Calling all TNs
Comments
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NavyMom
I hope this will be your boy soon. xx
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So sorry to hear about the recurrences. I can't offer any insight on secondary chemo regimens, just wishing you all well.
buccaneers - are you BRCA+, or are you still waiting on results? BRCA+ women have a significantly higher risk of ovarian cancer (20-45% I think). Not sure what, if any, role hormones play in that, it is what it is. And given the difficulty of detecting ovarian cancer early, many opt for Hx especially if they are past their child-bearing years.
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Kathy,i have not had a reoccurrence yet, but if I did, I would want to know what other chemo options there are, for just the reasons you mentioned. You could get some ideas from the recurrence thread to run by your oncologist (and a second onc) asking risks and benefits. Since chemo is a systemic treatment ( I even lost precancerous cels from too much sun while on the same regimen you were on?
I think you're right to consider all the chemo options!
Hugs,
Peggy0 -
So sorry to hear about all the recurrences
. When I had mine, they did not recommend chemo - but that was a year ago and it sounds like things have changed. They said if I did want to do chemo, it was my choice - but it wasn't AC/T like I'd had before, which was obviously ineffective. It was a combo that I hadn't heard much of before, and sorry I can't remember. This was per Dr. Carey at UNC. I only did rads for local recurrence since I hadn't done a full course of them yet.On to an unpleasant topic, pls skip if you want... How much of a life expectancy do you all honestly feel you have left? Not just with cancer recurrence - is there any info out there on the toll chemo and rads takes on life expectancy? I ask because I'm chipping away at my 401K because I honestly feel there is no way I'll make it to retirement, based on my nodes, local recurrence, and overall feeling like crap from chemopause. I'm almost 47, cancer showed up at 42. I guess TN hasn't been around long enough for there to be any data on this. What have you heard, what do you feel?
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Minskie,
Like you, I was eager to hear my odds of having a long or short life expectancy. Using statistics, I was told that even with my early stage tnbc I had about a 20 percent chance of recurrence in the first three years following aggressive chemo and double mastectomy. I freaked out initially. This still doesn't tell me the chances of dying, since there are new treatments to try.
As for the money issue, that's a hard one. My husband and I will basically be living on social security with our meager 401Ks for emergencies. We are moving to an area with a much lower standard of living. I go in and out of worrying about money in retirement if we get that far. If you are disabled by cancer for a year or more (consecutive) months, you can apply for social security disability, which was a source of security for me when I had another illness that disabled me much more than this one some 4 years ago. I fought for my benefits as I had worked and put into the SS system for forty plus years. You can still earn up to a certain amount of money and still get benefits. If you want to hear more about this option PM me. Even if you never use it, it can be one source for financial peace of mind.
Hugs,
Peggy0 -
kathyrnn: I think you might be talking about me with the regional recurrence. Mine is behind the pectoral muscle and up the lymph nodes to the collarbone. I am not sure but I am thinking yours might be a regional as well from what I have read but there are so many little things that make things so much different. So, your surgery is that to remove the lymph nodes? I had 15 removed. What is the Calor Study? I am going for chemo tomorrow and I too will ask my doctor about the Taxol/Taxotere. From what I can understand Taxol is great at killing the cells but leaves behind the stem cell and the Taxotere does not. With that being said it is one of those things that you need to read up on yourself so that you can take from it what you feel is the right reading. There is allot of information that even the MO do not agree on. THAT IS SAD!!! We will be waiting on the couch for you when you have time to sit. First go around for me was AC then Taxol. Second time I am getting Cytoxan and Taxotere.
TO ALL LADIES: I did not have to have radiation at the time of my surgery (mastectomy) because I only had 2 lymph nodes positive and the rule then was 4 or more or a tumor larger than 5 cm. THE NEW INFORMATION NOW STATES ANY POSITIVE LYMPH NODES NEEDS RADIATION NOW.......while I did not want to do radiation I sure would have preferred it to doing chemo again and then radiation.
Phyllis: No biggie on the little ones............:) To me they are my kids so that is a true statement in a way..:)
Sweetpickle: From all I have read the first 3 years are the worse for recurrences. I was just a couple weeks shy my two year mark.
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slowloris: Did they let the radioactive glucose sit for an hour? I had to sit in a dark room for an hour while it ran through me.
