Calling all TNs
Comments
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my rad onc did not recommend the pool due to chlorine drying out the skin. Ask your doc as I think their opinions differ
mags
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Navymom congrats
Stressmagnet I know that has to suck, and I hope if I ever go through it that way I can hang tight too. This is my second round and I am tired, I hope to only imagine what you been through....big hugs to you0 -
Kathryn I talked to the nurse at the surgeons office and she said similar things as to what others here have said. The Ki67 is not the whole story, and it could be just that part of the rumor, and mine was metastatic it was going to be higher. I will have to discuss it further with the oncologist.
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What is the main thing your docs have told you is key in winning this battle?
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http://www.cancer.org/cancer/breastcancer/detailedguide/breast-cancer-diagnosis
This will help understand alot of things0 -
Definitely no swimming in chlorinated pools during radiation. Was one of the items on the list that RO gave us.
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You can all shoot me if this has already been brought up. Here goes. Has anyone heard anything about Metformin for use in early stage TNBC treatment? I'm seeing that there have been alot of trials and it seems to be promising...but I don't think there are any trials open to new participants. What I'm thinking is that this is an established, cheap drug and maybe if it's warranted I can get Onc or PCP to prescribe "off label". Anyone have any thoughts?
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ALH I had been seeing interesting information about Metformin and cancer, so I asked my PCP what he thought. He easily wrote an RX for it, saying that the drug had a long established reputation and was safe to take off label. He said it has been believed for a long time that it reduces the chances for tumors to form. (I thought, now why hadn't he told me about this years ago!) Good luck. J
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ther used to be an enitre thread on the use of metformin. I asked my onc about it and took her a copy of the trials that were available and she prescribed it while on chemo. Look back maybe 2 yrs or less. I know we had a discussion on this thread too but it's been a while. It was only $4 at walmart for 30 day supply.
Maggie
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Navy..congrats on the 4 years out...way to go...old friend! (and you know I don't mean old as in age..)....and having your son home...good good stuff....enjoy!
My onc wouldn't let me take metformin...said it would mess me up...he is such a crank sometimes..
I am 4 years plus 3 mos. out and I still go to the onc every 6 months and bs every six months..plus mammo every year. the only test is a d3 test which I watch closely...I plan on going every 6 months until I die of this or something else...bc is too damn sneaky to not be checked out alot.
Dolce..I went to the ocean shortly after rads...covered up the area with a towel...did get in the pool a little and of course the hot tub..lol...mostly slept and ate all the time
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A question for all of you who have been living with bc for a number of years... How do you balance your fears with spending money? I was planning on a new car right before i was initially dx. needless to say, that was put on hold. I was just starting to revisit that idea when my recurrence happened. My car is 13 yrs old, and I thought "what's the point, i probably won't be around in a few years". Then this weekend i took my girls shopping and almost bought a $60 pair of Coach flipflops. My thoughts were why not? I deserve it! And so the pendulum swings from why bother to lets spend it all! So, let me ask you all this: What was the one thing that you spent your money on after diagnosis that you either loved or regretted?
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NavyMom and Kelli - Congrats on your milestones!!
I read all your answers regarding folic acid. What amount are you taking?
Also, is anyone taking melantonin? It sounds really beneficial to us!
How long did you all wait to color your hair (if you needed to color it). I'm at 14 months past final chemo now, and wondering if it's okay to color my hair. I found two good brands from the EWG Safe cosmetic sites that I would like to try. My wig is starting to drive me batty, it is a long hair style - similar to my original long hair. But I'm okay with short hair now, I feel like I need to get rid of the wig to make some more progress with moving forward.
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So we are talking about Metformin? I also wanted to take it, but my Onc said no. He is like Titan's Onc, lol. I'm surprised he approved me taking live raw probiotics of 90 billion cultures. Then, I had to get the Hep A shot 2 weeks ago due to those tainted berries from Costco. I also thought he would not approve it, but he was in China, so his nurse approved it for me.
He mentioned that Metformin can alter the bilirubin numbers. So I was frustrated with him, but tried to let it go. He and I have danced before on issues, so I'm sure he knows that I won't be letting it go completely yet. My Husband jokes with me, and on the way to the quarterly visits to the Onc, I sometimes say "make sure you pray hard for me", and he says "I'm praying hard for your doctor". LOL Humor helps. Now I'm wondering what trials did you all print to take to your Onc? I mean, he knows the drug is in trial, but were you able to find any results thus far about the trial? I can ask my PCP for it. He has helped manage my care and he even ordered me an x-ray when I felt concerned about a raised up area on my chest. Turns out after losing 22 pounds, your landscape looks different. So my PCP does listen to my concerns. I do know some PCPs will say they will prescribe it as long as the Onc approves it.
