Calling all TNs
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tracie23: Well, I think I'm doing well but I have been frustrated this week. I am healing well. I'm 5'2", 104 lbs, 44, and have always been pretty active. I didn't expect the ooph to really get me down, and again the famous words "everyone reacts differently". Monday was surgery, came home, slept that day away for all practical purposes. Tuesday was pretty painful, not from the actual incisions, but the gas. The exchange really never bothered me at all, very minor discomfort, that's it. The belly has been quite sore. So Monday and Tuesday I took percocet. Wednesday I felt pain still, very uncomfortable, but the pain must have been better because I only had one percocet and then had tylenol, and I also took gas x. Yesterday was my turning point where I thought I might feel human again. I actually went to the store with my family just to get out of the house and walk some. Today I did some very light cleaning, and went out with some friends tonight. I'm still sore, but not near as bad. I highly recommend taking vitamins and supplements to help. If you have popped back from chemo fairly well and feel well prior to the surgery, then you'll probably be fine. However, if you've been feeling really rundown anyway, then you might consider giving yourself time to recover before rushing into more surgery. It's really a personal decision based on how you've reacted and feel thus far.0
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Hi all,
I meet with clinical trial nurse on Monday. The trial is Taxol and Cytoxan every two weeks for six cycles. I am starting to be concerned about the SE's, but will see what they say. I was very interested because it is a 12 week deal rather than the "standard" 16. The trial includes a visit with a genetic counselor at no cost, and if I meet the risk factors, then the genetic testing is done (and would be covered by insurance, since I would have the counselor recommendation and meet the risk factors). I think the closer I get to "everything" the more I freak myself out!
I am cleared for port placement after a pneumonia battle last week. Lungs are clear but antibiotics extended another two weeks. They are horse pills! Make me gag every time, but have the "benefit" of suppressed appetite and I am losing weight, which is okay. I am overweight anyway. I've lost 12 pounds since my January diagnosis.
I have a 15-year old son at home, and two daughters: one 25 yr old, married last Sept (thank GOD I was diagnosed after the wedding!) and the other, 20 yrs old, is a junior in college. My son does NOT want to talk about my BC, but I think he does talk to his sisters, especially the older one. I work at school (elem/middle school counselor) and my son's HS is right across the parking lot, so I know all his teachers/coaches. The coaches especially will check in with him. He does NOT want to talk to the HS counselor and I am respecting that decision. She just touches base with his teachers to see how he's doing. So far, so good, but chemo/hair loss hasn't started yet.
I agree, Laurajane, I HATE that my kids are suffering because of me. But they are good kids and stepping up to the family challenge. We aren't in this alone, as much as that might seem desirable, for our family's sake. Blessings and feel-good wishes to you all this weekend! May it be one of rest and comfort, healing and support.
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Titan: I often feel almost like a burden to my fiance'. And I feel like a bad mom sometimes because I haven't been able to do what I wanted to with my 3 yr old. Then sometimes I just feel sad because it hits me how much I've been thru since last September. Yeah, it gets to me sometimes.. all of the above.. but then I feel blessed that I at least had someone who was willing to help me, and for my son who keeps checking my hair growth or how my tummy looks and telling me it'll get better. I wasn't supposed to be the one needing help. I was always the one helping others, so this has been very hard for me. I just keep telling myself it was my turn to need help, and now I can heal and know that I'll be there to see my son grow up because I hit this beast with everything I could throw at it.0
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Thanks for your response, mitymuffin. Sorry I haven't been on the board much these past several days. I think I'll start with the 5,000 iu's D3/week, as I'm already getting 900 iu's/day of D3 through a combination of my multi-vitamin, Os-Cal, and a supplement called Cal-Mag-DK, which has calcium, magnesium, D3 and vitamin K2. I'll tweak up or down based on the blood tests, altho' my onc and I might have to have a "come to Jesus meeting" where I tell him I'd prefer my Vitamin D level to be between 50-80 instead of his view that 30-40 is fine and 50s are a bit high. That sounds a little low to me, based on what I've been looking up online.
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Riley..my onc is pleased with my D level at 57...I'm not and I told him so..I would like to have it around 70! I'm taking 3000 IU's per day. I just wish spring would come soon so I could get some natural D3 from the sun!
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cc4npg- I'm so glad you are feeling better. Your second post really hit home. I love your attitude.
Huskerkkc- My son didn't want to talk with a councelor either, he is 17 and my daughter is 25. They are both wonderful but very different. It's surprizing to me how different they both are. I realize with such an age difference between them, I think I raised them differently also. I am 47 well I'll be 48 next Thursday.
Riley and Titan- I still havent had a test for my vita D count but I am taking Carlsens vita D3 4000 every other day. It is only one drop.
It feels like Spring is here in southern Indiana. It is fun seeing the bulbs peeking up from the ground and the tree buds swelling. The song of the birds is different also. It's like they are singing "Spring is here! Spring is here!"
