Calling all TNs
Comments
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Callimomanddaughter - FWIW, I had TCx4 with no port. I asked about it and my MO said I didn't need one for four treatments. My veins were fine. When I went through chemo, I used to post on a TC thread and nearly all of the women had four treatments. In fact, I think there was only one woman in my time frame who had six. I actually think I coped better with my own diagnosis than when my dad had bladder cancer. Hang in there....I know it's tough when a parent has cancer.
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Bernie - Husband and I had such a good laugh at your diary! I think he winced, when we got to the power washing bit. Thank you for sharing.
Kathryn - Maybe you need to re-seat the potty? While it's up, bleach the exposed flooring? I hated filling mom's pill boxes - but did find it satisfying when done.
TifJ - well done on the candy self control.
SSmith - Well, I think you've won the worst day, hands down. I can only imagine, how long it takes for that news to sink in. We're here for you!
Calimom - What a tough spot you are in! Your mom sounds like someone I would love! But, I'll bet it's hard to be her daughter. My mom had a great desire to LIVE - if they told her she'd have to take off both boobs, an arm and a leg. she'd do it. It was hard to tell her, I thought she should stop fighting. I hope you can get all the information you need, to help her make the best decision. Do you think you could broach the subject of your being named her POA?
Nite all - sweet dreams
Inmate - May the 11th, be the last!
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Lovelyface...I have the same questions at times also...someone said to me once (who also had bc)...we can say why me..but then why not me...cancer doesn't seem to have any boundaries...really no explanation why some of us get it and some don't...I wish I understood the whys of it also,,,,...
Are you all watching the Olympics? wow..this is awesome...I just love seeing all the athlete's faces
....this has got to be such an awesome thrill...
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Lovelyface...I have the same questions at times also...someone said to me once (who also had bc)...we can say why me..but then why not me...cancer doesn't seem to have any boundaries...really no explanation why some of us get it and some don't...I wish I understood the whys of it also,,,,...
Are you all watching the Olympics? wow..this is awesome...I just love seeing all the athlete's faces
....this has got to be such an awesome thrill...
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Definitely watching the Olympics!!! Missed the first part - will have to see it online
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In reading the latest posts and things.......so being TN does that mean we're all on the path for recurrence and we should just plan for the end of our lives?! I try to stay positive but it's so hard when I have this TN diagnosis hanging over my head. That scares me more then anything else. Do people who're TN really go on to live LONG healthy lives or are we all doomed?!
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Borntosurvive - please read this discussion, it will give you hope:
http://community.breastcancer.org/forum/72/topic/783934
There are other discussions with 5+ year survivors, just look in this forum for topic that will encourage you.
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And another thing to keep in mind...no one knows what the future will hold. We could have a cure in two years. So never give up hope!
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Hi all! I don't post to much but I love reading all of your posts. I had my chemo and lumpectomy and finished my radiation today. I hope to get my life back to "normal". Thank you all for your knowledge, it helped through this journey.
Love and prayers
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Lisa - Woo Hoo! Doing the happy dance for you!
Was watching Olympics and forgot to take my sleeping pill. I loved seeing the joy on their faces.0 -
Borntosurvive, none of us want to be TN, heck , none of us want BC either! When first diagnosed with BC, my chance of 5 a year survival was 95%, the TN diagnosis brought that to 85% -- I am concentrating on the 85%, not the loss of 10%. I, myself am new to this so I do not have much to say except, please talk to your MO. Hugs to you!
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Sawasdee kha. I live in Bangkok,Thailand. Not fluency English but love to learn the 2nd language. I has been reading the post here after I was diagnosed as a tnbc a few months ago. I celebrated my 49 years young last week. I have been getting radiation treatments now 12 rounds already then 13 more rounds another weeks.
Thank you for all posting from all of you. Knowledgeble. Brave. Humorous. Caring. Make me feel I have friends who are with me all the way of my this hard journey, especially who have humorousity like CS...I love your post..thank you..you were back as friends request!
Even Asian culture is collective, close to family and friends but difficult to find people who understand what I feel exactly about my situation but you here.0 -
Welcome Nuan
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Dear God: Let me give you a list of just some of the things I must remember to be a good dog.
