Calling all TNs
Comments
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Jamie -- AC was really rough for me -- had mine every 2 weeks for 4 treatments. I was nauseasted and sick just about the whole 8 weeks. Kept telling my husband I didn't think I could take anymore. He kept telling me it would be over soon and I could do it -- and I did. Just hang in there and let your MO know about ALL your side effects.
One last thought on the study I had posted the link to -- the important part is that they may have found something that will help improve the odds. Hopefully it will be approved for clinical trials soon and will be successful. I thought back to what my MO told me on my first visit -- "we really don't know how to treat TN, but we'll hit it hard with the best we know to do." He then showed me a decision making chart where he had put in my age, health, grade, tumor size, nodes involved, and receptor status. It showed that without chemo, I would have a 44% chance of relapse. With the treatment he was recommending (AC/T), that risk was reduced to a 23% chance of relapse. So, I'd rather take my chances with the chemo drugs. And, hopefuly then they will find something that will reduce those relapse odds even more.
Tomorrow I am participating in my first Relay for Life. My company is sponsoring a team for the first time. I'm a co-chariman, so I hope I can make it all night. Of course I think everyone would understand if I didn't since I'm only two weeks out from my final chemo, but I want to try. I just hope I can walk some -- still having some neuropathy issues in my toes.
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5thSib - Good luck tomorrow. Only 2 weeks out? WOW
Phyllis - Thinking of you in Nebraska. My DH is from SE NE. Tonight we had what we Californians call corn on the cob. He still calls it sweet corn. He's lived in California more than 50 years. I surely do hope your SE go easier as time passes. So nice your son is able to be with you.
Cocker - I haven't heard any stories of your trouble making dog lately. Is he/she still at it?
Jan
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Jamie, you can do this.
AC is the worst but it will pass and its worth the increased odds it gives you. Try to have someone help with the kids day 3,4, 5 after chemo. Read books, watch tv , take meds to keep you calm and sleepy. Taxol is not ad bad. This is temporary. Have girlfriends over to help you. It will pass. It stinks but it will be a memory soon0 -
5thSib....DD AC was tough for me as well. Had to quit after the 3rd round due to PEs. They changed the DD Taxol to 12 weekly and that was fine.
I am really annoyed that my MO never even mentioned I am basically TN with just 2% ER+...and he still insisted I take Anastrozole. I just read my path report a few weeks ago and asked him if am I basically TN. His answer was "they are just words". WTH does that mean?
Good luck with the walk...I also have neuropathy in my toes but no pain. My MO said it would go away but 14 months PFC, it's still there. Nothing terrible, just annoying at times.
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My onc said maybe tamoxifen for a 4 percent estrogen this time. I don't think so.
We will test again on Sx patho. Surgery next week on Wednesday. Scared and sure could use some recurrence encouragement from any who have done this.0 -
Jan - yes, they do call it sweet corn here. I can't wait for it to be ready! I love summer dinners of sweet corn and sliced garden tomatoes.
Great news today. My brain MRI was normal!! Yippee!
Phyllis
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Great news Phyllis! Celebrate today-what a great way to start the weekend
*******Happy dance*******0 -
Phyllis -- Hip, hip, hooray! Good brains are nice to have. Sweet corn, tomatoes, and a grilled burger. That's what summers are made of. Jan
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Phyllis - Great news, enjoy your weekend!
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Hi...I am new to this site and newly diagnosed with TNBC. Just had bilateral mastectomy April 18, 2013 for rt breast cancer tumor was 6.2cm and 1 microscopic invasion of 1/22 nodes + ... stage (per surgeon) 2b path report says stage 3. Waiting for an appointment to see an Oncologist. Surgeon says I don't need radiation? not sure if that is accurate. I will be doing chemo soon I'm sure. Wish you luck and hope side effects improve so you can get all recommended treatments.
Anna
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So sorry for your news. We all know how scarey it is to be newly diagnosed, but you have come to a great source of support from lots of experience sisters.
I can only speak from my own experience. I had ACT and the 36 radiation treatments. I'm doing fine 2 years out. Your medical oncologist (MO) will be giving you his/her best opinions. Not sure why surgeon would tell you that you don't need chemo. You will feel better once you have a plan for your care. Best wishes.
