Calling all TNs
Comments
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Hi Tif, I will if I hear from her. I miss her coming to the boards, I know she has alot going on. She will probably come back when she feels like up to it.
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Christina, I think I will push for something, not sure what. He did mention putting me on herceptin, but don't know if insurance would pay for that as I am her 2 neg. I don't think I can get into a study with that one, I think my stage is too high. It's just I had so much time between chemo and rads I feel like some cells may have escaped and traveled, even though I had a complete response you never know where some cells might be hiding. I have to work on the sugar thing. I am so addicted. I also need to lose alot of weight. I was reading a paper on metabolic syndrome and triple neg cancer-I will post it. I haven't read the whole thing yet.
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BAK94 your post on metabolic syndrome is interesting. I have always taken lots of sugar in my coffee for instance and would not think twice about having 3 nearly four spoonfuls in my coffee. Just before I was diagnosed my GP told me I was borderline for diabetes. I also have high cholesterol and they are going to test me for the BRAC1 gene. I wonder ............ I also wonder where Metformin comes in as thats for diabetes. Annie
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CS - The steriods always made me sad and depressed on day 3 when I stopped taking them. I remember the 3 day after my first treatment I must have pee'd 20 times before it was time to get up in the morning. I retained so much water on them. By the end of treatment I would come home from work everyday and immediately lay down with my feet up because they were so swollen. Thankfully I never had the constipation but I ate a ton of fiber, figs, prunes thruout treatment. Just take one day at a time and you will get thru this!
Ladies, I took off 1 day and had to catch up on 4 pages!!
LJ - I absolutley love your landscaping. It's so peacefull and serene.
BAK - I say your stage 3 AND you had a 100% complete response, just keep focusing on the positives. I would definitely ask to see your last scan, I think it will help to get the other image out of your head. I'm a head in the sand kind of girl. Still too terrified to read my pathology report or find out what my recurrance rate is. I figure there is nothing I can do about it so why should I stress myself out and give myself anxiety. Try to eat healthy but have to get better at staying away from the treats and I've got exercise down pretty well.
Friday morning I went for some bloodwork for my physical coming up. I mentioned having had chemo, and the nurse said to me "that's fabulous, how long have you been cancer free?". It was the first time anyone had phrased it that way and it felt great!
Hopefully, the highlight of my week will be a lunchdate with hubby. He has a morning dr. appt and will drive up to my work (an hour away) to have lunch at this fabulous indian restaurant we found. I'm really looking forward to it. Just have to stay away from the Naan!!
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Bernie - I loved that pic!
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I had to be tapered off the steroids after round one. I had a huge crash at day three and the tapering for subsequent rounds really helped a lot.
Bernie - OMG that photo was hilarious!!
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Bak94 - thank you for the link. It's interesting because my BMI is 29 (almost obese). I need to drop about 35-40 lbs. I had gestational diabetes when I was pregant with my first. I always thought that if I didn't get my weight under control, I would get diabetes, not BC. This paper has affirmed even more for me that when I'm done my treatment, I need to do some serious life changes - especially with exercise - this is pulled from that paper:
While physical activity prior to diagnosis had no effect on breast cancer deaths across all patients, physical activity after diagnosis reduced breast cancer deaths by 34% and disease recurrence by 24%. Postdiagnosis exercise only provided significant benefits for patients with BMI ≥ 25 kg/m2.
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Good morning ladies. I have some catching up to do on posts but I first want to say
Cocker spaniel- has anyone told you about how important it is to drink lots of water. I was told that puffy ankles and feet can be a sign of something wrong with the kidneys. I don't want to alarm you but I suggest you call your onc and let them know. Everything is probably fine,
but please make the call just to be on the safe side. How does your urine look? Are you urinating regularly. Again, I don't mean to sound like a mother hen here, just concerned.
Heidi- that was so sweet of you to share the photos. Thanks to all of you for the sweet compliments on my landscaping.
I get to get another MRI on my shoulder and I'm pushing for a bonescan my tailbone has been hurting for the last month or so and now the pain is moving down to my left thigh and lower back. I'm hoping this pain I've had this weekend is from my neuprogen shot although I did take the claritin and Zantac before like I've done in the past.
Hope you all have a great day.
Laura0 -
I just spent the morning cooking Bacon & Liver treats for my two Boston Terriers and, like a good mother, I let them lick the bowl & beaters afterwards.
Heded to the porch now to spend time by the wood-stove with the pussies. Have to divide my time equally.
