Calling all TNs
Comments
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Simplelife - how interesting about the freckles and spots! Definitely a nice little bonus.
Tumornamedclyde - I'm interested in those who have had a hysterectomy/oophorectomy and BMX at the same time as well. I'm BRCA2+ and would love to do both at the same time in August. My OBGYN and onc said it would be fine, but I haven't asked my breast surgeon yet. So far it seems like it's more of scheduling issue than anything else - getting all the surgeons in one place.
Coopdizzle - I'm 2 months in to my TNBC diagnosis and I remember all too well how terrifying that first month was. I still have days where I dwell on it. It's a lot to take in, but as others have said, allow yourself time to feel sad, mad, scared, etc., then put your fighting gloves on and get to work! This is a wonderful group of women and a great place for support. Hang in there. I wish you all the very best.
I had quite the scare with a scan this week. Due to being BRCA2+, my onc started ovarian screenings. They found a 2.6 cm mass on my right ovary. Turns out it's a blood filled cyst that is most likely benign…but sheesh. I could've done without that excitement! If it's still there next month, they might remove it, which is fine by me.
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Coop - welcome! You've landed in a great place for TNBC. You will find some amazing people here in all stages of the cancer battle. We share the good and the bad, our ups and our downs...I hope you'll find strength, compassion and knowledge here!
Ally, I watched your slide show and smiled, cried,laughed and just shook my head in bewilderment that such a beautiful young woman would be diagnosed with this crappy disease. The photographer was fantastic and captured every poignant moment. Thanks so much for sharing such a personal moment with us.
Cocker - anything from kathrynn?
Everyone - hugs, love & positive vibes coming your way!
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Coop,welcome to the boards. You're in great company here. The ladies (and husband) are wonderful, lots of support and info.
Navymom and Titan, Thanks for the encouraging thoughts. I can't explain what happened, and when I logged in again after that, everything was back to normal.
I'm scheduled for a brain MRI and Pet on Monday. I need some prayers and positive vibes sent my way. I'm hoping for some shrinkage of the nodules, or atleast no progression. I think there may be some progression because I feel 2 more small nodules on my other breast . That would be a total of 10 of these skin and chest bumps. weird, huh? I'll see my MO on Friday hopefully with some answers, maybe some news on a clinical trial.
have a great weekend everyone. Stay safe!
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Thinking of those going through an unimaginable disaster. We are having a moment of silence at 10:37 am Saturday for the victims, survivors and community of Oso.
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Tumornamedclyde-I like your name
I had my bmx and hyst. separately so I can't help. I do know the hysterectomy was tough on me. Not the pain or healing, but the fatigue and hot flashes. Honestly, I can't imagine doing both at the same time, but I was pretty wiped out by the time I had my surgeries, almost a year apart. I am also brca 1. 0 -
Slow-Did I miss something? I am sending prayers and positive vibes your way:) Sorry I somehow missed what you are going though, probably my chemo brain! I will be thinking of you. Try and have a stress free weekend. Do something that you enjoy.
Where did their names pop up when you typed? In the field that you were typing in? I agree with titan and navy, they are sending positive vibes! Man, I miss those women!
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coopdizzle-you can handle this. It is tough at first, the mental part of it. Once you start chemo you know you are doing something to fight so the mental part gets a bit easier. If you have any terrible side effects let your doc know immediately and they can change your nausea meds or other meds to help you . This is not a time to act tough and not ask for help. Your children will be a big blessing, as they always are, but will help keep you spirits up. I don't have children but have lots of animals and they kept me going. Chemo is tough, but it is not as bad as many imagine before starting. Some women sail right through it, some have a bit of a rougher time, but manage to get through it. Stop by here often, even just to vent, or to ask questions, or to say anything that is on your mind. Sorry you have to be here, but you will meet many amazing women, (and a few men), all willing to support you!
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Good Saturday morning!
Slowloris, I'll be thinking of you this weekend and on Monday. I'm keeping my fingers (and toes) crossed for shrinkage in spite of another bump coming up on your skin. I hate this disease!
Allydp, I'm so glad the mass on your ovary is a blood-filled cyst. Excitment like that is not what you need right now.
