Calling all TNs
Comments
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Welcome Yananma!
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Welcome Yan...Luv has great advice (as always). I would say to trust your team, surrender the need to control and just take it one step at a time. The journey is long and seems like it may never end, but the end of treatment is real amd you WILL get there. Lean on us......we all understand. Be kind to yourself and you'll do great xo
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Great advice coming from you ladies as usual which will certainly help to put the newbies at ease and help with all their worries about chemo etc. as it did me.
LUV you would love New Zealand at the moment. Its lovely and warm but not bakingly so yet and is so pretty in the spring but don't talk about a bucket list. None of us is going to need one of those for years yet, just make it a plan or a dream then you will do it. So sorry you have to go and have a port put back in. I really don't think I have ever hated anything in my life until all of the ladies on here and myself got cancer. It just sux big time.
Welcome Yan. Yes unfortunately bad timing for your new job but hopefully you have a kind and understanding new employer. You will do fine as we all have done but you are very welcome to rant, cry, swear and anything else at the unjustice of this. Everyone of us will hold your hand through the ups and downs and you will be surprised at how quick the time goes. Just hang in there girl you will make it.
Not long to Christmas ladies. I love this time of year and its especially nice this year as I didn't think I would be here. Hopefully Santa will call on me again and bring me some extra special chokkies to eat.
Annie
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Welcome Yananma! Happy birthday too. You've already received great advice!
I have two more chemos left and then BMX end of January. I just take one day at a time! Every day is different whether I feel ok or I'm an emotional wreck. I have been able to work during chemo but know what my limits are. Really listen to your body and it will tell you when you need to rest!
Good luck to you. You will do just fine!
Erin0 -
Wishing everyone a Happy December. I haven't been here much but have been catching up on posts tonight.
Wanted to show you one of my Solstice Cards. I keep on drawing and painting.
I see the radiation oncologist Thursday. It will be my one year follow up. Time actually moves forward.
My best to everyone here.
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Hi everyone. My hair was always straight - grew back curly and wiry I looked like a fox terrier. I hated it so I had it shaved again and now is growing back normal.
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Bernie - what an adorable pooch!!!
Annie (and everyone) - when I mention bucket lists, it's because I am stage IV and I can't deny it. The prognosis for me is not good, especially now that I've had brain mets. I will see my oncologist on Wednesday to decide on chemo (probably carboplatin and gemzar) and I will also see my surgeon to make a date for a new port. I am doing everything I can to fight this f'ing beast, but right now I'm on the losing end. I need a miracle, a serious medical breakthrough. It's scary at this point to think that I may not be here at this time next year - the average survival once you have brain mets is just one year. Nothing about my cancer has been average, it's been screamingly aggressive. I am trying to make plans for living life in 3-6 month increments so that I have things to look forward to. I am hopeful and I won't give up the fight. Despite giving it my all, I may not win as the odds are stacked against me.
I'm not looking for sympathy, just your understanding of the reality of my situation. My husband has this on his bucket list and I'd love to be well enough to go with him; and if the carbo/gemzar works, we may be able to pull it off.
We haven't heard from Inmate (Dawn) and I suspect she's going through a journey similar to mine. I hope I'm wrong, but she is also Stage IV and had radiation for brain mets. It would be wonderful to hear from her or one of her friends to know how she is doing and to let her know we are all keeping her in our thoughts and prayers. I hope someone can shed some light.
Thanks for undertanding.
Hugs to all,
Michelle
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Sharing Ladies...
So I take a baby aspirin since it was highly talked about for breast cancer patients. Note I have been taking baby aspirins since being dx'ed so let's say roughly about 2 years straight. So here is the result, I am now anemic and I am loosing blood. So this is just a caution post take it easy with the vitamins and suggestions. This problem was only caught because I had a hemorriod(?) flare up.
I am off to the ONC later today to get my blood drawn and check my numbers again. I will keep you ladies posted. I think we discussed this many pages back about balance with the vitamins and all. I don't want to sound cocky but once i get closer to the three year mark I think I am going to take one good quality vitamin and just increase my fruits and vegatables. My thoughts ladies.
Hugs and smiles to all.
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Speaking of hair, mine was always curly, and it has come back the same way... I was hoping for straight. It is coming back gray because of my age and is only about 3 inches long even though it has 7.5 months since chemo. It used to grow fast but seems to be snail's pace now. It is sticking up and curling all over the place and looks horrible. I may take the advise of a straightening iron because I cannot seem to control it.
Luv, hoping you get that trip and agree, it would be nice to get an update on Dawn.
