Calling all TNs
Comments
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Barbbasile, I've just finished 10 of 12 weekly Taxols and found it much easier than AC, thank goodness. I've been tired some, and had some sore toes but that is all. I do take daily Vit B6 on the recommendation of my oncologist, and I take L-Glutamine on the recommendation of some posts on this site. I don't know if either have helped, but my SE's have been minor. Electrolytes have helped with night cramps in my legs (Onc. recommended this.) Accupuncture does help with the toe pain.
Yesterday I was "unblinded" from my clinical trial, and found I had been taking Avastin with the other chemo. I had thought so because I had so much more fatique on the Avastin/placebo weeks. I hope the Avastin is helpful.
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Yes, my finger and toe nail were put on ice during each Taxotere infusion and I didn't have any trouble whatsoever with my nails. I would highly recommend putting them on ice for ther enture duration of Taxotere infusion. Actually, I used clear nail strengthener, too, and my nails were never better because I took such good care of them at the time.
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Today's fare:
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Mity..glad you got the Avastin! I'm not doing any trials..not that I haven't asked about them...I read on a thread here that Tn's need to take chemo for life..not sure about that..all I know is that I would absolutely dread having chemo of any type again I would do it if I thought it would help..
That is something I don't understand..maybe someone can help me..you have your surgery, your chemo, your rads..and then that is it..why couldn't we have some ac or taxol maybe once or twice a year..maybe as a preventive..if chemo only stays around for one year..well..what happens after that...probably a stupid question..but curious.
As far as nail loss..I lost one toenail..my little toe..that was it...my fingernails went crazy..and they still are..and that's another thing...I regard fingernails as a sign of health...if they start breaking off I think I will start freaking.
Oh..Barb..I was talking to my DD on the phone and one of her roomates has diarhea and I said..oh the Hershey squirts huh? Needless to say..I'm a disgusting mom...funny stuff.
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Mity..glad you got the Avastin! I'm not doing any trials..not that I haven't asked about them...I read on a thread here that Tn's need to take chemo for life..not sure about that..all I know is that I would absolutely dread having chemo of any type again I would do it if I thought it would help..
That is something I don't understand..maybe someone can help me..you have your surgery, your chemo, your rads..and then that is it..why couldn't we have some ac or taxol maybe once or twice a year..maybe as a preventive..if chemo only stays around for one year..well..what happens after that...probably a stupid question..but curious.
As far as nail loss..I lost one toenail..my little toe..that was it...my fingernails went crazy..and they still are..and that's another thing...I regard fingernails as a sign of health...if they start breaking off I think I will start freaking.
Oh..Barb..I was talking to my DD on the phone and one of her roomates has diarhea and I said..oh the Hershey squirts huh? Needless to say..I'm a disgusting mom...funny stuff.
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My dr told me to cut my nails short to avoid breakage and hangnails which could get infected. I didn't, couldn't, wouldn't. I didn't have any problem with mine, but like Sugar I took really good care of them. The drs like to look at you nail beds as an indicator (For what? I can't remember) so I was told not to wear polish. I guess you could get a fungus infection and not know it until it was well seated.
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Although my nails were nice during and after chemo, they look like crap now nine months later. It's just laziness on my part. I need to revisit the nail file and stop using my Blackberry so much.
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I need to stop filing...papers, not my nails. I save my filing for one day a week, and wear latex gloves while I do. So wish they hadn't got rid of our assistant!
