Calling all TNs
Comments
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Help me understand this. I am on the second week of the second round of Xeloda and am having more and more dry heaves than EVER in my life, I cannot find that this is a SE of Xeloda. My MO seems to think it is the liver trying to fight, I usually do not have any nauseaus feeling before this starts.She has me takiing Reglanand zofran, but. it feels more like muscle spasms to me, I am up to 4 times today and carrying a bucket in the car with me when we go any where we go. I feel like I am loading a diaper bag for big girls every time I leave the house. will this ever stop?
becccad
//f
PS!! Cancer Sucks!!!!!0 -
beccad - I hope someone comes along soon to offer some help. This really sucks. I know nothing about Xeloda, so not sure if this has happened to others. Did you ask the stage IV ladies? Someone there also on Xeloda?
So sorry you are having to put up with this.
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Good evening Ladies
Mags - hope your 3 monthly f/up went well. I would be a nervous wreck like you as well.
Onvacation - when do you start rads and do you have to go away from home for it or do you live near the hospital.
Tookybum - welcome. Just love the name. I agree with NavyMom we are not oncologists but the ladies on here have been through or are going through all the side effects etc and the oncologists forget to tell you everything, or don't think of it. Everyone of these ladies on here give good sound advice and they do know what they are talking about. Even if one hasn't experienced something another person will have and will be able to help. I have learn't more on here than ever than with my doctors, not that the doctors are not good but just that as I say they don't think of telling you everything you will go through.
Ksteve - Jan69 - I felt so much better when I read that you are 3a, stage 3. I thought I was the only one and I was worried about it but to know that you ladies are doing so well it gives me so much comfort to know that.
Jan69 - glad your DH's leukaemia is stable and you don't have to have a hysterectomy, woo hoo. No Jan I won't take my work to the hospital with me. I actually can't as its all set up from home but I really feel as if I need a break from typing at the moment because it is so stressful with my hands being like they are. I think the break will do me good.
Spica16 - thank you for all the information on radiation that was great and put my mind at rest. Just one other thing though do you gets nauseous or sick with radiation at all.
LuvRVing - thanks for all the lovely food pics. I eat a lot of what was on there especially water melon, just love it.
Jazzyj - I have the same fears as you. How do we know there is nothing happening in the blood with any rampant cells. And yes where did it come from. Its quite frightening. I would feel better with 2 monthly benign tests. Yea right, just hoping. There is nothing weirdo about you at all, otherwise we would all be weirdo's cause we have all been there. It's just normal fear and freaky feelings of what if, that the ladies tell me will lessen in time and we will go on with our lives as normal but some days it overwhelms me.
Kathy - good luck with your mammo. What treat have you got up your sleeve for you. I hope it's nothing to do with that handsome looking dude that lives three feet away from you!! Is it??
Ladies have any of you had terrible itchy spells with either chemo or taxol. Everyday I have a spell of it where everything itches, arms, legs, hands, head etc It nearly drives me nuts. I seem to be allergic to everything just lately. Pity I'm not allergic to typing although I can't even do that right at the moment.
Well the old fellar is nearly ready to go with the cafe. Just gotta wait for the till to arrive and the eftpos and as soon as the other lady is gone we can get in to clean everything. He's so excited, bless him. I think he's even thinking of it in his sleep cause he keeps mumbling lately.
We haven't heard from Inmate lately and do you know who we haven't heard from for a long time LRM. I wonder what she is up to.
Have a good evening ladies. Catch you later. Warm hugs. Annie.
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Morning Ladies,
Annie, I had horrible itching during chemo. Don't worry, it should start clearing up soon.
Beccad, So sorry your having such trouble with xeloda. I hope you get some info that helps soon.
I feel like I can't keep up anymore. For whatever reason my anxiety has really kicked into high gear. I've been trying to decide if it's time for me to take a break from the boards but at the same time I just can't stay away. Everything seems to hit me when I lay down to sleep. The dark thoughts rush in and my anxiety sky rockets. I also think I'm going thru a very selfish stage of Why me??? Ok, enough of my whinning.
I hope everyone has a wonderfull day, free of SE's and dark thoughts.
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Heather what you are going through is normal. You have just started a new job which is very stressful and you will be learning heaps as well. You are missing hubby and your babies and still getting over the side effects of cancer, it takes a long while to get completely out of your system you have told me that. With all that you have been through no wonder you have anxiety. This will pass. You can't leave the board we would all miss you so much. Your advice is so very valuable. Have you been working long hours, not leaving at the right time. May be you just need to say I have done a good days work, its time for me now and go see some of those new friends you have made or do something you really enjoy. I feel sure you will perk up no end when your hubby arrives. Just hang in there girl things will be better in a day or two.
