Calling all TNs
Comments
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Suze- I think we all felt suspicious lumps during and after our treatment, mostly because we become so sensitized to our breasts. Plus, TN tumors can be painful, despite "conventional wisdom". Here's hoping you have an uneventful surgery and speedy recovery so you can make the CBF!
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Heidi - thanks, I know you are right. The waiting is the hardest part, and it is what it is, I can't change it. On a positive note, my nodes haven't changed a bit, except for more cording. So I will just be prepared for what news comes as best I can. I really want to make it to the CBF also!!
I plan to spend the day hanging out with the kids, then DH and I are going to dinner and a movie, so I will see you all on the other side of the surgical table!0 -
Suze: Sending you many good thoughts nad hopes for the best possible outcome. You have been given so much great advice here so I don't have much to add except good luck and I am hoping the pain you feel is the cancer dying!!! Stay positive and plan for a great outcome. Hugs!!!
Survivor: BC does have a nasty way of sneeking up on us. Now is not the time to be a super woman, it's a time to be selfish and heal your body. Reach out to those around you who can help and support you as your job shouldn't be your first priority right now. We have all gone through so much and know that you can come here as often as you need for courage and support from those of us who have been there. This too shall pass--Hugs!!!!
Kymn: You have a great attitude and your love for life and your children will be the strength to pull you through. Call your Dr. regarding any discharge immediately as you don't want to have an infection!!!
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Heidi & Kelben: I so love all animals big and small and I want to thank you so much for sharing your pictures and your lives here as it just makes me smile. The world needs more of you!!!
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I copied this post from another thread as I think it's good for us to know:
I have heard a few of my pink sisters say their doctors cautioned them against supplements high in antioxidants during treatment, swayed by evidence suggesting they can interfere with the drugs' effectiveness. You may have heard the same, and the jury is still out, because the epidemiologic data is limited. But a study recently reported (Cancer Eipdemiol Biomarkers Prev Dec 21) indicates doing some antioxidants from the time of diagnosis can cut your chances for recurrence, even if you take the supplements during chemo. The study looked specifically at Vitamin E and Vitamin C.
Background and concerns: Radiation and certain chemotherapies produce free radicals, ultimately causing oxidative damage which kills cancer cells. There is widespread concern that antioxidant supplements interfere with the drugs' effectiveness by not only protecting healthy cells, but shielding cancerous ones, too.
The Shanghai Breast Cancer Survival Study. This study followed 4,877 women aged 20 to 75 diagnosed with invasive breast cancer in China between 2002 and 2006. At a mean four years after diagnosis findings were: 18 percent fewer deaths and 22 percent fewer recurrences in women who used Vitamin E, Vitamin C, and multivitamins. This was regardless of whether they did chemo and after adjustment for lifestyle factors, socio-demographics, and known clinical prognostic factors.
What does the data mean? In the words of Xiao-Ou Shu, MD Phd MPH, lead investigator of the study: "Our results do not support current guidelines that all supplements should be avoided during cancer treatments. The results actually suggest that vitamin supplement use in the first six months after breast cancer diagnosis may be associated with reduced risk of mortality and recurrence. To my knowledge, this study is the first large prospective study among breast cancer survivors to investigate the association of vitamin use during cancer treatment and breast cancer recurrence and mortality. The results highlight the need for more research."
Shu suggests future studies focus on variable settings and populations, and consider factors like appropriate dosages as dose information was not available on participants in the Shanghai Study, though the majority was taking recommended over the counter dosages.
Contact information:
Xiao-OuShu, MD, PhD, MPH Division of Epidemiology, Vanderbilt University Medical Center, Nashville, TN; Xiao-ou.shu@vanderbilt.edu
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Thanks MBJ I am going to use a multi vitiam during treatment I will buy some tomorrow
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Hi fight for my kids or FFMK (can I call you that?)
You go girl..It just sucks when doctors won't listen to us...you really do have to take charge of your own care sometimes..I was lucky because there was not time wasted with me but that isn't always the case.MBJ...I take alot of supplements..I keep them all in a bowl..line them up in the morning and take them all...I probably should read exactly when to take them but I just don't...too lazy I guess!
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Hey TN sisters, checking in.
It's taken me a few days but I'm up and about after my first TC. At first I thought it was just the Benadryl than knocked me down, but now I know otherwise. Jeez, I feel like a 100 year-old lady. The good news is my tummy seems ok (thanks to the zofran) but the tastebuds have gone and I have the intermittent bone aches from the Neulasta.
I'm trying to hang tough as much as I can, and I know others have had more to deal with than me, so I don't want to complain but I'm wondering if this is going to be like this each time or will it get progressively worse in terms of fatigue and SEs?
I never thought to ask this and no one at my onc's office offered. Just trying to gauge what I'm in for.
Thanks for all the good wishes. I feel crappy but glad to have one done.
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I had AC and then Taxol. Taste was worse with the AC. With the Taxol the off-taste was just for a few days. Nothing really tasted *bad* just off....sugar and salt still tastes ok. I didn't have that metal taste people complain about.
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Michelle- the first was the worst for me-- felt a bit flu-ish (but very minor). The others were a non-event. I was lucky-- never had to have the Neulasta shots. I do remember dry, metallic mouth and decreased taste though. Nurses just said that each infusion could be/feel different and I kept waiting for the other shoe to drop, but it never did. I breezed through both chemo and rads.
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Michelle - My onco told me that I could expect the same SEs every time - they would not likely get worse, but they may last longer each time. My SEs were identical every single time. The last one seemed to be the easiest.
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Michelle 67
I'm glad to see you on here. I've been thinking about you, hope you are doing OK.
