Calling all TNs
Comments
-
Rachel: I'm BRCA2+ also... there are certain studies (which I'll post links to later) which indicate BRCA+ people may actually have a better survival but again this was a recent study and a small one from what I remember. However, I have been thru it and it was a real REAL shock to me too. Bilat MX and ooph and chemo here... and the BRCA thing raises our tendency toward other cancers too so don't be shocked if your onc says you have to wear long sleeves year round (mine did.. do I? heck no not with instant menopause!). I sent you a pm with my number.. call me if you need to vent or ask questions...0
-
Titan - yes she was. She will always have a place in my heart. Btw, congrats on doing so well on TPTO thread! I'm trying but it appears cheesecake is not the fix.
0 -
Hey Ladies, Have a question about chemo. I just had my 5th of 6th round of TAC last Thursday, this time wasn't too bad except this morning I woke up and I'm physically drained. To the point of barely being able to walk across the room without sitting down. I have this happen before but never to this extent. Is this normal, is it just the cumlative effects? Also, Steriods, when you come down from them can they make you extra emotional? I'm a wreck this time and I have no idea why.
Thanks for any input and enjoy the week.
0 -
I think that all chemos have a cumulative effect. I did TAC, too. 5th tx was the worst. I think the 6th was probably as bad but the mental knowledge that I did not have to have anymore was enough to pull me through. All that being said....if you are unsure if things feel normal(whatever that means) always call your Onc and let them know. And I agree that Steroids can really mess you up emotionally......Hang in there......You are almost done.
Navy
0 -
Hi everyone!!!
Titan-thanks for that wonderful news!!! You made my day!!!
McCrimmon324- the cumulative effect awful!!! I could barely get up the stairs w/o sweating and feeling like I was going to pass out. You are almost at the end though!!!!! ((((((HUGS))))
Cute Dog!!!
Heidi- my next house will have a pool. I love to swim!!!, but for safety reasons it's not practical yet.
0 -
Adding ladies: for those of you taking biotin I have an update.
My nails are longer and stronger. I have cut them twice since TX.
My hair is growing like crazy. I don't plan on cutting my hair for awhile. I just want to see how long it can grow.
I started taking them in March.
0 -
Back from DC! We got to the National Building Museum (for a Lego exhibit) and the Smithsonian American History Museum, which I always love. And walked. And ate. A LOT. My poor DH got mild food poisoning one night, which stunk. My LE unfortunately started acting up also, but I'm managing that.
Titan - some days, when I'm really in the thick of it, I lose hope. Stories like your friend's help bring it back. Thank you for sharing.
McCrimmon - that is your white blood cells in the toilet - and probably some mild anemia - making you feel that way. By my 4th AC, it was a chore to even come down and sit on the couch. At the end of my Taxol/Carbo, I couldn't do a flight of stairs without sitting. Hang in there...
Ruth - I am so sorry about the loss of your friend. My heart goes out to you, her family, and all of her friends.
Rachel - welcome. I don't have much to add, you've gotten great advice. Well, I'll add - don't be afraid to advocate for yourself! If you feel something is off, push push push. It is YOUR health on the line here, not your doctor's.
LJ - thinking of you. Read a relevant post on another site from a woman who had resistance to Taxol and was concerned about using Abraxane. But she gave it a shot, and it worked! So I'm hoping you are kicking cancer's butt at the moment!
I love all the doggie pictures. I'm off to figure out this picture posting stuff. I'll try and put some shots up this week of my dogs and shoes.
Have a good day everyone.
0 -
OBXK: So sorry to hear about your home's damage-Hope there isn't much damage and that your other home survived. Hugs!
McCrimmon: I only had 6 x TC and the last was a doosy. Are you getting Neulasta shots after chemo? It helps, but I was really, really tired towards the end. You can do this! Hugs!!!
0 -
Ruth, so very sorry to hear about your friend.
Rachel, welcome! I echo Riley702's comments re "Whack it hard". Your cancer was caught early which is really good. Because of its aggressive nature, TN often doesn't get discovered until much later. When I hear bad stuff about TNBC, I hear my ONC saying "This is curable." That's what I'm focusing on as I go through treatments.
