Calling all TNs
Comments
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What do you think about chemo before surgery. I was diagnosed with triple negative breast cancer 3 years ago(at age 36). Not genetic. DCIS. Stage zero. So I had a lumpectomy only. Now at age 39, it's back. Triple negative. I saw surgeon yesterday, 5-18, she suggests chemo before surgery. I will be seeing an oncologist on 5-22 to discuss this option.
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Nmbr1, I had chemo first, almost done, will have surgery 6/8, then radiation after that
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Painting - I had forgotten to mention that I looooooved your painting. Wow, what a talent!!! You should be famous, maybe you are already!
Shiny - Thanks for the info. on Adriamycin. I had no node involvement, yet I did the AC in 2010.
Hope - I feel just the way you do that on the one hand I am so mad I put that AC poison in my body when it was not needed, on the other hand, i am happy they are progressing. Adriamycin was hell for me, I had spots on my skin and felt awful with it. Now to find out it probably was not needed is pretty tough to take. But yes, i am happy for the newcomers who don't have to take it if they have TN. I tolerated Taxol better than the red devil.
Sally - Don't be terrified of Chemo, it is not that bad. Besides it does get out of your system after a while. Your body will be back to normal again. Just think of it as very bitter medicine.
I hope everyone is enjoying the lovely weather. it is super gorgeous out here in Concord, California.
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Nmbr1 I also had chemo first. 12 taxol and then I was suppose to do 4 a/c. I was able to finish 2 a/c. My tumor has shrunk. My ONC can only feel where the biopsy was done.
Another reason why I'm not finishing my chemo is I got chemo induced pneumonia and was in the hospital for a week. My surgeon and ONC talked and decided to move my surgery up to 6/5! I'm just glad to be done with the chemo!
Can I get everyones input on when the SE will start going away? I'm still having some leg pain.
Thanks everyone!
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Lovelyface, I can only hope that my MOs is correct that the red devil isn't needed. Guess time will tell. Those of you that had it, you may turn out to be the smart ones. I came close to asking for it to be added to the TC.
Nmbr1-sorry that you are dealing with this again. On chemo before surgery, I met with my MO before surgery and asked about it. She indicated that both aproaches have similar stats as far as effectiveness and long term survival. There are benefits to chemo first if you are dealing with a sizable tumor and trying to shrink it to conserve breast tissue. You also know if the chemo is effective and get to start sooner which is beneficial if you have node involvement. I would definitely discuss with your MO. In my case, I was dealing with multiple small tumors and no suspected nodes so I opted for surgery first. I really wanted to get those nasty fast growing cells out of my body!0 -
Welcome to all the new gals, sorry you have to be here, but you have come to a great group of ladies for support, hugs, comfort and experience. I wish you all a gentle journey through your treatments, surgeries, recons.
Stayshiny - I'm in Marietta too. I have been using Dr. Carmen Klass (North Georgia Oncology behind Kennestone Hospital) as my onc since my diagnose in 2009. BS and all other docs are over at Northside, but I didn't want to do my chemo there due to traffic, etc. I work full time (am a widow raising my teen age grand-daughter) and just felt like I wanted to be closer to home since I had no idea what to expect going through 5 months of chemo! I too had the AC and T with no nodes. I had the worst side effects from the Taxotere. AC was pretty nasty too, but nothing like the taxotere. God, I pray I never have to go through that one again. Lots of gals on here have had TC. Think it's just what the onc believes in - they all seem to be different. Wishing you all the best.
wishing everyone a good weekend and sending hugs to all,
Linda
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The way you refer to Adryamycin as the "red devil" I am assuming it was a pretty nasty drug to deal with. I too had 2 small tumours and no node involvement so therefore am getting TC. StayShiny also mentioned heart risks as being a factor and I have a twisted aorta (found during pre-surgery tests) so that may have influenced the decision too.
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DorMac, the "red devil" can indeed have cardiac effects, sometimes permanent. My onc. tested my heart function (the % of cardiac ejection fraction with a MUGA scan) before and after I got adriamycin. My "after" level was much lower which led to a minor freak-out by the doctor's staff (while trying not to freak me out*). They did a heart MRI as it is much more accurate (MUGA results can vary widely due to technique), and it was fine. Whew!
