Calling all TNs
Comments
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1surviving TNBC- great avatar!
Headed out for another ride tomorrow.
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thanks so much!! I though it was a hoot also!
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Suze35: About the port removal-my onc said we would leave it in until we got my path report back after surgery. After looking at report and she decided I would need no more chemo, I had it removed the next day. Having it taken out is easier than getting it in.
Michelle67: I am sorry you have to worry about this finding on your MRI. I just spoke with a friend tonight who is triple negative and had to have a brain MRI. It did show some type of lesion, but turned out to be harmless. If your onc is 99 percent sure it isn't breast cancer, and with you being Stage 1, I would hope yours would turn out to be harmless, also. One doctor told me that MRI's pick up a lot of stuff that is not important, and that has happened to me several times. As triple negatives, I think our mind always goes to the worst, hope you get peace of mind soon! (((Hugs)))
MBJ: I am thinking of you and hope you are feeling better. I sent you a PM.
Hanami: Thank you for sharing your story.
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Michelle ((((((((hugs))))))))) I hate waiting.
Great pics Heidi
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Ladies, Ive been really shaky this week, its week #6 of Taxol, is this normal? Tx on Tueday and then by friday i had to leave work early and Sat. was the same..Ive slept most of the weekend away, Friday came home at 1 and slept until the next morning, and then last night when to bed at 10 and just woke up, but still have that shaky feeling...
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I had the same moe. The tiredness was tremendous. I would have a shower and be too tired to dry myself. I was able to just go with it and sleep as much as I needed, it does get better, but 4 and a bit months out I still get tired easily, but it's waaaaaaay better.
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Thanks kelben...that reassuring my side effects have been so mild that this freaked me out this week... I think this was what I was expecting at the beginning, so I guess I sort got spoiled....
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I know,... just when you think you have this figured out, something new happens. Geeeez
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I started radiation approx. 5 weeks after my last chemo treatment. My onc said they always wait this amount of time. Im having rad 5 days per week for 8 weeks. For those who asked when I started Chemo: I had my operation in june and started approx 7 weeks later my chemo treatments.
I still have numbness in my hands and feet..sometimes my legs hurt really bad even my arms at night get really numb and it wakes me up cause it hurts so badly. My last 3 fingers in each hand have brown stripes going across the nailbed and the long nails i had during the chemo are now so short..they got so brittle that they all broke off. My toenails ( big toes mainly ) are also brown and very thick... I look horrible. Sometimes ya look in the mirror and think" who the heck is that woman looking back at me" i dont even recognize myself anymore. But I know that come summer I'll look like the old monica again with exceptions of some scaring. 5 more weeks of rads and then im done with the therapy part of theis horrible monster desease.... then they will send me to a re-had center for approx 3 weeks.
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Hi Suze35. When you mentioned the DIEP procedure, I looked it up and am really thrilled to learn that there is something like this out there. I had seen two PS and none of them had mentioned that there was something like this, although I had asked them. How will you find a really good surgeon to do this. They say there are only a handful doing this procedure at this time. I am running out of time. It has already been 4 weeks since my last chemo and I need to start RADS soon.
I have another huge problem which I had not mentioned before. Due to my surgeon's negligence I had developed an infection after surgery. After they cleaned the infection, there was a big hole in my breast. The two folded skins came together and formed a keloid, deforming my breast. However, the keloid/scar was becoming lighter and the breast was becoming okay, not so bad at all. But after my most recent MRI, my God, the scar became a blister. It pains. I showed to the Radiologist, she said it was okay to do rads. But I don't think so. I don't think I could ever have an MRI on this breast. I am facing a major problem. The blister is about an inch long, filled with water like substance and it is hurting a little bit. I think the MRI heat burned it.
I think I have to quickly make up my mind, that I have to get bilat. mastectomy (why leave the other one since it has the hyperplasia), and reconstruct right away. But how do I find a really good DIEP surgeon, and figure out if my insurance will pay for it. What do I do? I don't think there is a DIEP surgeon in my medical group.
Suze - how are you planning to find a surgeon. I understand that they have to be really very good, in order not to remove any musles but just fat and tissue from the ab to make small breasts for you. Is that why you said, you will have a large A or small B. I am currently a C, however, I really don't care about the size, as long as I have some breasts. If you or anyone out there have any information, please do tell. Thanks.
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monisch- you get to go to a re-hab center? what do you do there? I'm on my own personal 're-hab' at home which consists of a lot of tv, a few walks and reading.
I'm still in a fog of fatigue and ptsd, as well as emotionally spent. I WANT TO FEEL BETTER !!!!!
