest, most stubborn people I know). And does anyone have experience with the Piper Center in the Twin Cities? Thanks. And I wish I could think of something nice to say to all of you who are going through this yourself - or, like me, have a loved one going through this. I'm just glad I found this site.
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Hi. I am new here and seem to have trouble finding my posts after submiting. Anyway, I had a double mastectomy on July 29 2010 for both invasive ductal and lobular carcinoma, I have not started chemo but will be having act and than rads afterwards. I live in western suburbs of chicago. : )Onward
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jessica-Welcome. I'm sorry we have to meet you under these circumstances. I am glad your stepmom has you to help her. I am glad you found this forum. As you are in the beginning stages, still finding out details about your stepmom's pathology and diagnosis, I can't give much advice. Just know that anything is possible, including miracles. My chemo nurse told me over the years she has seen that two types of patients do best, the "fighters" and the "faithers". It sounds like stepmom is a fighter and I know you will help her. Come back here as you find out more and we will all try to help. These women are amazing and have helped me learn so much. Praying for you and your stepmom!0
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HI I'm new to this forum but needed some imput and you ladies all sound so knowledgable and compassionate.I could use that right about now.
I had a lumpectomy and they found another very small nodule but it was cancer. The oncologist doesn't seem too concerned since I will be getting radiation.and Tamoxifan. Thats a done deal its the chemo thats not. I read that all invasive cancers used to be treated with chemo until now. They rely on the onco DX test which from what I read is very good. Only it takes 3 weeks. This waitng is killing me. My BS and onco strongly feels it will be low so thats good. I went to him before test results were back only to see if I was going to like him and see how he handles things. He was very nice and told me that if he had to decide what to do without the test he would say no chemo but if it comes back anything but low he suggests chemo. He feels it is not worth the risk of chemo for a very small chance of reoccurance. I asked if patients still want it does he agree to it. He said yes of course but you can tell he doesn't like to.He said if it was his wife he would tell her not to do it.It all sounds so good but I can't get it out of my mind all the what ifs. He said to live in the moment and not the future. I think thats easier said than done.
My question is is there anybody out there that still decided to make the decision to do chemo even if the chance of it coming back was ever so small. I am at my wits end with decisons. My family doesn't agree with me doing the chemo but then why would they they aren't in my position. I wanted to see the onco by myself because I knew that I would not be able to make up my mind without others influencing me.
Another decision thrown at me was whynot get a MX and recon than I wouldn't have to worry about any treatment. I was never given that option so that is food for thought.
Anybody with any advice for me?I would so appreciate it.:)
Vickie
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Vickie, I did tons of research about chemo as my Oncotype score was a 17 (high side of low risk). My research showed me that the possible permanent side effects of doing chemo was not worth it for me. I feel very comfortable with my decision.
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