QUESTION:
For those of you who had your PCP prescribe Metformin, did you tell your Onc that you are taking it? And if so, what has been their reaction to you getting it from the PCP providers?
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slowloris, I bought a button making machine a few weeks after diagnosis. My husband and I have had a great time over the last 7 months desiging and making buttons to share at chemo, radiology, and at the BS office.
Inspired, I finished chemo the 2nd week of may and am having my stubble colored tomorrow. I'll let you know how it goes.
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Debra - I don't remember if I told my original MO about metformin that PCP ordered. I changed MO at about the same time so the drug was on my drug list when I saw the new MO. New MO never has commented about it. It's all very interesting, isn't it? We'll probably never know if it works or not! Good luck sorting this out. J
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Slowloris - I do the what's the point / why the hell not thing. I'm going to Chicago next month, treating myself to car service, but decided I don't need a new summer duvet.
I thing I'm more apt to spend on an experience, rather than material goods.
Navy - so glad you were able to raise a glass this 4th year!
Good thoughts to those of you in treatment.0 -
OBXK: How's that young man of yours? I remember it well, the day mine came home and said "I need to talk to you and Dad" His choice to join the Military scared the crap out of me. But we supported his decision and couldn't be prouder of his accomplishments. He has been "in" 4 1/2 years and has re-enlisted for another 4 years. He used to be a kid without a compass....not knowing what he wanted to do with his life. Now, he is a young man doing what he loves. How cool is that?!?!
Regarding the Metformin chat: I also read all about thestudies and decided that I wanted that medicine. I first tried to get a script from my MO. She said "NO" because the research was not yet completed. So, I went to my PCP with print outs of what I found on-line. He agreed immediatly to write the script. But I did have some labs first to make sure that liver and kidneys were in good shape. I also had Hgb A1c to check for diabetes. Lo and behold my level was elevated so I need the Metformin anyway On my next visit to MO I told her all about my Metformin and she was glad that I was on it.
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I just had to show my onc what phase of trial it was in...that was enough for her to see that it must be beneficial to make it to a phase 3 trial.
slowloris...the day I finished my rads I went to the mall and found a gorgeous coach purse ( gunmetal) and treated myself...I looked around over my shoulder and there was another gorgeous purse in purple--my fave color and I bought them both. One for each missing boob. They were on sale and at the time we were good financially as my insurance had kicked up for me. I say if you need a new car and can afford the new payment then go for it. I just bought one in October and I love it!! mY Car had over 200000 miles and was wearing out so it was time.
Maggie
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I just came across this new article (the paper is not yet published but data was presented at a conference) comparing AC chemo followed by weekly and bi-weekly Taxol: http://www.medpagetoday.com/HematologyOncology/BreastCancer/39636?xid=nl_mpt_DHE_2013-06-06&utm_content=&utm_medium=email&utm_campaign=DailyHeadlines&utm_source=WC&eun=g543073d0r&userid=543073&email=quietasanun@gmail.com&mu_id=5671803
That were the main conclusions:
- This study was published as an abstract and presented at a conference. These data and conclusions should be considered to be preliminary until published in a peer-reviewed journal.
- Breast cancer patients obtained the same disease control with less toxicity when they received weekly low-dose chemotherapy with paclitaxel instead of a higher dose given every 2 weeks.
- Note that the two regimens had similar rates of grade 3/4 toxicity, but the weekly regimen was associated with more hematologic toxicity, whereas the dose-dense regimen led to more allergy-related reactions, musculoskeletal pain, and neuropathy.
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slowloris I know exactly how you feel but mine is swinging in the other direction. When I go to buy anything I think what if I buy this and then I am not here in a couple of months. I spent this money on this or that and my hubby has no use for it. I know this is a crappy attitude but I can't get the whole "death" thing.
If I had lots of money and could buy something really expensive it would be an indoor swimming pool
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From my own experience and from what I read on there I think that MO just want you to mainly stick with the nasty chemo. I think you would have to have a foot in the grave literally before they would let you out of chemo or try other things.....
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SLOWLORIS: There is definitely something psychological that comes with buying somthing that involves a long-term committment, such as a car or house. We too are in the process of needing to ditch our 19 year old car (Ha - got you beat!). I know several things have come to mind, and for me, I think it's just the nature of the bc playing upon my fears. I think it's not that I don't think I will be here for the future, but rather the fact that I remain a little insecure from this whole bc experience. Insecure in general. For me, it's been a little rough moving back into the traditional way of thinking, the way I used to do in the past, regarding the future. I must and need to go back to living life the way I did before bc (emotionally/psychologically speaking), but once you get that call, that you have this bc out of nowhere, it leaves you a little rattled.
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MELANTONIN:
I took the minimal amount last night. 1.5 mg of Melantonin Spray. WOW! Slept great, it was like drinking a whole bottle of wine, without the headache, and cheaper. I have a little hangover this morning, so will try to find pills today that I can break in half and take a reduced portion tonight. Make sure to block out 8 hours if you take it.