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On the life expectancy subject: From the way I feel right now, I don't think I will have a long life. I try to stay positive but what good did that do me..........it still came back and I thought I was on my road to beating this monster. I read in Dr. Susan Loves book that with a recurrence there is a shorten life expectancy but she also states that we are not a statistic. I have never come right out and ask because I am one of those people who will stress on it and die for sure. I just keep trying to tell myself through the tears that just maybe tomorrow will be the day they find the cure or at least a targeted therapy for us. I have seen people who one would think would have died years ago (from various things) and they seem to live forever and then there are the people who look like they would be the picture of health and they die. I guess we will go when our time on this earth is over regardless of what takes us. It is hard because cancer consumes me again, but it might not even be cancer that ends my life. Ok, have to stop this subject or I will be spending the rest of the day crying. I have CHEMO tomorrow and I so don't want to go............
ALSO WANT TO ADD THAT I AM ON THE SAME WAVE LENGTH AS MANY OF YOU..............I DO NOT TRUST ANY OF THE MEDICAL FIELD....
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stupidboob. (love that moniker) I really don't know exactly, I'll ask my husband if he remembers how much time lasped. I was talking to a wonderful woman sitting next to me, so perhaps it was an hr. So, about this mystery woman...She oveheard me crying to the technician about my cancer returning 6 wks post rads. she told me she was also TN, stage IV. although she used a cane due to neuropathy, she was alive and continues treatment for 6 years! I believe the 6 yrs was in reference to the stage IV. What a wonderful smile,positive outlook, and warm heart. as I lay in the PET machine, a peace came over me that no matter what the future holds, faith and hope will get me through it.
As far as odds go for life expectancy, with local recurrance of TN, my MO yesterday told me with tx of chemo, 79% 5 yr OS. I think about the victims of the Boston marathon and of the OK tornadoes and I realize that just because I have cancer, my odds of dying are only relevent to cancer. Other than that, it's a crap shoot - any of us could go at any time for any reason. Look at it this way.. Once we mourn the loss of the experiences we MAY not have in the future, we should then rejoice that we have been given a reminder to live each day the best that we can and enjoy that day to the fullest.
If many people play the powerball lottery thinking they can win with a 1.75 mill/1 chance,(and someone does win), than why do we not expect that we can be that % of people that beat this disease? Keep the faith.
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slowloris that is almost my exact thoughts...............:)
that is a great story that you shared with us. A friend told me yesterday to be thankful that there was still treatment hopeful for us. Her mom as told she had cancer and she said no way she was going to do any treatment and the doctor looked at her and said that was good she felt that way because there was no treatment for her. I dread the day they tell me that......:(
as far as the petscan you got lucky if they let you talk to someone. I had to sit in a complete dark room for an hour and they would not let me even read a book. I was reading up on the way they do them and they say you are not suppose to talk or anything when getting this radioactive substance because they do not want anything interferring with the distribution of the med. Kind of wish that they would all get on the same board. Then again if that were the case we would have no need for second opinions.
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Doing chemo for a local recurrence and keeping your fat intake low boosts you up to the 70th percentile range of disease free survival at 5 years so good grief, don't give up!! Those are good odds.
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Hi ladies. It's been awhile since I've been here. Just trying to get on with life I guess.
Hope everyone is doing well. So sorry to hear of all the recurrences. That is my ultimate fear that consumes most of my thoughts.
I actually had a question about ca2729. I just had tumor markers checked this week with my mo follow up. The first time she ever did this lab. Anyway. The nurse just called to tell me all labs looked great and were normal and they would see me in 3 months. My market was 24? Why does that seem high to me?? She said no though. Anything under 38 is normal. Why do I feel like after bmx and chemo it should b lower. But I never had it done before so I can't even compare. Any thoughts. What do your markers usually run?
Ugh. Just something else to consume my thoughts!
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Good evening ladies!
I just returned from my surgeons office. I need to vent a little and understand what went wrong and if my surgeon and I can get back on track.
I was at hospital A before going to hospital B. the plan with my new surgeon was to shrink my tumor before surgery to save the breast. We were going for a lumpectomy. The chemo therapy zapped the cancer. She can't find it by touch or by ultrasound. I will go in for a MRI next week.
When she did the ultra sound she could not find a tumor marker. Turns out that because hospital A did not put one in,she is no longer confident with the lumpectomy option. She wants to do a mastectomy now.
Is the standard of care usually to put in a marker when a biopsy is done?
I am crushed. I know it's just a breast, but its mine and I wanted to avoid a mastectomy. My blood shows I am anemic and now need a transfusion.
I am sooo disappointed!0 -
I don't post a lot, but read often. So many reoccurrences and from those who have been doing all the right things. I only had 7 of 8 chemo sessions, because they found what was thought to be a tumor in my heart and I had open heart surgery only to find it was a clot. I didn't have radiation either as no node involvement. I started exercising and watch what I eat, as well as stopped drinking. It will be two years this August and still the fear creeps in often. Tried to get life insurance this weekend and was told I need to wait ten years. I can't get STD or LTD either for at least 5 years. Just when I try to go on there is always a reminder. Sorry to be a bummer, also a friend who was dx with stage IV colon cancer when I was DX with BC lost her battle yesterday.. Cancer really does suck.