Lettingo, congrats on finishing the AC and being onto the taxol/carbo part of your treatment. I hope things are going okay for you. Chemo feels like it's going to last forever when you are in the middle of it, and the all of the sudden it's time for your last infusion. Hugs.
Coop, I just watched your videos (and subscribed to them). The emotions you shared are exactly what I went through too when I was first diagnosed. I think most of us suffer some form of PTSD when we get diagnosed. It a very emotional time period. I think I was in panic mode for about a month. Getting my first infusion actually made me feel so much better because then I felt like I was actually doing something positive to make the cancer go away. When does your chemo start? BTW, I also went to a walk-in clinic and demanded a mammo and got one the next day. I had just moved to a new town and didn't have a doctor. Anyway, you have found a good place here. Have you joined the chemo thread here for your month's start date? I didn't join mine until I was about half way through chemo, but I have found that thread to be a wonderful place for support. Almost all of us are done with chemo now, but those of us that had neoadjuvant therapy have stuck together through surgery and rads. I was also clinically node positive like you at the time of my diagnosis and my docs said I needed an ALND because of that. It does suck, but with triple negative we do what we need to do to give ourselves the best chance of survival.
Tumor, congrats on finishing chemo! We will be in your pocket for your April 15th surgery whatever you decided to do. How are you feeling post chemo? I was really hoping I would be stronger by the time of my surgery, but chemo takes a while to bounce back from. I was surprised how much discomfort I was in for a couple weeks after surgery too. I'm about six weeks post surgery now and still feel soreness and tightness. I had a LX, ALND and also had old sub-pec implants removed as well as the capsules that were holding the implants in my muscles so even though I didn't have a bmx my entire chest wall was operated on. I had three drains and the nerve damage seems to be a bigger issue than the actual incisions. Also, after chemo, I think surgery is harder to deal with because we are not in the greatest shape to start out with. Whatever surgery you decide on, just be prepared for a few weeks of moving very sloooowly! Moving around, walking etc. feels bad at first, but it is so important for recovery and reduced complications. Just listen to your body, it will let you know what it can and cannot do in the beginning. You can do this!
I had my planning session last Monday for rads and my verification session this coming Monday. I don't know my actual rads start date yet. I wouldn't mind if they went ahead and gave me my first treatment on Monday. Of all the forms of treatment we get, I seem to have a mental adversion to rads the most. I just keep telling myself that this increases my odds of survival and greatly reduces my chances of a local recurrence. Since I still had a small amount of cancer left in two of my lymph nodes after neoadjuvant therapy, I know I have to do what I have to do. I figure I can do anything for six or seven weeks. Like chemo, it will be over and done with much sooner than I think.
It feels like my hair growth has come to a standstill after an initial flurry of peach fuzz. My eyelashes are completely back and my eyebrows are mostly back so I'm delighted with that. Hubby claims he can see a difference in my hair, but it's going to be a while....I can tell. It's nothing like the speed that normal hair grows. I have to say, I do like the feel of the downy peach fuzz on top. It's hard for me not to keep touching my head when I don't have a cap on...soft as a baby's bottom!
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My leg and ankle swelling goes away when I elevate them and wear support hose....but the achiness in both my thighs and calves is almost relentless. I put myself on 650 mg of aspirin twice day to prevent clots. If its still there at preop testing ill ask for an US for a clot. Dont want to prolong surgery tho. Still hoping to find someone who has done botha hyst and BMX at same time. So nervous ahout two major surgeries at same time. I hate anesthesia so doing them both at same time sounds ideal. ?..
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Ok. I just got back from a little get away with my hubby to San Antonio. I go in on Wed. to get my port and I'm hoping I can start chemo soon. Like this week. As much as I don't want this to be happening, it's going to. The doc said I will have to do rad at the end
like you said, you just have to do whatever you can to live. Getting this is so scary that I just might PTSD! lol0 -
tumor: i like that long name girl!!
coop: i know how it feels when we get a diagnosis of TNBC, in fact all of us here have gone through those initial few shocking days. Do let us know which drug your onc decided to include in..you mentioned that it is a new drug.
simple: i had a mole, dark brownish in color which fell off after my 3 rd AC. It started to grow again from Taxol and now it has stopped and not the color is different too. Showed it to my onco. He just said that we have to keep a watch on that mole but the mole is on the hand and chances of a secondary cancer are very rare there.
