Calling all TNs
Comments
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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. -
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!" -
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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NavyMom, Karen --Thank you for warm welcome!
Similar to most of us, I'm not tired from
radiation like chemo,..not yet... however, I 've tried to take a rest as much as possible. Someone say after round 15 it could make us be fatique. I shall see that next week!
Today I went to the hospital to do breast MRI. When I arrived home, I got phone call from Dr. ..she said after seeing mri nothing to be concerned. Anyway, she wanted me to get ultrasound my left breast to check sth...
I need to make an appointment then.. -
Nuan, rest as much as you need .Radiation does catch up with you.
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Browerl - I was given Dexamethasone (steroid) to be taken the day before, the day of and the day after chemo (2 twice a day) and then 1 a day for the next 2 days. I also took 1 Zofran (Ondansetron) (anti-nausea) in the morning before chemo and 1 that evening and the same the next day. I also had a prescription for Prochlorazine (anti-nausea) to be taken every 4 hours as needed.
It seems to me that I might have read that some on this site have been given the steroid intravenously at the time of their infusion.
Anyway, that's what I was given but, as you know, treatments can vary from one doctor to another - so maybe FernMF will not have medications to take before her treatment.
Doreen -
DorMac-I was given steroid and anti-nausea meds intravenously then chemo one right after another along with iv fluids. I have prochlorpazine for nausea every 4-6 hours as needed, but I was not given anything days before. It is amazing how we all may have tn but each doc treats it a little different.
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CaliMom,
My father had chemo at age 83 for esophageal cancer - he had 5FU and possibly cytoxan or one of the carboplatin type drugs, can't remember now - but I do remember the oncologist telling him that because he was in such good physical condition for his age that he was going to give him what he would give a 35 year old. My dad's cancer was inoperable due to its location. He had a complete two year remission from the chemo and after recovery from the chemo, was back to living alone in a two story house, clearing brush, gardening, etc.
I had a 2 cm or 2.5 cm tumor (MRI/mammogram) and also had implants at the time. I opted for a mastectomy of the left breast and then opted for radiation due to having 2 positive lymph nodes. This has really impacted me in terms of reconstruction but without radiation the reconstruction would have been much easier. I have seen some really good results when women have the NSM and reconstruction with implants. I was originally diagnosed triple negative but when they did the mastectomy following my initial chemo they found 5-10% ER receptors in the remaining tumor. I even opted for additional chemo for four months after surgery in a clinical trial setting. Hopefully your mom's visit with the acupuncture doctor will lead her back to chemo because it really is needed for triple negative. I'm sorry you are in this position; it must be very difficult.
As far as any advice - If I had everything to do over, I would have gone to one of the very best cancer centers in the country at my initial diagnosis. They simply deal more with triple negative than other places. I sometimes wonder if I had had a carboplatin drug instead of cytoxan if I would have had a complete response to chemo - which is associated with a better outcome. I also feel if I had been at MD Anderson or one of the larger centers that I would have been scanned during chemo instead of just given a physical exam.
Christina
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I am really having a bad hair day. No matter how prepared you are for it it hits you like a wall falling down. I was showering this morning just 12 days after my first chemo and my hair is comming out in clumps. I just sank to the bottom of the shower and cried the hair was all over my hands and you can't get it off. I will call my hairdresser tomorrow and make an appointment to shave it off and get my wigs fitted. It is only 12:00 but I am having a glass of wine.
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browerl- so sorry. I think the hair coming out is one of the hardest parts of this whole mess. I had my husband buzz my hair. I didn't cry until he was done and I looked in the mirror. Have that glass of wine and maybe a little chocolate too!
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Browerl--So sorry you have to go through this. I can so relate. It seems that no matter how prepared we are for hair loss, it is still a shock. Try to remember that no one loves you beacuse of your hair. Wear your wig, scarf, hat as a badge of courage. Jan
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browerl-you are right. There is nothing that can prepare you for the hairloss, it is a very difficult part of this journey. I also had my hubby shave mine, and I do think it is best to shave it instead of letting it fall out. It is a control thing. I chose when to get rid of my hair, even though I knew I had to do it within a certain timeframe! Find a beautiful wig and some scarfs or hats for when you do not feel like wearing the wig.
