Calling all TNs
Comments
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Titan: I just did a lot of research and a friend of mine, also a BC survivor and a Uni had told me that she had her first clear mamo taking Iodoral right around the time of my diagnosis. I take it with my dr's blessing and he thinks it's good for women with dense breasts.
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bak94...ha ha..I'm a slogger too! I say I run but it really is a jog...I just take it as a good thing that it is something that I couldn't do before BC..and now I can..
OBX..I'm sure you could run if you had too...
Have never met a breast cancer survivor/patient (just what should we be called anyway?)..that isn't strong willed...I think we could do about anything we set out to do...
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Hi Ladies,
I have been keeping up with all your news via my Iphone, but it isn't very conducive to posting.
Welcome to all the new members. Sorry you had to join us, but the ladies on here have a wealth of wonderful advice.
Ksmatthews, thanks for giving me something to smile about, and thanks Titan for the inspiration.
Last Taxol this week, then on to A/C. Only problem so far is possible ulcers, other than that doing surprisingly well.
Wishing joy for you all!
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Hi to everyone. We did our Boobs n Balls cancer run to raise funds for our Solace care unit. Donegal to Waterford over three days on the motorbikes. Feel like i've been kicked by a mule but it was worth it. Last chemo next week. Hugs to all
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Hi Titan
Thanks for inspiring me to run again. It is amazing how someone says something sometimes and it totally hits home. Running is my old love and I know from experience that at first it is really very very hard, but after some time of continuous practice, it gets better and better. Unfortuantely, my body is the type which adapts to everything and then quickly remains in a "status quo" position, doesn't lose any weight, doesn't gain any........But running is the quickest way to lose weight in my case, for my body. Walking doesn't make any difference at all, no matter how many miles I walk daily. I need vigorous exercise. I need to lose about 25 lbs. Thanks again Titan for the inspiration. I plan to start eating calculated meal plans and run this week.
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Thank you everyone for the well wishes! I had finally got to a point where I am more relaxed about what I eat and drink and then I watched a horrifying documentary called "The Future of Food" regarding GMO's (genetically modified foods) and after seeing how they go about making these so called "super foods" there is no doubt in my mind that this is why we have a cancer epidemic. Monsanto is trying to prevent people from knowing what foods have been genetically modified and people need to know that we are an experiment that I think has gone horribly wrong.
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MBJ - it is scary, and I agree. I was slowly turning my family's diet around when I was diagnosed. It is hard to escape the GMO stuff, as well as the pesticides and chemicals. We are lucky to live in a very farm-intensive area - I now belong to a CSA which provides all organic veggies and fruits throughout the summer. But even that doesn't guarantee non-GMO stuff... I do grow my own, though this year we'd be living on tomatos if I had to rely on that! But during the winter months, it is hard to escape it.
kathrynn- yay to the next phase! AC is tough, but you are tougher!!
BernieEllen - that is wonderful that you did that. It must have been fun, exhausting, and very satisfying.
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Off week this week, yay! I have no idea if the Xeloda is doing a dang thing - I try not to check my neck too much to see if the nodes are coming back, as I know it inflames them. And in the end, what does it really accomplish? But I get pretty paranoid sometimes, sigh. Still, no obvious changes that I can feel, which is good. Two months until my PET...hope I can hold out that long.
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Hello Ladies, It has been awhile since I posted. Had double mastectomy on the July 26th. Still have my drains in, ugh, but hope to get them out soon. I find out today when my second go at chemo starts. I assume I will start next week. Surgery sucks (especially since it is my second time in 12 months) but the fact I can't do anything bothers me more. I suspect my inability to sit still has something to do with the fact I still have my drains in. My first chemo was dose dense A/C followed by taxol. The next cocktails are below. Has anyone on the board had the following? How did you handle it?
so this next round of chemo goes something like this:
3 months of Gemzar and Cisplatin:
3 weeks on
one week off
first night hospital stay because Cisplatin kills kidneys and I have to be properly hydrated as well as it makes you particularly susceptible to infection. And of course whatever other nasty side effects happen to come along. (the elusive list)
scan - yeah!
3 months of Navelbine and Methotrexate and Xeloda
3 weeks on
one week off
side effects are better with these, but not sure if I will even notice after the first 3 month cycle.
scan - yeah!
I just looked up the side effects and common usage of the drugs. Mistake! Looks like I'm in for a ride with the side effects, although I will put up a good damn fight to stay as normal feeling as possible. Also, some of these drugs are used for advanced stage IV cancer. What happens if I get to stage IV? What will they use then?Any insight into what I'm headed for would be great. Hope you all have a wonderful day!
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Inmate- are you in a trial? That's a lot of different cocktails! Just curious why?
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Okay - show of hands please. How many of you have been given a copy of your MRI on a CD, as you left the imaging center, and come home, put it in the computer, to "look" for cancer? I think cancer, has made me crazy! My children are rolling their eyes.