Fighter, thanks for the tip. I also started taking a baby aspirin a day so will be extra vigilent.
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Luv, what a very moving post. Your words are so thoughtful. I hope you get to take that trip.
Was feeling a bit blue this morning and then my phone rang and it was navyson. We were able to skype for about 20 minutes. He looks exhausted. Says he is working 14 hours a day and still has not recovered from jetlag. It was so good to see and talk to him. And now I feel better. Even put on soe make up after my shower and fixed my hair.
Ring, Ring.....calling Dawn, Hope 60, mcrimmon, lovely face and all others who haven't checked in lately.....you know who you are.
Welcome to the new gals.
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Navymom - hugs!
Luv - I hear you! I'm doing 6 months at a time. I am on gemzar/carbo. Here's a tip - start taking Miralax, the day before treatment - stay on it for the first few days or so. The gemzar gives me muscle spasms - wish I had
known that was a SE - it alarmed me when my uterine wall started hurting. I hope it keeps your FC at bay!0 -
Thanks, OBXK, for the tip. I'll have to wait and see how it goes, though. Metformin has that laxative effect on me already!
Navymom - so glad you got to "see" your son, Skype is a wonderful thing!
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Luv - you're amazing. You can't leave any regrets as you move forward. Keep on keeping on.
I am friends with Inmate on facebook. Last she posted that she had her lung drained but also a friend posted after she had been to visit, so she's still getting out. She's likely busy with everything else. She knows we're thinking of her. As for the others, I don't know but I to wish we would hear something.
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Can I tell you ladies how much I appreciate the fact that tho we support each other so much we are also very realistic about tn? as much as we would like to say it's going to be fine..sometimes its not and we are all up front about this...we are all facing something scary here but we all face up to it and deal with it the best we can...just because I'm a few years out doesn't mean that I think I'm in the clear...coming on here keeps me grounded...
Fighter..about the vitamins..I know I need to give up some..I'm taking 10 per day for about 3 years now and am realizing that all of them can't be good...going to give some of them up but not sure which ones...I know to take d3 and calcium and a multi...but I hate to give up my folic acid, coqu10 and flaxseed...what to do....my numbers have been pretty good but I worry about my kidneys..and the possible bleeding in my stomach from all of this stuff
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I'm reading all our posts and realizing how amazingly strong we are! If we get knocked down by SE's or even not great news from our onc's , we just get back up and fight even harder!
Luv: you have such a great attitude. I bet you do get to go on that trip with your hubby!
Fighter and Catwhispurr...what is the baby aspirin suppose to do for cancer? I haven't heard of that before. Sometimes I feel my onc isn't very forthcoming on tips.0 -
It helps to be here with everyone. I appreciate the update on Dawn.
As to vitamins, I am doing the budwig diet with flax seed ground and flax oil as well as D3 4000 units and a B complex and a multivitamin. Could not handle the metformin- made my stomach a mess but I have been getting headaches and taking excedrin so I am probably getting too much aspirin. I did not know that was a recommendation.
Luv...you are amazing. I know how honest and direct everyone is here and I really appreciate that. I know you will face what you need to but I sure hope that whatever you do it kicks things back and gives you plenty of time for your bucket list. I want the best for you nd all of my sisters here.
I feel it is so important to be in the moment and appreciate every day. Have a friend with pancreatic cancer and a cousin in Nova Scotia with brain cancer but she is 16 months out after a 4% prognosis of being alive in a year and they actually think they have killed the cancer. But the surgery has taken away her motor skills on one side of her body and she is wheel chair bound at 56. Her husband is a doctor or she would have been on a list for an MRI that could have taken 6 months to happen.
And I am going to bitch, that hospital I started with sent me a $4110.00 bill for my MRI because someone forgot to put in a pre-auth. The hospital is appealing it but they said they will work out a payment plan with me if BC doesn't pay. I said they can work out a legal plan as it is their job to get the pre-auths. The error rate in hospital billing can be so stupidly high. More to come on that in January depending on which way the insurance company goes.
Happy Chanukah to all who celebrate. My this december is warm.
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Luv...I haven't been on in awhile but just wanted to let you know that I have followed you around for several months and wanted to tell you that you are such an inspiration. I know you will get to go on that trip.
Hugs!
Terry0 -
Hello ladies. I've been catching up tonight. I read all the news from San Antonio and agree that although a lot of emphasis is being placed on TN, answers aren't coming very fast and it just seems they are finding it is more complicated than originally thought.
