August 2010...anyone starting chemo besides me?!
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IowaSue I was in a gray area as far as RADs. There are so many things to consider. It's not unusual for someone with a BMX to have RADs if: in nodes, tumor larger than 5cm, unclear or close margins and/or tumor is close to the chest wall etc. My tumor was 5.5cm and although my margins were clear it was only .75cm from chest wall. The RAD onc gave me a pass because she felt my treatment is very aggressive and didn't think the extra stress to my body from RADs was worth it. Unlike you I have the advantage of hormone suppression therapy. Since you were negative for hormone markers I bet that's why RADs is recommended.
Ladyinbama I don't even know what I weight anymore because so much of it is water gain. When I take the steriods before chemo, the following day I loose like 4 lbs. Right now I'm gaining about 1-1/2lb a daily. All I know is my pants still fit.
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Lizzy - You are taking TAC. It is strong medicine which combines adriamycin AND taxotere both at the same time not to mention cyclophosphamide! Between it and you any lurking cancer cells don't have a chance. Ignore those negative people. You said this beautifully:
More to this point, girls, I think keeping our social circles small, our stresses smaller and our hearts big and filled with hope is the recipe for living and not dying.
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lizzy- rad. for me is because 1 of the 3 tumors was basically ( 1mm)next to the rib, so the margin wasn't clean.
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Anyone know what the radiation 'boosts' are for? Are they automatically prescribed?0
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Lizzy - don't listen to people who know absolutely nothing about BC save for one family member. My cousin was LN positive in 1989, had chemo and has been fine.
Talk with your oncologlist about it. Ask him/her to go through the statistics with you. You can't listen to someone who you met in the store whose experience is extremely limited.
Yes, LN's suck. What I was told, and my diagnosis is very similar to yours - I was borderline between IIa and IIb--when my oncologlist added up all my markers and stuff I was told that I was a IIa even though my initial path report said BOTH IIa and IIb. But we are about the same. Anyway, my onc told me that LN with 2 nodes positive and chemo reduces the chances of metastatic BC to the SAME as someone who does not have LN involvement but has BC. This is what I was told - of course it doesn't eliminate it but it does reduce it.
Don't listen to what they say. You also have the option of hormone therapy as well and I was told by my doctor that increase chances another 15% that it won't recur. Of course it's scary as all h*ll but don't let other people get you down when they are NOT doctors and have virtually no experience.
Lisa - I'm sorry that happened to you! I have chemo brain as well - I am losing things and forgetting things! UGH! Don't beat yourself up - you'll be in great shape once you're totally well, to start auditoning and getting parts!
My port wound seems to be healing - swelling's down and there's virtually no pain. I pulled off the plastic dressing after 48 hours like they said, only to find that it says 72 hours on my sheet! So I left the steri strip in place. I can see dried blood under it and I'm not about to pull it off. But I"m not sure what i can do - I guess I can shower...I did this morning but I didn't get it wet (that was interesting....)
I have found that when I do not exercise my mastecomy arm that it becomes stiff and I can feel the cording all the way to my wrist. I had this a couple of weeks ago but after running and stretching it went away and i had totally normal range of motion. Now it's back again since I have not been running due to the extremely frigid weather and having surgery. Have to remember those stretches!
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Cal - Even with the lumpectomy I notice when I don't stretch and exercise that my underarm gets feels tight. Glad the ex-port area is healing up - yay!0
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Omaz - what my RO told me abou boosts is that they are an extra focused dose of radiation, that just radiates the pocket of the lumpectomy, rather than the whole breast. I will have 3 of these at the end of my rads.
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Hi Lizzie---I second Cal's posting about what people say about LN positive cancer. I has 1 sentinel node positive but same as you--it was full of cancer. When people do ask me about my cancer and I tell them that I had a node positive--I also get that "head tilt of sadness". I think that people associate that with spreading cancer--while we all know that cancer can spread regardless of any nodes positive. The whole thing is scary regardless of positive nodes or not.
Omaz--I am also getting rads along with 5 boosters. I was told from RO similar to Lisa--they boost the original surgical area to ensure area is clear. My understanding is that cancer cells can sometimes spread in surgery so they give that area a boost.
For whatever reason, maybe holidays, I feel particularly emotional. I keep thinking back to last Christmas when everything seemed great and before my cancer was found. So hard...hopefully, we look back next year with our short haircuts and remember what we accomplished this year. I'm not sure how you get to the "new normal" without being terrified of every ache and pain--but people tell me that it is done....I will hopefully get to that place.