There is no one here to help change the dirty sheets! No one to pick up things from the grocery! No one to make that 20th trip upstairs for something I forgot! I am a burden to myself - grrrrrrrrr. Must go find the bitch and moan thread~
At least the weather is good )=>
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Lovelyface - I'm sorry to hear about your reaction to the MRI, on top of everything, that just flat out sucks!
My breast surgeon recommended a plastic surgeon for me, and he specializes in breast reconstruction. They are both at Massachusetts General.
My BS actually specializes in BC and node removal, she helped pioneer the SNB procedure. Where are you located? If you are close to a major hospital or Cancer Center, I am sure they can give you some guidance. DIEP is fairly new and complicated (it takes 8+ hours according to my BS) but it is becoming more common. My BS estimated my outcome based on looking at my tummy - I carry my weight in my behind lol. I am meeting with the PS on 2/17, and I'll ask him about how to
find a good surgeon for you!<
I want to add that I plan on delaying my reconstruction for at least a few months if possible. I think you can do anytime. I'll be asking about that also, and will let you know.
I know insurance has to cover reconstruction, and mine covers this procedure thankfully, but I would call and double check if your unsure.
I'll definitely keep you posted!0 -
Suze35 - I googled and found a few in my area, near San Francisco. The PS seems to have a lot on her CV and has published lots of articles on DIEP. I will call her office tomorrow. I would be a little scared about the 8+ hours surgery, and I assume that is for bilat. mx, and the fact that it is complicated. However, if done well, the outcome would be the best ever. Not having any foreign material in your body, and having them as natural as they can come, your own tissues. Not ever having any MRI's or Mammos, sounds like a dream. I will also call my Breast Surgeon and see how it can be coordinated between her and the PS. I understand she takes out all the bad current tissues out, and then the PS takes over. Thanks so much for information on this new procedure.
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Lovelyface, Yes you WILL go back to New Zealand. You will see your Mother again. Really. The odds are in your favor.0
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Moe - I did taxotere (CT x4), not taxol, but had a similar experience. It really was my only SE. Like clockwork, on Friday evenings after a tues infusion I started getting very tired with mild muscle aches. I slept constantly through sunday around noon, at which point the tiredness and aches were replaced by gradually diminishing muscle fatigue for about 2 days. I am sure what you are feeling is normal.
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Michelle67 - keeping good thoughts and prayers for you! I'm so glad you're BRCA negative!
tnbcRuth - I am also feeling like yuck! I thought after chemo and rads I would start to feel better, but I feel worse! Ugh!!!
I am the poster child for having a bmx and getting bc again in the same breast. And.. I had DCIS with widely negative margins. I would still get the bmx if I were to do it over again. I am one of those freak cases, but you can get bc after having a bmx, so please keep checking your breasts girls (I found my 2nd set of tumors with an accidental self exam - moving my foob to shave my armpit). SCARY!!!
I still have aches and pains in my legs, mostly the right side and knee. I still have numbness in my toes. I need to re-paint my nails. I was lucky to not lose any during chemo, but they looked awful. I had to keep nail polish on them because they hurt like he!! too!
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Tnbcruth: yes I get to go to Re-Hab. I live in Germany and its almost a must that Cancer patients go to re-hab directly after their Therapies are finished. They approved 3 weeks , could be more depending on what the Doctors there decide. They do phycohological work with you one on one or in a group, you have different types of excercise to tryout... such as yoga, qi-gong,pilates, swimming etc...... you get a physical exam, Nutritional information including cooking class.
Room and board is paid for by the health insurance. Im kinda excited about going..... glad to get out of the house and away from the office. My husband and I tend to argue alot.. and that gets me down.
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kittycat, I think I am facing that now. Pulled some cancer cells out of fluid seroma on my mx scar. I just finished chemo 4 TC in Sep/10. Biopsy on thurs. then who knows where I go from there. Just a little scary.
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Lovelyface - I'm glad you are able to pursue this. For me, I am uncomfortable with the idea of implants, and always have been. My sister had an augmentation a few years ago, and looks and feels great, so it is definitely one of those personal decisions. But the all-natural aspect really appealed to me.
Kelben - still thinking of you, and keeping my fingers crossed that this is at worst a local recurrence.
Kitty cat - thank you for that reminder. It is important for me to remember to be vigilant.
Lynn - thank you for that info! I hate the thought of being awake/aware when my port is removed, as they had to thread the catheter up my neck, but I may suck it up and take it out after my pathology comes back. My onc said she was 99.9% sure I would not need more chemo, so I'll wait until that is for sure before I decide.
In the chemo chair today. 10 out of 12, yay! The heartburn is getting worse though, ugh. I'm really hoping I'm not getting an ulcer. I'll be seeing a GI soon to figure it out.