I was on the A/C, but for me at least, the SE got progressively worse. I barely made it through the last A/C treatment on Thurs March 3rd. I'm just now starting to feel human.
For me, nausea/constipation, and general pain were the big 3. The others (no taste, not hungry, fatigue, etc I could deal with). The general pain was more than just bone pain, like, it hurt to even have my son (almost 4 years old) touch my arm lightly. Just really sore. These got worse with each A/C. I'm hoping Taxol will be easier.
Hello to all my TN sisters out there! Thank you so much for all your wise posts, I really have learned so much by reading and posting here!
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Michelle, as others have posted, it is easy to see that everyone reacts so differently to TX. I did 6 rounds of TAC and 2 days After TX #1 went out for dinner and dancing. I felt great. But then TX #2 through 6 were a whole different story. The fatigue, constipation and general body aches set in. It did seem to get worse each round. But at the same time it is doable and eventually you do finish. Hang in there.
Navy
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Michelle- For me, apart for not tasting anything, the AC part was ok, no nausea. But the Neupogen (like Neulasta) shots were hard on my bones and nerves. My upper body was just very achy and my skin just hurt to the touch for about 4 days after each shots. But on the weekly Taxol, I did not have the Neupogen shots although I had 1 day of body aches the 3rd day of every treatment. But my taste buds came back so I could taste food again and I felt fine, no fatigue all the way through the 12 weeks. My hair even started to grow back after the 5th Taxol.0
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Michelle just relax I know it's hard, but take meds and watch some trash TV. I enjoyed watching all the Housewives shows on Bravo. Give yourself permission to chill.
Nails and hair slowly growing in. Now if I could just get my legs together. Doc said the sore leg muscles will gradually wear away.
You guys should see me going up stairs I look 90 years old. Claiming health and wellness!
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OH another thing DETOXING!
I was told to hold off on detoxing and to just take my vitamins and a drink plenty of water. Asked why, and was told the purpose of chemo is to kill any floating cancer cells. So don't prematurely stop that process. It can take up to a year ladies for chemo to get out of our system and being TN I want all the added protection I can get.
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I've actually taken off 30 pounds !! Quit all sugar, all caffeine (I was a coffee-holic!), all sodas and carbonated drinks. No white carbs (bread, etc). Wasn't as hard as I thought. I do indulge in one small square of 80% cocao dark chocolate a day....
The benefits of that are good.Bad news is my chemo isn't working well... headed to Dallas for second opinion and maybe some new protocols.
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TexasKaren: are you going to Anderson? What was your first chemo?? Are you involved w/ any of the PRAP trials??
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Hi Ladies -
Anyone interested in starting a thread or something more permanent where we could list our findings on how to survive post treatment? I think all us TN's worry about being "let loose" after all the chemo and radiation is said and done - I know I do.
What I want is for someone to hand me a very specific, comprehensive list of what to eat, what supplements to take, how much to exercise, ideal weight, recommendations for fasting or detoxing. Dream on - of course no such thing exists for us!
Maybe we could have a place to post information we have found on this subject?
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Hi Erica - I think there is already a thread along those lines somewhere in this forum. It pops back up to the top every month or so. It titled something like "Lowering Risk of Recurrence." You may want to scroll through a page or two and see if that is what you were thinking. But of course feel free to start a new one!
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Yes, I bumped that one a little while ago - maybe we could just add to it.
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texas karen I am so sorry to hear that. I wrote down some studies that are being done for us TN girls buts its at home when I get home I will look it up for you. Im at work now but check back tonight.
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Erica- Does your cancer center have a "cancer dietician on staff? I saw one a couple of weeks after my last chemo. She went over my current diet with me and gave me some suggestions to help me follow a low fat diet which is supposed to be good for TN. Her big no-nos were red meat (okay occasionally) and artificial sweetener. It was free of charge through my center.0
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TIFJ really no artificial sweetner oh dear I always use splenda in my coffee. and I thought protien was a good thing oh oh .
also wanted to let you laides know I found a website for us TN sisters it not as chatty as ours and fun lol but it does have a lot of info its tnbcfoundation.org if any of you are interested in checking out some of the information on there.
have a great night ladies
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I thought the TNBC site was kinda negative. I only read happy posts. Suggestion is a powerful thing.
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Michelle - I'm sorry to hear that the SE's are giving you a hard time. Chemo is cumalitive and some of the SE's can linger or become worse over time, but remember we all react differently. One thing that you will notice is a pattern of your good and bad days, which will allow you make plans for both the good and bad days. Be kind to yourself, drink plenty of water and if you can take a walk.
TexasKaren - I've just been dx'd with mets. I am curious what chemo were you on?
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Kymn - Thank you for that link! The more info the better, IMHO. This is the THIRD time I've had breast cancer. The first time was 18 years ago (lobular carcinoma) - the second occurrence (triple negative) was a result of the radiation I received 18 years ago. I has a mastectomy in 2008 but a local recurrence at the end of last year.
I'd really just like to stop having to do all this...
xx
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Wow, Erica - three times. I cannot imagine going through all of this more than once.
Random question for anyone who knows - what is a good cream or other treatment to fade a scar?
My lumpectomy scar looks great. It is almost invisible now. Weirdly enough, radiation seemed to do wonders for it. Probably the darkening of my skin is making it blend in better.
My lymph node scar is another story. It is ugly and brown. It never did seem to want to heal as well as the other incision. I want to do something to make it fade some.
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Aquaphor is good for scars. It is what you use after getting a tattoo. My PS agreed, and she also said basically any cream is good, and things like Mederma is expensive and not any better than Aquaphor.
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Thanks Dawn. Can you buy that at a drugstore?
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