1. I will not eat the cats' food before they eat it or after they throw it up.
2. I will not roll on dead seagulls, fish, crabs, etc. just because I like the way they smell.
3. The litter box is not a cookie jar.
4. The sofa is not a "face towel."
5. The garbage collector is not stealing our stuff.
6. I will not play tug-of-war with Dad's underwear when he's on the toilet.
7. Sticking my nose into someone's crotch is an unacceptable way of saying "hello."
8. I don't need to suddenly stand straight up when I'm under the coffee table.
9. I must shake the rainwater out of my fur before entering the house-not after.
10. I will not come in from outside and immediately drag my butt.
11. I will not sit in the middle of the living room and lick my crotch.
12. The cat is not a squeaky toy so when I play with him and he makes that noise, it's usually not a good thing.
P.S. Dear God: When I get to Heaven may I have my testicles back?0 -
Ladies I'm not even going to try and answer all these posts (My god you lot can talk!!! lol).
Hi to all the newbies. You will get a lot of love and support and good advice on here.
Whilst I was at the Lodge the people there must have thought I was a nutta to keep rolling up my sleeve and looking at my arm but yep, I also left my watch at home. Never realised how much I would miss it till it wasn't there and kept looking to see what the time was. Breakfast is between 6.30 and 8.30 and the first day I set my cell phone to wake me up which was ok but I didn't set it the next night so the first thing I remember is a brief knock on my door in the morning and the lady who does room service came walzing in. I always wear a pair of knickers of a night under my nightie (in case of fire and a fireman has to chuck me over his shoulder!!). For some reason I throw of all the bed covers of a night regardless of whether it is warm or not so that morning when the lady came in my hat had come off showing my bald head and my nightie was around my waist. So thank God for the knickers. I must have given her a helluva fright you know with a bald head and an almost bald bum.
As always there is a dragon at these places and one of the smokers said one night we can't go past her to get out the main door or we will have to get her to let us in again. So we all sneaked out a side door and left it ajar. Just as we were coming back in again the dragon shut the bloody door so we all had to ring the bell and troup past her to go in the main door. Did she give us the evil look and she tut tutted as each of us gingerly went past her. We all felt like 10 year olds and must have looked it. All for a quick fag aye.
Mind you it certainly opened my eyes though. There was a young man there who had had his stomach taken out. They made him a very small stomach out of his stomach lining but it meant he couldn't eat very much and would be sick about 11 to 12 times a day. Another lady had bowel cancer and walked around with a towel and a bowl all the time and another lady with uterine cancer would have to dash away from the dinner table to throw up every night. I just could not go through that and was really quite glad for once that I have breast cancer. I guess there is always someone worse off then yourself.
My lap top is already sitting in my car ready for Monday morning so I won't forget it this time. Neither will I forget my watch.
Titan I have been watching the opening ceremony of the Olympics and thought it was brilliant. I cheered for the NZ team with the silver fern on their uniform and the stars of the Southern Cross but I also cheered for the team from the United States for all of you ladies.
LuvRVing I think you are trying to upset me. Nana's are supposed to have wrinkles and white hair like me but everytime you put up a new photo you get younger. I want to know just what it is you are taking to stay so young, cause I want some too.
My Tessa missed me whilst I was away cause I could tell by her greeting when I got home but Chloe just walked past me, little shit. Don't know why I bothered missing her.
My old fellar opened the cafe on the day I left so he has been very busy. Luckily my daughter Cindy is working with him so she can keep an eye on him for me to make sure he doesn't get too tired. But he says he is enjoying it.
I have missed you all this past week and won't be leaving my lap top behind again. In the meantime my thoughts, prayers and love are with you all especially Inmate, Hope, Minxie and Tazzy and that girl who goes "gigglesnort". Hoping for a peaceful nights nights sleep for you all with no bad dreams or side effects. Big hugs to all, Annie
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BE.. Thank you. Please keep sending your humorous, I love that!
Tomorrow I am going to see the doctor to do my brease mri operarion. They said I must take 1 1/2 -2 hrs. to do that. My nephew 'll be my accompany to the hospital. Hope I 'll get a good result.0 -
Yay, Lisa! Doin the NO MO CHEMO dance for you.
Welcome Nuan. You are among friends here.
