Calling all TNs
Comments
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Titan, thanks for the reply. I don't think the rash is caused from any heavy lifting. I have had it since I finished radiation which was July 2012. Some days it seems to be worse than others , it does hurt or itch.
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Junebug - have you seen a dermatologist? I had a weird rash on my back when i finished treatment and it was shingles. Crazy!0 -
nettie- I am 3% positive, but my MO treats me as a true TN. He said the side effects of Tamoxifen or Aromasin outweighed the benefits it would provide. On one hand I'm glad I don't have to take it, on the other could it help prevent a recurrence? Who knows what is right or wrong! I wish I could give you some reassurance, but cancer is a crapshoot. We can do everything "right" and it can still come back. It is a fear we all will always have.
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stupidboob, How are you.? I don't see many postings from some of the old posters (timewise, not age). I was wondering how you were doing? Any news on OBX (karen?) or Kathyrrn?
I recently had my flap surgery on Dec 2. It was a long hard (10 hr) surgery. I meet with BS tomorrow to go over everything, but MO already told me there were 3 tumors, all TN. So onto chemo soon, not sure what type exactly. That'll be left up to the tumor board to figure out. doing this a 2nd time has set my mind and outlook back a bit. the worse part is the uncertainty, no one can say if "cure" is possible, or if I'll be fighting this for the rest of my life. I'm afraid to allow myself to hope..... Such a hard waiting game.
I wish you have a joyous Christmas holiday. This dx puts it right up front as to what's truly important. I wish you peace.
To all the others: Keep positive, those thoughts can really carry you through some dark moments. We are here to listen, learn, and encourage each other.. As for me, I had DD AC/T. Because of reaction to T, I was switched to taxotere. Then surgery, then rads. There is a formula depending on stage, grade, size, node involvement, mitotic rate, etc as to what exact tx is suggested, but from my small amount of research, it seems AC is usually given for TNBC, and often with Taxol or taxotere.
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slowloris I sent you a private message. One thing that helps me keep going and it does not work on all days it Joel Osteens mom. She was terminal 31 years ago and she is still going strong and she is healthy. I try to hold on to all the survivors out there. I am friends with a lady (not TN) but breast cancer and she had other cancers as well and she just had her 12 year. I personally think this is something we will live with the rest of our lives. It sucks and it is scary as hell but I "TRY" to just be thankful I am still here, but I am really scared of my Pet Scan coming up. Best of luck to you.
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I am 15 percent er positive..The onco treats me as triple negative, he also says i will have to take tamoxifilin for 5 years
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Btw, anybody out there who couldnot take dose dense ac?
I started off with DD ac, and after completing 3 cycles my bone marrow refused to recover, inspite of one shot of neulasta.
Emgrast injection was given twice on day 8th and 9th respectively and then the body recovered. Now my oncologist is asking me to postpone it. We were planning 4 but had to postpone it by 6 more days, since he wouldnt be available then and my fourth and last ac will be given on a reduced dosage.
I wonder is this normal, for the bone marrow not to recover in a particular cycle, and then postponing chemo with reduced dose and all... dont you think having to postpone it by 6 days is too much.
your feedback on this pls
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I had 4 small tumors, all tnbc at dx. After chemo one tumor was slightly progesterone positive. Saw 2 oncs and both agreed that the side effects of the aromasin. were too negative to recommend for me, largely because I suffer from deep and long-term depressions all my life and these got worse when I stopped taking HRT drugs.
I have mixed feelings about it all. Decided for now not to take it.
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stupidboob, I'm new to this thread, but I'm so sorry you lost your pet. I'll be in your pocket along with everyone else on your pet scan. Waiting for test results is the hard.
I had my second AC infusion yesterday. So far, things have gone much better than the first infusion when I BP bottomed out for a week. They gave me more fluids and ran the infusions much slower. It seemed to do the trick. I gave myself my Neulast shot a couple minutes ago. It wasn't nearly as nerve wracking as last week. Knowing those shots cost $10,000 each make me scared I'm going to screw something up. I must have done it right last week because my WBC was normal yesterday before my infusion. After 12 weeks of taxol and retaining about 20% of my hair, this AC is taking what's left of it pretty quickly. Eyebrows and lashes too. Oh well, I feel fortunate that I had at least some hair for so long. I knew this was coming.