*I had had the test a few days before my appointment, which was at noon, so I was really looking forward to sleeping in. Except my phone rang at 7:30 - "Hi, umm, one of your test results came back a little low, so we want you to come in early and have it redone before your appointment. Umm, do you feel OK? Unusually tired? No? That's great! - I mean, see you in a little bit!" And then I get there and find out I'm getting a heart MRI? And then I sit and wait, until the onc. comes bustling in, all "False alarm! Isn't that great?" And all I could think was those extra hours of sleep I could have had...
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can I ask why adriamycin is the bad guy? just asking for info only...I don't want to offend anyone...just curious..and am wondering..is it overkill? and really not necessary/ I hear that taxotere can be kinda bad for se's too..but maybe not the after effects of adryiamicyin...? I'm just curious...things have changed soo much since I had chemo just 3 years ago.
I have another friend who was just diagnosed..blah...we went shopping yesterday..of course she is freaking.. her tumor is 3.5 cm and had 2 nodes involved...but er positive...we had a good time and then she told me that she mowed her lawn today...her lx was on Tuesday....I told her you go girl....
I just got a new laptop today and I can't figure out how to change the font...I can hardly see what I'm typing..any help here?
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can I ask why adriamycin is the bad guy? just asking for info only...I don't want to offend anyone...just curious..and am wondering..is it overkill? and really not necessary/ I hear that taxotere can be kinda bad for se's too..but maybe not the after effects of adryiamicyin...? I'm just curious...things have changed soo much since I had chemo just 3 years ago.
I have another friend who was just diagnosed..blah...we went shopping yesterday..of course she is freaking.. her tumor is 3.5 cm and had 2 nodes involved...but er positive...we had a good time and then she told me that she mowed her lawn today...her lx was on Tuesday....I told her you go girl....
I just got a new laptop today and I can't figure out how to change the font...I can hardly see what I'm typing..any help here?
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Hi Ladies
My dinner post was supposed to make you chuckle, so hope you got one.
Inmate - hopefully as Christina says this Eribulin wil be a clean up drug for you and you will come back as good as new. Keep going, keep kicking arse and keep posting.
Christina - I wish I could take all that stress away from you then you could heal and get well freely and start living your life as you should with no worries. I too have heard about Aspirin helping metastasis but I don't know where. I am not sure about a vegan diet not having followed one but I do believe women in particular need meat for iron and oxygen in the blood because of all the periods they have to go through for so many of those years. As for me, I just keep shovelling it in whether its good for me or not. I think sugar has a big part to play with health. I don't eat many cakes or biscuits but I do have a lot of sugar in my coffee. My friends and workmates always go Annie doesn't need spoon just give her a shovel!.
Ksmatthews - I have been tested for genetics and will get the results on the 31st May. I had to send a blood test and history info on my families health, ie mother/grandmother so I am keeping my fingers crossed I don't have the gene or more importantly it won't affect my daughter.
LuvRVing - yay to tiny mets. I agree with Minxie on giving them a good swift kick up the butt.
LinnieB - just want to include my welcome to you. This board is a hive of information and good advice with brilliant ladies on it.
Minxie - continue to kick arse on the local recurrence. A few days on the beach will recharge your batteries and help you cope and sleep better.
Painting - your picture looks amazing. You are very talented. I hope your shows go well.
NavyMom - Camenbert (pronounded camen bear) is a soft creamy cheese that when rolled into fine breadcrumbs and deep fried is a wonderful entree. Then you dip it in plum sauce. It's really wicked and not totally good for you!! but what the heck. I'm really over whats good for me and what aint so lets just live. For all those years, apart from the sugar in my coffee, I have mainly steered away from biscuits, cakes, chocolate and all the other bad things and only eaten my meat, veges and planty of fruit. Now I've got cancer so I say bloody go for it.
Heather - when employers don't get back to you when they say they will or you don't hear from them I think for me that is the heigth of bad manners after you have taken the trouble to apply. Yes may be they haven't made up their minds yet but when YOU DO GET the job I hope they are good employers.
Your social life is about to take off on wings I can feel it in my water. Won't be long before hubby joins you either.
Clowngirl - Glad your BMX op is now behind you. As you begin to feel better your courage and your health will return. Don't be afraid of chemo, you can and will get through it with the help of all these wonderful ladies on here. Sending you a hand to hold on to tightly.