Tomorrow is a carriage driving day.
https://www.facebook.com/media/set/?set=a.3317824867812.159012.1333956826&type=1&l=02001f8c8c
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My house smells yummy! Just spent the morning cooking Bacon & Liver treats for the pups. And yes, I let them lick the beaters and bowl afterwards!
Headed out to the porch now to sit with the cats and read by the wood-stove.
Tomorrow is a carriage driving day.
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Oh, sitting by the wood stove sounds wonderful! I bet the cats love it. I have a cat on either side of me right now. Guess I am the heater for them.
Bak, thanks for posting the article! Very interesting- I am still confused about the benefit of exercise for triple negative but I know one onc I saw said minimum 3 hours a week and low fat diet is protective against recurrence. My local onc told me no sugar so I am trying - not sure if massive quantities of sugar free fruit popsicles are good or bad, though.
My BMI has stayed around 22/23 for the past several years and for most of my life. I had one year where it was higher than that. When I was really fit several years ago it was lower. I had a child early but breast fed, don't drink and haven't since age 23, and haven't eaten meat or chicken for several years. I do eat fish and shellfish. I do have a lot of stress in my life (working on reducing that, too) and have been very sugar dependent for several years - long hours at work with sugar to boost energy.0 -
CharB,
You should be feeling better soon! When my WBCs got really low I felt like total crap. Just hang in there, it really will be over before you know it!
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Oh, Heidi, I wish I was one of your pups this morning. I love liver with bacon. I don't know why I only fix that once a year. Christmas day brunch I cook chicken livers with bacon and mushrooms. Yum. I was taking to my daughter about how much I love brunch and she does too. So today she is making quiche with bacon, spinach and shitaki mushrooms. She make the crust and it is the BEST! We are having LJ's famous bloody Mary's , listening to regae music and having a great time.
I spoke with MBJ this morning. She is still in the hospital. She is so thankful for the laptop and wanted to let everyone know how much she appreciated it. Her cancer has metastasized to her bones in several places, spine, shoulder and liver mets. Her liver lesions are small which is great. She had surgery this week on her spine. Her cancer has changed to high in estrogen and she will be starting tomoxifen this week. She is in a lot of pain but happy about the miracle of her now high in estrogen there is hope. I am hoping to feel up to going down and seeing her this week. She is excited and i will be happy to see her. A friend of mine has offered to drive me down with a
mandatory stop at the Zappo's warehouse. My friend has been to the warehouse many times and has gotten fabulous deals on shoes like $15.00 for a pair that would regularly cost $200.00. This shopping trip sounds like it may help me more than morphine. LOL0 -
Laurajane- I sure hope you get to see MBJ this week. Please give her a giant hug from all of us! I had no idea that when the FC metastasized it could change from - to +. That is at least some good news for her.
The shoe shopping sounds fabulous!
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Heidi - sounds like a wonderful day. It's raing cats and dogs here on the NC coast.
LJ - what a great friend to drive. Sounds like a great day to look forward to. Hugs to MBJ - wonderful news on the hormone change. Sunday brunch - is my favorite meal. Yours sounds lovely.
CS Annie- Hope you are still on an upswing.
Hugs all around!0 -
Hi guys - still feeling fuzzy but trying to keep up!
Laura - enjoy your visit with MBJ and send her my best wishes. It is so odd to say this, but Yayyyy! to the ER status change! That opens up so many options for her, and all I can think of is Kathy Rich, 18 year Stage IV survivor! Hopefully Mary can get online soon and say hi. This reminds me that I have to be sure and have my hormone status checked on the fluid they took from my lungs...
As for you - I'm so jealous! A day at Zappo's warehouse? Heaven! you've earned those "wings" my dear.
Heidi - such a contrast in days from LJ's - but I'm just as envious! I'm this odd mix of country/city. Enjoy your carriage ride!
Bak - focus on the response you had to chemo, I think that is truly what is important. I have NO scientific evidence to back up my next statement, and am probably wrong, but I believe that a small percentage of Stage IV TNs CAN be cured, because they can respond so well to chemo. I hope I am right, especially for you. Hang in there.
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My feel-good of the day - my oldest son (10) went with my dear friend and her sons to go snowboarding in Vermont for the weekend, his first time snowboarding AND his first sleepover - sob! He's growing up so fast.
Have a good night everyone!0 -
TIFJ- yes it is rare but it can change. I've been praying for a mutation too. When I developed the skin mets that can be a sign that the FC has changed to her positive, but no such luck. The chances are small. I hope you had a good day.