Glad to hear from you CS. Please send along good wishes for your fella. Hoping all his hard work in is new business.
Calidaughter: I have read some excellent advise so far. Take some time to breathe and rest a bit. All this info can be overwhelming.
Good morning to all.
I am going to see Rascal Flatts tonight. Been trying to be in the right place at the right time to attend one of their concerts. Their song "Stand" was on my IPod for each and every chemo tx. I do hope they play it tonight.
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Hi all,had to take a break for awhile. I crave reading these posts,helps me to see all of you Living your life despite diagnosis. Everything went so fast from discovery of the lump to diagnosis to 2 surgeries and starting Chemo.Now it is a waiting game. 4 cycles of Ac,then,4 cycles of taxotere,then,radiation 5 days/week for 7 weeks.Spoke to RO, prolly won't start radiation until January. Have been off work since June 7th. Single woman with a mortgage, paying $600/month out of pocket to COBRA my insurance.No income but,living off some assets that won't last forever.Not only that,dealing with a flood of emotions. dealing with body image,feel myself changing from who i was to who i am becoming. Very little tolerance for Bullshit and things that people get upset about that seems so petty to me.Love being a nurse, now i can't work,have worked since i was a teenager so,this is so foreign to me!Feel restricted by limitations from things that have happened,fearing a low WBC count, repercussions of this treatment on my body by the time treatment is over.Still have my hair but,Monday is the 14th day after 1st chemo so,that will be gone soon. That's gonna be an adjustment. I am a very strong lady,have gone through 2 divorces,have taken care of myself, i know i can handle it,but, sometimes i just want to cry,let myself grieve all the changes out of my control,then pick myself up,and look it sqyare in the eye and say F*** You! Sorry,had to vent,thanks for listening
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Welcome Nuan! I hope your radiation treatments are going well. They made me very tired - so I just rested all I needed to. I hope you are able to do the same. Hugs from North Carolina, USA
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Thank You All for your advice.
Lovelyface I am the 2nd of 5 children. My brother and sisters all look to me for support in anything concerning Our Mom. I was dx in April 2005 ER-/PR- Her2+ RX; 4x EC, 1 yr Herceptin, 36 x Radiation. My mom didn't want any part of me being sick... that's just how she is. She accidentally saw me at my brothers house when I didn't have a wig with me and insisted I cover my head. She avoided me most of the time. She only asked to see my Lumpectomy breast after she found her lump in June. She remarked that she hoped they wouldn't scar her up like me! To be honest, I don't have a scar that shows. My OS did a great job of hiding the scar under the natural sag. I'm much smaller than my Mom and so she could see the difference in the size and shape of the breast. My lump was close to my chest wall at the 6 o'clock position. Hers was at the 2 o'clock and they had to remove her implant too. Mind you my Mom is very vain. She has had multiple plastic surgeries. So bottom line I have shared with my Brother and Sisters and they agree they don't want to lose our Mom. Yes we all have stated it "Everyone Dies". But if she doesn't have to, why not make every effort to ensure she has the best of care. My Mom is vibrant, looks and acts 60, has a very active lifestyle and is sexually active with her boyfriend. This isn't the kind of person that just crawls up and dies. I do feel overwhelmed because She is an adult and I ultimately have no say. No Judge would rule her incompetent, because she isn't.
From all I have read here and other sites, and with my own personal experience, Chemo is tolerable. Slows ya down and is inconvenient, but ya get through it one day at a time. My Mom is strong and could get though it. Probably better than most.
LoveRving; The OS and MO and 2nd Opinion MO said she should do TC. The dosages are just different. And they all recommend Radiation too.
Thanks Sugar77; I'm happy to hear that you had a good experience and are here to share. So your TC x4 IV didn't cause any pain or scaring of your vein? I ask cuz my Mom only has one good arm! lol She doesn't have any visable veins in the RT arm due to some plastic surgery she had in 2000. Left arm is all she has left that can be poked. I think this is why my MO recommended that she gets a port. Because of limited options if something goes wrong with the vien on the left. The 2nd Opinion MO didn't even look at my Moms arms. The MO nurse only drew blood from the Lft arm. Didn't look at the right cuz that the BC side.
