Calling all TNs
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Hey Everyone,
I havent been here in sooooo long. Guess it meant im doing fine. I have a question to all of you . Has anyone had the problem of falling down for no reason ?? I've fallen 3x so far, always to the left, for no absolute reason. No dizziness, no numbness in the legs. I've been to a neurologist who did just the simple everyday check, since she can't see inside of my head, she has referred me to a radiologist to do a MRT on my head. Im kinda nervous on this..... not only because i've never had an MRT but because i am scared that I may have gotten brain mets. Can anyone realte to this ??? by the way, I'm in my 3rd year ( after the Operation ).
Would appreciate any info or tips....
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Hello my sisters, wanted to update u on my progress. Today is my 3rd brain radiation, still in high spirits, got some awesome news yesterday. Onc and surgeon both feel i should start chemo ASAP since I have tumors in lungs, bones, appendix, just about everywhere. Decided to start next week, so wish me luck. I will be having both at the same time, I'm sure I can handle it. I did it once, shoot I could do it again. As long as I can kill all those suckers and live a happy/healthy rest of life with my girls, family, I don't care how difficult this journey will be. I'm all up for it. I could still use words of encouragement, prayers, and your thoughts, so keep them coming!!
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Spoiler Alert ~~ long post! Hello friends I guess that I'm back here on the TN board because I am scared. A woman with whom my daughter works now has BC (her dr thinks) in her lungs. Like me, she had a new breast cancer about 2 years ago, after BC about 10 years before. I am not sure if she had a lumpectomy or mastectomy the first time, but the second time, she had a mastectomy with chemo, as I did. Both of my BC's were in the same breast as the first time. That's supposed to be 1/32,000 mastectomies. I also went through radiation my second time ~ I am not sure about her. This whole situation makes me sad and angry that this might happen to me~~that I might develop mets. I feel ditto for my 31 year old daughter and 4 of her cousins (5 girl cousins of 7) who has had 3 close family members with BC, and 2 of them die from mets. After my mastectomy in 2000, I had scans at one year, and every other year after that, and my MO this time is not doing this. But I will be having a Breast MRI in November, ordered by my breast surgeon.
Dr Elissa Santoro (Livingston, NJ) is an amazing surgeon and person. When I asked her if I possibly be cured in June 2011, she responded, "Lee, I really don't like the word "cure." You were in remission before and we will put you back into remission again."
PS I never figured out how to put the facts of both BC into my profile. Maybe it's easier this time. LOL!0 -
Lee, it looks like your 2011 bc was also caught early. Try not to think of the m thing ..... I have heard of women who, after a recurrence or after a 2nd bc, lived a full long life, and never had to deal with it again - sometimes a daughter will tell us of her mom or mom's friend that went on to live her full life.
Bex, what is the biopsy for? A breast lump? We are ALL sending our prayers for you!!!
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Julie, you're amazing with just the way you are able to update us, and post us not only of your status, but also give us tips on how to help ourselves. You are so selfless. I also think you are one strong chic! I know without a doubt, you will be able to do both treatments at the same time and you will be having people shake their heads in bewilderment at you. I know you will set records and amaze your entire medical team. You've got this one! We anxiously await your updates, and enjoy reading all the updates of good news that you get. You radiate, even in the most trying of times, so that's how I know you will be able to get through this! Thinking of you so much right now. Praying for everything that you need! xoxo
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Starting chemo with continued brain radiation next week Thursday. Onc wants to try abraxane and/or carbopratin once a week for 2months, if I can handle it, he wants to up the dose to once/3wks, this works well for mets and other organs where cancer has spread, but still waiting for better path report. They said I just have mets and can't find place of origin, keeps changing too much, so onc sent sample to another lab outside that can stein and hopefully find the true origin so he knows exact cocktail that will kill all those suckers. Can't wait til they're all gone forever and ever!
Today's radiation went well, but face was starting to swell to the point that my mask was getting too tight and uncomfortable, radiation onc said due to steroids, so he will most likely change it from 3x/day to 2x/day to prevent more swelling. Otherwise little to no SEs.
I had a yummy lunch after and green tea shaved ice was delish with my mom, oldest bro, and niece. Afterwards came home and am busy posting updates on FB and here.