Hope60 - getting a bit confused now as to whether the chemo I had was as good for me as I thought. I had the red devil, cannot forget it really, blood stuff. My chemo was Cyclophospamide and Doxorubicin x 12 and Pacitaxel x 12 which I am still having. Does this mean I took it for nothing and it won't work for TN's?. I wish our drugs was the same names as yours so that I could keep up with you all.
Lovely - could do with your super gorgeous weather. It's flaming cold here with thick frosts and I look like an eskimo when I go out. You know the old saying "what goes around comes around", get it!.
LRM216 - must be very hard for you working full time and raising your granddaughter. I take my hat off to you raising a teenage girl. My eldest granddaughter Jessica is 14½ and seems to be going through "that phrase" so I don't envy you.
Titan - you couldn't offend anyone if you tried. You don't come on here nearly enough for me so you must be busy. Have you taken any more of mum's cooking to your son lately.
Have a great day ladies. Sit back with your feet up and let your family do some smothering will be good for you. Annie
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Titan- i am not under the impression that Adriamycin is the bad guy and my MO would have gladly given it to me. It seems that more recent studies show that adding it to the TC regime is only beneficial for those that have positive nodes. Apparently it may have long term heart risks that may not be worth it otherwise. At least that is my MO's understanding. So, I guess, maybe some would now deem it overkill. But you are right, the Taxanes have some nasty SEs that can be long term too. Although the Taxanes have been found to be very effective for a high % of TNs.
Hi Linda- sounds like you are on the western side of Marietta. I am on the east, closer to Roswell. I am using the same BS group as you and GA cancer center for my onco group. All over by Northside. Taxatore is the one giving me pretty much all my SEs.
If it doesn't kill you, it will make you stronger!0 -
My Onc. had explained the AC amount that causes the heart risks and the small amount he was giving me. The difference was huge. I forgot the exact example he gave me at that time, but I talked to him extensively about my research and about getting a muga scan etc. and everything was cleared with me 200% before I agreed to do it. I could have done 4 times my dose, and still it was nowhere close to the dosage which causes heart risks. My Onc. is one of the best in this area, he constantly attends seminars and keeps up with latest studies, nationwide. I don't like his bedside manners, but know for sure that his advice is one of the best. If anyone really wants to, google and find out what dosage you are getting, and what dosage causes heart damage. You will find that you are hardly anywhere close to it. One more point - I think the amount each person gets is by their body weight, am I right?
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Nmbr-1. Sorry to hear you're back on the journey. I had my surgery and then chemo and no rads. I was not given any other option. And I was okay with the surgery because I just wanted it OUT!. I have a friend who did chemo and then surgery because she had 2 tumours and one was very aggressive. Also the one was big so they wanted to shrink what they could before surgery. When they did her surgery everything had gone with the chemo. So I guess it maybe just depends on your situation and the standard practise of your surgeon and team?!
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This is my second post. I had started a new topic but this seems to be most active thread.
I am curious to hear from those of you who had chemo before surgery and had only partial response. I had a 2.9 cm tumor(grade 3 triple negative) that shrank to 2.1 after A/C No shrinkage during T portion so I ended that early, after ten weekly doses, and did not have my last two. I then had Lx - nodes clear. Just finished 5 weeks of daily rad
Doctors disagree as to whether I am done. Standard protocols say yes. But some are pushing research trials. I am meeting with research doctors next week. others warn against taking new drugs, especially Phase I, with added toxicities, when I have no known cancer in my body.
Christina gave helpful info on my other separate post. Wondering if any of you have been in a similar situation?0 -
Nmbr 1: Sorry that you are once again fighting this beast. I had BMX then chemo. At the time, 3 postive nodes did not get rads....if it were 4 positive nodes then rads would have been recommended. I am not sure, but I think the new way of thinking is rads for even one positive node. Wishing you the best.
To all the new gals here, WELCOME! You have found a wonderful "home" We are a very supportive, generous and informative group. Gotta question??? Someone will have an answer or advise. Need to rant about difficulties with husbands, teens or co-workers and bosses? We are here to listen and let you know that you are not alone.
I do admit that this thread moves so fast that I sometimes get ladies screen names mixed up with their real names and worse yet I can't always keep it straight as to who is starting tx or finishing and who is waiting for test results or impending surgery.