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Heather - I second CS's advice!
CS - I just had to post that picture on Facebook and on my blog. Thank you for finding just the right picture with just the right sentiment! That one really spoke to me!
Beccad - so sorry you are having trouble on Xeloda. Are you taking it within 30 minutes of eating? Sometimes it helps to eat half your meal, take your X, then finish the meal. It's important to not take it on an empty stomach. The RN from Genentech explained to me that if you don't have food in your tummy when you take X, you end up with too much of it in your system too quickly. And of course, be sure you are getting plenty of fluids. See my picture of high water-content foods above. I hope this helps a little. And if you haven't already found us, please join us on the "All About Xeloda" discussion:
http://community.breastcancer.org/forum/8/topic/772113?page=60#idx_1785
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Hi Ladies- I have been on a BC thread vacation, but am back. I almost 8 weeks out from rads and pretty much healed up on the outside. I am dealing with swelling (lymphedema) in my radiated side and back. Thereapist has put in a note or a pump devise so I can get the pain under control.
The new thing I have been dealing with is belly pain and loose bowels for 5 weeks or so. My primary ordered blood work- liver levels are creeping up, so he ordered and ultrasound of all internal organs including liver. 1 week later after several calls to his office, the nurse read me what he noted from the radiologist. they did not get a clear picture, so it was inconclusive. She said the doctor recommended to wait 3-6 months and do blood work again? I said excuse me? Wait? Really? I asked about another type of test or scan to be sure nothing else is going on.. she said, well he did mention a CT scan if you wanted, but we would have to get insurance approval.. ok so do it-- good grief, am I being over causious or is my doc on crack? Very nervous and stressed about this.
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Wow.. chatty bunch of ladies - we sure do talk a lot - I am not even going to try and respond to you all, but am thinking of you all.
Hi to the new ladies - sorry you are here, but really this site is so wonderful and calming. Wonderful, knowledgeable ladies here with great advice.
Hello and happy dancing for all those with good news.For those with maybe not such good news - thinking of you.
Hope you are all managing to have good days with minimal SE's, able to keep cool or warm, wherever you are in the world and making lots of memories with smiles.0 -
Good morning ladies! Rainy day in Houston today! The power went out in my building and after 1.5 hours they sent us home to work. So walked down 12 flights of stairs and now home. I think my legs will be sore tomorrow!
Cocker, I think I will start Rads in 2 weeks, I live about 30 mins from the hospital so will just be driving back and forth daily. At least they have free parking!
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Lory48---I'd be an emotional mess, too. That really does make you wonder about the doc. You'll have to be your own strong advocate. Best wishes to you as you face this new challange.
My frustration today is nothing like our f'n BC, but I was just setting up to make more peach jam, and lo and behold, 10 pounds of sugar infested with ants! I live a half-hour from a grocery store and it's hot outside. Guess I'll just shove those peaches back in the fridge. I've got to collect myself before I figure out what to do.
Speaking of heat, it was 101 in Yosemite yesterday. Plan your trip to my paradise accordingly. I think I just might pack up and go see Annie and her ol feller. Cold sounds good right now. By the way, we can see several families of "teenage" quail. So fun to watch the babies grow.
For all of you who are new to this site, welcome. If I may say, we are an inspiring and helpful band of women. Hang in there while we reach out to you. Jan Now back to those peaches.
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Beccad,
Prochlorperazine suppositories! 25 mg. they will knock you out but they will also KO the nausea. I also took sublingual Zophran, it dissolves in the mouth so you don't have to worry about throwing it up. Teaspoons of H2O. Once you are at dry heaves your stomach is so sensitive it can't take any more than tsps. So sorry you are going through this. Call your onco, too. As you know, those chemo nurses are amazing. Praying things improve quickly for you.
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Annie,
Nope - NO NAUSEA!!!!!!!!!!!!!
The biggest issue is keeping your skin from burning and drying out. I did very well, until 3 days before the end of my 6 weeks. My underarm was dark beet-red at that point, and broke in a couple spots. Ouch. They gave me a salve - Silvadene (sp?) which healed it within the week. Then the peeling started. It is like a sunburn. Just keep moisturizing! Wear something soft if you can, for comfort. I was home alone, so I shed the bra and form, and wore just a soft tank top. Of course, the other gal complained "Hey - I need a little support, you know!!!" Oh well, gravity rules, in the end. Once I healed and peeled, I had a baby bottom pink underarm. So far, I only have to shave half of that armpit - weird!