I'm more concerned that my tumor has basically stayed the same size for about 6 weeks now. I thought one night that the AC had really shrunk it, but the next day it was back to the same size from outside manual palpation. They don't do scans were I go unless they think the tumor is actually growing. I'm concerned I'm going to be in the 60% of neoadjuvant patients that do not get a complete response. I've decided to fight this cancer with everything I've got this last six weeks of chemo. Vegetable juicing, exercise, yoga, mediation, no salt, no sugar, vitamin d, you name it...I'm probably trying it! I want to give this cancer the double whammy! Right now, my tumor measures 1 cm from the outside which means it's probably closer to 0.5 cm. It has shrunk from the original 2.3 cm as measured by ultrasound and MRI, but it still seems to have a ways to go.
I should have my BRCA results in two weeks. If positive, I definately want a BMX. If negative, my surgeon and MO both think lumpectomy is the way to go. I'm not so sure particularly if there are live cancer cells left at the time of surgery.
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slowloris ~ am I reading it right that you had double mastectomy in January 2012 and tissue expanders were put in at that time. Then radiation February 2013. And now you've had double mastectomy to take out the expanders and they found more tumors while doing the flap?
Trying to figure out for myself if you have a mastectomy where do the tumors grow? I'm not really up on all the TN and reading and learning here.
Thanks, gwenie
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thanks semilife4real.........it is hard losing my baby and only adds to the stress for my test. My hubby gave me my Neulasta shots and we felt the same way
with the price of it. I wish I could break my sugar habit but can't seem to do it. I can't do sugar substitutes0 -
I really think that the sugar causes cancer is a myth....I used to drink diet soda all the time until someone told me of all the chemicals in it..I avoid aspartame and any other sugar substitute...
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Gwenie, I had a skin sparing bmx in Dec 2012 with TE's, after having neoadjuvant chemo DD AC/T. then I had radiation Feb-March 2013. 5 wks later a pea size ump came up on the skin. biopsy positive, 3 more lumps appeared. Xeloda started to stabilize spread, then 2 wks ago had flap bmx. they took out TE's, used skin from my belly to cover my chest area. Even with mx, some very small amount of breast tissue remains next to the skin, and some cells can live in the lymph system in the skin. So, my tumors set up shot in the skin and top layer of chest muscle. This time the surgeon took off as much skin as he could without being too radical. My case is not the usual, My skin was involved initially, but we thought that chemo and rads had taken care of that. So don't be worried that this may happen to you. Yes, it is a possibility, so be aware of any changes in your skin, but know that my case is the exception, not the rule.
good luck to you in your journey.
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thanks Titan.................I think about us growing up on Kool Aid and Sweet Tea and it was made with sugar and we were all fine. Now, with all the artificial sweeteners and additives and the don't drink tap water, we have seen a rise. I really think it is more the life style we are all becoming accustomed to than the sugar but when that is all you read it makes one wonder.
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stupidboob-glad to see you back posting! So sorry about your furry friend, such a hard thing to get through. plus all of what was going on with you. Hope you are feeling better!
Kinda late, but thank you to titan and others that posted support for me. I am doing much better and I have an appointment tomorrow with a pain doctor. I have so much residual pain from chemo and surgeries I hope there is something that will help. My neuropathy just seems to keep getting worse, maybe it is the cold weather. Hurts to type this! I can't wait until I can get back to my pt. Still just plugging away. I miss working but know I am still not able to. I started selling things around the house, then started going to estate and moving sales and reselling items I find. I have actually done pretty good with this and I can do it at my own pace. It's kinda fun too. My husband likes to go with me which is very helpful because he can carry and pack everything!
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slowloris - how are you feeling since your surgery? You have been through so much, I hope you are healing fast!
