Calling all TNs
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So saddened to hear of you all going through this again... WTF ? In your pockets and big hugs to you - I cant imagine.
Someone on another thread that the bastards who did the bombings at Boston should be made to have chemo for the next six months - daily. I said then fry the bastards.
Hugs and love to you all xxx
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inspired-I had stage 2b triple neg in 2003 (Well, end of 2002). I had a lumpectomy, right side, ac followed by taxol and then radiation. April of 2011 I was diagnosed again but on the left side, triple neg., well my er was 3% this time. So basically they said it was a new primary. I did genetic testing and I am BRCA 1 positive. I did neoadjuvent chemo this time, AC for a second time and then abraxane/avastin, bmx, and then raditation. And then hysterectomy October of 2012. it is taking me awhile to recover. I am 46 and on disability. Can't work, I get too tired and my arms and chest hurt from bmx. Hoping to build up strength so I can work again, but it is taking a long time. I do think it is because I had AC twice, but my heart function is actually good, so I really don't know why I am still so weak. All my doctors say it is because I am so deconditioned.
Kathy, Phyllis, and Stupidboob-It sucks that you have to go through this again. In a way it is a bit better to know what to expect, but at the same time it is more difficult the second time around. Recovery is a bit slower. It hit me hard emotionally and physically, and now I feel like I am in denial, blocking everything out of my mind that has happened. Probably not a good thing. I feel for all of you, but you can do this.Go ahead and cry, scream, or whatever you need to do. I don't mean to sound negative, but sometimes I think we are expected to sail through this crap with a smile on our face, but dang it, sometimes we just don't feel like it!
My prayers go out to those in Boston. Such a sensless thing. Why don't those who do these terrible things value life? Does it make them feel powerful when in reality they are cowards? How can someone hold so much anger in order to hurt such innocent people/children? I just don't understand life and what it is really about.
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Started Xeloda today. Wish me luck!
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OBXK - Good luck! I will be thinking about you with positive, happy and possibly goofy thoughts. You will kick it!
My Zelda gets delivered today snd I will join you on Monday.
Phyllis0 -
Phyllis - I'll dance naked in the woods for you! 40 minutes in, my hands were mottled red. Scared me a bit. Took photo and emailed it to my MO. I think it's okay, since I don't have pain.
It's just scary, not having a MD around, after swallowing a handful of chemo
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Karen - Yikes! You have to do it at home alone? I would be scared too. I'm glad there's no pain, but anything happening to your hands is scary!
I will have my first dose at the chemo shop when I get the Ixempra IV. At least I will have nurses around that I can yell for. (Hey, what the hell is this???!!")
Dancing naked in the woods sounds pretty good, except we're about to get 3 inches of snow tonight and tomorrow. I won't ask you to do it until the weather's better!
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I finished chemo on 4/2 and all through chemo i have had back pain - and reported said pain. I got the nulasta (sp) shot each round. My back still hurts...sometimes its right in the middle of my back other times it's lower and on my left side of pelvis. For the last 4 months through chemo by MO says it's the chemo and shot causing the pain. He also says it's bc I work 40 hours a week at a computer and chase my 2 wild children around. I had a bone scan, MRI and maybe a CT scan (can't remember) in November and those were clear.
I tell him that I am not saying it's cancer but I think we need to figure out what it is bc i spend most of my night after my kids go to bed laying on a heating pad. I was under the impression that we would make a plan at my appointment yesterday but instead he said he would see me May 14th - he wants some of the chemo and crap to purge from my system.
He is so anti scan and blood tests for monitoring. I think he thinks I want a scan...I just don't want to be in pain. I even said maybe I should see a spine/back specialist. Lordy!?!?!?! Of course I hope it's just stress, work, bad posture, etc.
Any advise to MAKE him understand if he tries to push me off again?
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Jen - can you get your PCP, to give you a referral to a neurologist? Or order a MRI for the area of your back that is giving you trouble?
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I've never had a PCP - I've always just gone to my OB annually and if I was sick to urgent care. Perhaps I need to find me a PCP.
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jenjen, are you using dry heat or wet heat on your back? I injured my lower back years ago and I've never been able to tolerate dry heat as it kind of settles the pain in instead of breaking it up. It's easy to make your heating pad do wet heat, just get a tea towel wet and put in next to the pad itself under the liner and there you go! It helps immeasurably, you just won't get it until you try it.