I was given Medline Remedy with Olivamine Skin Repair Cream by my nurses, both chemo and rads. It worked so well for me, that I have bought it for myself, now that I am post-active tx.
It's good that you are going to give your hands a break for those 6 weeks. I had hand problems during A/C - caused by ME. Someone plugged the toilet (who, me???!!!), and decided to be self-sufficient and go at it with the plunger. Stupid. All that pressure on my hands caused them to turn bright red and become very painful. Then they started peeling - not in flakes (like with rads), but in chunks, several skin layer chunks. It was so bad, that I couldn't open my Christmas presents, and in fact, had asked for a letter opener - it became my most cherished gift! I was given the Remedy cream by my chemo nurse, and I could see a huge difference overnight. I swear by it.
Moral of the story...moisturize well, keep a plunger handy, but also someone ELSE to work it, and when they suggest taking a stool softener for constipation - TAKE IT!!!!!!!!!!!!
But I digress... Nope, Annie - NO NAUSEA!!! The biggest problem you'll have is missing your old fella for those 6 weeks!
~ Shar ( 5.5 mos post-chemo/3.5 mos post-rads and active BC tx)
P.S. Changed my avatar, because I have my own crazy hair, now!!!
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Jan,
You must have Air conditioning. I don't, so I freeze my peaches etc. and make jam when it is cool outside. I read years ago, that freezing the fruit changes the cel structure and releases the fructose more efficiently so the jam is sweeter. I don't know if this is true but I like the way it sounds since it adds credence to my not wanting to heat up my house by cooking jam in the summer! Now, with chemo induced hot flashes, I don't want to cook anything! My poor family. Lol
Do you have any photos of those quail? Sounds wonderful.
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Spica, love your hair! Kinda jealous! How long did it take you to grow it? Mine is still military short, plus not much brows or lashes. Last chemo was May 7 th, so hopefully my hair will really kick in soon. The hair on my legs sure has;(
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Jan69,
They're calling for 104 today up here in eastern Oregon/western Idaho. I'm hibernating until September!
I only go outside in the evening, to water the garden. Of course, that's prime mosquito time, and they are warning about West Nile again, this summer. So it's pile on the insect repellant and be sticky, icky in the heat. Yuck!
I caught myself whistling the other day, when I was picking up the dog poo in the yard, after watering the garden. That struck me as humerous and WONDERFUL...because it was part of my pre-BC "normal" life!!!
Isn't it nice when we can get to the point where we complain about the weather, ants, mosquitoes, dog piles and all the other non-BC related irritations in life???!!! Hell-yeah!!!!!!!!!!!!
~ Shar
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Jan69,
They're calling for 104 today up here in eastern Oregon/western Idaho. I'm hibernating until September!
I only go outside in the evening, to water the garden. Of course, that's prime mosquito time, and they are warning about West Nile again, this summer. So it's pile on the insect repellant and be sticky, icky in the heat. Yuck!
I caught myself whistling the other day, when I was picking up the dog poo in the yard, after watering the garden. That struck me as humerous and WONDERFUL...because it was part of my pre-BC "normal" life!!!
Isn't it nice when we can get to the point where we complain about the weather, ants, mosquitoes, dog piles and all the other non-BC related irritations in life???!!! Hell-yeah!!!!!!!!!!!!
~ Shar
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Thanks everyone for the welcome and the calming advice. It is great to see so many are survivors out there. I did look at the internet but am being soothed by the fact the many of you are saying don't.
Since a couple of you asked I got the name Tookybum from my brother who is 13 years my senior. My mother was very ill when she had me and didn't come out of the hospital until I was 3 months old. So it fell to my brother and sister to watch me while my father was farming. My brother said to my sister one day it was impossible "to keep her bum" clean. Hense the nickname. He still calls me it even though I am 41 years old!
I have my MO tomorrow afternoon so hopefully I will have more of a sense of direction going into the weekend.
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Gemmy,
That pic is this week @ 5.5 mos post-chemo.
My hair actually started growing back during the end of Taxol. I could feel nubbins, but couldn't see anything. I was convinced that it was coming back transparent! Then a shadow finally appeared, and from there it took off.
I lost my eyebrows and lashes at the same time. My eyebrows came back thick and dark, but have now lightened up. I had a lot of white before, and unfortunately, they look like they will be back to white, crazy old-man eyebrows once again. My lashes suddenly started growing - looked like I had eyeliner on one day, because they were very short, but even. Then they started lengthening. Oh no - noticed this week they are back to short again. I've heard that they can cycle through this growth/loss several times before they decide to stay put permanently.