Jan
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Jamie,
I had a very hard time with AC, and I was a very healthy 44 year old. I had a much easier time with taxol. My advice would be to work with your oncologist to manage the AC side effects as best you can, but try to complete the treatment as scheduled. It is very unpleasant, but can really help get rid of the cancer. I believe with TNBC they try to hit it hard up front. (have seen others same the same). I am sorry you are going through this.0 -
Anna,
They recommended radiation for me with a 3.1 cm tumor and 1/4 nodes positive. I did ACT chemo first, followed by a bilateral mastectomy. There can still be stray cells in the skin or mastectomy scar or remaining breast tissue, so they still recommend radiation sometimes (not sure about your case), even with a bilateral mastectomy.0 -
Titan - Just did a 5 K last weekend. Had a mammo Tuesday, waiting to hear from the surgeon to schedule a colonoscopy, doing a 5 K the first weekend of May. It's great to be back to approximately a normal life.
To all - yes, life does go on after chemo and radiation. Nat
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5thsib - good luck with the special walk. I thought it was awe-inspiring to see all those other survivors. Gave me great hope. Nat
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Phyllis - great news on the MRI!
Last night I had a "spell" I was weak as a kitten, couldn't get my words out, my tongue was numb and I was alternating crying and laughing hysterically.
DH and 13 year old son were scared to death.
MO said didn't think it was brain mets (because I recovered, although I read symptoms can come and go) didn't think it was Exloda or a
stroke, but to start taking a baby
asprin.
I have a few things to look forward to in the next week. So I'm not in a
hurry to know just what happened.
If it happens again, I told my
husband to take me to the ER.
Tomorrow, my best friend from HS is coming to visit !0 -
OBXKaren - What a scare! Glad it passed. I'll be holding your hand during those "things you look look forward to next week."
I'm still sitting by the phone waiting for results of my thyroid/parathyroid biopsy. It's been a week and I'm about to implode, or maybe explode. Still rocking my lazy boy as fast as I can.(chair, that is)
Wishing each of you some joy this weekend. Jan
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Hi Everyone. I've been a bit MIA dealing with the rads and I am finished. I've been bitching about it on the Spring 2013 rads threads. It has been a tough time for me with an esphogus burn, the rads burn and shingles on top of it. I am here to tell you all to GET the SHINGLES VACCINE!!! None of you should suffer this when it's preventable and when we are going through treatments it's a not so uncommon side effect. Make them give you the shot!!! We all should be advised to get a flu shot, a pneumonia vaccine and a shingle shot before we start these treatments. I wish someone had advised me to do those things.
Anyway
Jamie, Hi. You are going to get through those treatments. You can do it. Advocate for yourself and keep on top of the SE's. You will get through it. Come here, go there do what you have to get what you need. The treatments are scary and hard. THe best thing I did for myself was to walk almost everyday. It really helped. I did as much as I could in between all the tough times and it's been rough for me. I got back out into the park today with the weather so wonderful and a break because of the freakn shingles, I couldn't exercise. Keep going!! Treat yourself well girl, be good to yourself. It's going to be rough but you can and will do this. We're here for you!!
Anna, I had similar stats but different treatment course and they did the rads on me. THere are some threads out there about to do or not do the rads. You might want to give them a read.
OBXK - that episode sounds crazy. I am glad you moved beyond it. I wonder if it could be some sort of allergic reaction? I like this new avi of yours.
phgraham - good news on the brain mri
LuvRVing - I am happy to hear about that little break you got. I want to have one too. I'll be there soon.
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Karen - Sorry you had such a scare! It sounds a little similar to one that chickadee described but yours had more physical symptoms. Thanks for letting us know. Hope there is no repeat!
Phyllis0 -
Jan - I hate a weekend wait! Good thoughts headed your way - try not to wear out any of the lazy boys around your house
QueenKong - so sorry you have shingles, talk about insult to injury! I hope it quickly runs it's course and that you don't go mad in the mean time.
Phyllis - I'll have to go back and look for chickadee's post. I didn't want to post my "spell" there, as I didn't want to scare anyone.
Luv - so glad you had a break, and were able to enjoy yourself.
For all the ladies in treatment - wishing you few side effects and lots of rest.0 -
random question - i always see people say that TN is grade 3 and maybe I am reading my path report wrong but which one is the final grade:
tubule formation grade 3, nuclear grade 2, mitotic rate grade 2, combined histologic grade 2.