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Barb - it does get better and don't be humiliated. I guess it's time and I've shared the story with others and while it is or was something we don't want to experience, it funny (if it doesn't happen to you). During AC, as you have well discovered the intestinal tract is somewhat moody. Well....I had a period of cactus butt and nothing was moving, then woke up one morning to the rumbling sound of relief. The rumbling continued for about another hour, but no relief. I decided to step out into my backyard to feed the birds, as I was scooping up the bird feed the rumbling began to feel like pressure. Hmmm, I thought - I should have enough time to put the food in the feeder and make it back into the house, my birdfeeder and backdoor aren't that too far apart. Nope I was wrong ........... the activity began, but I was outside not in the bathroom. I ran like I've never run before "clenching". By the time I hit the bathroom it was too late - the activity began before I was ready. So.....as you can see as disgusting and embarrassing as it may be - it happens. (((hugs)))
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Barb (and other taking AC): My AC got worse as time went on. My onco said it's cumilative and the SE's can get worse with each infusion. Mine did. About the 3rd or 4th AC is when I had my breakdown at the onco's office. I was a mess. A lot of it was work stress, but the AC wasn't helping. I would get so frustrated with my chemo brain. I forget conf calls and details. My train of thought would drift.
SO... my onco put me on weekly Taxol instead of dose dense. My quality of life is much better. I don't feel as awful and I don't need the Neulasta shot (had one Neupogen shot last week due to low WBC's). No queasiness at all. I do get tired (and cranky) about 2 days after chemo. I just had my 8th chemo today - only 4 more to go. Some of my nails are dark underneath (like my thumbs and big toes). It hurts sometimes to thumb at my Blackberry, so I try to use my fingers. My nails are very strong and I keep them relatively short (like a quarter inch past my nail bed). I always have nail polish on them. I use TREE TEA OIL on them every day. I read somewhere on BCO that it helps. I also take L-Glutamine.
My hair is starting to grow back (started on week 6 of Taxol). I am very excited for this. My hair down there is also starting to grow back, so hopefully soon I'll stop peeing sideways.
My nose hairs have also started to grow. I've lost almost all of my brows and lashes on Taxol, but I'm seeing some new growth. YAY!
Thank you for reminding me about the poop. I need to go eat some prunes. Fruit, veggies and prunes have been my life saver as I have also developed Cactus Butt! Ouch! I was trying to use meds to help, but natural whole fruits/veggies have helped more (imagine that). Plus, it might help that the AC is getting out of my system. I hate that stuff!!!
I am a little scared to be done with everything and have to monitor my BC, esp with TNBC. I am also getting my ovaries removed because I'm BRCA1+. I am not looking forward to that, but at least I already know what a hot flash feels like. I have them every day. This started on Taxol, but I only got one period at the beginning of AC. Since then, no period.
On the subject of hair (again)... I got a brunette wig (see profile pic). I was brunette until I started getting gray hairs, so I started highlighting my hair, which turned into a whole lot of blonde. Even though I'm about 25% gray now, I think I'm going back to being a brunette. I really like the color. I'm not looking forward to the growing out phase, but I am excited to see more hair on my head!
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Kittycat: What a great picture of you and what a nice wig! You are beautiful both as a blonde and as a brunette!
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AC number 2 today. My bowels are a little loose this a.m. Not the infamous Hershey squirts we talk about on here but, passing easily and I don't dare pass gas!!. I hate to take the Immodium and set myself back since I tend to have constipation problems but I sure don't want loose bowels during infusion!! I use the lidocaine cream, at 10:30 on my port site, cover with Saran Wrap and then I go in at 11:30 for them to draw my blood, send it to the hospital for eval., then I see the Nurse Practitioner at 12:30 and if all is a go, I get the AC. My husband asked me this morning if we had anything to do after beside pick up medicine and come home and do supper and I said, "yeah, peel me off the cieling all evening!" The Decadron really hypes me up and the Lorazapam doesn't work to well at calming me down. Wish me luck and I may just take that Immodium anyway.
Juanita
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AC number 2 today. My bowels are a little loose this a.m. Not the infamous Hershey squirts we talk about on here but, passing easily and I don't dare pass gas!!. I hate to take the Imodium and set myself back since I tend to have constipation problems but I sure don't want loose bowels during infusion!! I use the lidocaine cream, at 10:30 on my port site, cover with Saran Wrap and then I go in at 11:30 for them to draw my blood, send it to the hospital for eval., then I see the Nurse Practitioner at 12:30 and if all is a go, I get the AC. My husband asked me this morning if we had anything to do after beside pick up medicine and come home and do supper and I said, "yeah, peel me off the ceiling all evening!" The Decadron really hypes me up and the Lorazapam doesn't work to well at calming me down. Wish me luck and I may just take that Imodium anyway.