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teresa - I will for sure try that tonight and report back
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I want to thank everyone for the well wishes. Going this the second time around has alot of different emotional feelings with it.........:(. Looks like I will be just as sensitive to this regimine. Treatment Friday, feeling a little off Saturday. Starting hurting (bone but not like the Taxol) and mouth sores on Sunday. Constipation Monday and then last night and off and on today diarrhea and fever. I felt semi ok all day yesterday and then apprx. 7:30pm I started with the diarrhea and just felt like poodoo and then about 9ish started running a low grade fever. Was staying between 99.4 to 99.9 for about two hours. I called the doctor because I had chills and just over all did not feel well. I know we are to call after 100.5 but I felt horrible........no luck they said I could not take anything. Fever has started again tonight. Hope to be back on tomorrow.
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Stupidboob - I am so sorry you are feeling so badly. I hope tomorrow is a much better day.
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Oh Bak your post made me so teary on what you have been through and are going through. You have always seemed so strong to me in all that you cope with whereas I have always felt so weak up against you. I have always tried to use humour to hide my feelings but it doesn't always work and most days I am so very scared.Then I read what you have gone through and it makes realize how selfish I am when there are people like you in the world. I feel sure you will find your energy again and will be able to go back to work, just try not to rush things because everybody heals at a different pace and I know you will get there. I would love to give up my work as it makes me so depressed but I can't afford to just now so its a case of keep on trucking. Something good will come up for you I know it. Sending you and all the other brave ladies on here a great big warm hug.
Tazzy I almost didn't recognise you. Your hair is gorgeous. Good to see you posting on here again. I don't care for the facebook site much because everything comes up on my home page and I don't feel its very private but good to know you are doing and looking great.
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Jen-I had pain all through chemo too and I had many scans that nothing showed up. I still have lasting pain and think it was caused by the chemo but doctors say no. I don’t agree. I hope you get a scan to put your mind at ease.
Karen-That would be scary to take chemo without anybody there. I hope you are feeling ok.
Stupidboob-Your description brings back vivid memories! I am so sorry you are feeling crappy, I hope you find some relief.
Cocker-Now you made me cryJ You are NOT weak, and I certainly do not feel strong. I feel like I am about to have another meltdown! My hubby told me tonight that I am useless to him! Funny, but that is exactly how I feel, not only useless to him, but to him and for everyone.
I also found out today that I am pre diabetic, and I have been on metformin for cancer prevention, thought that is supposed to help with diabetes? One test that shows inflammation, forget what it is called, is elevated and I think that is bad for cancer. I tweaked my hip and now freaking out about that, I can barely walk right now. The rest of my blood tests were good. I will have tumor markers done next month when I see my MO. Oh, and both my primary doc and MO are leaving. I like them both and don’t want to find new docs!
The good news is my 2 mmj plants that I am growing legally are doing great! Can’t wait to make cookies and tea out of themJ It seems to be the only thing that helps me sleep and takes away the muscle/joint pain. I am going to buy a couple more plants this weekend! I guess I am allowed to grow up to 15 plants!
Again, so sorry to be so whiny! With all my crap and everything else that is going on in the world I am just feeling a bit down. I know I should be happy and thankful, but I am just not there today.
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Stupidboob that is a rollercoster of SE's. How often will you have treatments? Sending up more prayers for you.
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Ive debated on sharing this article but we have several ladies with recurrances right now so I'm going to. There is hopeful news about testing of a targeted therapy but some disturbing news about Taxol -- and I just finished 12 weeks of that. I'm taking the article with me to my MO visit today. It is specific to TN.
http://news.vanderbilt.edu/2013/03/breast-cancer-study-explores-therapy-to-slow-recurrence/0 -
5thSib...thanks for the info..it is indeed disturbing to say the least when we were led to believe this was the best chance for us. Please let us know what your MO had to say about it! I also had 12 weekly taxols.
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Sib, thank you! I will take it with me to my appt on Monday.
Phyllis0 -
I should also say I am basically TN regardless of my profile saying ER+...it is miniscule.
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I am triple negative and got dose dense AC and now dose dense taxol. This is disturbing to read. I just saw my MO on Monday and don't have another appointment until may 3rd which is halfway through my taxol treatment. I thought it would kill the beast.