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Inmate, gosh that is a heavy treatment program. If you don't mind informing us, I'm interested in learning why you had the AC + T, and are now following it with these other treatments. All of us on these boards, I think, are alert to learn about new treatments, and want to know if there is something we should be doing that we are not. Good luck with it all.0
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tnbcruth and mity: If I'm remembering correctly, Inmate is dealing with a local recurrence within a year of her first Dx, so that may be why her onc has her on a new regimen. Maybe they'll assess response before moving on to the next?0
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Wow..Inmate,,,you are being treated very aggressively...looks like they are trying very hard to keep you from Stage 4! So...you can't sit still either??? Glad to find one of my kind...Did they tell you that you would sleep during Taxol? Me too...Instead they had to pry me off the wall...it would be funny if it didn't suck..
Lovelyface..you go girl! Run!
At this 5k on Saturday (my company is sponsoring it)..they hand out t-shirts..some of us ladies want to wear our t-shirts to run..so we decided that maybe we should wear just our bras and shorts and just put our t-shirts on when they give them to us..I really think I could do this...maybe you will see us on the nightly news...
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OBXK,
I have not had an MRI, but I will admit to coming home and putting the PET Scan CD in to look at it, and the Nuc Technologist who did my bone scan knew that I was also a Nuc Tech and let me see my Bone scan. I knew the bone scan; ;was clear when seeing it, but PET is just enough advanced above what I do everyday that I pretty much scared myself until another friend who does CT and PET looked over it with me.
I guess I do know enough to be dangerous, or to at least scare the s#i7 out of myself. I may push for an MRI after January 2012, that is sounding like when I will be having my recon surgery and getting these d@mmed TEs out.
I have ended up with a rotator cuff problem, (being told it is not due to rads or any thing else from BC), and now having physical therapy starting in the morning before work, at least it is at the same facility that I work at. I can drop off my work bag, go to PT and then punch in without hauling my @ss all over town.
Becca
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tnbc ruth I am not in a trial but did ask about one today. I guess that will come next time.....
mity My first diagnosis was last year (april 23rd 2010) TNBC IDC 4cm BRCA and then I was re-diagnosed July 1st with the same type TNBC grade 3 stage IIB. I had a lumpectomy followed by 5 months of chemo (2 months AC then 3 months of Taxol). Then I had 7 weeks of radiation, including 5 boosts. Just when I was ready for my first "hooray" scan I felt something wasn't right with "lefty". I went to my doc and we did the scan a few weeks early. The scan showed 12 new tumors scattered throughout "lefty". He said that it was as if someone shook a salt shaker over lefty. Great! The margins were good with the lumpectomy and there was no reason we should have been concerned that the aggressive AC and Taxol didn't get it. Thank God for scans! The new drugs are the ones that my onc feels will kick the s**t out of the remaining floaters I may have left. No promises, just hope. Super scared, but ready to fight!
Luah Thanks for remembering. That is why I find this board so comforting......:)
Titan I am the poster child for ADHD. You cannot make me sit still. Taxol didn't do it for me as much as AC. I was weeding my yard at 4:30 in the morning on the second treatment. Now I know what true mania feels like. My family joked that my neighbors must be thrilled with their midnight yardwork. Oh, and run with the girls out and proud! You can do it! Can't wait to see you on the news. Wear a bra that we can identify.....hehehe
Becca Sorry to hear about the rotator cuff problem. Man that one hurts. Good that you can keep to a normal schedule. Slow and sure, slow and sure.
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Becca - OUCH! I hope the PT, has you feeling better soon. How wonderful that it's on-site at your job!
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inmate - I agree that your doc is being really aggressive! Not that I'm knocking that, as mine is also. I'm currently doing Xeloda with Avastin in the hopes it will prevent mets - I had a lot of disease left at surgery, but have had clean scans since. What I can tell you about Xeloda alone is that it is pretty darn mild in comparison to AC/T. I do have some SEs - headaches, fatigue, and joint pain - but it doesn't really stop me from doing my daily activities. I am pretty sure Methotrexate is also fairly mild. Navelbine, on the other hand - no clue. All three together would probably be pretty tough.
The Gemzar/Cisplatin seems to be a more "traditional" combo for TN recurrence. Cisplatin has been shown to be pretty effective with TN, although I think the studies have been done with Taxol/Cisplatin.
Is there any way your doctor can have the tumors tested for chemo sensitivity? It is still pretty new, but it can give him an idea as to which combo would work better. Worth a shot to ask!
Becca - youch! Hope you feel better soon! I used to look at my scans all.the.time. I've stopped now, because I've gotten to the point where I've accepted that me freaking out for a day isn't helpful, lol. So I don't even ask for copies until after I've talked to my MO, that way I'm not tempted.
Titan - I went to the YMCA today and signed up, thinking of you. I'm going to start swimming next week, and when I can, utilize their running track. One step/stroke at a time. You are very inspirational
.Have a great day everyone!