Now I got a new issue. I finished 16 radiations and since the past one week or more I have a funny pain on the ring finger of the left hand and also on the knuckles of the right. It began with cramps and leg pain at night time and now that has subsided and now fingers feel tired and painful. Tomorrow i am going to the onc for this... is it becos of rads or something else is coming up.
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Banr....just guessing but i betcha your pains are after effects of taxol...I remember having some trouble typing on the computer.....and also the leg pain if I sat too long...this lasted 3-4 months after taxol was done...I had a toe nail fall off too...which was weird but took it in stride....nothing like losing the hair..lol....that toe nail was ugly anyway...
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I hope so Titan that all these odd pains which are coming up is because of Taxol. I never had these while taxol chemo was on. It started some 2 weeks after taxol. I remember you mentioning that rads will cause "good fatigue"..yes, it does cause that kind!
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BanR I had pains in my legs from Taxol as well. Found it hard to get up from a chair or kneeling position and still do some days but pains have gone now just a bit of weakness. Also have numbness in my left ring and little finger. Didn't have it with chemo just the Taxol. Still having eye and nose issues as well. I think Titan is right and it's from Taxol. Happy to say at least the leg pains have gone although still have the other issues. Hopefully it will go for you soon too.
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Hopefully cocker-spaniel!! Thanks for replying..
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BanR, did you have 16 rad treatments total, or are you part way through rads right now? I go this morning for my verification session for rads. I'm guessing I'll be starting actual rads sometime this week. I didn't have any bone or joint pain either while on taxol, but my ring finger on my left hand was hurting a few days ago. This isn't normal for me. I just backed off on typing so much. It's possible that it is a leftover from taxol.
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simple : i have a total of 33 rads, 28 whole breast and 5 on the tumor area. Even I didn't have bone or joint pain during taxol either ( but loads of burning and itching) and this joint n bone pain started 3 weeks post the last taxol when the neuropathy and itching had started to subside. Will talk to my onc tomorrow regarding this.
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Hey Gang,
I don't post much, mainly because I just can't keep up. I am not the most positive person and don't want to bring anyone down. However, I did want to offer up a shoulder if any of you want to talk off the boards, via private message or phone just let me know. Sometimes, as well all know we need someone that is not in our circle.I have been having some A-fib episodes again and am back on the heart monitor. CAN NOT do what is right as far as eating goes, was going to have the endoscopy and colonoscopy done and that got all messed up, so it is scheduled for later. Having a lot of tummy issues. I don't have to tell you all the mental aspect of all of this and most days I have control over it just being thankful I am here, but some days I just can't get it under control and think why the hell am I even trying.....:( Those days I hate.
My Thyroid is messed up again so we have upped my medicine and I am hoping it is has something to do with the heart issues and it will straighten out.
WHY AM I HAVING SUCH A HARD TIME WITH THE EATING AND EXERCISING!!! I just can't seem to do it. I have to do lite exercises because of my back.My anxiety is horrible again...........:(
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stupid noob - sorry you are going through a tough time - it must be really difficult for you - thoughts and prayers are with you that things will get sorted out. I sometimes have a hard time with eating and exercising - we all do - do the best you can and remember that a small amount of exercise is better than no exercise at all. Likewise with food - a smaller portion of food is better than a larger portion of food. Hang in there!
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StupidBoob, Give it time. You've been thru a a lot lately. One day at a time. Hopefully the weather is changing where you are and you can take a stroll thru the sunshine. Then the next day a little longer. Don't be to hard on yourself. You have a lot going on. In my thoughts and prayers!
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Stupidboob - Thank you for the links and for caring enough for us to share that! You are truly a special person.
I am sorry you are experiencing such troubles. It is hard to try to keep ahead of SO many things. I don't know if this helps but I had my 'go to' food items that were always stocked, good for me, easy to fix and didn't require brain power so I could concentrate on other things. I know this is narrow but I always had nutrigrain bars and healthy choice chicken & spinach alfredo (high in protein). I hadn't had the hc meal before so I didn't have any preconceived idea of how it should taste so it tasted normal to me during chemo.