OBXK- our brunch was so much fun. We are going to try and do that more often. I hope you had a good day too.0 -
Thanks for the info Laurajane! Having a lazy day at home with the family. Husband is messing around in the garage and kids are playing with Legos. I am sitting on my butt playing games on my Kindle Fire. Glad you had a nice brunch! Have a great evening!
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I found my lump around Christmastime. 2009. I hit my breast on a chair and it hurt. Then I found a lump. Pigeon egg sized. It throbbed! Due to my husband then being laid off work. I didn't go in. NO money! A Cafemom friend had the same symptoms.. Sounded like me. So when I made my apt. for my mammogram. One where you go to a clinic and they take you out back to the Van! I said I had a lump. she goes, then I can't do you! So I had to wait and go to another city. I didn't have a safe car. So my newly jobless Daughter decided to take care of me! It was always she driving, her Dad & I!! Mammograms, Biopsies.. And having a morning Friday hurting test. Took until 3:17pm on Monday March 1st. A Scheduled Fun Day! Well the phone cracked the girl's voice cracked and I heard I have Breast Cancer!! Everything changed then!! I had some tests, sentinel biopsy Etc.. A bad DR. that couldn't do anything Right! A Surgeon that did my first surgery and installed my Not Good Chemo port. Then she decided to close her practice and run for politics! So I had to find a New surgeon. I did 4 rounds of Adriamycin/Cytoxan every other Monday with a neulasta shot on Tuesdays. The did 7 weeks, every Monday of Taxol. It was disabling me. So I couldn't do the 12. I had a lumpectomy scheduled on my 50th Birthday but she changed it to 2 days before my Birthday. I ended up with 35 days of Radiation including a boost. I'm still tanned, swollen and hurting!! My husband is still jobless. So we have no income! I never recovered from all of this! I'm in pain from head to toe. But we still have each other and Love!! That dear husband whom I met one Christmas eve 1976. Begged me to live to stay with him. I did. I feel helpless and hopeless. But am still alive to live to love another day.. Nothing in this was easy. Whatever could go wrong did! But I got through it! Thinking back on my life.. This wasn't even the worst part of it!! I guess "Triple Negative" anything can't be Good!? I hope that we can find any common denominator and see what it is.. Do we fit into any profile? I'm a 32 year Migraine sufferer and was told migraine sufferers are less likely to get breast Cancer. They've never stopped!! I hope to live to see Prevention and The cure to all Cancers!! When I was 19 & pregnant. We found my Bio mom. Whom I was taken away from by the RN in my birth hospital. So When we found her in time. She was dying from Breast Cancer. She never shared if I had a Dad or family. I never shared she'd be a mother. not that she lived. We had a short emotional visit. She was 46. My poor dear husband got to see her dying look on my face! It was so hard to see his broken heart looks on his face. He felt so helpless but tried to encourage me! I do have married daughters and grand babies. I always wanted a big family I never had! I now have it. Its all you Cancer fighters right with me! Thank you! Nice to know you! Strangers are friends I've yet to meet!
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LJ..give Mary a hug from me too...good thing about the er positive..I hope this helps! and have fun shopping at Zappos..I wear a size 8..lol.
Welcome Angelinda!..so you are more than 3 years out? Thats a good thing!
Today is my 29th wedding anniversary and my husband left for a business trip...wow..I'm lonely...it's good for him to go...I think he would have declined a couple of years ago..I sent him a pic of our toothbrush holder..with only one toothbrush in it...
I miss him...Tomorrow is 35 months out from my surgery...sometimes I just can't believe it...
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Titan - ((hugs)) to you with your husband out of town, and celebrating not one but TWO important milestones. I'll be thinking of you tonight and tomorrow.
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angellinda - thanks for sharing with us. All I can say is that you are one heck of a strong woman and some one up there seems to be taking care of you. Life can get very challenging sometimes, but just hang in there. After every dark night comes a bright beautiful sunny morning. I didn't see your diagnosis at the bottom of your post. If your add that to your profile, then it will appear under your post. Do your know your stage?
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My heart breaks to hear about MBJ. How, when did this all happen? My God! I just cannot believe how one day someone is well, getting better, and then it is back. I know that MBJ was taking all kinds of precautions. I am glad she will be able to take tamoxifen now. My body could not take aridimex for the very small percentage of positivity. I am so scared, my core needle biopsy is scheduled for Tuesday afternoon. I had my Cervical spine MRI on Friday and the results are not out yet. When the surgeon calls me at work next week to give me my results, I swear to God, I will have a heart attack before I can hear it. Can anyone please give me any advice as to how to hear your results. To me this is the single most difficult thing in the world. Shall I have her call my son who can tell me easily later? I swear I don't know how to handle this. I am sure I will pass out, as my heart will come out of my chest. I am so scared of another cancer diagnosis. What shall I do, ladies. Does anyone know what percentage of TN's have a local recurrence? What percentage have a distant mets?
