Calling all TNs
Comments
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Hi Titan -
Thank you for your post and wonderful news. I was just diagnosed with Stage 3 triple negative BC with lymph node involvement. I am 48, overwhelmed, and scared. I am on AC + T dose dense. I have my fourth dose March 9. The side effects are awful. Any advise is greatly appreciated...
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so awesome to hear from you Titan. It's comforting to read your words and know that you started this thread that led me to bco and the wonderful support when I was first dx and scared shitless. I remember googling triple neg and the first thing that came up in my search was this thread on bco. What a lifesaver to know it was not doom and gloom also. I am grateful for the support here and am inspired by the stories of those that are thriving after treatment.
I am 1 week past finishing all my treatments and after 10 months since dx to surgery to chemo and then radiation I am just trying to live life again. It's a day by day thing and I am still adjusting to life after treatment. I feel like I'm flying thru without a net but after hearing about those that have made it thru to the other side I feel better step by step and day by day. I just have to remember to breathe. And laugh a lot and smile. And especially not to take things so seriously to appreciate the little things in life.
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I am right with you Shopgal about appreciating little things and laughing every day. For me one of the few positive things about getting a Cancer diagnosis, is that it makes me realise how great and funny life is! Cosmic hugs both for you and for Titan for starting this thread and to all myother triple neg sisters: no one wants to join this club, but it seems like everyone in it is happy to have found the rest of the gang..... X
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Titan, so glad you popped in to say hi and to give us the good update, So happy for you and your family,nThank you so much for starting this thread. It is a soft spot to land for sure.
Peabrain, so glad your surgery went well. Hugs to you
Nala, so sorry side effects are a problem. What has been bothering you...nausea, fatique? So SORRY Hang in there.
Sylvia, So excited to see your 4000th post was was on this 1000th page! You are such a dear lady and I am so happy you have brought such comfort and info to so many people.
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2nd AC yesterday. Not much diff so far from 1st one. Got my hair cut shorter. Still no clumps but a lot more loose strands when washing.
Our new rescue dog had 2 seizures yesterday. Rushed him to the vet and he has elevated blood counts for infection. Antibiotics and we gave him 2 diazepam for the seizures and if he has another one to give again. Plus a deworming pill just in case the negative fecal result from a month ago didn't miss a parasite. So far so good today! Cross your fingers
Sydney wanted color in her hair like mommy
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Nalagirl.....I don't like that you are having horrible side affects..you shouldn't have to have them..but since you are (and you are the same age as I was when I was going through this crap) I remember the diarrhea/or constipation..both stunk...the feeling that you were hit by a truck was nasty as well...the chemo brain...i could go on and on..the neulasta shot really did me in too...I did work through it all..tried to walk a little every day...made sure the bedroom was dark and cool so i could get some sleep...ate whatever sounded good...tried to keep things easy on myself...it was my son's senior year in high school..so busy with all that involved...did well until the day before his graduation party...and well...I just couldn't do anything for it...was exhausted (just had my 3rd ac)...I just had to rely on friends and family to take over...i just couldn't do it...the next day..I was fine...the hardest thing for me was to give up control...lol...and let people help out...
shopgirl..I was just thinking about the laughing thing today....I don't remember the exact moment but the time I actually had that full belly type laugh was when I knew that I was ok...I could deal with it...
Hausfrau..you and your daughter are absolutely gorgeous....keep up that smile...!
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Hi everyone,
As far as the Latisse goes, I have blue eyes and there's been no change. My understanding is that Latisse was initially developed as an eyedrop for glaucoma (and they noticed the patients grew gorgeous lashes). So they were purposely directly putting it in their eyes constantly. A tiny percentage of them had the eye change. My understanding is that no one using it as Latisse for eyelashes has had that happen, but they need to say it's a potential side effect.
One thing that has happened to me lately, and I'm SO glad I read about his on one of these threads or I would have been shocked and horrified, is that my eyelashes fell out again, 4 months after chemo. Apparently this is common, and they are already halfway back. The theory is that all of our eyelashes have about a 4 month lifespan. So we lose an eyelash every day or two, but we don't really notice, and the eyelashes are on staggered schedules. But after chemo, they all start growing in on the same schedule, so they mature to 4 months at the same time. So you notice a lot of them falling out at once. Supposedly this might happen to me at 8 months and 12 months, too, but eventually they get on a staggered schedule and you stop have a mass simultaneous exit of lashes! So I'm keeping up the Latisse, and it is really impressive how quickly my lashes are re-growing. (Still mad about this though--just when I was loving my super-long lashes, they fell out!).
