Calling all TNs
Comments
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I am always happy to see people who have beaten TNBC come back on this site and post their updates so those of us who are just dealing with it see that there are survivors (and many of them). It must not be too easy for those who have gotten on with their lives to think about coming back to these forums as I'm sure they just want to put the experience behind them. But we need them - to hear their success stories. I just stumbled across one tonight that I thought might be worth mentioning. For anyone who needs to know that there are many long term survivors of TNBC, check out this chat room 26 YEAR SURVIVOR HERE (in forum Triple Negative). And don't forget to get out there and live each and every day!
Doreen
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Hi Ladies
LRM - wonderful to hear from you again and good to hear you are doing well and your energy is keeping up with you. Sending a big hug.
Fishinurse - with your treatments, appointments and tests going on plus your need to rest you won't have time to think about that jerk. If he aint made of sterner stuff, then he aint no good for you. You need someone with a bit more backbone that won't run at the first sign of trouble, but rest assured that chap will come along for you. May even be a doctor!! Yes financially its a burden but take the time to rest as much as you can and think of yourself.
Kath - you sure sucked me right in. I always have been gullible. You bugger. I even told that chap that lives two feet away from you to watch out cause there's more to her than meets the eye. I said she will try and hoodwink you at the casino table. He said he'd keep an eye open lol. No seriously I have never seen two more fabulous looking ladies. Now I know what you both look like. I must say I agree with you over Luv she looks just like she is dynamite in a small package and of course up to no good. A wonderful surprise.
OBXK - will send a photo when cafe is ready. No signs up yet though. I'm so glad you have the energy to live a normal life. You just enjoy your trips but don't stay away too long. You say you have had cancer twice, did it come back in the same breast? And how comes they gave you chemo twice, I thought you could only have it once.
Brower1 - onvacation is right the anticipation is worse and its not as bad as you imagine. Drink lots the day before hand and for the next few days, take stool softeners the day before as well. The constipation was the worst for me but once I got that under control it wasn't too bad. Keep up your veges and fruit. Take meds even though you might think you don't need them and rest when you can. Weight wasn't an issue for me, I didn't put any on thank goodness just lost a bit. Keep up with your food as much as you can cause it will help your tummy but keep away from spicy food if you suffer with heartburn.
Tookybum - yes you will be scared but there's no need to be. The ladies are right it is doable. You will be fine. I used Dove products like Karen did to. The Cancer Society here recommends them because they are gentle.
Well ladies I went to the doctors to get some cream for my hands and he gave me two lots to try and see which was better. When I was in bed I used one cream, slathered it on as usual and went to sleep. In the morning low and behold beside my bed was two chewed up boxes and two chewed up tubes of cream with little holes in that was oozing cream. I jumped out of bed (I can jump when I'm mad) and shouted at the culprit who proceeded to sit there and shake. I'm sure if she didn't shake I could wack the little shit. So now I have two tubes with half the creams gone and no boxes to put them in. I'm sure Karen doesn't have this much trouble with her Augie. On the good side although I still have the rash they haven't itched since. On top of that the cat played up as well. I kept him in, in case he got cold. He stood on the radio alarm until it started to play at ten past two in the morning, he knocked over the old fellars special glass with his teeth in and they were found on the floor complete with the fluid and he knocked off his glasses. So I might put them both out tonight. They are worse than my girls ever were of a night. Bloody critters.
Oh well. It's dinner time. Better go and eat it might take my mind of the pair of them.
Have a good day. Keep well (and warm). Annie
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Annie, that is hysterical, about your cats.
Jan, I peel the peaches and quarter them, put into gallon ziplock freezer bag, label and freeze. When I defrost ( in fridge) they break down, further breakdown when cooking so no need to chop up! It's easier and they always have beautiful color in the jar. Drove by farmers market today and the peaches are coming in! Early this year.
Ladies starting chemo,
constipation is miserable. I took and still take a probiotic capsule. I also drank kefir and ate yogurt. Sounds a bit over board but I had issues w/ chemo. Lost nine lbs. the first week! I trained for my first triathlon for none months and lost only five lbs. so chemo did a number on me. I don't think most people react that badly. When i went in the next day for my Nuelasta shot, The chemo nurse asked me if I had taken anything before treatment... I said "do you mean like CRACK? Sign me up"
If you do feel poorly, go in for I'VE fluids. I had them with every Nuelasta shot. I went in three times/ week sometimes for I'V fluids. It helped a lot.
Nuelasta has a program that offers financial assistance. Somehow pays part of your insurance deductible. Ask about it, it's not a need based program.