My second AC treatment is tomorrow. I'm hoping the changes they will make to anti-nausea meds will make a difference.
I've read a couple of articles on chemo hair loss that said many times hair initially comes in different but will eventually be the way it was before. And speaking of hair loss -- I started shedding yesterday. No major loss just lots of loose hairs.0 -
Luv, Karen, I tip my hat to you. You're amazing. I have complete admiration and respect for you both.
Given your situations, I feel a bit flimsy asking this, but wanted to hear from the group about managing worry. Having just finished chemo (on to rads in January) I'm approaching that post treatment phase and having to try to get on with life in the "new normal" circumstances. How do all of you who are post treatment contain the worry about the Cancer returning? Academically, I've already thought a lot about this, and have assembled a check list of strategies to go through when I feel the anxiety creeping up on me. But it's difficult to be rational at four in the morning and when I let myself start thinking about the "what ifs" I can already see how the fear could start to take over. How do all of you deal with this?
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For all you amazing ladies.
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Bernie - Beautiful!!!
Thank you all for your kind comments and words of encouragement, it means a lot to me.
EnglishRose - please don't ever feel bad about discussisng your worries and fears here. That's why we are here! I know many women use anti-depressants or ativan when fear and doubt take over their thoughts. For me, a chemically-induced good night's sleep is my solution - a big nod to temazepam (restoril). My mantra - better living (and sleeping) through pharmaceuticals...LOL!
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Irish Superstitions for the Christmas Season
by Bridget Haggerty
Irish superstition said it was lucky to receive a Christmas card which pictured the Three Wise Men.
In the old days, children were usually charged with the responsibility of gathering the Yule-tide decorations and finding a holly bush loaded with berries was considered very lucky. Holly is a symbol commonly associated with Christmas and has been used in Yule-tide celebrations for almost two thousand years.
To the Druids, it was holly's evergreen nature that made it special. They believed that it remained green to help keep the earth beautiful when the other trees shed their leaves. It was also their custom to wear it in their hair when they ventured into the forests to watch the priests collecting mistletoe. Holly was also once used for protection, and in ancient times, people would decorate doors and windows with it, in hopes that it would capture, or at least dissuade, any evil spirits before they could enter the house.
In the Celtic language, Mistletoe means "All Heal." It was believed to have all sorts of miraculous qualities including the power of healing diseases, banning evil spirits, bringing good luck and bestowing great blessings. In fact, even enemies who happened to meet beneath a Mistletoe in the forest would lay down their arms, exchange a friendly greeting, and keep a truce until the following day. From this old custom grew the practice of suspending Mistletoe over a doorway or in a room as a token of good will and peace to all.
It was once believed that on Christmas Eve, an angel stands on every spike of the holly leaves. It was also said that the Good People would come in out of the cold to find shelter in the holly branches and that the mischief of the evil spirits was suspended for this Holy Night.
In the old days, people believed that animals celebrated the arrival of Christ and that the cows in the cattle-sheds and the deer in the forests went down on their knees at midnight. Others believed that animals were able to speak like humans on Christmas Eve - but it was bad luck to try and listen in!
The placing of a lighted candle in the window of a house on Christmas Eve is still practised today. Primarily it was, and still is, a symbol of welcome to Mary and Joseph as they travelled looking for shelter.
After evening meal, the kitchen table was again set and on it were placed a loaf of bread filled with caraway seeds and raisins, a pitcher of milk and a large lit candle. The door to the house was left unlatched so that Mary and Joseph, or any wandering traveller, could come in. It's also said that leaving a loaf of bread on the table will ensure bread for the coming year. And, you should also leave a bowl of water out to be blessed by the travellers - this water would be used for cures.
It was believed that the rooster would crow at unusual times, and to hear him crow at midnight was a good omen, as was a new moon. A clear star-filled sky would bring good crops in the summer, and shoes placed side by side would prevent a quarrel. For good health throughout the following year, you should eat an apple at the stroke of midnight.
There were also sinister superstitions associated with the eve of Christ's birth. If, when all were seated round the fire, one shadow on the wall behind them was headless, then the person who cast the shadow would be dead before the end of the year. Someone would also die if a hoop fell off a cask. If the principal candle goes out for some reason during the Christmas season, it is a bad omen - possibly the death of the head of the household.
It was commonly held in Ireland that the gates of Heaven open at midnight and those who die would go straight in. It was also believed that no prayer would go unanswered on this most holy of nights.
As for Christmas Day itself, according to an old verse,
"If Christmas Day on a Sunday fall
A troublesome Winter we shall have all."
