Calling all TNs
Comments
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Netter maybe this will provide some clarity. http://www.nlm.nih.gov/services/ctphases.html
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I am sorry for your wife and you. My husband is going through a lot with me and I understand..............thank you for the info. Very helpful
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Dx ovc October 2010, Iv and ip treatment, best result from surgery, nothing on the omentem , tumor removed, hysterectomy, 45 staples from my chest on down. Exactly 2 years later, at routine mammogram they found something. Did not know what except that it was cancer until I had double mastectomy, with reconstruction. Hoping for. Breast cancer how many people can say that. Traveling ovarian would be worse. So I will be 25. For the triple negative count. I had 4 chemos 2 weeks apart, drugs that would also be used for ovc. Story gets worse, too much for now, just rear ended by truck, broke the expanders, seatbelt..... It never ends
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Sun, we are here for you. You've been through a lot, and everyone here has a hug, smile or prayer to share with you. Hang in there, and come back and post more when you get a chance. Thinking of you, and hope that tomorrow is a better day!
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Sun - just can't imagine how hard things must be for you right now. You will find lots of help on this forum - some women of whom you are one have been through a lot so I am sure you will get comfort and support by visiting us. Prayers and thoughts are with you.
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HI Ladies, oh this is for Kathy and Karen as well (woops didn't mean you aint ladies!).
The last two weeks have been a shit fortnight.
First of all my beloved eldest girl Cindy found a breast lump. You know me panic, panic. Off for a mammo and an ultrasound and the results finally come back today nothing sinister but patient may like to go to a specialist to confirm this or for further investigations. So half of a good result. But I won't be happy until she see's the specialist and gets the all clear confirmed. I thought I was going to go nuts, more than usual!, whilst I was waiting for the result.
Then I came out in a rash. On my BC side. Panic, panic. It started off just one or two above my scar, then as they began to fade I got more right on the end of my scar. I thought I would wait and see what happened to my girl first as of course I was making all those bargains again as I did with my youngest girl with God. Finally I saw my breast surgeon and he said no its not a recurrence. I trust him deep down so I hope to god he is right. They are beginning to fade a bit so I am hoping its all ok.
Then, my old fellow got the trash bag ready for collection and left it in the middle of the kitchen floor and promptly forgot about it. I didn't go home for lunch that day so when I finally did arrive home there was rubbish for england because Tessa and Chloe got into it. I cleared all that up and washed the bleeding floor again, only did it the night before, and wacked the two dogs (In case you are wondering a slight tap on the arse). Then the next day Tessa had diarrhoea all over the laundry from eating the trash. As most of you already know she has pancreatitis and all I could think of was christ another thousand or more bucks for the vet bill but, thank goodness it was in the laundry. Chloe must have eaten the trash too cause she didn't want her dinner that night either. They seem to be doing ok now though, thank goodness. Friggin animals, don't yer just love em.
Then, to top it all off. I got my lymphoedema sleave which covered just above the elbow to my wrist. Well that was okay but then my hand started to swell. So the Doc at work said take it off straight away or cut the end of the sleeve by the wrist. Well I wasn't going to cut it so I took it off. Nobody saw it only coming to the wrist under my work uniform. So I rang the fellow about it and he said well you will have to have one that comes down the arm, through your thumb and half way across your hand. I thought oh well thats ok, what the heck. Well, when I went to collect it the chap said it may make your upper arm swell but give it a try. I thought WTF if it makes the top of my arm swell I won't be able to type at all and I didn't want to try it in case it did swell and wouldn't go down once the swelling was there. So I aint wearing it at all now. Wasn't a very nice colour anyway!!
Just to top it off my home computer has kept coming up saying error all week. I haven't had time to take it in the shop and believe it or not I have typed this all once this evening and lost it.
So you see it's been a shit of a fortnight.
In the meantime, welcome to all the newbies. You will think I am nuts, well I am most of the time, reading all this but you will get used to me honestly!!.
Karen frigging great news about the trial. Now what does this entail in your country and what is the drug called. I am keeping my fingers and toes crossed for you.
LUV hope you are feeling better. Sending a big warm hug.
Kathy you still got that tree? It's nearly Christmas you know.
Hi LVRM hope you are well and not doing too much. Hope that granddaughter of yours is enjoying college.
Hi Jan I miss you too. Big big hug.
And I miss my BAK and my lovely face
Titan where are you, speak to me.
Oh yes, more news while we were out at the doc's my daughters house was broken into by a gang of kids playing truant. They took heaps of stuff, clothes, my daughters laptop, x box, and phones and even my grandson's camera which they proceeded to take a picture of all of themselves, stupid bastards. So it made it easy for the police to catch them.
Well this should keep you going for a while. Best of all I get to lie in tomorrow morning until 9am unless the old feller wants me to go and clean the cafe. Bloody men.