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slowloris ~ thanks for sharing your history! Wowser! You difinitely have been through a lot! I didn't realize there was different kinds of mx's or that the TN could set up shop in the leftover skin. My mx's took the nipples and put in expanders. Then I lost one expander in August and now trying to decide what to do. Will check for lumps now in the remaining skin. So sorry you've had such a go of it.
xoxo, gwenie
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bak94 thank you...........I miss being here to help others and to learn but sometimes it is just simply to hard for me or my heart is just not in it. Been a year from hell. I sure hope that 2014 is better, the odd number years do not seem to like me. My dentist pointed that out to me...:)
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Hi All,
I'm on neoadjuvant AC now after completeing 12 weeks of taxol. I had round 2 of the AC on Tuesday and came home and had sex that night. This morning (Thursday), I woke up at 3am with a UTI. I had a UTI while on Taxol too. I know sex is causing these things. I try to be careful, drink fluids, urinate afterward, but with chemo...I think my resistance is down. I don't normally have this problem. Since AC can also cause bladder irritation, I went to our local walk-in clinic and had a urinalysis to confirm it was a UTI. It is, and I'm now on antibiotics. This is a minor blip, but an irritating one as you can imagine. I also have some Pridium that they gave me with the first UTI to help with the pain and frequency. It helps, but not completely. Oh, the joys of the side effects of treatment!
Kay
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Hi simplelife4real,
It is so great to be wanted, but between immune systems struggling and menopause KY jelly becomes a really good friend. It takes so little to be "irritated" which morphs so quickly into more. KY helped and helps for us. (And yes antibiotics when needed).
Merry Christmas!
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JJ, thanks for the suggestion. We do use a lube, but maybe a different one might help. I tried to switch over to something with less chemicals in it. The lube might be part of the problem. Someone suggested using a condom which I hadn't thought of. That might help, at least while I'm on chemo and my resistance is down.
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Gwenie-
Wondering what you meant when you said you lost an expander? I have tissue expanders, and was suppose to have implants in Oct. The surgery was cancelled due to love platelets however I have since found out that it still could of been done, because my platelets were not at a dangerous level. (I think the surgeon over booked and decided to find an excuse to cut me out of the schedule.) So my counts slowly are coming up, and its a waiting game to get this surgery scheduled. My expanders feel tight, and I would of thought my skin would be softer and loser by now, since I have had them completely filled since August. I was also informed that the surgeon who did the mastectomy "cut below the fold" which means I will have to have a ryans suture for semetry. I was wondering if you are anyone with expanders can relate to any of this? Its time I start asserting myself and start asking more questions, because I feel left in the dark about this. Hope everyone is doing well through the holiday season...
It is true that going through chemo and dealing with the wonderful side effects, all seems to go fast. I am mostly surprised how short lived the hair loss was....it seemed to grow back in a hurry. I went from long dark (dyed) hair to a short mostly gray pixi style, which I really like. Lots of changes in one years time (almost one year, sort of)....Seems like the worse part is behind me, thank god.....somehow I got through it....
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NED!!! PT/CT Scan came back clean. Doctor said no more scans unless I have symptoms. Merry Christmas to me.
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Congrats...............GuyGirl
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Shew another Pet Scan that I got through.....I am home................yay did great. Now to wait those dreaded results.
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Bak24, I noticed you only did 4 months of aromasin, may I ask why? I'm scheduled to start aromasin in January and the side effects seem they could be worse than the chemo side effects?
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guygirl....DANCE PARTY ON THE TN THREAD! Everybody dance now.....so happy for you
Maggie
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I get to see my MO on xmas eve what a present...what was I thinking?!?!?
Tonight a friend that I became close with during my journey told me her aunt died. She told me very graphic details...and although I want to be here for her I cried for myself - how selfish am I??? She like all her other family members died of breast cancer. Her whole female family has been wiped out...now it's only her and her sister. Breaks my heart.
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jenjenl not selfish at all.................this disease is scary as hell and we all deep down fear dying from it. Every little thing like that is just a reminder of what could happen to us all. Big comfort hugs
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