It's said to be lucky to eat breakfast by candlelight on Christmas morning. You should eat plum pudding on Christmas to avoid losing a friend before next Christmas.
Refuse a mince pie at Christmas dinner and you will have bad luck for the coming day.
Drink three sips of salted water before Christmas dinner for good health - But on the second day after Christmas, abstain from meat to prevent fever.
Snow on Christmas means Easter will be green. A blowing wind on Christmas Day brings good luck - but, wearing new shoes will bring bad luck. And never turn a mattress - very bad luck for the turner! The child born on Christmas Day will have a special fortune and good luck will come to the home where a fire is kept burning throughout the Christmas season. To bring luck and blessings, you should take a wisp of straw from the nativity scene at the church and bring it home.
The weather on each of the twelve days of Christmas signifies what the weather will be on the appropriate month of the coming year. And, all decorations are traditionally taken down on Little Christmas or Twelfth Night - the feast of the Epiphany on January 6th. It is considered to be bad luck to take them down before then. Also, you shouldn't fix a leak in the roof during the twelve days - the leak will come back if you do!
The Gaelic greeting for 'Merry Christmas' is:
'Nollaig Shona Duit'
......which is pronounced as 'null-ig hun-a dit'.0 -
EnglishRose - It does get easier as time goes on. I agree with Luv - I take a 1mg ativan every night.
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English Rose - I tried to cope after all treatments were done but my worry was so great not knowing if I was cancer free (I had chemo/rads after surgery, not before, so I was left wondering). So, I used some symptoms I was worried about to ask the MO for a scan. He agreed and everything came back clear. I had to fight insurance a bit, but I think I would have paid it anyway just for the peace of mind. I know some others on here don't like scans, but I found that I now don't think as much about recurrance/spread after my clear scans. I also have had trouble sleeping for years and found it much harder to sleep these days, so I now take Trazadone at bedtime. It has really helped me get a good sleep and it doesn't have that drugged feeling in the morning. I see a therapist every few weeks too.
I know you will find something that will help you cope. Talk to your MO.
Hopex3: The baby aspirin is supposed to help keep cancer at bay because it has anti-inflamatory properties. I think I got the idea from the recommendations at tnbcfoundation.org.
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Luv...I have followed your post here and other threads as I always appreciated your words of wisdom since this all started for me last year. You are an amazing strong women who has helped so many of us here. Stay strong for this fight and we will be here with you through it all. Your candid approach is welcome also...we all know that could be our reality too. Hugs to you and here's to hoping you get that trip in with your hubby!
Maggie
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My hair fallout is getting worse today. Did anyone just let it fall out or did everyone go ahead and shave it? It's getting messy, but it's hard to get that razor out.
Second treatment today. Have a bit of headache and starting to feel a little nausea. They told me not to take my zofran until tomorrow because they gave me a full days worth in my iv today. They did say I could take phengran (not sure about spelling) so I think I will and go to bed.0 -
I always read the posts made by each of you, and do not post as much as I used to, unless whatever I have to say might truly be of help to someone. Having said that, I sadly welcome all the new gals always joining our thread, and wish each of you an uneventful smooth journey as you fight this beast we all have on our backs. For those fighting recurrences or progression, I wish you strength and fortitude, and please know that many wishes are being sent your way for nothing short of positive results.
Luv: You are in my thoughts always, such an amazing lady you are. Such an inspiration to all of us. If only I had a magic wand, I would be at your doorstep in a heartbeat.
Serenity to all of you, dear sisters.
Linda
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5thSib - once I could pull out my hair, like a shedding dog, I shaved it. It was just too messy! Once you shave it, I found it helped to wrap my pillow in a nylon half slip, to cause less friction when moving my head. Once your hair grows a bit, it's not a problem. It will grow back, before you know it. Hugs.
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I had my hubby shave it to avoid the mess too. Was an emotional morning amidst se's and starting my period too...blah..Hugs to you 5th My hair is growing in ok now and everyone love me with short hair!
Mags
obxk---you too are amazingly strong and inspirational
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Went to onco today. Pet scan showed a spot in my lymph node in my arm pit and one in my mammory chain behind my sternum. The radiology report stated the lump in my breast is9.5 cm! Doc can't believe its more than doubled in such a short time and is going to call the radiologist. Chemotherapy is going to start as soon as insurance approves. What does all this new information mean!!?? Doc said it doesn't change the current game plan. He is so kind. This all is such a shock. What next?? word metastatic disease was mentioned.
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