GOWITHTHEFLOW: Can't wait to hear about your hair dye experience. The EWG website has products listed for hair color.
Have a nice day ladies - hi to everyone!
- Nutrition - Visit this site for nutrition info. Type in a food and find out how many fat grams, sugar, carbs and overall nutrition profile it has!
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Navymom and Kelli - those are both important ant milestones. Congrats and I'm raising a glass to you both.
Stress management - you are a true warrior. I'm only facing my second and I'm weary. Bless you.
Stupidboob - swimming was on the no list during radiation. That being said, unless my skin is so burned that it has open areas (did under my breast last time.). I have EVERY intention of playing joyfully in the waves this year (if it works out right rads won't be till after beach season). I don't know that chlorine is good for the skin and public hot tubs are a swirling mass of germs. You also asked about advice from doc. They told me exercise was essential. I wasted hours walking and relapsed anyway. Not wasting anymore time walking.
ALHusband - I was offered the Metformin trial by my onc. I went to my PCP, explained the study and told him the only question was, am I going to get a 50% chance or will you give me a 100% chance. I got my prescription! If you get a prescription don't fill it through your insurance (it's an off liable use). A 3 month supply is $10.00 at Walmart.
Slowloris - I didn't spend anything after my original DX, but with relapse I am changing my mindset. I sat with my onc last week and made them give me some honest survival expectations (I will not be sharing what they said. All our cases are different. I have a Mom that I have to make sure is cared for, so honesty was important to me. ). I am doing two things. I am spending money on things that reduce stress in my life OR will bring me joy (for me that is mostly experiences). I'm buying a new car once I get other more immediate things settled. The second thing I'm doing is paring down both my things and my Mom's things. I come from a family of hoarders (not pathway theough house hoarders, rather "you can't throw that away we may have a use for it someday" hoarders). I am still working on my Aunt's house, but I finally have it empty. I AM NOT leaving a mess like that for my cousin (who is to me, my sister). The new expression around here is going....going...gone!!!!!!
I am doing everything that needs and can be done.......to make this as easy as possible for those I leave behind. I'm sorry that this is a "negative mind frame" post, but is an honest answer to the question that was asked. I will now go back to the "as long as you can breath...there's hope" mindset in my posts0 -
I think I saw our sweet Dawn today at the doc office! Hi Dawn!!!! Waving wildly. Must have been with your sis, you were busy talking and laughing and then they wisked you away! I didn't want to jump from behind and scare you! As I was checking in the receptionist giggled and said, "wow, I just love them, they are great!". Our sentiments exactly!
Hope everyone is doing great, or at least hanging in there!
Kathrynn-I can't imagine what your doc said to you, well, maybe I can. I had nodes deep in my chest that were inoperable and they responded very well to chemo. I know we are all different, but there are lots of chemos. Did any of your opinions mention abraxane? I have somehow missed the posts that you shared what your options are. I do remember one was no chemo.
Stupidbood-I hope your heart is doing better!
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Good news! I awoke without a pink eye.
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obx...heading to hhi this summer with the family...will wave at you on the way..first time back to hilton head since 2008..one year before diagnosis...can I say I will be weeping most of the time..I still look at pics from 2008 and at that STUPID BOOB..that was probably cancerous at the time but I didn't know it...ahh..the innocence before reality...
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Debra - I've been on metformin for 10 years and my metabolic panel is perfectly fine - no bilirubin problems. Thousands of breast cancer patients are taking it - 850 mg twice a day. There is a long multi-year discussion here on this subject.
Kathy - I missed your discussion about your nodes. Could you PM me with the details? I'd say call me but we are on our way to Kansas City. Thinking about you!
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My hairdresser would not color my stubble. He said although the sides are thick, it's downy and would not take the color. And it could damage what hair I have. We set up an appointment for 4 weeks from now.
although I'm a bit disappointed, it's not that bad. I'd rather have white stubble than no stubble. He did say I could use some shampoo in color that washes right out. Except it's not waterproof and my head gets sweaty so that's out. Don't need haircolor streaks down the back of my shirts.
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Hey ladies...I was just wondering if anyone had to stop chemo and go to surgery.
My MO and BS decided that after my third weekly Taxol they are going to stop and send me to surgery for a partial masectomy. I have a cancerous breast cyst and it keeps filling with fluid. They said even if the Taxol is working and they stronly suspect that it is, fluid would just keep accumulating and it has no where to go. This cyst was aspirated in the past and it refilled to its original size in a few hours. The fluid from the cyst was negative for cancer. The cyst was removed by "lumpectomy" and the pathoology found that the small solid component of the cyst was TN cancer. It came back just before I started chemo.
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