I once wrote a very long post and had to go back a page to check on what another sister had posted, only to come back to a blank screen. AARRGGHH! Love to all of you today and everyday!
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Question, r the genetic tests necessary, according to my BS it isn't for me since the only category I apply to is that I am TN and under 60 yrs of age?
I wish I knew that I didn't need the red devil last year week of Thanksgiving too so I could've enjoyed my turkey and fixings too! I was sick as a dog and missed our family dinner. Research needs to work faster!0 -
Stayshiny - No, I'm East Cobb too, right off Powers Ferry Road, up near the "Loop", but my sister (she's off Mabry) may be near where you are, as her mailing address is Roswell, but she's still in the East Cobb School District. Maybe our paths will cross someday (ha! like we both are laying around eating peeled grapes!). But, maybe.....
Linda
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yes..adriamycin dosage is based on weight...they misweighed me right before my first chemo... lbs. too light...I questioned them on this and they reweighed me. now how often do the scales weigh you lighter...ha ha..not often...anyway, I was concerned because if I was going to have the stuff it had better be the right dosage.
Cocker..you are a sweetheart...hope the taxol tx's are getting easier for you....and I am here often...checking in on how everyone is doing...believe me I care very much and worry enough for us all.
Had good news this past Friday at the onc...I have graduated to every 6 month check ups! I'm ok with this...I figure they know what is best. I have to see the PA though and I'm really not to sure about this. I know pa's go to school for a very long time but I still want the expertise of an oncologist that has seen everything.....
It is HOT in Ohio today....I'm staying inside...ever since chemo I can't tolerate the heat like I used too....I haven't had a nice sun tan for 3 years
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Good morning Ladies
Titan - good news on your graduation to 6 months but like you I only want to see my oncologist not her registrar or in your case PA. I tust my oncologist wholly to do what is best for me. I know the PA has to learn, but not on me. My oncologist is lovely and really knows her job.
I know you care very much Titan. I can feel you do. You know I wish we could skype on here, just one massive big skype so that I can see people and see the emotions flitting across their faces as they talk. Wouldn't that just be wonderful to see and hear the ladies.
Wish we had the hot weather like you. It's a sunny day but perishing cold. I keep thinking if I make it to spring please let us have a better summer than last year.
NavyMom - that has happened to me several times where I start typing my post and then go back to see what someone has said and poof! its gone. Really annoying especially if I have typed a lot, as I do.
Heather - everything is crossed for you today so I hope you hear something.
Inmate - hoping you are on top of it today and are feeling good. My words seem so meaningless when I can't do something to help you.
Teka - brilliant. My chuckle for the day.
Naan - I believe the genetic testing is necessary because I have a daughter and cancer in my family so I wanted to do it to protect her.
Have a good day and keep well ladies. Lots of hugs Annie
s
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Teka..you crack me up...thanks for the laugh! My onc doesn't "gown" me..so since I have seen him..wow..probably about 25 times in the last 3 years I just popped up on the exam table and started unbuttoning my shirt...he was like...um..I need to exam other places first.... I was little embarrased but what the heck...
Forgot that you are in winter Cocker...we carry NZ apples in the grocery store chain that I work for...good stuff! oh..and of course kiwi!
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Teka,
Are you writing about me! Lol! Loved it as I can sadly relate only too well to it!
Linda
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Oh Teka, I so totally understand. During chemo, my Onc's tech was shocked when i called the scale a very bad name when I had put on 6 lbs in 3 weeks. I would imagine that she thought I shouldn't be worried about something so trivial as my weight. But to me it was just one more thing that was going down the black hole, right along with my health, my breasts, my hair and what little modesty I had left. I gained 22 lbs during the treatment phase and it is still with me!
I could use some of those bitch-less pills...... trade you 2 unused bras for them.
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Teka, LOL love it!
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Teka, thanks for the chuckle. I'm always amazed that my blood pressure and pulse rate aren't through the roof when I go for all these appts.
My weight keeps doing the yo yo. I loose pounds after tx because nothing tastes good so i hardly eat. Then when the buds are better, I put the pounds back on. This can't be very healthy. Would love to leave the pounds off.