I am shocked that my hair is so thick, now. I hope that stays. I was starting to thin in the front, pre-BC, just like my Mom and Grandma, so this has been wonderful!
My hair - all of it, everywhere - came back so dark. I was born with very dark hair, but turned mousey-brown later in life. It is like I went through infancy and grew back to adulthood with my hair! All my white pre-BC hair is back, now (No - that's not highlighting, just old white hair!!!) And it is straight - as before BC. Just swirly from the noticeable growth pattern.
Landscaping time - all the "bad" hair is back and flourishing - vacation is over. Oregon is famous for the Sasquatch/Big Foot...there goes I without tweezing and shaving!
Hang in there, Gemmy...your turn is coming!
~ Shar
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New TN here dx on 6/7/12 one month after my 42 birthday. I start chemo next week (7/17/12). The plan is 6 rounds of cytoxan and taxotere every 3 weeks followed by total mx both sides. Hopefully, I will not need any radiation. I too had a clean mamagram within the year but found a lump my self, it measures 1.9 cm. My grandmother and mother had breast cancer. Not sure what kind grandmom had but my moms was totally different it was something like" calificatios" at the age of 50. She had a mx on the one side no chemo or radiation and that was 17 years ago and she is fine. I tried to argue with the doctor that I did not need chemo but they said without chemo I would not be here in 5 years. I did have the genetic testing done and it came back negative, so I guess that is some good news.
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At the end of the tax year, the tax office sent an inspector to audit the books of a local hospital. While the officer was checking the books, he turned to the CFO of the hospital and said,? "I notice you buy a lot of bandages. What do you do with the end of the roll when there's too little left to be of any use?"
Good question," noted the CFO. "We save them up and send them back to the bandage company and every once in a while, they send us a free roll."
"Oh," replied the auditor, somewhat disappointed that his unusual question had a practical answer. But on he went, in his obnoxious way. "What about all these plaster purchases? What do you do with what's left over after setting a cast on a patient?" Ah, yes," replied the CFO, realising that the inspector was trying to trap him with an unanswerable question. "We save it and send it back to the manufacturer and every so often they will send us a free bag of plaster."
"I see," replied the auditor, thinking hard about how he could
fluster the know-it-all CFO. "Well," he went on, "What do you do with all the remains from the circumcision surgeries?"
Here, too, we do not waste," answered the CFO. "What we do is save all the little foreskins and send them to the tax office, and about once a year they send us a complete prick."0 -
Check out Ann Hathaway's cute new pixie cut. She had to cut it for her role in Les Miserables. By the way, she said she cried when it was cut! Now I feel like my hair is really long!!!
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Good grief, I made that a whole lot smaller in my draft and it came out so big!!!
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Isn't she the cutest eh? I will be so happy when my hair is that 'long'
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me too! Wonder how long that will take?! Oh well, nothing I can do but wait!
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Tazzy - I have the hair...but how do I go about getting her face???!!!
Oh, well ~ Shar
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I met one of your triple negative sisters on Friday. I am triple positive. I noticed a woman my age (40's) she had a drugged deer in the headlights look (from chemo THEN surgery) still had drains in.
Her sister was with her and was telling me she was triple negative and going into a depression. I directed her this way and told her what a good sisterhood there is amongst those who share similar diagnoses. I sure hope she comes here. Her sister thought it would be good for her. If it was you who I talked to at the Mayo in Phoenix and you live in NM, message me. I didnt get your email address but sure wanted to help in anyway I could.
I know you will all make her welcome when she decides to come here.
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Nora az,
I had that drugged deer in the headlights look for four months after dx and chemo. Occasionally still feel that way.
Love that photo of Anne Hathaway w/ pixie cut, can't wait for my hair to be that long. On my head that is, the leg hair seems to be growing just fine, have to shave it daily.
Browerl, we are the same age at dx. Never thought in a million years I'd be dealing with BC at 42. I bet you didn't either. Sorry you have to go through this. This is the place to get info and support and cheer. Wish I would have joined sooner.
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Gemmy1, agreed I never thought of bc this early even with a family history. I wish I was further along in my treatment like you, my jouney is just beginning.
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Spica - I hear ya. I used to take pictures of celebs to my hairdresser for their haircuts... just thinking that I may walk out looking just a little similar.. yeah no such luck. I think your hair looks fab.
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