Yes, thanks to the long-term survivors, we really appreciate your stories!
Love the photo, too, Hausfrau. You'll do great and get through this chemo!
As for the seminar, the doctor answered an important question I had, so I was very happy with it. But it's true for me too that the most valuable part was the medical part/doctor, and less so the social worker & survivors more general info.
Deb, I'm 1% ER+, and completely negative for PR and HER2. My doctor calls it TN, as did my 2nd opinion doctors at Dana Farber. Also I qualified for a TNBC clinical trial with my situation, so in my understanding that is triple negative. My understanding is that I would not benefit from tamoxifen or anything else that targets the estrogen receptor. If you are closer to 5%, that may (?) be a different story.
Tulips
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Hello Titan,
I am just popping in to say that I was thrilled to see you back on the thread that you created nearly six years ago.What a thread you created and what a lot of lovely women have kept it going.
I also wanted to say congratulations on being seven years out.
I was glad to know you are well and getting on with your live.
Fond thoughts from the UK.
Sylvia.xxxx
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Hello Meadow,
Thank you for your kind words. I always look out for your posts as you give such support on this thread.
I could hardly believe that TNs had reached 1,OOO pages. It seems only yesterday that Sugar 77 was excited that the thread had reached 100 pages!
I do hope all is going well with you.
Fond thoughts, Sylvia.xxxxx
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Titan -
Thank you so much for the note Andy encouraging words. I have my fourth dose of AC on Wednesday. Then I will start the Taxol. My hands are already affected from the AC. So I am worried it will happen with the Taxol. Did your hands peel?Yes- I will try to walk everyday. Thank you.
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Thank you Sylvia, you are such a sweet lady.
Haus, you and that darling ginger baby girl! So precious. If you have had your second AC, I would expect you to be shiny baldy next time we see you. This is OK! It is temporary...hair grows back and you will think...DId I take pictures of me bald? I can't remember what it was like! I know it is hard to believe but true. Hang in there.
Nala, unfortunately I did not find anything to help with the neuropathy. Any suggestions from the rest of the group?
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My MO recommended glutamine for neuropathy. I asked my infusion nurse about icing hands and feet and she said there are no definitive studies, but you are welcome to try it anyway.
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I iced my hands and feet and also took the glutamine. My neuropathy is gone in my feet and only a few fingers burn on my right hand but only occasionally. If that helps.
Titan & Sylvia: how blessed we all are to have your support and the trustworthy wisdom that you both have poured into this thread & the UK thread. We are all so grateful. Thank you.
Gentle hugs to all the new ladies. We are here for you. Keep on fighting.
Prayers, love & hugs
G
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I'm doing 12 weekly Taxols and I suck on iceblocks during the Taxol infusion and have minimal taste change after treatment. It's worth a try.
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Hi all - I'm new to this forum. It's very reassuring to see all of the success stories on here. Everyone here seems so brave. It gives me hope for what I'm told is a very scary diagnosis of TNBC.
I'm 55 yrs old and was Dx with what I thought was DCIS on my right side - left side negative. I choose to do a double mastectomy since I've had years of bad mammograms and felt like I was a ticking time bomb. Had the double mastectomy on 2/16/16 - pathology came back with DCIS on the left side too. Right side was not just DCIS but IDC too - 6 mm - node negative. Found out a week after that the IDC was triple negative. I'm devastated of course and having a hard time wrapping my head around this. Saw an oncologist on 3/04/16 - and although the cancer is gone for now, she recommended chemo to lessen the chance of recurrence. I'm scared to death of the chemo but will do whatever is necessary to save/prolong my life. The oncologist I saw is recommending TC chemo - 4 rounds - every 3 weeks. Should I seek a second opinion - I know there's not much of a choice for TNBC with regard to treatment. Is a few rounds of TC chemo the standard protocol? I'm so worried about the side effects - pain, nausea, neuropathy, hair loss, etc.
Can anyone here let me know their experience with TC chemo? Was it painful? How long until my hair falls out? When will I start to see my hair grow back? I have so much anxiety and so much fear of the unknown.