Nuelasta did cause me a lot of pain and I have heard that from many ladies who have had it. Some take Vicodin for the pain. I found that doing gentle yoga, stretching and forward bend yoga poses helped me to keep that pain away. If you want additional info on that I can recommend a great yoga DVD.
One other crack pot idea for chemo: when I had Taxotere, I iced my hands and feet to prevent neuropathy. The chemo nurses rolled their eyes at me but it worked!
I also saw an acupuncturist after every chemo and it helped Tremendously!
Now you all think I'm some kind of tree hugging Boulder hippy, but I'm really a very high maintenance kind of girl. I even shave my legs daily. Lol
My prayers are with you all,
T0 -
I just cannot resist these beautiful little babies they are so lovely. Actually this one looks as if its going to pee on the bed any minute.
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Gemmy1 Thanks for peach tip. I've always wanted to freeze the peaches, but worried they would brown and not be that lovely peach color. I'm out of town most of next week, but I'll get to it when I get a chance. Jan
Annie Love that kitten picture! Those other animals that live in your house, not so much.
Browerl I got Neulasta shot in tummy. I had no pain afterwards, but it seems most people do.
It's a beautiful cool morning here, sitting on front porch sipping coffee. Cheers! Jan
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Jan - go to the hardware store and get Terro Ant Poison (I know Home Depot and Ace have it). Take a bunch of bottle caps (soda bottle, water bottles, etc) and pour a iittle in each cap and hide around the the house. ( if you have dogs, hid in places they can't get to like behind the stove and in cabinets. If you have
cats, you can't hide anything from those little sh*ts!). It's a solution of sugar and poison
that they eat and take back to the nest. I had an ant invasion 2 years ago, and this finally took care of the problem. If you're easily amused, there's another tip I tripped over by accident. I left a glass in the sink with some rum and coke in it. When I came out the next morning a whole bunch of them had gotten drunk and drowned in it!
Cocker - don't waste your time warning back door guy. He's played poker with me......he already knows I'm evil. I'm starting to think your wee little friend needs a muzzle. Cocker
(I think you're the one who asked) you can have chemo many times, but there are lifetime limits on many of the drugs. You can only have radiation to a specific area once.
For the ladies just starting, my tips are similar.
1. Hydrate!! The day before and for at least 3 days after a minimum of 96 ounces of fluid. (I put mine in seperate jugs, to remind me how much I needed to finish.
2. Take your nausea meds as ordered, in fact get up during the night and take them. I was very lucky, only had to take the daily Emend I was sent home with. Only got quesy once the whole time.
3. This tip came from someone else one here, and I know it sounds counterintuitive, but eat something small every couple hours. You're more apt to ger nausea if your stomach is empty. (like I said, never got sick.
4. The Neulasta Tip: (ask your doctor's permission). Neulasta causes bone pain. Many MO's are recommending the following: Claritan 24 hr (not the D version, you don't need the decongestant), Zantac 150 mg, and 2 Tylenol or Ibuprofen. You take it the morning of the shot, and for 2 days after. They have no idea how it works, but for some people it does. (had no bone pain whatsoever)
Fishinurse - it's quiet on here this weekend, but someone will come along with info on SSI disability. (several people on here had applied for and gotten it)
OBXK -Please let me know when you're going to be up this way. Would love to meet you.0 -
Kathy Thanks for the ant tip. I'll get right on it. We're going to be away most of the week, and by the time we get back, they could have carried away the kitchen. For many years my secret reciepe worked, but not this year. It is boric acid mixed with green mint jelly. They'd crawl over each other to get at it. You might have to sign for boric acid in the pharmacy and I've never had any luck with red jelly. I especially like your bottle cap idea. Here's to a wonderful Sunday afternoon. Jan
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A boy asks his granny: "Have you seen my pills, they were labeled LSD?"
Granny replies: "Screw the pills, have you seen the dragons in the kitchen?!"
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Fishinurse - go to the main menu, select Search option, then type Social Security Questions and Answers. There seems to be some good info there.
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Well hello ladies, haven`t you just been a chatty lot. I will never get to respond to you all and so will not even try.
To all the new ladies - welcome. Wonderful advice re: chemo and SE`s - listen to them all and find what works for you. If you have pain, take painkillers - this is not time to be a hero.
Just want to say to fishinurse and to reiterate what the others have said.... That jerk of an ex doesn`t deserve to breathe the same air as you... good riddance and good bye. This is about you honey. And the best ones always come along when you are least expecting it.
Bernie - the jokes are hilarious.
We had a great weekend at my DH`s company bbq yesterday - pleased that the weather was perfect, not too hot or sunny. Today just chilling and resting up - been a busy week and I still have aches.