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Lizzymack It is because others are not as educated on the topic as we are. I know I have one positive node (hope thats all). I have asked the oncologist about this over and over and told him my fears about positive lympies. He told me he had a patient with 22 positive nodes and she is 10 years now disease free. Most people freaking don't know what a lymph node is. It just makes you want to nut up!! You know everyone is worried constantly about "C" .. At least we have all had a full body scan and know the score. I tip my hat to you LM. Your nodes were trappin the cells.
Beth
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Its true, you never know if you are node negative whether your lymph nodes were doing their job.
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Rachel: On the emotions; I find myself being strangely calm, almost emotionless. I started taking Effexor about a month ago for hot flashes and am wondering if my calm is a SE of that. I just listened to a song that always in the past made me cry (Go Rest High on that Mountain by Vince Gill; it's a beautiful song); I didn't even tear up! So, I don't know what is up with me. I think being emotional at a time like this - the holidays and all we've been through this year - is normal. I think I'm the weird one!
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Lady - The onc offered me effexor or megace for the hot flashes. The megace (progesterone) is pretty low dose. Did the effexor help with the hot flashes? I love the fan I have with the remote control for sleeping, that helps a lot! I was at a party Friday night and had a hot flash while I was talking to someone and I actually had rivulets of sweat running down from my forehead. Now that's an attractive addition to my already stellar appearance!! lol0
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Good evening chemosabes and radicals!
I have GRRRREAT NEWS! I will not be joining the radicals!! I met with the radiation oncologist today (she was sooo cool) and she said that my situation does not necessarily warrant rads. She was somewhat on the "you don't need it" side of the issue but said she would honor my choice. I could not get dressed fast enough and got the hell out of there!!!!!!!!!! Laters! I will not be choosing rads if the professionals say no! I had a pleasant smile on my face all the way home!
Thank you all for weighing in with your opinions on people who don't have cancer and don't know what this battle is all about. They just shoot from the hip with their basic understanding of what it all means. I just really try to avoid talking about it to most everyone but you all and my docs! Which leads me to my next point: I am so grateful to all of you and for this thread. It is so wonderful to have a place to come and chat where everyone is in the "know."
Today was very, very busy....had to meet a few friends 40 mins north and then 1 hour south to Yale to 2 doc appts and then 40 minutes north ah-gain to pick up a gift and then 2 stores and finally, at long last, home. I was on the highway all day, shopping, docs and no naps! I don't know how I did it. I am wiped out.
Lady: I think there comes a time when you don't feel as sharply as you once did because you are going through so much. I think we spend our tears on much greater matters that plague us these days and perhaps we don't have any left for other stuff...thank God! I would hope we don't have an endless supply of tears! This past year has been a whirlwind for all of us and I just think you get worn down a bit. I don't think you have to worry that you are becoming emotionally anesthetized but more like just worn down a bit.
Omaz: OMG....I can totally identify with sweat running down the forehead! I am so tired of that blonde wig, I want to burn it! I was standing in line at Walmart and sweat was rolling down my forehead and onto my cheeks. It was one of those warm days when they had the heat on...I nearly left the store.
Libraylil: I have to agree with you and others who have pointed out that at least dirty nodes indicates the nodes were working. I don't think that dirty nodes is a death sentence but more like a life sentence. You are right in that if it got to the nodes and the nodes trapped it then they were doing their job. Again, I am so thankful for all of you!
Lisa: great avatar! You look really good.
OK...sohardbnme, texasrose, wherria, and a host of others....where, oh where have you gone?!? Texas is probably still blaming the kitten for computer problems!!! Should you not stop by to say hi before, and if you celebrate, this coming holiday, I hope you all have a lovely, lovely time of it.
I am going to go to bed...I am so tired and tomorrow is another one like today but not quite as much traveling. I am going to sleep good tonight! Night all-
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LadyinBama, I take Effexor for depression, 150 mg XR a day. I find that I am less likely to be close to tears on antidepressants. I was given this dose by my Onc because she thought that I was moving back into depression during early chemo. I had some incidents of laying in bed crying, especially when coming off of the droids. I agreed to go back on them because there is no way I ever want a major depression again.
My shrink during the time of my major and only depression told me to always start antidepressants early because they are more effective and it is more difficult to get out of a major depression. I can attest to that, it was such a hard time, three years of my life.
I hope this was helpful Bama
GInger
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Hi all,
Christmas has gripped our house for the last couple of days and I haven't been able to write but I've been keeping up on posts.
On nodes- it's funny this has been a stream of conversation, b/c I have no posititive nodes and I've been fearful all along that somehow the testing that they do is random, or run by an idiot, or some such other calamity. So here I am node-free, panicky and choosing the most aggressive options all along the way. Chemo, Rads, Hormone therapy, ovary ablation, etc. I guess we can't really win, is what I'm trying to say!