Also very worried about follow-up care. How do they monitor you for recurrence? The oncologist I saw said that she will see me every six months and ask me a lot of questions. Is that enough?? Are there tests they can perform to reassure me that the cancer has not returned??
Thanks everyone!
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During Taxol I did the following and didn't get neuropathy. But, I know others who did the same thing and still got it. I do think each individual is different in how their body reacts to these chemo drugs. I took vitamin B6 daily and L-Glutamine. I did not ice. For my nails, I put vitamin E oil and tea tree oil on them daily for the anti-septic properties. I had a little lifting of my fingernails, but did not lose any nails.
I also ate lots of M&M cookie ice cream sandwiches. 1-2 daily. I really think that helped with it all
. They were actually the only thing that tasted good, so I went with it! 0 -
dmp- I have a few questions. Is the C in TC carboplatin or cytoxan? From what I have seen the standard protocol is AC + T. Sometimes carboplatin is added in. I wish I had carboplatin because I did not have pathological complete response (pcr). I'm not sure why they wouldn't give you adriamyacin. I would ask about that- it was during A that my tumor shrunk until it wasn't palpable.
Everyone is different in how they react to chemo. I had AC every two weeks, 4 rounds. Then I had twelve weekly taxol infusions. Taxol thins hair, so my hair started coming back during it. I lost my hair by my second infusion. I shaved it when it really started coming out a lot, but I don't think I actually would have lost all of it. Taxol can cause bone pain. I took L-Glutamine and vitamin B6 during taxol and had no bone pain. But I didn't have much discomfort when I had Neulasta shots either, so each of us is different.
I'm surprised that you are seeing your MO only every 6 months. I see both my breast surgeon and my MO every three months. They don't scans unless you have symptoms. I felt some concern about a recurrence in my brain in January- headaches and some other things. So my MO had me get a brain CT and it was fine. I have some discomfort with the monitoring, but you have to live life not worrying because it will eat you up. I think once you are getting chemo and get beyond it, you will be able to have less anxiety. Also ask your MO to give you a script for something for anxiety. It is COMPLETELY normal to have this anxiety and lots of people get some meds while going through chemo. I also had really bad insomnia during chemo so I took Ambien, so don't be afraid to ask for that because you need your sleep. I took it every night for months and got off it around November last year.
Lastly, don't be afraid to get a second opinion on the treatment plan. You have to be your own best advocate!
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dmp1960- sorry you found us!
As far as the chemo I am just on my 2nd of 4 infusion of AC then I have 12 T. Painful isn't really the right word. At least for me it's just odd. I don't feel good. I don't feel bad. I don't feel like myself. I nap a lot. I get dizzy feeling if I do too much. My hormones are crazy days 3-4 and I cry a lot for no reason. I swap between constipation and diarrhea from trying to treat the constipation.
You can join a monthly group that starts chemo when you do. Everyone has different reactions. So what I get may not happen to you. As far as hair.... I've cut mine short but prob shaving today or tomorrow. To be honest the hair part doesn't bother me at all. So I have trouble relating with the emotions concerning the loss. When I got diagnosed I cut it chin length and colored it crazy. This past Saturday I went super short over the ears but it's thinning like crazy. I'm ready to just get rid of it and wear cute cover ups.
Feel free to get a 2nd opinion!! I met with a multidisciplinary clinic at my hospital. It was great for all the doctors to review my case and determine the best course of action.
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Hello Geeper,
I just wanted to say thank you for your congratulations. I hope my long term survival will be an inspiration to you.
I do hope all will go well with your chemotherapy and that it will help you a lot.
Thinking of you and sending you my best wishes.
Sylvia xxxx
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Hello SA8PG,
It looks as though icing hands and feet seem to be a great help when going through chemotherapy to help with neuropathy. I did not know about this when I was diagnosed in 2005. The one long term effect I have from chemotherapy is peripheral neuropathy in the feet. My oncologist told me it was caused by docetaxel (Taxotere) and that there was no cure! Two podiatrists tested my feet and also diagnosed peripheral neuropathy. It is very useful to let new patients know about glutamine. It is good that you have no neuropathy in your feet.
Thank you for your kind words about me and Titan. It is so good to know we are helping others.
Best wishes.