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I don't post often, but have taken great comfort in the posts of everyone. Today is the 1st anniversary of my lumpectomy. I continue to see my MO e/3 mos. Finally had my port removed last week. Tumor markers remain in the normal range. That's the only thing she does for f/u. And even then, she cautioned that they are not very reliable. 3 weeks away from my 1st mammo. Anyone else having trouble deciding if the new 'feel' of your radiated breast is 'normal'. I still have a seroma, and what I would consider masses, not lumps. suspect it is lymphedema, since i notice it more at the end of the day. MO has examined it numerous times, and assures me its a 'normal' feel for surgical/radiation. Hard for me to feel comfortable with the changed breast.
Wish I could post pics of my hair (dont have an online photo storage). Finally had enough of the gray, and put a non-ammonia color. (same as I used pre-C). Still has a crazy texture, and looks like a birds' nest most of the time. have had one trim, maybe time for a second to give it some more shape. Last time I saw my 4yr old GS, he said, 'Gramma, your hair is getting too long, you need to get a haircut!' It may be all of 2" long! How quickly they adapt to a 'hairless' Gramma look as being normal. :-)
We are looking at changing roles at our house, me from being 'cared for' to taking care. DH looks like he's going to need rotater cuff surgery. He's weighing his options: missing out on prime camping season for the second year (last year was devoted mostly to chemo/surgery),or relying on pain killers. Or bite the bullet, and be incapacitated for several months. Am relating to how helpless he felt for the past year, and never complained.
{{hugs}}to all of you who are looking new DX and treatment. Hoping for alll of you, gentle and effective treatments. What a strong group of women we have become, and compassionate, sharing the sorrows, as well as the joys.
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Thank you so much! I am supposed to start paclitaxel in four weeks and I won't see my regular ro at my last appt. before I'm supposed to start it, so I just emailed her the article and asked her to read it and get back to me. I really appreciate your taking the time to post these articles. I can't sit at my computer for very long these days. I just start pouring sweat if I sit here too long (over 15 minutes!) so I can't seem to get any research done for these kinds of things.
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is paclitaxel taxol?
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Paclitaxel was the one discussed in the article and that's what I'm supposed to start in a few weeks. I don't know that taxol is the same one.
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paclitaxel is Taxol. I found my info sheet.
Phyllis0 -
I think that is why in some studies and protocals they are starting with taxol and then doing ac, to mop up any of those cells. I just have to say my first time around I did ac followed by taxol and did not have a recurrence, my recent cancer was definately a new primary. So even though it is disturbing, ac followed by taxol has been beneficial to many. But for those still in treatment it is a great thing to check out, could even better your odds! This last time I had Avastin with abraxane (basically taxol) I wonder if that helped with the stem cells. There is so much controversy surrounding Avastin, but my doctor really pushed for me to have it. I am hoping I did not have much cancer left after the ac, so maybe the abraxane didn't leave any of the cancer like stem cells. One can hope, right?
My hip is hurting so bad it is unbearable. It is scaring me, but more so I just want this pain gone. If it is not better Monday off to the doctor I will go. I have had problems in the past, so I am hoping it is just that. I walk on uneven ground and I think that is what messed it up, I stumbled a few times.
Luvbng-We went through the same thing! My hubby has had rotator cuff surgery twice! Once before my first diagnoses and once after my first diagnoses. Sorry you have to go through that! My husband was in alot of pain and had to take alot of pt to get his strength back. He is much better now years later.
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Hello to everyone. Like a lot of lady's I've been ready this blog since I was told that I am triple negative also.I will be starting chemo next week.But I have a question,Im doing the clinical trial NSABP B47.Has anyone else heard or are in this trail. I Guess I fall in the High-Risk Node-Negative Her2-Low -Invasive BC. It hads 10 more months of herceptin (1 a month).I have a health heart but I've read that it does a number on some peoples heart. But I will try any thing not to have this come back like it has to some . Wish I am so sorry about!
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Re the TN study on taxol, I went back to the original research. First, I don't think you can draw conclusions that taxol, per se, is detrimental as a systemic treatment by this study's finding that it may let slower-growing cancer stem cells by. You still have to kill the fast-growing ones, and there are many studies showing that taxol is very good at that. Second, while these researchers chose to focus on taxol, it could be that these findings apply to other chemo drugs too, we don't know. Third, there is reference to basal cell sub-type, and we know that not all TNs are that. In fact, a lot of researchers have found that TN has multiple sub-types. I guess my point is, that we should look on this is an incremental andpositive step in the exploration of TN... I hope it leads to clinical trials for TGF-b inhibitors alongside chemo treatments. I would be interested in hearing what your MOs say about it. Keep us posted.
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