Energy levels- it's been improving week by week for me since rads. I'm now 4 weeks past and have the kids home with me full 8 hrs a day and I can do it!!! This is a big deal, b/c they were always in school when I was really sick. It's been making me think of those of you that have little ones at home or do home schooling.....you are SUPER WOMEN. Truly.
Hair- I went to a party and no one knew (or only a few ppl) that I'd had cancer this year and no one suspected that my hair was anything but a haircut choice!!! So rest easy girls, it's coming!! (Mind you this is still a choice I would NEVER had my for a haircut....:)
Emotions- A lot of you have been commenting on these and I'dd like to weigh in b/c mine have been all over the map. I cry quite a bit when I'm really overtired- I'm still kind of pissed off that this happened at all. So when my DH says, "but look your energy is returning, your hair is growing back, etc" I"m like YES, BUT WHY ME IN THE FIRST PLACE???? Also propbably this was brought on by the beginning of my period yesterday....the first in SEVEN months. Oooooh, yeah, no hormones on this gal. HA! So I think we're all normal for what we are- post and current cancer battlers.
Tamoxifen- I started it yesterday. I didn't want to, I really, really didn't want to. But I stood there in my kitchen and stared at that stupid pill and took it. I must have looked like a loon b/c I raised my arms in victory and did a little dance. I'll kick it too. But that doesn't mean I won't rail or cry or whine or bitch about it. FOR FIVE YEARS.
We have family arriving today and are in the midst of Xmas craziness til the 28th. So not sure how much I'll be able to get on here. So with that in mind, I hope each of you has a restfull holiday filled with no butt-head relatives making ridiculous cancer pronouncements that they know nothing of, I hope Santa is extra good to each of you and most of all I wish that the New Year brings us all the peace, serenity and health we all deserve so richly. Big hugs and love to each one of you. In so many ways, you've been one of the biggest highlights of my year and this cancer. Yes, I got cancer. But I also had this group of women who are going through the same thing real-time and can help. What a blessing that has been. Happy, happy new year to us girls!
p.s. I may be on quite a bit too over the holidays- depends on those butt-head relatives!:)
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lizzy- congrats on no Rads!! It was a pain in the ass in the end and one you could do without! That's a great christmas present!0
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Lizzy - Yes! No Rads! I could see you with that smile on your face and the tunes cranked up full!0
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Lizzy I know the feeling. I was so excited when I was told no rads I wanted to hug the rad onc. If I had to do them I'd be OK it's just I want the visits to the hospital to be reduced. As it is I have a year of herceptin :-(
So happy dance for Lizzy!!!!
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Wow Lizzy that is freaking awesome!
What sweeney said... Peace, Serenity and Health to all.
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Also meant to mention that the universe has a sick sense of humour- I just got my period after SEVEN months of NOTHING. Of course, it's a tidal wave. IT'S THE WEEK OF XMAS and my house is FILLED with people......grrrrrr. All I want to do is get back in my pjs and "watch the movie on the back of my eyelids".
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Good day chemosabes and radicals-
Sweeney: UGH....tamox, the return of the dreaded period which, no doubt, was brought on by tamox, the relatives filling the house, feeling tired, emotional rollercoaster thanks to the return of red dawn and now you can't even rest! I am going to take one of my ceremonial sympathy naps!!!! You poor, poor thing. OH...I feel for you. Perhaps it is time to start drinking! I would increase my alcohol consumption, as follows: 22nd = bottles of Cabernet Sauvignon; 23rd = bottles of Merlot; 24th= moving to White Russians...no less than a liberal 4; 25th = continue on but perhaps move to Black Russians as the cream might be slowing the absorption of the Kahlua and vodka! 26th = claim you are very sick and every one must leave! Girl, I don't know how you are going to do it. I can't stand the relatives, their comments and all the bs that goes along with it. I try to take everyone in the smallest of doses and generally can avoid any lengthy visits....YEEE HA! I hope you are doing ok and that you are able to get through this week without too much stress. In fact, if you follow my directions stress should be minimal!
Ginger: I am glad, almost as a pre-emptive measure, they put you back on something. I agree it is much easier to avoid it than to get out of it once it has started. I am glad you are doing well.
Omaz: yes, I had the tunes cranked! I can listed to Maroon 5 for days, beginning-to-end, their entire anthology! Hardly an anthology with a band that has been around for a decade or so but I had them cranked up yesterday! Oh...it felt so good to leave that hospital knowing rads is NOT in my future!