Luan-I love that people from all over the world "meet" here! Your english is very good!
Tif-I have been feeling pretty good. I still have issues with range of motion and tightness from my bmx, so I go to pt 2 times a week.
My bone scan is coming up:( I try not to think about it, but I am stressed about it. I have some hip pain, so my mind goes to dark places...
Hi CS, don't forget your computer or watch!
Thinking of you Hope, Steph and inmate.
Steph, so sorry you got the news of lung mets. Hoping chemo will blast those spots away!
BE-can you get my dogs to obey that list?
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2 of my dogs with my mid life crisis new car!
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browerl - the loss of my hair was the worst thing for me too. Losing my breasts was far easier emotionally than losing my hair. Make sure you get a comforable wig. Mine was a little tight but I was told it would stretch. Well, it didn't and I'd have a raging headache after wearing it more than 4 hours! It looked great but I hated it.
Those of you who had rads... I finished last Monday, and my rad site looked fine, just a little pink with some spots. Well now a week later it is awful! Huge scabbing blisters covering 3x4 inches, tight skin, pain - I can't believe what a change. I went caving last weekend and now I can't imagine doing anything physical, the pain and loss of mobility is so much. Does this sound normal? I called the rad onc Friday and they said yeah, yeah, normal, put aloe and cream on (the silver stuff they gave me). Is there anything else I can do to heal this up faster? One week from today I'll be at the ocean and I can't imagine letting salt water touch this.
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First Browerl - I am so sorry... that was the first thing I really cried hard about too. It took me a day to get an appointment with my hairdresser. Once my head was shaved I had to laugh at how small it looked. And then smile at how beautiful my eyes and smile were. The good thing about it is it brings out your eyes! 2nd, is if you ever had aspirations of seeing what it's like to being a Burnett or redhead this is the time to do it!
Your Avatar picture show you to be a beautiful young woman... you still are. Think of it as an experiment, on how people treat you as a blond vs; brunette vs; redhead. Have fun with it. If you don't want to wear a wig... like when its real hot out, then be a trend setter and go all natural! lol Remember it's only for a short time in the big scheme of things. I do remember crying for a bit...as it made me have to realize I did have cancer, which was hard to accept, when I really didn't feel sick. I know you can do this like the rest of us. It sucks and slows us down for a minute, and in the moment feels scary. But you can get through it. BTW one of the good things of loosing my hair is I didn't have to shave my legs for almost a year! Bonus!! Make fun of it. I will keep you in my prayers.Sugar77 and Christina1962 Thanks for the encouragement and stories. I wil encourage her to do more research so she feels comfortable.
I will be seeing my Mom later today to tutor her on her computer!! She says she can't figure out how to send out mass emails! Hahaha I want to show her this blog spot but won't tip her off to me being here for advice. Thank Goodness there are a lot of different forums.
My Plate is about to get fuller! Full of little boys' laughter, rambunctiousness and patter. My oldest daughter is sending my 3 lil grandson's out here to Cali, for a week, cuz she is exhausted, as a single parent. The boys are 2, 5, 7 yo. They live in VA now, and I havn't seen them for almost a year, so this should be fun and a good distraction. God Keeps sending me opportunities.
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minxie - I had severe burns from rads (I was 69 at the time) and RO tried several things. The only one that felt good was XEROFORM. It is a gauze with petrolatum (think vaseline). It took several of the 5x9" dressings to cover my wound. These dressings are made for burn victims. All I can remember it was soothing and kept my skim supple. DH had to buy it at a medical supply store, but local drug store might be able to order it. Good luck. I can't imagine getting sun, salt water, and sand on your rad site. Jan
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Browerl . . . I'm with you . . two weeks from now . . . I am calling my hair dresser tomorrow and get a short pixie cut . . . and go wig shopping someday this week too . . .
Thinking about you all . . and STILL scared here in WV . . . .
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