Juanita
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I also just saw this posted on BCO regarding TN's
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"My hair down there is also starting to grow back, so hopefully soon I'll stop peeing sideways.
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Oh, I just had to laugh, because the first time it happened to me, I was so startled and it took me awhile to figure out WHY that happened. LOL
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Mitymuffin: Interesting study - seems like very surprising results. Maybe we will need a new category to find therapies for: quadruple negative - ER, PR, Her2 and BRCA -
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Luah, I think we need to here the details from that M.D. Anderson study. Speaking as one of the "quadruple negatives" myself, I'm all for more therapies.
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Kittycat - love the brunette wig, you look great!
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Colored my hair today, and was able to weave in some highlights, too. It still isn't long enough to spike very well, but after straightener, blow-drying, pomade, and spray, it's as good as it's going to get for now---and it's better than it was! Waiting for DH to get home and comment.
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hey jenn~ I pooped in my pants at Target! Top that! LOL!
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KittyKat - I LOVE the brunette wig - the color looks great.
MBJ - Your new look is wonderful too
I so need to update my profile picture, but that would mean getting in front of a camera.
Michele - Isn't that crazy how our bodies react.......I shared the story because while embarrassing, it is funny.
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hello to all well doing rads and back to work and running the kids here and their # 20 rad down today seen lipdemea dr. today was haveing pain in my back on the bottom of ribs ? dr. said it was the same area i on the frount that was blisterd more from rads and needed to tell rads dock i thought it was just from the muscel pain it keept giting worse and my mucel was fine she said.said it could be from tha rads beams kinda worryed.
mbj good luck with checkup prayers are with you
titin have fun n your trip and prayers with you on that 3 month check up.
prayers with all
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Today was my last chemo. HOORAY!!!!
I changed my avatar - thought I would show everyone what I really look like. Took this picture myself (in the mirror) today.
I will be sick all next week but everyday I can just say this is the last Monday I will be sick. This is the last ....., I'll be sick. I get the day after shot tomorrow, then see the Dr. on Monday and nothing else for October. I get the referral for the Radiologist on Monday so hopefully I can get that all scheduled to start on November 1st. I am hoping to be done by Christmas.
AGAIN - CHEMO IS OVER!
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yay yay yay swanny!!!
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Wow..all these new looks! I don't look like my avatar anymore either...guess I needs to update!
Swanny, Kittycat and Mbj..well..you guys are BEAUTIFUL! Dang, but we look good after all we are going through or have been through Please..don't anyone think they are not pretty..YOU ARE!
Swanny..Yay on being done with chemo..now comes the recovery time..and the best of all..your hair coming back...! Things are good!
Oh yeah..my trip..leaving one week from this coming Monday!
Don't see the onc/bs surgeon until November...its weird..after I was done with treatments the 3 months seemed to go by quickly..now it seems to go slower..I like that!
I did cancel the appt. with rads onc because my boobs are just fine from rads and I honestly don't see any point in seeing him..I'm seeing the BS and the onc the same day...don't think I need felt up 3 times in one day...
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Swanny,
GREAT!
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Swanny - such great news! Congratulations!!
MicheleS - too funny I pooped in my pants in Target also!!! ;-) Not kidding! Though I was the only one and was way too embarssed to admit to anyone but you gals!
Well feeling pretty good this week after no chemo this past Monday!! Yeah!
Have a great Friday!!
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mitymuffn - thanks for sharing the info on the BRCA gene and TNBC. My original onco had told me that TNBC and BRCA responds very well to chemo. Interesting about the PARP, too. When I went to Sloan Kettering, they told me BRCA and TNBC responds well to the PARP. I hope I don't have another BC diagnosis and have to deal with this again!!!
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jwtr: I also drove myself to rads I had 40 including boosters. It wasn't too bad, but certainly don't do it if you don't feel up to driving or not safe! Be safe.
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