I am praying for relief for you. Be kind to yourself. This is a marathon not a sprint.
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StupidBoob - I hope you feel better soon Try to break your goals down into smaller more attainable goals. If your goal is to eat better and exercise, worry about only one of those right now and then work up to the other one. Building upon success, will help drive you forward to meeting the other goal. Also, don't aim for perfect on either. Aiming for a perfect day of eating is hard to do. Instead start slowly. Start with adding one cancer-fighting item to each meal. That means at the end of the day, you've had 3 servings of something that helps to fight cancer. Or if you have one bad meal that day, try to make the other 2 meals that day healthier and then build upon that.
For eating right, try like LovieLovie (love the name) said, to have some accessible items ready, that don't require a lot of work each time. Do you like raw veggies? I make up a large serving platter on Sunday night, with all types of vegetables. Then about on Thursday I have to replenish it a bit. But when I feel hungry, I go for that. They are already cleaned, prepped and easy for me. Some things that are easy to get on the platter fast are baby carrots - already pealed and small tomatoes. As Lovie does, I also have a snack bar - this is just something I've been doing recently. I buy the Nature Valley Oats n' Honey Granola Bar - it's rated a B on Fooducate. Not the best, but certainly acceptable in moments of weakness. Another thing to have on hand is soup base. I buy an organic stock at Trader Joes (Low-sodium Tomato or Veggie), and then I just have to drop a bag of organic frozen vegetables in it. This bag is only $1.99 at Trader Joes and is one pound of veggies! Throw in some turmeric, salt and pepper and it's a good fast item. Another one is an almond butter sandwich. Oroweat 100% whole wheat (rated an A on Fooducate) - and a good rated almond butter - Maranatha is what I use because they state their products are virtually aflatoxin free - they are very particular about their storage of all nuts, and almond butter is much less susceptible to aflatoxins.
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Stupidboob, you can count me in on the anxiety party! I'm really having it rough lately. But thanks for the links, looks promising.
And thanks for the recipes Inspired. I love Trader Joes tomato soup, so adding the veggies is a great idea.
I put on 19 lbs in three weeks due to steroids. Unbelievable.
My doctor yesterday was a bit discouraging, (without intending to be I'm sure) but really need to keep focused on staying positive.
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Hi I'm new, also at Triple Negative, diagnosed at 47 Dec 17th 2013 full left mastectomy & 14 nodes removed on Jan 2nd 2014, started dense dose chemo as well on Feb 24th, every two weeks, this Friday my final of round one then on to 12 weeks of taxol? sorry very foggy brained, and not at home to verify.
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youcancall, welcome! There are several of us still going through initial treatment. Was your first chemo AC? That's the hardest part for most people (including me). I found taxol to be much easier...specially getting it weekly like you are. You can do this.
Stupidboob, my go-to food that I think is pretty healthy but yummy at the same time is organic peanutbutter on either organic multigrain bread or celery. Peanut butter on celery has been on of my favorite things to eat since childhood. It sounds like you are having all kinds of digestive issues so that may not work for you. I don't know. It's more than okay to be negative and vent. I appreciate your honesty. If we can't write about how we really feel, good or bad, there is something wrong with the atmosphere we are creating here. I hope all of us always feel safe enough here to write about whatever it is we need to write about. Honestly, I have often wondered if I would even want to try fighting if my cancer comes back as stage IV. At this point, I have no idea what I would do if I am faced with that. I just tell myself that I'll cross that bridge when, and if, I come to it. I'm still in my initial treatment.
Speaking of treatment.....I had my first rads session today! One down....32 to go. I do like how quick each session is. I am just keeping my fingers crossed that I don't have many skin issues etc. I know the first few weeks are usually pretty non-eventful.
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youcancallmeang- You've been through a lot in a short amount of time. I know how good it must feels to be completing a chemo series. You will probably notice your hair start to grow back in during taxol. Something to look forward to.
Sorry you are making this journey. You will get a lot of support here from some awesome people. Don't worry about being foggy with us.