To everyone else, hello and thinking of you all. Really love reading about all your experiences and how strong you all are and how strong we make each other.
Take care xx0 -
Wow thats a lot of water. Does anyone on here drink that much?
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CS - that is a lot of water. I do drink a lot of water myself. Always have because I don't like soda. Thank goodness I love water.
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Am I the only one who didn't have constipation, but diarrhea? It always hit me about day 5 after TX. Immodium was my best friend. I had to cancel my first appt. with the genetics doctor because I was afraid to leave the house! My best wishes to all those starting or having another treatment.
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Had a great day! My younger sister picked me up to take me for a drive since I start chemo tomorrow. We ended up going to the lake-dipped out toes in the water-walked on the shore and watched her daughter collected rocks and had ice cream-also had pizza. Life is good
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Inmate, Keep on working that new normal. Sounds like you are putting energy into each day, and that is so healthy. I'm sorry about the damn skin mets. I'm thinking about you.
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fishinurse, sadly it is not uncommon for men to leave when a women gets a breast cancer dx. There are many women on these boards, including me, who have been abandoned by men when we thought we needed them the most. I have no words of wisdom for you. But for now, just look after yourself. There are many supportive women on these boards who will help you get through treatment.
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fishinurse-you start chemo tomorrow and I start Tuesday, sorry we have to do it all but at least we do have people on here to talk to about it.
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fishinurse and browerl...we are with you every step of the way. The first is the scariest because it is the unkown. In just a few short months you will be coming here to encourage the next round of ladies starting treatment. It will go by so fast and before you know it you will be back on with your life. One step at a time. Be sure to join the current Chemo gals in the thread for starting this month. That way you can also compare notes with other ladies in active treatment too. Ask anything, nothing is off limits, and you will get the answers you need. Take care and may the SE be minimal
Maggie
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Good luck to those starting chemo! I must say these boards and the wonderful ladies on here got me through chemo - don't think I could have done it with out them. So come her often, ask questions, vent or have a laugh! We are here for you!
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You ladies crack me up..I love coming on here and reading these posts...Cocker..I still swear I can hear your voice when you post...whenever we meet up I will absolutely know you immediately...when do you start rads?
Hope...how are things? Any news?
OBX..been meaning to ask you if you had heard on the news about a missing woman from Ohio who went missing in Hatteras? The woman is from Ohio...seems like her boyfriend possibly strangled her while on vacation on the Outer Banks...
Browers...they never told me about the neulasta until my first chemo..then they told me to come in for a shot...I had some pain from it in my shoulders, collar bone and hip bones.. the neulasta keeps your white blood cell count up to a normal level...its possible that you may not have to have it since your treatments are 3 weeks apart..mine were 2 weeks so I guess I needed it..blah...
Oh..and I did win a little at the casino....my son took my DH and I ...he such a good kid but I hope we don't get him into a gambling problem..lol
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Brower and Fishinures - The first one is the scariest. I have #3 on Tuesday, and although it sucks to have to be here at all, the fear of the treatment itself is gone.... When I was scared out of my mind before the first one on June 19, someone wrote (I don't recall who?) that when they got home they kept waiting for something to happen, and other than a little foggy head, nothing did..... they were spot on! I did exactly what the gals told me to do, hydrate, hydrate and hydrate some more!
To all who helped me get over the bald issue, a huge thanks! Borntosurvive, the visual of you holding your baby's hands while your husband shaved your head was touching....beautiful!! Late Friday night after reading all of the encouraging posts, my Hubby grabbed the clippers and buzzed away what patches I had left. You were all spot on as usual, we laughed, I cried, then we laughed some more and all the weirdness is gone now! The only time I covered my head this weekend was when we went out. Thanks again for being so helpful and supportive. Also, my cold is much better yippee!
Titan - you gave me Casino fever! We went to the Casino Saturday and hit an $800 win on a slot machine! Fun, fun fun, day! Got there early before it got busy and smokey. Tons of fun! Hope you did well also.
Bernie - Is that a Mastiff Puppy? I am a HUGE dog lover :-). Yours are soooo cute!
Have a great week everyone. Hugs to all!
Shannon0 -
Bernie love the Mastiff puppy pic. I have a 2 year old mastiff and would love to share the pic but I don't know how to get it on here.
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Wanted to add to a few more things for the newbies. They have Organic head to toe body wash and lotions in the baby section. Good old Johnson & Johnson all natural products seem to be working nicely on my skin, including my head!
To help prevent mouth sores, Biotine tooth paste and mouth wash. Also, a soft bristle brush is best. Watermelon is really great snack food, high water content and easy on the gums! Got these points from this board also!