For those that have lost typed posts, try using your browser back button again. It has happened to me but I have been able to get my message back most of the time.0 -
Ladies, I shouldn't but I did. I read too much about thyroid nodules and am making myself crazy. The US report is very short, just says that it is a solid nodule with its vascularities, no calcification, and gives the size of the nodule. The Endocrolonogist (my doc) said only 5% is cancerous. No calcification is good news, he said. The size is medium. He said radiation and environment causes them. In my case he thinks rads did not cause it. I ask why not, I finished rads in March 11 and got my neck pain in Sept 11. Because rads are specifically targeted he doesn't think that's what did it. Then what did? Okay, then why is my neck tender, the whole area on the right. He said he doesn't know. He showed me where my nodule is located. The nodule and pain are two different areas. Could this be BC mets to the thyroid nodule. This does happen but the probability is very low. Or is the nodule pushing against the muscles?
Petscan on 7/18/11 showed "unremarkable thyroid and salivary gland". Sept. 2011, the pain on neck started. Onc. thinks if it is cancer, then it would have shown on the 7/18/11 petscan. My recent tumor markers are really very low, they have always remained the same, low numbers such as 7 and 5. On blood tests, my cortisol, TSH, T4-Free, everything is fine. The FSH is 68.5 - normal for post menopausal, the range is 16.7 - 113.6. Doc said it is within range, shows my hormones are fluctuating due to menopause.
If I had thyroid or neck cancer (mets), don't you think the tumor markers would have risen? Also, the MRI of the neck is all clear .... although doc said for thyroid US is better than MRI. Many of you have written great posts about thyroid, please tell me more. I am freaking out. Not sure when insurance will be authorized and when I can get the biopsy. Worst of all is that the biopsy could come out indeterminate, meaning sometimes they cannot find enough tissues/cells so they could miss cancer cells or the cells they test may not have cancer while there may be cancer cells present there.
I am not sure why this great doctor has not done a more comprehensive thyroid test. According to him everything looks good, but he says it with a hesitation. Also, why am I having a pain in my neck. I now feel it is coming from the thyroid. Christina - was that you you had it drained a few times. Maybe I have liquid in the nodule but the report says solid.
Sorry for writing a whole storybook here. Ladies, this is tough, not easy. My hats off to us strong women who go through this nightmare. Mine is non-stop, one thing after another. Not long ago, it was a biopsy of the right side breast. And now this. This is the worst so far I think.
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Hi ladies, I have been running like a maniac for days and haven't had a chance to catch up yet. I just read something I wanted to post for those on Metformin, before it flies out of my chemo brain.
This was not in the drug handout I received, I found it when I went to do some further on-line research, and to those of us having testing it's important.
"If you need to have any type of x-ray or CT scan using a dye that is injected into your veins, you will need to temporarily stop taking metformin."
I would have been ticked to show up for a scan and not have known that, and have had the test delayed. So if you're taking it, make sure you call them to find out whether they want you to stop the drug and for how long.
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Lovelyface...a couple of my co-workers have had thryoid issues...they have been removed...one co-worker had to have hers removed because the nodule was pushing against something in her neck that made it difficult to swallow....this was not cancer...another co-worker just had her parathyroid removed....she did have symptoms though..such as weigh gain, elevated calcium in her blood and kidney stones....once the parathyroid was out...alll her numbers went down and she lost 12 lbs.
I have heard that thryoid cancer is extremely rare and I'm not sure about mets to the thyroid either...never heard of that one.
I know you are freaking about the neck pain...could it be arthritis? It has to been something..to cause the pain...
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Lovelyface- I hope you get things resolved soon. I know it is weighing on you right now but relax. This too shall pass.
Kathyrnn- my study nurse told me to stop taking it before any surgeries or x-rays, but she never said a timeframe though. Thanks for posting this.
Thinking of everyone in Tx and those waiting on results.
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Titan & Fighter, thanks so much. My daughter in law touched my neck and said it was the muscles. But why pain for so long, right? Muscular pain should eventually go away, this has been going on since September, 11. My calcium is normal, however, maybe my weight gain is not normal. I just thought I had gotten fatter, although without reason. I have never been this heavy my whole life and I am not even eating any animal protein anymore. I can't lose one single pound and I am at least 10 lbs. more since my Radiation in March. I wonder if they can remove just the nodule rather than any part of the thyroid? Titan - are your co-workers taking thyroid medications now and don't they have to take those for the rest of their lives? Also, do they have any marks on their necks, throats? What about their voice, did that change?
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