BTW My Mom just called me, while I was typing this, and said she wants to seek a holistic or naturalist doctor for a 3rd opinion. She said she wants to see my sister's acupuncture doctor. When I asked why, she said it's cuz the 1 Plastic Surgeon she saw said she only had two options for reconstruction, 1) the remaining breast (lumpectomy) needs radiation and she would have to wait a couple of years and hope it doesn't scar much and then come in and discuss it. 2) do another surgery, as a nipple sparing MX and then put in an implant. My Mom said she doesn't want either!! So I encourage her to speak to a Holistic/Naturalist DR. Whatever it takes to ease her concerns.
What have you ladies heard of in that area? Any one personally know of a TN that has survived 5 years with this kind of care? I really haven't seen anything in the blogs.
Breathing in and Breathing Out! hehehe Now off to get some work done. Thanks Ladies.
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calimon-the doc told me if you do not do chemo you will not be here in 5 years, it is the only treatment for tn, sucks but at least we have chemo. And most of us are fairly young and still have to loose our hair, I just turned 42.
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CaliMomAndDaughter - yes, I had chemo in my veins with no port and had no problems at all. My veins are fine. I might also add that my father received chemotherapy (Gemcitabine and carboplatin) for bladder cancer when he was in his late '70s and he had no problems. I think the dosage is adjusted for geriatric patients.
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Hello all - went to the beach for a week - start taxotere and cytoxan on Tuesday . . . SCARED to DEATH . . . i've decided my "mantra" will be "I am STRONG - I AM NOT SICK" . . . . if you have time, tell me the "grocery list" of items I should have on hand . . . I am scheduled to get the "white cell booster" shot (can't remember name) on Wednesday . . . .
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FernMF,
Lots of fluids. Drink, drink, drink.
When getting the chemo, ask for ice mitts and socks to put on you hands and feet during the Taxotere. This chemo can cause problems with neuropathy and also with your nails. The cold helps to lessen the SEs to your hands and feet.
The "white cell booster" is called "Neulasta" if you are only getting 1 shot 24 - 48 hours after your chemo. Get the shot in your stomach if you can. Take a Claritan (regular, not the decongestant kind) the day of the neulasta shot and for 2 days after. Also take Aleve twice a day on those days as well.
I am assuming that you were given other medications to start taking the day before your chemo and for the next few days.
You will probably lose your hair 12 - 14 days after your treatment and, if you're like me, your roots will hurt a lot a day or 2 before that.
If you have any other side effects (like mouth sores or thrush), get prescriptions for mouth rinses. Don't be afraid to call your nurse if you have any questions or if you have other side effects - there are often things that can be taken or done to lessen or aleviate the SEs.
Good luck and try not to worry too much. The fear of the unknown can actually be a lot worse than the treatment itself. You'll get through this ok.
Doreen
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Fern--As we say time and again, we all react to the chemo differently. I had constipation, others here said they had the opposite. My personal shopping list would include stool softners, maybe something stronger, lots of fruit, vegetables and juice drinks. Oh how I loved smoothies that I made with just yougart and frozen fruit. Other sisters here will tell you what they found good to have on hand. Your friends will be asking what they can do for you. Send them to the store to get what you think would make you more comfortable. I'm 70 years old and lived through all the evil they pumped into my port. I can't say I sailed through the SEs, but I came out STRONG, NOT SICK. I'll be holding your hand Tuesday. Jan
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Four farmers were seated at the bar in a tavern. At the table next to them sat a young girl.
The first man said, "I think it's WOOMB." The second replied, "No, it must be WOOOOMBH." The third said, "You both have it wrong -- it's WOOM." The fourth stated, "No, it has to be WOOMMMMBBB."
At this, the young lady could stand it no longer. She got up, walked over to the farmers and said, "Look, you hayseeds, it's WOMB. That's it, that's all there is to it." Then she left.
Eventually, one of the farmers broke the silence by saying, "Well, I don't know. A slip of a girl like that, I don't see how she could know. I'll bet she's never even heard an elephant fart!"0 -
Dormac-what meds before chemo? I was not given anything before I started. I have only had one treatment but I did not need the shot after. I hope it stays that way I still have 5 more to go.
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Hi browerl, I was given anti nausea meds.
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