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Lovelyface,
I wish there was a way I could take away your anxiety. I hate scans and waiting for scan results. It makes me so anxious. Just know we are all thinking of you and hoping the best. Sending you a hug through cyberspace.
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Titan, Congratulations on 29 years!! That is a great accomplishment. And 35 months is awesome, too - you are almost to the big milestone for us!
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Another good day today. Managed to get a heap of work done. I am a medical typist so probably read too much and know so little. Tomorrow I go for a bone scan and whilst I am in Hamilton will see the Wig Lady. I have told her I would like long, beautiful, wavy, shiny locks that will make me look like Julia Roberts (yea right). Have noticed my head is itching like mad at times but it isn't even a week until tomorrow. Honestly haven't got nits!!
Laurajane - yes been drinking heaps of water. At least 2 litres per day so that might be why I am also so puffy. In the middle of the night sometimes I feel like I won't stop peeing.Will talk to my Onc as you suggest though so hope its not kidneys.
OBXK - Yes having another upswing day. Have taken a stool softener and not working much but didn't take it right from the start. So will take it as soon as I start the next chemo this time. Hopefully I will come right as I am eating lots of veges.
Mccrimmon324 - I have found that putting my feet up for half hour during the day helps though haven't been getting the exercise that everone talks about. Gotta make an effort.
BernieEllen - your Pet Moneky joke was excellent. Keep them coming.
Lovelyface - I pray that your scan will be ok. I know how you feel waiting for results, absolutely nerve racking. They will ring you and say I hope you are sitting down cause we have some good news.
Can anyone help me with thrush in the mouth and to the sides of my mouth. Very uncomfortable when I am eating. Not a major just irritating me.
Can anyone tell me if they have had a CT scan where you take a contrast drink first and what it was like. Will be having that next.
Keep your chin up ladies. You are all so positive I take my hat off to you all.
Annie ooxxoo
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Annie, I got thrush twice, and both times, the doc wrote for me to take Nystatin, an oral anti-fungal. It's a sweet liquid you swish and swallow four times a day. Some don't like the taste, but I thought it tasted like candy, so I never forgot to take it!
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Titan - Congrats on your anniversary!! So sorry that your alone, the single toothbrush makes me sad but its only a business trip and he'll be home in no time.
Lovelyface, I am so sorry your having such anxiety, I really wish there was something we could do or say that would make it better. My only suggestion is to start taking your xanax or your anti-axiety meds on a regular basis. Practice your deep breathing and maybe let your doctor's know that your extremely anxious and would like the results ASAP. Keep posting, maybe just talking about it will release some of it. We're all her with you.
While I'm devasted over MBJ's reocurrance I have to admit that I am very happy to hear it switched to ER+, so glad to know she's got some other treatment options now.
LJ - Have fun shopping!! I could use a shopping trip. Vacation is 4 weeks away!!
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CockerSpaniel,
I have had two CTs with contrast - the test itself is not scary - I didn't like the breast MRI even though supposedly it is somewhat "open", I found it very claustrophobic. But the CT scan IS open and relatively quick. Make sure you put the contrast in the fridge the night before so it is cold. It tastes better that way. I have had the cappuchino (yuk) and berry (less yuk) flavors of contrast. They told me berry was the most popular. Both times it took at least a day or two to get my results. I was so anxious I went to the nurse's station and got a copy of mine because I hadn't heard from the doctor yet. Sending you my best for a clean scan!
Pretty day here in Tennessee. I am just now getting up; my days and nights are all mixed up due to chemo. Feels weird to be finished after a year of active treatment. I am going to be on tamoxifen for the 5-10% ER receptors but won't start for a couple weeks. Hope everyone has a great day! I'm headed into my office once I can get moving.
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Annie - just a word of warning about the CT contrast. A few hours after getting home afte the CT I had a sudden urge to get to the bathroom. Though I rushed, didn't make it in time.
The first time I pooped my pants in a long time!!!! This happened to a couple of other ladies on my chemo thread - but nobody had warned us about the possibility. I was lucky, only 10 minutes from the hospital. Where are you - England? Just some of the things you say makes me think that. 0