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Thanks, Cocker. My boy is coming home in 2 weeks (at least that is the plan so far) Its been a long 6 months.....
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this living/dying conversation really interests me...I dunno...not sure if I want to be 90 years old drooling and wetting myself in a nursing home ..not knowing who anyone is...now...if I could be 90...still look ok..and still be have my mental and physical health..well...now that is a different story.
Guess..I am talking about quality of life compared to quantity...guess we don't have much choice though really do we?
Oh and Navy Mom..welcome home to your son...I'm so excited for you to see him..give him a huge hug from me ok.....so amazing to have him home..safe and sound with you...
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Slow - gemzar is very tolerable. Hair thins, but not total loss.
Kathryn - I had taxotere/cytoxin for my recurrence. With mets, they started me on gemzar/carbo.0 -
OBXK, sorry to hear of your progression. I see you are are starting xeloda. After meeting with my 2nd opinion, I too am starting xeloda. tomorrow, in fact. She thought it would be better for me than carboplatin and gemzar with toxicity since i am only 8 wks out of initial treatment. keep me updated on how you tolerate it, I will do the same. I do not have mets, but apparently my TN is extremely fast growing and aggressive. Good Luck.
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Dear ldawson01 - Wow, I can't believe that Hospital A did that to you. Of course, the standard of care is that when doing a biopsy, they put a marker in the tumor area, it is a must. I had two biopsies done, and both times had the marker put in there. What do you mean, it is just a breast? I don't think that way at all. Saving that one breast mean how I would feel the rest of my looooong life and I mean long life. I intend to live a full long life of 80plus years, with both my breasts, even if one is deformed with a big dimple. If it makes you feel any better, my cancer breast is deformed due to a doctor negligence who did not see me on time when I had a severe infection. It is forever deformed. The only way it can be repaired is if I agree to put in an implant in the cancer area, which I am not prepared to do yet. So I live with it. Your story brought my anger back, I am so mad to hear that this happened to you, since a similar thing has already happened to me. Heard later that the surgeon was "not" board certified. She no longer practices with the hospital she was connected with before, which is where I had met her.
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Melissa114 - In response to your post - I experienced that when I had done a biopsy, my next tumor marker test number had gone up to 20. My Onco. explained that happens. Did you get any biopsy done, either of breast or thyroid? Anyway, I have a spreadsheet where I mark down my tumor markers, all three of them. My Onco. had also initially done a baseline, but just of the CEA and CA15-3, not of the CA27-29. My CA27-29 numbers since radiation has been 9.2, 7.6, 11.6, 17.2, 20.2, 12.5, 9.9, 11.3, 13.5. I just did one yesterday and don't have the results. Do you see how once it had reached 20.2? Yours is 24, which is pretty close to 20. Unless you have other symptoms going on, please don't worry too much. Somethings does affect the CA27-29, not sure what. My other two tumor markers are always very low number. But CA27-29 jumps around as you can see.
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As far as mets and recurrences...I cannot provide global stats although my onc said my chances are less than 10% based on my staging and treatment. However, there may be a perception by those who participate on this board that mets and recurrences are more frequent than the stats support. This is logical because we would expect and hope that women in need of support would participate more versus those who are years out with NED. My heartfelt thanks to those of you who are years out that encourage us and also to those with recurrence that aid us on your extended journey.
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Lawson,
I agree with lovely face about the standard of care being to leave the biopsy markers in. This is probably a stupid question but cannot they do an MRI of the breast to find out if there is any evidence of a tumor that has shrunk? If they can, why couldn't you have a lumpectomy then?
I went for the double mastectomy (my cancerous breast was multifocal and lumpectomy wasn't an option for me) but I totally support any wishes others have about their reconstruction. After the shock of being diagnosed, the emotional upheaval. The SEs from chemo, we deserve an ending we feel good about.
I have a younger acquaintance who had to go the mastectomy route and she is extremely happy with her DIEP reconstruction. Feels like her own body there (because it is). I a happy with my implants but am a little regretful I didn't go the DIEP route.
Hang in there, you will be able to come out of this feeling good about your breast (as good as any of us feel). A second opinion may be worth getting for peace of mind.