Have a great day ladies! I'll be MIA for a day or two.0 -
Lovingmother: Sorry for jumping in late on this - have been off the boards for a few days. FEC-D is a very common and effective 3rd generation chemo treatment used widely in Canada and Europe (considered equivalent to AC-T in the U.S.). It is usually given in 6 treatments, 3 weeks apart: 3 of FEC (a combination of 3 drugs), followed by 3 of taxotere. Try posting on the chemo board for more information... or post a question on the Canadian Breast Cancer Survivors board, many ladies there have gone through it.0
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kittcat - I was told to take prilocec (once daily pill/OTC) for the entire time I was doing chemo. I think it helped.
Colleen
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You know what scares me the most about TNBC is that I don't see a lot of AA women who are thriving after treatment. Meaning they don't come here and post, and being AA it scares me.
Is anyone else on TNBC.org? When I was first dx I would visit both here and there, but I must say I like here better info seems to flow quicker.
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Fighter_34: Please bear in mind that most women, AA or other, who are thriving after treatment aren't visiting these boards on a regular basis. They go on with their lives.
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AA? As in African American? Go to that forum; there's a TNBC thread there. Check it out.
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yes - I had heartburn during chemo and took prilosec. Worked great.
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Fighter: I don't think there's a whole lot of difference, if any, statistically between prognosis of different races. Please try not to let this frighten you. Also noticed Heidi's comment above, so I hope you're able to find that thread. When I was first diagnosed, everything I read said that triple negative seems to hit AA moreso, but from what I've seen, that statement is entirely incorrect. I think a more decisive factor would be the person's age, because of the genetic predispostion possibility. Even lymph node involvement seems not to really matter with TNBC, while certainly if it's found very early it's supposed to be a very good prognosis, it's really a roll of the dice. And everything changes quickly... one day this is good and something else is bad... the next it's the opposite. So try not to feel like the color of your skin affects outcome, because I really don't think it does.0
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Hi ladies hope you are all going well,when I come here it makes me sad and soooooo mad about what you all have to put up with and it is not normal ....to many woman diagnosed....there is something wrong in this world you believe it......the Drug Companies love it as their bank accounts get bigger, and still no cure....crap.
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Friends:
So nice to hear from you - how have you been holding up. I think of you often and pray that you are surrounded by loving family,friends and getting comfort from the bond you shared with your daughter. That you will never lose, nor can anything ever take it away from you. Please post and let us know how YOU are.
Love,
Linda
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Hi all of you wonderful women. I go for the 2nd to last chemo tomorrow. I felt so good today like I can really beat this. I meet with my onc. tomorrow too. That is, if we don't get this terrible ice storm predicted. I hope to ask her for a pet scan to see if this chemo cocktail is working. Funny I was given a year at best when the AC and Taxol didn't work for me but I hope that means that the carbo/gemzar is what I was meant to have in the first place. I have chosen to believe that this WILL work for me. I have been afraid to post because the AC/Taxol has worked for so many of you that I didn't want to bring fear to those starting it. But I really miss all of you and know that works for most of us. As Titan put it there are a lot of lurkers out there. Has anyone else out there done the AC and Taxol and found that their cancer did not respond. Well, I should make it clear that the Taxol I believe started to work the first 3 weeks. I felt my tumor decreasing but then it started growing fast. So I had surgery and they realized it had spread to 14 out of 20 lymphnodes at surgery. My onc told me that the chemo cocktail I'm on now works in a different way so I believe it is going to work. Again are there any lurkers out there that are going thru this?
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TNBC ladies - would you take an aromase inhibitor like aridimex with zometa (via infusion) if you were a very small 5% progesterone positive, which is what I am? With the bad SE's from Aridimex and Zometa (which is given for BC metastasis) would you consider taking it, if your Onc. wants to give it to you?
I am so confused. All the clininal trials are saying these two combinations may not help with disease free survival. I read somewhere that one should consider anti-hormone therapy even with a small percentage of positive hormone.
I have always felt (my very own observation) is that I am really low on estrogen and my cancer has come about due to that. This drug as well as Tamoxifen is supposed to decrease estrogen in your body. I could try the Aridimex and leave it if I felt very bad SE's, but I am so scared of Zometa which is given by infusion, only twice a year, every 6 months. Once something is infused in your body, it can't come out, it remains there which is so scary.
Anyone out there has any higher wisdom on this subject, please share with me, as my brain has stopped functioning. Can someone please make my decision for me, pleeeease? I don't know what to do. I feel so strong and healthy after my chemo, am exercising every day and am developing some muscles. Eating right and feeling great.
Thanks.
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