I have such an awesome support group this time, since we moved into my parent's house. We have 11 people living under one roof, in a 5 bedroom house with 3 bathrooms. My parents, my oldest bro, his wife, his 4 grown kids, me, and my 3 kids. My oldest bro is 10 yrs older than me so his youngest son is a senior in high school, all grown up compared to my 10 and 7 yr old girls. My nephews and niece have taken on the role of surrogate mom and dad, since I am sick and my husband due to work being so far from here us temporarily living at my cousin's house 1-1&2hrs away. Tonight was Back to School night and my oldest nephew, 22 and my niece 21 took my girls there to meet the teachers and do parent stuff for me. So glad we r staying here and getting all this help. The older ones also drive so they help me with picking up the girls since I can't drive right now, I love my family! They're awesome!0 -
Aw, Julie, so sorry you have to deal with this, but so impressed with your courage and strength. You sound like a fighter and survivor. Just wanted to send my support and positive healing thoughts in your direction. Looking forward to hearing about a positive response to your treatments. Carol
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Has anyone tried out the new forum? I have no idea where our posts are. I don't want to have to start over. I have tried different searches i.e. Calling all Tns, Titan, Luvrving but nothing comes up. Will they be shutting this forum down. HELP
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Not sure what new forum you are talking about. They changed the format on here a while ago but I have not heard about any new changes.
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Hey there Wrenwood ....
We are actually in the Forum Called: Triple Negative, but the Topic is: Calling All TNS. If you scroll to the top of the page, you'll find it. Now, to search for members, the easiest way I know is to click on the search box to the left at the very top of this page. There is a menu on the left. Click that search button. Then, the page it takes you to, gives you two options. To search via key words or member name. You can plug in the members name and find their posts. I did both for Titan and Luv and both came up.
Also, wanted to update everyone that Steelerfan got great news today, her brain MRI was normal so they will continue to try and find out why she is having those balance problems.
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Yay, for Steelerfan!
Cocker, love your toons, missed them!0 -
just want to say I love your your attitude !!! fantastic... keep it up , your an inspiration to all of us.
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just had my stage 2 recon on wed. back at hotel and feeling pretty good. pain is minimal. the girls are not quite there yet...more surgery ahead but so far so good with no complications.
Maggie
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Oh Maggie, that's wonderful news. Hope everyone is doing great today ... and Julie, thinking of you!
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I am an idiot sometimes. I had rec'd notice from another BC.org that they were changing the forum. I thought it was this one. I panicked when I thought I was going to lose this forum and all my "sisters". Sorry for the confusion. I must learn to read more slowly and get all the info. I think I may have "joined" too many BC forums...this is the only one I read daily.
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I have DCIS that's non Invasive and had a lumpectomy 4 weeks ago. Now that I just found out I'm triple negative, should I be worried ? Or should I have decided on a mastectomy instead of a lumpectomy ? Do I worry only if the cancer is in the lymph nodes ? These are some of my questions now .....
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Goldy - there is no way you can have cancer in the lymph nodes if it is DCIS. There is no reason for you to think a mastectomy is a must because you are TN. Many of us at all stages have had a lumpectomy. There are other things for you to consider if given a choice of MX or LX which usually mean LX plus rads.
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Thanks , yes I agree . What I was wondering if some people might decide to eliminate future cancer by mastectomies since they know they are Triple Negative . Not saying I would do that , but lately most of the women I've read about are having mastectomies to avoid things in the future .
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Julie-I am so inspired by you and will keep you and your family in my thoughts. I start chemo in 4 weeks...and I'm getting a bit overwhelmed...are there some of us TN that don't have recurrances???
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Relocatedtarheel - There are many of us that haven't had reoccurences. One of the fist things my breast surgeon and my oncologist told me about being TN is that while it's a very aggressive type, it also responds very well to chemo. All of us hope to deal with this one time and be done, but unfortunately, it isn't always the case. That's why this is a great, supportive place to be. We celebrate the victories and try to lift each other up when one of us hits a bump in the road. Good luck with your chemo and don't hesitate to ask questions. Be good to yourself while in treatment. We'll be thinking of you!
Julie - I don't post often but have been following your recent situation. You really are inspirational with your attitude. We're all here with you in spirit and hope this truly will be behind you before you know it. Hoping that the chemo and radiation get rid of this nasty stuff. Please keep us posted along the way.
Has anyone heard anything about LuvRVing lately?
Hugs to all,
Kathy
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Julie - it sounds like fun at your house!
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Kathy, I sent a PM to LUV's daughter last week, but haven't received a response.