Love you all heaps. Annie xx
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58 Triple negative Breast cancer
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Hope you can use a laugh or two:
Undeniable Adult Truths
1. I think part of a best friend's job should be to immediately clear your computer history if you die.
2. Nothing sucks more than that moment during an argument when you realize you're wrong.
3. I totally take back all those times I didn't want to nap when I was younger.
4. There is great need for a sarcasm font.
5. How the hell are you supposed to fold a fitted sheet?
6. Was learning cursive really necessary?
7. Map Quest really needs to start their directions on # 5. I'm pretty sure I know how to get out of my neighborhood.
8. Obituaries would be a lot more interesting if they told you how the person died.
9. I can't remember the last time I wasn't at least kind of tired.
10. Bad decisions make good stories.
11. You never know when it will strike, but there comes a moment at work when you know that you just aren't going to do anything productive for the rest of the day.
12. Can we all just agree to ignore whatever comes after Blue Ray? I don't want to have to restart my collection, again.
13. I'm always slightly terrified when I exit out of Word and it asks me if I want to save any changes to my ten-page technical report that I swear I did not make any changes to.
14. I keep some people's phone numbers in my phone just so I know not to answer when they call.
15. I think the freezer deserves a light as well.
16. I disagree with Kay Jewelers. I would bet on any given Friday or Saturday night more kisses begin with Miller Lite than Kay.
17. I wish Google Maps had an "Avoid Ghetto" routing option.
18. I have a hard time deciphering the fine line between boredom and hunger.
19. How many times is it appropriate to say "What?" before you just nod and smile because you still didn't hear or understand a word they said?
20. I love the sense of camaraderie when an entire line of cars team up to prevent a jerk from cutting in at the front. Stay strong, brothers and sisters!
21. Shirts get dirty. Underwear gets dirty. Pants? Pants never get dirty, and you can wear them forever.
22. Sometimes I'll look down at my watch 3 consecutive times and still not know what time it is.
23. Even under ideal conditions people have trouble locating their car keys in a pocket, finding their cell phone, and Pinning the Tail on the Donkey - but I'd bet everyone can find and push the snooze button from 3 feet away, in about 1 .7 seconds, eyes closed, first time, every time.
24. The first testicular guard, the "Cup," was used in Hockey in 1874 and the first helmet was used in 1974. That means it only took 100 years for men to realize that their brain is also important.
Ladies.....Quit Laughing.0 -
Oh, Annie, another scare for you with your oldest now. My heart aches for the anxiety and fear you all went through. Will she be seeing the specialist for futher clarification? I hold you all in my thoughts and heart. So sorry about the doggies, been there, done that too! They can be little stinkers, not much different sometimes from having toddlers running around and getting into everything!
Glad to hear the doc felt the rash was nothing, and it's going away. Probably all due to just nerves and anxiety. We are winding down, Bryanna and I, coming to the finish line soon. We can begin bringing all of her stuff (it will take at least two car-loads) to her apartment at the college, but not until August 16th - and it must all be done on that day. College is about 1/1/2 to 2 hours away from me, so, if I cannot get my sister and her van to take the second load that day, then I will be making the trip double that day. She starts school on the 19th so should be all settled in by then - and if she's not - oh well!
Will be keeping you close to the heart, Annie.
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I have a question that I'm pretty sure no one can answer but here goes...I am triple negative and have my mastectomy on Aug5. I wanted immediate reconstruction but the PS said we can't if I have any nodes affected because of radiation. I've already been told I will have to have the balls to the wall chemo because of the triple negative thing...why would I have to have radiation too?? Isn't radiation localized and chemo hits everything? Seems redundant?
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relocatedta... They told my wife that if she had a mastectomy she wouldn't need radiation, just chemo because of the triple negative. She chose lumpectomy, so therefore will have chemo, followed by radiation.
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Relocated------I had the whole works. Mastectomy, chemo, and radiation. As far as I knew, that was the standard. Some seem to have a different treatment.
My understanding is that chemo kills all those cancer cells, plus other rapidly dividing cells. The radiation is to make sure there aren't any stray cancer cells hanging around that didn't die off in chemo. Your treatment plan doesn't sound different from mine. This is all to scary and new to wrap your mind around. Keep asking questions here. And best wishes.
Annie------Wow! What of run of unfortunate events. We do worry about our kids more than ourselves, don't we. I sincerely hope your daughter's lump turns out to be just a lump and nothing else.
And your worry about Tess and Cloe- so sorry. And lymph worries! Yikes!!!!!!! Sending big hugs and hopes that everything mellows out in your life. Your certainly need a break. Keep in touch. Jan0 -
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Relocated....I had the same question when I was diagnosed. My MO and BS both told me the same thing. TNBC is quite aggressive and it is treated quite aggressively also. Remember there are no targeted therapies for this type of cancer so the treatment plan is to hit it with everything that they got. They try to get everything because all it takes is for one rogue cell to get left behind and then its trouble again.
I know its a lot to deal with and no one is happy about it but we have to do what we have to do to survive. Take it one day at a time and you would be okay.
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I found this article about the benefits of radiation therapy for tnbc on tnbcfoundation.org...hope it helps
http://forum.tnbcfoundation.org/radiation-and-possible-benefits-of-rni_topic10437.html
Annie...my arms are wrapped tightly around your whole family. Sounds like your daughter is in good hands with the doc. xoxo hang in there cookie!