0 -
Hi ladies, hope you all had a great labour day weekend. I went camping with the family did some fishing, sitting by the fire relaxing in the sun it was just what the doctor ordered wish I was still there.
Ruth so very sorry to hear about your best friend, I lost mine 7 years ago to the beast. Sure do miss her and think of her often.
Rachel welcome aboard, just take everything day by day, like you heard you will have good days and bad days and then before you know it you will be nearing the end of treatment. I only have 12 rounds left of radiation, had to do 33 and did chemo as well, I cant beleive how fast it has gone by. Now I am trying to figure out what I am to do with myself without all those darn doc appt all the time.
Would love to respond to you all but have to get back to work
hugs Kymn
0 -
Rachel, the only words I can add to what has already been said are "Keep fencing." It will keep you strong emotionally and physically, and even if you have to drop down with your training (likely, during and for a while after treatment) and cut your sessions short, you will feel better keeping it going. There are studies showing that exercise also helps make reoccurances less likely.
Ruth, I'm so, so sorry.
McCrimmon, I found the treatments to be cumulative.
0 -
Ruth, so very sorry to hear about your friend. It must be such a terrible loss.
Titan thanks for your uplifting story.
Rachel, welcome! Keep on fencing. This is a hell of a ride and getting a few opinions about it all is excellent. Also, take someone with you who is very sharp adn can stay focussed as there is so much info you will be reeling from. Everyone here has great insight and can help guide you.
Suze 35 So glad to hear you had a great weekend.
Love all the animal posts...will have to add my cat.
Kymn..wow you are almost there...how are you faring making thos e daily trips.
I have my fourth and last round of TC chemo Friday and then go for 33 rads.
I have been unhappy with my care and met a great radiation oncologist today. She was so so thorough and provided great information. She is at a local center which opened 3 years ago so has all new equipment and my friend who is an oncology researcher at MIT Whitehead Institute is going with me. She met the first radiation oncologist and we both immediately looked at each other and knew we were in a better place. I am waiting until I meet the radiation oncologist from Mass general next week to decide but am also thinking of swithcing my oncologist to Dr. irenen kudor at MAss General.
Has anyone switched oncologists after chemo?
I think I need to have confidence in someone and I realized I should consdier switching for follow ups. I will call MGH and see if I can do that.
OBXK..hope there isn't too much clean up to do....these things can be overwhelming.
Well going into round 4 trying to battle my way up from 85% chemo should be interesting. Only one mouth sore and I treated it aggressively and it is gone. Will have to communicate with the onc about it tomorrow in the hopes we can go higher on dose.
My best to everyone.
0 -
Hi Ladies I have a question..... do you think it is possible to have a seizure in your sleep? About a month ago I had a whole weekend where I had vertigo , this weekend I had a horrible dream that I was having a seizure and I swear I could feel my hands and feet moving and my chest muscles flexing, I kept trying to call for help and I couldn't get the words out I don't know if really was just a dream but I am sooooo off right now... I woke up yesterday and I felt like a train hit me I couldn't keep my balance and I felt like I was so hung over. I don't know what to think I haven't had chemo since Feb. I don't know what to think..
0 -
Tracie: I would contact your dr. and have them refer you to someone to make sure it isn't aything to be worried about!
Paintingmyway: I changed hospitals and surgeons in the middle of treatment and I am so glad that I di-I say go for it. It made such a huge difference in the care I received.
0 -
painting - yayyyy on the last chemo!!! I'm so glad you were able to keep the mouth sores to a minimum. Let me know when you are up to lunch so we can celebrate! Is Dr. Kudor the oncologist we both saw, the Irish one? I say make the switch - you know how I feel about getting the right care!!
tracie - that is something I worry about myself, to be honest. I'd say it was a waking dream if you didn't have after effects, so I would definitely ask the doctor. I hope you are feeling better.
MBJ - you must be so excited for your move! I hope it goes smoothly for you. Chemo brain, where are you moving again?