Hugs,
Peggy0 -
NavyMom just had to tell you. My daughter brought tickets for us all to go to a concert tonight. We also went to it last year and it was fantastic. It was the entire Royal New Zealand Navy Band and it was just a fabulous as last year. We sang, clapped and had a ball of a time at all of the wonderful music. They also did lots of funny stunts to make us laugh and it was great and if a tear rolled down my cheek when they played Abide with Me it was in the hope that your wonderful boy comes home safely soon. They also showed on a big screen the ships in convoy on the sea, the training that they go through, the places they live in on the ships and all the fun they have and lots more. xx
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What a nice post, Coocker. Here in the USA it is Memorial Day weekend. It was meant to remember those we have lost. Most folks look at it as the start to the summer season. But for those of us who have loved ones serving in the Military, this weekend is quite emotional. I can relate to your love of the Navy band. Patriotic music always makes me cry. A Mother's worry for all of our soldiers near and far and missing my own son with all my heart. So ladies, enjoy your holiday and remember to thank a vet and any active service members that you make come upon.
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Hi Everyone.
Today is a sunny here is wisconsin but a bit brisk....doing ok, leaving to go to my sons High School graduation ceromony, and then to Northern Wisconsin for a Hillbilly Wedding.....should be interesting, I told my husband I refuse to socialize with a bunch of sloppy drunks. ( I am not a snob, but can't stand it when people get out of control from alcohol.)
Stupidboob....you are a supportive caring woman ....always having words of encouragement. I appreciate your honestly and am glad you vent here....that is what makes this site so cool....its ok to be where we are at, however when we are down, it is necessary to have someone nudge us and remind us to have hope....
I hope everyone has a great holiday weekend..................
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Lawson: I'm so sorry that happened to you! Either Hospital A should have left a biopsy marker or Hospital B should have checked for one before chemo started (I can't understand why they didn't).
I am fairly certain my biopsy did not have any marker, but then I wasn't doing neoadjuvent therapy... I went right to LX and my BS relied on MRIs for location/size etc. At the time of biopsy, was Hospital A planning to offer the neoadjuvent route....?
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Congrats navy mom, thank your son for protecting us.
Recurrence sucks. I do think its skewed here. I know that for the past 3.5 years., I got on less and less. I didn't eat as well as I could. I was in decent shape but nit under 25 percent fat intake. I drink wine. And bourbon in the winter if I feel like it. I had all 8 chemos and did great. My onc thinks chemo killed everything but that I had more cells lurking in my breast that turned for unknown reasons. No mets. Just another damn lump. Breast tissue all gone now. DIEP flaps. Will not be drinking if eating bad anymore. But know that could still get mets and that scares me most. Pet negative but my onc always does baseline ct of Ab, chest, liver, and bone scan. Sees smaller lesions. So please pray it sees nothing. I don't like doing this again. Carbo and taxotere for 18 weeks but I do not want to be stage 4
I'm not very brave this time , was a lion last time, have to find my courage again:)0 -
sending prayers and hugs and positive thoughts!!
angie
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Thanks for all who responded to my question! Makes me feel better! I keep talking to my ONCO about it and he says not to worry! But it is so hard! I just had Taxol # 3 yesterday, May 23, with 9 more to go, then on to RADS! So far, none of the treatments has been terribly hard on me, I've only missed work on the day of treatments!
So all in all I'm lucky, just wish all this "other" little pains would go away! I'm so tired of worrying! But I guess this is how it's going to be!
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Interesting info from Life Extension Magazine (November 2012)
Nutrients that Restore Receptors that Enhance Standard Treatments
Roughly 70% of breast cancer cells depend on a continuous supply of estrogen for their growth, while a smaller number of cancers depend on the growth factor called HER2/neu. These cancers can potentially be treated by interfering with the receptors, making them (at least in theory) less dangerous.
Between 15 and 25% of breast cancers, however, are so-called "triple-negative" cancers, meaning that they lack any of the three receptors (estrogen, progesterone, or HER2/neu), and are correspondingly resistant to treatment. Among the most exciting discoveries in the epigenetics of nutrients for cancer chemoprevention is that many nutrients can restore one or more of those receptors to the surface of breast cancer cells, lowering the bar to effective standard treatments such as the estrogen receptor blocker tamoxifen.15
Other nutrients can modify at least one of the receptors, impairing the cells' ability to receive the growth signals they require, and triggering their early death.
Nutrients (and a drug) capable of epigenetic chemoprevention through modification or restoration of breast cancer receptors, or which have effectiveness against triple negative cancers include:
- Coffee
- Conjugated linoleic acid
- Curcumin
- Green tea polyphenols
- Melatonin
- Metformin
- Omega-3 fatty acids from fish oil
- Sulforaphane from cruciferous vegetables
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