Today I woke up and the 1st thing I thought about was cancer....damn it.
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Hi all,
Did anyone else's nueropathy come with blisters and itchy rashes? My hands looks terrible and now my feet are starting up.
Take care.
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Teresa, mine came with a mustard colored seepage under the nails and my the tips of my fingers look like fingers when you have stayed in the pool too long. I'm 6 weeks out from the taxol that caused this and there is no improvement so far.
Oh the price we pay for treatment physically is outrageous!0 -
Thank you for responding. I haven't taken taxol yet and I have decided not to, so all of these blisters and rashes are from AC. I have one more treatment to go next Tuesday, then I'm done. My surgery for my permanent implants is scheduled for June 11th. Yay!
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Thank you all for the encouragement and support. This has been such a tough round for me to get through, I am just starting to feel better but I already have to go back on Wed. I am really hoping that the next round goes better. I did go to the Breast Cancer Coalition on Friday to get some added local support. I really felt good about going, seeing and meeting women just like me. I am half way over the AC hump and know the next two rounds will be tough but I just have to find a way to get through it. It is encouraging to know that the Taxol may not be as hard on me. It is something to look forward to. I hope you all are doing well in your journey and thank you again for reaching out and making me feel better.
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QueenKong, what are the symptoms of shingles? If you don't mind my asking? Please feel free to private message me, if needed.
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jen...the grade 3 thing ...I think that all your "scores" are added up....I believe..but don't quote me that 8-10 is grade 3....my score was also a nine
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jen, Titan's right. They add up 3 scores. Yours comes to 7, overall a grade 2. I know mine was 9/9, grade 3. However, my surgeon explained that this is an imprecise "science..." one pathologist may score what they see a little differently from another. I tried not to get too hung up on that nasty number...TN is known to be aggressive.... which is why it responds well to chemo.
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Stupidboob,
I have done 14/33 rads and so far no problems except a bit more fatigue. My skin might be a bit darker but not anything anyone else would notice. The worst part is the hour drive each way for about 3 minutes on the table. I use a cream called My Girls and pure aloe.
Hugs, Sheryl
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So hard keeping up with everyone on here, so much chatting.
Theresa my hands were terrible on Taxol. Red, blotchy, blistering, irritating rash that nearly drove me mad. I could hardly type because my fingers kept splaying out and sometimes the left little one still does and when I type instead of A I get Z, really annoying but the rest of my hands are much better now. My nails were also a yellowy colour but they are slowly coming right. Just hang in there girl.
To all you ladies who feel like giving up on AC, try to hang on, it will be worth it. I wanted to give up from treatment 1 but the ladies on here carried me through as they will you. I had AC every three weeks for 12 weeks and thought each time that I couldn't carry on but I did because after the first four bad days I then got two good weeks. Just remember to drink plenty of fluids, eat what you fancy and rest as much as you can with a little bit of exercise thrown in because it really helps. Thinking of you all.
Jan yep my little Chloe is still around but only just lol. Just before I leave for work each day I close all doors so she only has the lounge to go to and its been working UNTIL, I went to the garden the other day and because we have had hardly any rain for so many weeks the grass hasn't been growing so much so I looked under the caravan to see if the grass was long and what did I see, a stash of tins, bottles, plastic you name it. She is so little but somehow she had got into the recycling bin and taken out what she wanted then gone under the van with them. Again teeth marks in every tin and packet. She must be the only dog with the sweetest face but teeth like piranha's. I threaten her everyday but my daughter said "but mum you threatened us every day and we turned out ok" lol. The thing is she is so gorgeous and I love her to bits but she is a trial.
LUV so glad you enjoyed your trip. Now back to the job of kicking that cancer's arse.
Titan yep those thighs are clapping for you. Keep up with the good work girl and I will sit and think of you (with me flag). lol.
Just had a bacon sammie for breakfast, weren't arf nice. Bugger the cholesterol.
Bak hope your hip is better now and you are back on your bike with hubby. xx
Have a good day ladies. Sunny here today lulling us into a false sense of summer when winter is around the corner. Oh well I think I will mow the lawns. Warm hugs to everyone with love.
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