OBXK - I'm so sorry you suffered damage with the hurricane. I hope clean up goes fast and smooth, and that the beach house is okay.
0 -
MJB tried to switch to MGH mid-chemo but they woldn't let me but for radiation I can switch and I will see if I can switch my onc post chemo.
Suze 35...yes the Irish doctor at MGH..I am going to call tomorrow and see if I can change. Will say that my friend and I were very impressed with the radiation onc at Winchester and their thoroughness and facilities but she and I will go to MGH next Tues. Theradiation onc today was very surprisedthat my PCP didn't do an annual pap and suggested I only need a colonoscopy once every 10 years.( I am 56) She told me to go back to her and demand to have them as routine care.I liked her spunk. She also said I should have had a bilateral breast MRI prior to surgery but she was relieved that I was having one at the end of Sept. so I liked that she wasn't afraid to speak her mind.
Tracie 23 ...sounds like it would be very useful to get a referral to seea medical specailist. Sounds very disturbing.
0 -
tracie 23- yes, you can have seizures in your sleep.
I had a seizure after my treatments ended. Afterwards, I did a lot of reading on the subject. I never had another one, but I had VIVID dreams in which I was certain I was having one. In my case, that wasn't true (hubby was awake right next to me, and I asked him upon my waking). I think I was just so terrified of having another that the thought literally gave me nightmares.
I hated my neurologist (he never got a handle on my migraines, either) and the fact that he was such an arrogant asshole, "quite certain" I had epilepsy (bullsh*t to that idea... btw, I am known in here for my colorful language at times). My GP felt that everyone is entitled to one "unexplained" seizure.
In my case I just think my body was *exhausted* from the physical and emotional turmoil of BC and that, combined with possible dehydration (I'd done a Relay for Life for my son's girlfriend's team the day before in hot weather) caused it to just pull the plug/game over. I lost my driver's license for three months and hated every GD day of that time-frame. I was put on some crappy med that I eventually refused to take (CYA for the neurologist) and had to hire someone to drive my horses to ME, as we'd rented a cottage for a month and planned to take our boat & horses and sail and carriage drive while there. (We did, no thanks to my a-hole neuro) I digress...
There are usually physical manifestations that occur if a true seizure (grand Mal type) occurs. Petit Mal, (I think they call them "absence seizures" these days) can be harder to note, as the person may just "zone out" for awhile (no body convulsions, etc.) Muscle enzyme labwork will show the presence of certain by-products of seizure activity, along with MRI studies, CT scans and EEGs. The ER throws everything they have at you, or at least it seemed that way to me upon regaining consciousness @ one hour later. Didn't even get to enjoy the ambulance ride--- I was out cold. Hubby thought I'd "bought the farm",... which is bad, since we already own one.
Bottom line? See a neurologist; he'll probably order a sleep study and a 24 hour EEG. You can talk to Aliens while wearing the apparatus. That's what I did--- as some of the gals may remember on this thread.
Geesh...15 months later and it still touchs a nerve. Probably because I just had my case "closed" with my state's DMV and no longer have to present a letter stating I'm fit to drive (cars, not just carriages). Thank goodness my GP agreed with me and took over the case, so I could effectively tell my neuro to pack sand.
0 -
Suze: We are moving to Louisville, Kentucky. Far, far, far from the hectic pace of Los Angeles.
0 -
Hi Ladies
I've been busy with the after effects from Irene, so I have just been reading your news and not posting.
Very sorry about your friend, Ruth.
Mccrimmon, steroid can be plain brutal on your emotions.
Rachelvk, sorry you've had to join this merry band, but welcome. My only advice is that during these difficult times, Ativan can be your friend!!!!!
I stopped by to *smooch* to whoever it was who posted the tip about taking the Claritin/Zantec combo when taking the Neulasta. Had my first A/C, then Neulasta 2 weeks ago.
Took the Claritin/Zantac ...........ZERO bone pain!!!
Have a quick question ladies. When you say you've had say 33 rads, does that mean 33 treatments? I'm curious because I was told I'm having 3 MONTHS of radiation.