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Thanks gang for all the support and suggestions. One thing that I have been changing is I have been eating Belvita breakfast biscuits (like cookies and granola) but healthier. I have eaten some grapefruit and been trying to get in more water. I was doing really good when I made the fruit water like the radiation center did but I got lazy on that after about 4 gallons. Lily (our puppy) keeps me busy, so it is not like all I do is sit, but not getting much exercise in. I did plant a few seeds for cucumbers and peppers to plant and hope they take off good. It was 82 here today but still getting cool at night, but as soon as it warms up and if CANCER stays away from me this year I will get to get in the pool. Last year all I could do was walk around in it due to going through chemo and mainly radiation. I am hoping that Lily will want to swim with me. I just have to learn to practice what I preach.....:) I tell a friend of mine if all you can do is 5 minutes then do 5 minutes, but then I feel like if that is all I can do why bother...just get down on myself. With dealing with Agoraphobia it makes it hard to get out of the house and so I can't really make friends and I think that is another thing lacking in my life. I have online friends and phone friends all of which I APPRECIATE and CHERISH but have no "in person friends" and it used to not bother me so much, but now it does. I think it is because I have a very small family and most are gone now. Just feel real alone, and please don't take this wrong as I am not talking about you all.........but I am the type of person that likes the idea of people, but honestly I don't like to many of them. People don't keep their word and everyone is out just for themselves and I feel I have let it rub me wrong and also rub off a little on myself and I HATE that. I don't know why I keep getting to deal with people who never keep their words. Some are major things and some are just things and I have tried to let it go, but deep down it bothers me. I am the type of person that if I say I will do something I do it............all we have in life is our word and it needs to mean something. Losing my dad this year has left me feeling orphaned and yes I am in my 40's but I still feel like I am all alone and I have a real hard time dealing with that......and here is the kicker......dad was not there for me much, but I think it is just the idea that now neither of my parents can ever be there for me again. I am a bit depressed but you can't say that or they want you to take a ton of medicine. I am sick of medicine. I love my hubby and I am so thankful for him, but I think he is even growing tired of all my aches and pains......(shoot I am tired of them) and then I am majorly stressed over the insurance, because hubby needs to find another job after 14 years and I am so afraid I will lose coverage. Cigna who we used to have said you only had 63 days to get coverage and if not then there was a loop hole in the whole pre-exsisting coverage and most places you have to wait 90 days. I wish there were some legit places out there to work from home at least I could feel like helped out some.............Oh well, such it life............I will get past this just in a major funk I guess.
Thanks again.
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Hi Stupidboob-it is so hard to eat right and exercise when you feel like crap! I totally get it. Thank goodness for our furry friends, they are what keep me moving also. Not having your mom or dad is hard, even in your 40's. I am also an "orphan". Lost my mom to ovarian cancer when I was 22 and my dad about 7 years ago. I miss them both terribly to this day. I get anxiety from having schedules and commitments, I fear disappointing people and coming off as a flake because I do cancel plans with friends because honestly I just don't feel good and it is easier to just stay home. It has nothing to do with them, but with my fatigue and anxiety. I also fear getting close to people anymore because I have lost so many to cancer, I don't want to put a jinx on anybody and I don't want to go through another loss. I know it is ridiculous. We just gotta keep on trekin, I guess.
I had my port out today, had it for almost 3 years. So, all they did was numb the area, nothing to relax me, nothing. Well, of course, like everything goes for me, nothing is easy. I guess my body invaded it. Surrounded it with scar tissue, covered the 3 stitches that held it in place, and I guess the port was attached to my muscle. It hurt like you know what for him to cut everything away from the port. Took forever, he hit a nerve that sent pain all around to my back! It was crazy. I did not cry, but tears rolled down my face uncontrollably because of the pain. Unbelievable, will never let anybody cut into me ever again without a sedative. Then I asked if it will hurt later, he said no. WRONG! Again it hurts like you know what and I can't lift my arm without pain. Good thing I have pain meds for my back. I go for another steroid shot for my back on Thursday. Just so tired of pain. Well. anyways, my port is out.
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Oh bak94 so sorry your port went that way. Thanks for sharing though. I doubt any of us will ever let them take our port that way now. You have saved us from a ton of pain.
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