Maggie0 -
Hi Ladies,
I'm afraid my mom (Michelle/LuvRVing) isn't recovering as well as we hoped. She's still pretty weak. She's not getting on her computer at all, which is something she's done pretty much every day since laptops exhisted, so it's odd to show up at her place and see her sort of vaguely watching tv. She's been on a lot of steroids and it seems to be helping with her appetite. My step-father is making sure she gets her Zofran ragularly and that helps, but her appetite is spotty at best. She's also working with a physical therapist a couple times a week because she's unable to walk unaided and dragging her right foot when she walks.
Okay, the really bad news. She has a largish mass on her liver, and a small spot on her lumbar. We were hoping that even though her tumor markers had gone up a bit, she could still take a chemo break and recover some strength. Instead, she's wanting to jump right back in for fear of giving the cancer yet another inch. The radiologist and oncologist have decided that the next step is to try Navelbine and Avastin. The Avastin is specifically to target the mets still in her brain. I believe she'll do Navelbine for 2 weeks and then Avastin for 1, then take a week off.
My cousin's wedding shower is in Rochester, NY, next weekend, so she's agreed to wait at least until after that trip. My sister and I will be taking her while my step-father works on moving them out of their dear lake house with it's many many stairs and into a first floor two bedroom apartment that will be easier for my mom to navigate. Needless to say, we are all upset to learn that yet another treatment has failed and that mom's tenacious triple-neg cancer just will not give us the time we need. As mom said recently, I feel like the window is closing.
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LovingmyMom - thanks for the update. So, so sorry to hear about the lack of progress - it must be so tough for you and your Mom both. Healing thoughts and prayers are with you both.
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Michelle: I'm praying for you. Big hugs and hope to hear a great update soon.
Relocated: Radiation and Chemotherapy are two different treatments designed to target cancer cells, each in a specific way through a different means. Chemotherapy is a systemic treatment, while radiation is a local/local regional treatment.
The recommendation on the course of treatment will vary per individual, as the Oncologist and the medical team will determine the patient's risk factors. Several things are considered, such as: final pathology report, family medical history, age of patient, size of tumor, if any nodes were involved, margins, location of tumor, etc.
I consulted with two tumor boards.
I would imagine you will find our much more and have more clarity once the final pathology is returned from your surgery.
Let us know how things go for you, and also on how you are doing once you get home from the hospital. I will be thinking about you on your surgery day for sure!
- John Hopkins Breast Cancer Center has a free question-and-answer service, and they provide answers to a wide range of topics from symptoms of breast cancer, to breast cancer diagnosis, question about breast cancer risk, mastectomy, radiation and many other topics. Ask An Expert: John Hopkins Breast Cancer: http://www.hopkinsbreastcenter.org/services/ask_ex...
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Thanks again everyone for your insight! Finished the EC this week, so happy THAT is over!
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Dear LovingMyMom and LuvRVing - so sorry to hear the news that the previous treatments have not worked to kick the FC to the curb. Really hoping that the Navelbine and Avastin do their job and don't sap your strength too much. Enjoy your weekend trip and then do whatever you have to do to beat this stuff up! You are in all our thoughts and prayers and we have our arms around you to help you in this fight. {{HUGS}}
Doreen
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Michele -- Holding you in my heart. I'll be waiting to read your always-interesting messages. Jan
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LovinMyMom,
I am so sorry to hear about thenewsof the mass and spots. I don't have direct experience with that but I've seen several people on the forums who have lived quite awhile with the kind of aggressive treatment your mom is going to get. I'd be wanting to get startedif I were her too, but a short rest seems like a good thing and she will be distracted by the goings on.
Hugs,
Peggy0 -
Thanks so much for the update on Michele. I hope the Avastin will do trick for her and help with the brain mets. She has been a great inspiration to me, and I always think of her signature on her posts, "Be kind to one another." Sending her all my best and please let her know we are all thinking of her and miss her.
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Al- I think it is sooo sweet that you are involved with this site. You obviously love your wife and are also wanting to help others.......some husbands carry on with life as if its no big deal....Your wife has an awesome husband.....
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LovinmyMom- please give your Mom a huge hug for me. I just hate to hear that she is struggling right now and I hope the new chemo is effective yet gentle on her. I so wish I had had the opportunity to meet her face to face when she still lived in Blue Springs. Thinking of her and sending good thoughts!
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Dear Michelle
You are in my thoughts.0 -
Hang in there Michelle..wishing you well..sucks you are going through this...
Annie..tried to call you via FB a couple of times but you were unavailable...and after hearing what you have been going through I can understand why!!
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Michelle:
Wishing you all the best while you travel yet another bumpy road. Prayers and thoughts are with you for now, and always.
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So very sorry to hear this LovinMyMom. Your Mom is such a sweet person, always had an answer for me when I was here last year asking questions for my own Mom. I hope they can find something to make her as comfortable as possible. Thinking of you and your family.
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Luvinmymom...you are such a special daughter...keep taking such good care of her
Luvrving...we love you and miss you....finally read Fifty Shades of Grey. Never forgot you posting about it...quite the erotic read
Please feel better soon
Maggie0