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Goldy and relocated, I think the only person who knows what is to come of us is God and he only gives us what we can handle. Our job is to be more proactive and aggressive when we ask our drs for PET/CT/MRI scans and it never occurred to me that I should've asked for these after chemo, surgery, and radiation even though my nodes were clear. My new onc flipped out and yelled out my surgeon for not requesting these scans saying how they can guarantee it hasn't spread without these scans to confirm it. Blood tests are not sufficient to tell us we are doing well as most of us have experienced and any slight changes to our body we need to be aware of and never ever ignore them, how little it may be. Demand scans, cause American protocol says no scans if nodes clear, but I'm telling u all right now, we are triple negative and don't fit into that protocol! We don't have hormone treatments available for us scans are our only sure way of checking to see that everything is at bay. I don't really want to freak everyone out, but this is our reality until they find a cure it will be a lifelong challenge to keep cancer out of our bodies! Take great care of yourselves, eat right, exercise, think awesome/fun thoughts, reduce stress, get a hobby, and live/enjoy life!
I intend on being around for my girls' graduations, first boyfriends, marriage, and children, I need to spoil some grandchildren, can't wait! I know they're only 10 and 7yrs old now, but hey that's only about 20 yrs from now, I'm here to stay! I promised my girls that I will do whatever I can to make sure I don't leave them when they are still too young and can't take care of themselves.0 -
Relocated: The majority of TNBC will never have a recurrence. I have a pamplet from a foundation to help you with this. If you provide your e-mail address, I will e-mail this to you. I send it out often to newly diagnosed members, and will reference the page number that states the majority of TNBC will not have a relapse. With that being said, at another foundation website they made it clear that the best chance for sucess is with the initial treatment, due to the lack of a specific long-term targeted therapy (like Tamoxifen) so do make sure you have the most aggressive treatment that is available to you. And to let you know that all things are possible, I know of a lady who was diagnosed stage 3 10 years ago, with 11/13 nodes positive and she is now 10 years without a recurrence. She did have a mastectomy, chemo and radiation.
Please send me your e-mail address and I'll attach the literature for you.
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Wrenwood: Hehe - that's funny! Glad you can find us and keep us as part of your daily interaction.
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wow, Stupid computer just wiped out my post. trying again.
Not so great news with my PET scan. Other than the tumors I knew were on my chest wall, there seems to be some shadowing on the lung and a spot on my neck. MO thnks the lung may just be inflamation from SE of xeloda, no actual spot showing. the neck shows a spot, possibly a lymph node, but both MO and BS could not feel an actual lump. So... test is inconclusive. could be abnormalities of no concern, or could mean cancer is spreading through the lynph system. I started round 5 of xeloda, will be on it atleast 2 more months before next scan. I feeel kike the rug has been pulled out from under me yet again. I was really thinking I'd get the all clear for surgery to remove the chest wall tumors. I have NO symptoms of any organ involvement, even pulmonologist I saw 2 wks ago said everything liked great. 2 steps forward, 1 step back... and so the game of life continues.
Julie, I am so inspired by your attitude. I am the "baby" of 7 children, and I too love my family. They have been so supportive. Even my oldest brother, whom never shows his emotions, has repeatedly told me he loved me. Sometimes it take a tragedy or diagnosis to let those feelings be shared. so greatful for them, and my mom who will be 86 this September. She still wants to take care of her "baby" even though i'm 50.
I wish the rest of you a wonderful day. It's beautiful here in the Philly area, laundry on the lines, housecleaning being done, school shopping planned, then a nice glass of red wine to enjoy this evening sitting by the pool. Life is good even with complications, and I plan to enjoy every last bit of it. Hugs to all.
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Julie -so wonderful to hear that your family rocks! Just soak it all in my friend....Way to have a positive determined attitude. You are cool cat
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Here is a nice list of 20 important vitamins and what each one does - in easy to understand terms. I found it interesting, so sharing with you:
http://www.bodybuilding.com/fun/20-vitamins-supplements-to-increase-longevity.htm
I saw my BS on Thursday. He wanted to make sure if I was on any medication (which I am, Metformin) to be sure to get ample vitamin D. He said that many medications rob our body of the D, so to make sure I was supplementing. I told him that I had actually been supplementing for a year at 5,000 i.u. but had recently gone up to 6,000 i.u. So just passing along his information in case any of you find it helpful!
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Slowloris, You along with Julie have amazing strength. The fact that you were able to complete tasks (and feel good about it) says a lot. You are allowing yourself to experience some joy in life. I can picture sitting my your pool with a glass of wine, even though I have no idea what you look like..lol..you are making the best of an unfortunate situation. You go girl. Sending you a great big hug....
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