Be well ladies0 -
Hi I can't remember if I post here before, but I have been lurking. I was dx 4/11 @ 33, stage IIa TNBC. I just did my last Taxol (4x AC & 8x weekly Taxol).
I wanted to post for the woman wondering about an Onc switch. I switched after my 1st Chemo. I really liked my Onc but it was just too far away for me to drive (1.5-2hrs to the nearest major cancer center) 'cause I was nauseous. I just met with an Onc, for which I received some good reports, for a "second opinion", liked him, asked him if he was comfortable administering the plan already in place. Went to my next Chemo, talked with the Dr and then viola. Scheduled the following Chemo with the new Onc. Went very smoothly.
~Stephanie0 -
Thank you everyone for your input. I'm feeling slightly less tired today, would probably feel better if it hadn't stormed all night and I wasn't wearing my 60lb Aussie sheperd as a hat all night. Now he'll get to sleep all day while I go to work. As of today I have 5 weeks until the end of my last cycle, I don't know if I'm more excited to finally get this over with or just scared of not having chemo. I will be moving onto Rads though.
Ruth, I'm so very sorry about your friend, my prayers are with you and the families.
0 -
Ruth - so sorry about your friend. Please accept my condolences.
MBJ - that sounds like a big move. What prompted it...a change or a job transfer? Do you have family there?
0 -
sandehosgirl...thanks for your input. I tried to swithc onc after my second treatment but because the hospitals are about the same distance away ...25 minutes they told me that they never switch during treatment but unless I had moved and was being referred. Oh well..I will see if I can switch now.
0 -
Hello Ladies,
@Ruth- I am so sorry for your loss.
I am here again to vent a bit. I was declared NED since June of this year. I just feel like there is this black cloud following me. I hope there is a day somewhere in my future where I don't think about the cancer. I'm so afraid I won't be around for my kids as they contnue to grow up,go to college,get married,and grandchildren! I love hearing the positive stories!! I should mention tomorrow is my three month check up with my onc. My anxiety level is so high! I know I should think positive but I'm petrified:( I have done everything I was supposed to do to try and keep this "beast" from ever coming back. I know there are no guarantees in life but I feel like I should be doing more to prevent a recurrence. I have had a bilateral mx,breast reconstruction,hysterctomy,and 8 rounds of chemo in between the surgeries! I know I am also emotional wreck at times because of menoapuse!
Thanks for listening to me vent! For those of yoy in the beginning stages of treatment, or in the middle of it....you will make it through! You are all stronger than you think:)
Take Care,
Lisa
0 -
Ruth, sorry for your loss
0 -
HI ladies I had my 4th TX of radiation only 26 to go. I am now doing lymphadema TX to get sleeve for me. When I finished chemo I was thrilled I bought the nurses and the DR office edible arrangement. I told them I would visit but not return.
0 -
Hi everyone. Went for my mri this morning and met a wonderful woman who had TNBC 22 years ago and has been cancer free ever since. She told me that back then, her cancer was so aggressive that they made her do her chemo and rads at the same time. She has the BRCA gene too. Her sister has the gene too and had ovarian cancer 10 years ago and is cancer free too. They were both there for an mri. Their stories made my day...........
Have a great one.
0 -
I love to hear stories like this!!!
0 -
Why can I not find the right words to comfort a friend...we were both diagnosed at the same time with TNBC. We were friends in High School and reconnected with the ugly diagnosis. She left the hospital the same day I was going in for my surgery. She lives in another state and we reconnected via Facebook. She contacted me over the weekend and her cancer has come back and she now has mets...she has a 4yoa and a 6 yoa and her mother in law has stage 4 lung cancer and her father was just diagnosed with stage 1 prostate cancer. I am so angry, sad, and confused! I have been just sick of this news all weekend...my husband does not really understand my worries and fears...It just seems that people forget but...I worry everyday if "it" is going to come back - I know this is not healthy but it is realiality!
0 -
MBJ - My little sister just transferred to University of Louisville. (We are 22 years apart) She really seems to like it there. Maybe if I get a chance to visit her this year, you and I could have lunch! Good luck with the move. I hate packing! and unpacking!
0