Sylvia xxxx
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DMP,
Getting a second opinion is a good idea because you don't want to be wondering if you did the right thing once you do go forward with treatment, you want to feel good about your decision. Information is power. There are a number of chemo combinations that are used on TN, there really is no "one size fits all." I had carboplatin and taxol and found it to be tolerable, there were some down days with the "carbo flu" and a few nosebleeds but I was OK. Then I did FEC which is very similar to AC and did not have a response at all, in fact I developed skin mets (I have IBC so this isn't something that will likely happen to you) - just saying that what works for one won't necessarily work for another and side effects vary wildly by person. You can handle it though, you are relatively young and it should just be a bump in the road. Good luck to you, let us know what you decide (also a "starting chemo in_____" group might be very helpful, I know it was for me).
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My heart goes out to all of you ladies just diagnosed or going through treatment but there is light at the end of the tunnel.
With regards to Titan every time I see her she looks more and more wonderful and is living life to the full. She exercises regularly and we used to laugh so much when she did her 5km runs. She made everything look easy and was so much support on here and to me. I just love that girl.
Haus I was so sorry to hear about your wee dog with seizures. Hopefully the meds will help to overcome these. Your lovely girls hair is exactly he same colour as mine was and my granddaughters is. She also liked to colour it for a while but has now accepted her own colour after being called names at school, like ginger and carrots, by some boys. It's so gorgeous.
Sylvia it's always such a boost to the ladies when you come on here. You have such a positive attitude and always have a kind word for everyone.
To the ladies having chemo remember to drink, drink, and more drink, water that is, not wine although a little bit of that won't hurt you. The worst side effect I had was constipation which I have never had before but my onco changed my meds and that soon resolved. Water melon was my go to food because it was cool, not strong to taste and very light to eat when I wasn't feeling up to much. I had no sickness but I was given EMEND which was a god send. I just felt like I had bad flu on my bad days, which were about three to four days each cycle. The rest of the time I felt very well. Yep I had hair loss on the second infusion but believe it or not I think it looks good on ladies and it's not as if you have any control over it. Try to find delight in every single day. Laugh as often as you can and like they say, stop and smell the roses. If there is one thing cancer gives you its a marvellous sense of new vision where you can appreciate everything and everyone.
Ally thank you for always thinking of me, as I do you. Hopefully something will happen soon!!!
Thinking of you all.
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(((Cocker)))
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Love you too Meadow my friend. xx
We haven't heard from Shari, LUV, BanR, Jan for a while. Hope all is ok there.
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Cocker, I'm here, just recovering from the flu, a uti, and bronchitis all at once. I've been reading, just not responding. Think of you often and hope your broken heart is healing a bit each day. Jan
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Thank you Jan. I am healing a little bit. I got my Tessa's ashes back today so she is home again. Bitter sweet moment though. Little Chloe, our maltese terrier, doesn't know what to do with herself and Bitsy the cat is not interested in playing with her. I don't think I could bear to get another dog because I miss Tess too much.
Hope you recover soon from the dratted flu. We have that season coming up soon as the 1st March heralded the start of autumn. It is still hot during the day though. Don't they say everything comes in three's. Flu, UTI and bronchitis. You have had your lot now and won't get sick for some time. Plenty of honey and lemon hot drinks should help. Hope you feel better soon my mate. xxoxx
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Hello Cocker,
I was very sorry to read that your pet Tessa had died. I know from friends how much sorrow they go through when their pet animals died. I once had a neighbour with two Burmese cats and they both died of cancer very close to each other and my neighbour was completely distraught.
Thank you for your kind words. It is nice to know that I can try to do my bit to help. A diagnosis of breast cancer, or any other cancer, sends people into shock and it takes time to digest everything and get yourself ready for treatment. This forum is so useful because it shows newly diagnosed patients that they can get through the treatment and have a life after cancer.
I was really thrilled when Titan recently posted. It was so good to know that all is well and that she is now seven years out.
Sending you very best wishes.
Sylvia xxxx
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Thank you for reaching out Mamiya. It helps to hear the experience of others. I didn't know about the "I start chemo in" forum. I'll be sure to check it out. I wish you all the best in your clinical trial and wish for you a happy healthy cancer-free future. Many hugs.....
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Thank you for the info HausFrauMi. I hope your chemo is successful and that you can put this experience behind you soon! Many hugs...
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Hi jlstacey - the "C" is cytoxan. I am getting a second opinion in Philadelphia on the 15th so that I can make an informed decision. I just hope it doesn't confuse me even more! I hope that your next round of chemo works for you and that you are on your way to complete recovery. Many hugs...
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