Sadly I have more last minute stuff to do. I cannot wait until this energy comes back. Everything is a chore. I am very much excited about bidding chemo adieu next week! Then the port out, 3 more surgeries on the PS side of things and I am, hopefully, done with my tour of bc!!!!!!!!
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Lizzie--Congrats on no rads. I have to go tomorrow for CT simulation for rads and not looking forward to it--it has been nice not going to hospitalf for the last few weeks. I am looking to getting these rads started and finished.
Sweeney--I am starting Tamoxifen on Christmas Eve--Are you taking in AM or PM? I have been lucky with side effects through this whole journey and hopefully that continues with Tamoxifen.
I was out today with my two sons for lunch and had to wait in the parking lot--while they "secretly" went to buy me a present. Just seeing how happy they are for Christmas--puts a smile on my face. The last week was hard for emotions--not sure why--I guess it is combo of holidays, having to sit with my SIL who has so many opinions about cancer (of course she hasn't gone through it) and starting the process for radiation. Hoping and praying for a healthy 2011.
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I'm still not caught up on posts. I took a quick work break and read one page.
Sue: I had rads after a bmx. Yesterday was my last day. Yay!
Lizzy: I too am so tired of getting the "you are dying" eye from people I see when I leave the house. I'm frustrated with the slow hair growth for that reason. It has been 8 weeks since my last tx and I thought I would be able to go hatless by now. Oh well.
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Lizzy - a great Christmas present; no rads. I had 2 positive nodes also and I was told by my breast surgeon that I was 'borderline", by the second breast surgeon that I was "borderline" and by the TWO oncologlists I saw (and I know for a fact that my oncologlist considers herself very aggressive) that they would NOT recommend radiation for me (it's also based on where the tumor itself is). So based on those opinions, that was good enough. I will always wonder if I did the right thing, but this is what was recommended to me so I'm going with it on faith that it's the right thing.
Sweeney - right there with you on the tamox. I hate that bottle sitting in my cabinet. I have to heal from the port surgery before I can start it - I may start it after the holidays in case i have some kind of reaction, I want to be able to get the doctor easily.
Ann -- yes, I hate that "you're bald and dying look". I was at the nutritionist today and as I was paying and sitting on a chair, my six year old whips off my santa hat and start rubbing my head. The receptionist and I are friends and she's seen my head, but there were other people in the waiting room - UGH! How embarrassing! I'm sure they all think "Oh....there's someone dying of cancer grasping at the last straws and using natural medicine". Um...never mind that I've been seeing him for four years on and off for lyme. But yeah, I hate that feeling and my hair is just not growing back in fast enough!
Lady - my emotions flat lined on chemo. Give it some time for your body to get back into balance. In the meantime, don't hesitate to ask for anti-depressents. I still take ativan every so often when I find my mind spinning out of control.
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Gee what kind of people are you folks hanging out with? Everyone keeps telling me I look awesome. Granted I won't step out without make-up on and my scarf.
I get the double take though. I had really nice hair. Seems people recognize me but aren't sure so it takes a minute or so to register. I still have the same big eyes and great smile!
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Okay I am faced with the huge task of reading 15 pages, it may take me a while LOL
Lizzy, Just got my internet back up. I scheduled the shut off at the old place and hte turn on at the new place a week apart to get me off my but and organizing, the new place looks and feels great and its perfect timing! I am finishing up my chemo. Had tx 7 on monday. My dr pretty much says 7 its for me due to the tingling in my toes and fingers, like Ginger (i think) he doesnt want it to become permanet.
I just had me echo cardio gram done yesterday as well so i will be getting those results no later than tomorrow.
My dr is going to be scheduling me to see the surgeon too to weigh my options on surgery, and that will determine my radiation as well, because the main tumor is attached to my pectoral i am not sure if there will be clear margins like we'd hope.... thats me in a nut shell!!!!
my hair is very slowly growing and stayin in- its a soft down like a baby! Maybe 1/4 inch long
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Went office holiday party today. Many people were curious about my head so I took off my ball cap and showed them. Everyone seemed happy to see me. It was just fine. I realize some people may be uncomfortable with my 'bluntness' about my experience but sheesh, we all have troubles in life and what is the point of shy or secretive about it. On the other hand, I suppose not everyone is so lucky to work with good people, so there's that to consider.
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Oh yes HI TEXAS, WELCOME BACK! Is your apartment awesome?0
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Rachel - I have my rads sim in two weeks. Let me know how it goes for you.0
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My apartment is MORE than awesome!!!!
Besides the obvious perk of no rent, the laundry is cheaper per load, there is more space (a 3rd bedroom) the grounds are nicer as well as the buildings as a whole. ANd there is a playground. Loving it to say the least!
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