Hugs!0 -
Hi everyone! I had a few minutes to read through everyone's posts and wanted to make a few comments about going through chemo.
CS - yes, I drank 96 ounces of something each and every day for the 4 months I was on chemo. That includes juicy fruits, veggies, tea, coffee, water, whatever tastes good. I think it helped minimize SEs.
I would NOT recommend taking something for constipation in advance of your first treatment. Like Tif, I never had a problem with constipation, and leaned more in the other direction. Taking a stool softener could cause explosive diarrhea and dehydrate you if you happen to be like me.
I agree about eating small amounts frequently to ward off nausea. Think of chemo as a bit like morning sickness (for anyone whose been pregnant, you know what I mean). Hunger is a bad thing.
If you are given Emend, take it as directed (usually one as a pre-med then one each day after chemo for two days). It's a wonder drug, really. If it's not offered to you, ask for it. If you have a tendency to get seasick, or if you tend to have reactions from anesthesia, ask for the scopolamine patch. You apply it right before chemo and take it off after four days. Works like a charm. It's the patch you'll see people wearing on cruises.
Whatever you do, don't suffer silently. There is a med for every SE except hair loss and fatigue. Tell your chemo nurse or oncologist if you are struggling. This is not the time to "tough it out."
And good luck to those of you just starting the chemo journey. It really will go faster than you think.
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Loretta - I'm laughing because I spent about 2 hours today trying to figure out how to upload pictures only to find out my version of iPad does not support it!! I will have to use my home PC for pic sharin.... Love Mastiff's! We have 2 very large Akitas! Nothing like a dogs welcome home dance!
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I did it! this is my baby Rocko I will put up a better pic but this one is my favorite he was laying upside down when I snapped this picture.
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Here is my baby a 2 year old bull mastiff "Rocko"
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Ladies, thanks again, for all the conversations. Love the support, laughs, hints that each of you brings. This week has been hard for me. Battling the 'why me's". Apologizing in advance for what may be a long post.
Last Sunday spent in ER, literally. 10:30P-5:00AM. Cancer card got us a private waiting room, to avoid all the germs. I had swollen hard lump on my cheek, next to ear. When I started running fever, and redness ensued, on-call MO, said go to ER. turns out the parotid gland was infected. Had dangerously low potassium, also. Diagnostic CT also showed enlarged thyroid. IV antibiotics, and 10 day Rx. My MO said they would give me names of endocrinologists for enlarged thyroid at next appt. But my PCP called after seeing ER report, and sent me for ultrasound. Had that on Wed. Primary called , said found mass on parathyroid, and nodules on thyroid, and that I should see recommended endocrinologist within 2 weeks. They can't see me til 30th. When I called my MO, they didnt seem concerned. I have my consult with the MO, on Tues, before my first Taxotere. Feeling like my fears were not addressed by my MO. Obviously, there will be some discussion at my appt. BS surgeon was highly optimistic, saying, they 'got it all' from breast. Since it appeared that my tumor was much larger at surgery, than MRI showed 2 weeks earlier, my mind is going to the "aggressive nature" of TN. So hard for me, not to assume those 3 positive nodes spread cells everywhere.
Hair-- still have stubble, a few longer hairs showing up, assuming Taxotere will cause hair on my head, eyebrows, and lashes to go, again.
Feeling really down, and thinking the 3 FEC tx's haven't done their job, and my suffering these SE's have been for naught.
Sorry for the long rant, I just had to unload a bit. I hate unburdening on my DH, he is wonderful, but doesn't like to hear my negative thoughts.
Thanks, for listening.
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Joyce - So sorry you are feeling so poorly...... Since I am new to this cr@p, all I can say is that I hope whatever is going on clears quickly, and that you find comfort and peace soon. Huge hugs....
Loretta - I think I dribbled laughing so hard and Rocko's goofy picture! How freakin' cute is that! He is a very Handsome big boy! My husband and I opted for 4 legged kids, so thank you for sharing these! Thanks for the smile :-)
Shannon0 -
Joyce,
Try not to worry, that is what Xanex or Ativan are for.
I have a wonderful friend who helped me get through treatment. She survived BC when our kids were in kindergarten together. She has BMX, chemo, rads the whole nine yards. Then she went through treatment for thyroid cancer! they found her third cancer at the same time as her BC but waited to treat it til after they treated the BC.
I am not jumping to conclusions, YOU have not been diagnosed with anything.
What I can tell you is my friend is fine! She is healthy and one incredible lady. I thank God for her help every day. She told me that the treatment for thyroid cancer was way easier than BC.
I hope this helps you and doesn't get you more upset. I will be praying for you.
T0