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Hi girls, just wanted to check in havent been around much lately sorry about that. Kind of letting myself go back to normal life I suppose even though I am still in radiation. I have had 11 of 33 so 1/3 there yeah. Gettting a bit tired from it but overall pretty darn easy after chemo.
I too am going to join the YMCA I only have to pay 5 dollars a month cause I am a cancer survivour yeah so I have no excuse not to get back into shape. Time to drop this chemo weight I want to be in a totally different place next summer.
Hope you are all well
Hugs Kymn
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Inmate. you go..this will be tough but you are tougher!
Ttian you have us all moving.
Becca...hopefully PT will do the trick.
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You guys are great!....I'm so stressed right now with the wedding coming up and moving my son back to school....finding time to exercise is hard for me but I'm going to keep it up.
I'm running 3 miles tomorrow night..I don't care who is hungry, how much laundry needs to be done.
Breast Cancer or not...finding time just for YOU is not easy.
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inmate- Holy Crap. Your regime gives new meaning to that old phrase "what doesn't kill you makes you stronger". Damn, we will have to start calling you Hercules!
I had a friend who got "nuked" with chemo also... 6 years later she is cancer-free!
Headed out for another five days of carriage driving Thursday. Still don't have my laptop back, so my neck fights me when on this PC. Chiro said he could get ROM back in it (I'm seeing one for my back at the moment) but, frankly, someone manipulating my zero flexible neck scares me a bit. OK, it scares me a lot...
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Titan... yes, make time for yourself! If you don't, who will?
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Went for second opinion re more chemo due to residual tumor left after chemotherapy - came back feeling really down. When my surgery was done, they found 5-10% ER receptors in the remaining tumor site and my onc put me on Arimidex. He believes this will reduce recurrence risk by 50%, bringing me up to 25% risk of recurrence from 50%. The other onc doesn't believe it will make much difference at all; that I am still at 50% chance and my cancer, while maybe not clinically defined as triple negative due to the 5-10% ER - will behave like a triple negative-There is a clinical trial with CMF chemo and Avastin but no guarantee I'll get in the treatment arm and the oncologist won't do addn chemo outside of a trial setting. Looking for 3rd opinion - actually really trying to find oncologist who WOULD give more chemo outside of a trial setting. There is an Italian trial that used CMF following unsuccessful/partially successful neoadjuvant chemo - if anyone has the link, please send it my way. If I could find some support for it, I will take it to my oncologist.
Becca, I hope you find a quick solution to your shoulder pain - that is so limiting and painful I've heard.
Inmate, hang in there - I'm glad they are being so aggressive but I know it must be tough, particularly after all the treatment you have already been through.
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Christina: I know it's a worry... sometimes having the knowledge of residual disease that comes from neo-adjuvent chemo is a double edged sword. Most of us here had surgery first, and have absolutely no idea how well chemo "worked" or didn't. In fact, there are probably vast numbers of women walking around 5, 10 or 20 years following a BC diagnosis where the surgery excised the cancer and the chemo, if it provided additional benefit, looked after floating tumour cells.
I think you're wise to go for a few opinions though, to give you some peace of mind going forward.
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Totally off topic, but I'm sitiing here crying like crazy. My kids started school today. My son 4th grade and my baby girl kindergarten. I am sad to not have my baby girl home with me, but very thankful to be alive to see them go off to school. Not sure if I'm crying because I'm thankful or sad!!
Have a wonderful day ladies!
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Hi TifJ
Not only are we Dx buddies, but our kids are the same age too. My son goes to the 4th and baby girl goes to kindergarten.
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christina - I sent you a PM with another possible clinical trial, it is one arm only so you'd definitely get the drugs. Hope it is helpful!
Tif - congrats on the kindergarten!! I'm dreading that with my baby girl next year, but will be like you - happy to just be here to see it
.Heidi - my neck is stiff and sore as well. I am down to a slim pillow at night, and can't read for any length of time. I pretty much have to sit and stare straight ahead, ugh. I already had an MRI, so I know it is just "getting older" - I'm sure you are in the same boat, chemo just speeds this age crap up.
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TifJ- My little boy is starting kindergarden in 2 weeks too so I know how you are feeling. I am happy for him. I am happy to be here to see it but sad because I just love having him around all day and will miss that for sure. So I know, in 2 weeks, I will be the one crying............0
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That is such a precious age and time!
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Found an article dated Aug 1, 2011 (on this site) on the Homepage about a study regarding Dense Breast Tissue and Aggressive Cancers. The article states:
"A large study suggests that women with dense breasts are more likely to be diagnosed with breast cancer and the breast cancer is likely to be more aggressive. The results were published online in July 2011 in the Journal of the National Cancer Institute."
The article also talks about knowing your breast density...found it to be interesting as I had dense tissue (proir to mastecomy) and remember reading alot of other TNBC women have/had dense tissue.
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