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Hi ladies!
I'm down to 4 bracelets, which means, I'm done with the adriamycin and cytoxan!
It's hitting me quite hard right now, b/t the neuslasta, the constipation, and the nausea.
My SIL is here from Albuquerque though, and has been a huge help!
LauraJane, I just noticed in your post you are from southern Indiana! I live outside Philly now, but was born /rasied in Brown County!
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Titan & Riley: Vit D3 with K1: I just found out recently that It's really important to spread out taking the Vit D3--Unless it is time released it needs to be taken at least 2-3 times a day with food and with vit K1 to absorb. I couldn't get mine to go up and I started doing this over the last month. Had a bunch of blood tests yesterday so I will see where I am at and let you know if it worked.
Laurajane: If your libido isn't affected (lucky you!), the dryness will go away after about a month or so off of chemo.
slcst: You are almost there! So sorry about the lousy SE's, but you are half way there. I hope your last 4 are less painful!
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It feels and looks like a monsoon here in Ohio! It's not really very cold, but water, water everywhere! I should check the lake that has formed in part of my land to see if there are any ducks or fish! LOL I'll be happy to see spring. I very much dislike winter.
MBJ: Interesting info about the D3. I've been taking all of mine at once too, but will try to spread them out. I can never find the K1... maybe I haven't looked in the right place.
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slcst12- I lived in Nashville before I moved here to Bloomington a little over 9 years ago. Congrats on finishing the A/C. What are the bracelets for?
MBJ- Interesting about the K1 I'll check it out and see if I can find it. I'll also see if I can find a different D3 . I hope your blood tests are what you expect. I need to talk to my onc and see if she can run more tests for me. Hope you are having a great week-end.
cc4npg- We have had the monsoon here also, but, better than snow.
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LJ - No, I haven't done Carbo/Gezmar. I haven't started on anything yet, my onc wanted me to think about the trials offered, the Xeloda or infusion chemos and to have an MRI to get a better look at the lesion on my spine. I was suppose to see the onc Monday, but Mardi Gras is throwing a kink (or beads) into the schedule. I think I'll see him at the end of next week, but have decided to email him some questions ahead of time to review or answer before the appt.
Although it is pouring down rain today, our weather is spring like too. The bulb plants are peeking through the soil, and the sweet smell of early blooming flowers are in the air. I can't wait to get into my garden and start working........... My oldest daughter just moved home after 9 years, her landlord is selling the property and she didn't have time to find something in the area she wanted - so she's home. The upside is that she loves to work in the garden too. She has a ton of herbs and spice plants that she brought, a small citrus tree, asparagus and lettuce. She is also a vegetarian (has been for most of her life) and is already showing me some good combinations. Like right now.........she just cooked up some kale w/onions, garlic and peppers w/quinoa - OMG it smells good - I can't wait to taste it. I think she'll be whipping me into shape real fast.
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Jenn: Such good timing for you and your daughter to bond during this stressful time! And she cooks, too
.cc4npg & LauraJane: I haven't had any luck finding the K1 with D3 in any health food stores--might have to buy it on line. "Designs for Health sells it in a combo.
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ok I have a little problem, after the birth of my daughter she is 8 now i have always had left over milk so to speak, guess just discharge from the breasts but it never had blood in it and never had an odor so the docs were never concerned about it but I just noticed the one that I had the two lumpectomies on now has bloody discharge any ideas??? Did anyone else ever have this? thanks for any advice
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Donna. I have TN stage 3. It is in 3 of my nodes and the tumor grew very fast by the time i left a crappy set of dr's and got to a good breast cancer center to start chemo. I am 36 and have 3 children with no history in my family. You know what i say? F this tn! IT WON'T TAKE ME! We cannot let the dread overcome us! WE have too much to live for! I am getting a/c evey 2 weeks for two months and then taxol every 2 weeks for 2 months. then i want both of my boobs out. I won't mess around and wait for it to return. If the brca comes back pos i am taking out my ovaries, too! heck with that! beyond that, i will be getting radiation on the cancer side for who knows how long.
Hey, you will get thru this! but the hardest part for me was taking charge of MY treatment. Asking the dr hard questions. I am meeting with special cancer nutritionists that specialize in herbal vitamins and dietary needs for us. I am exercising every day. I pray psalm 20 3x everyday, as my Rabbi instructed. My temple recites special prayers for me every day and so do my loved ones. This is what you need to get thru this. Support from those around you. Take control and now will be the time that you will learn who your true loved ones really are. THrow away those that blame you for somehow bringing it on yourself. You need positive energy now. Yoga, religion, mediation, whatever gives you serenity. I truly believe it is moret than just chemo that will cure you.
As for the chemo, EMend made me feel just fine and no dreaded sickness so far. My hair is falling out now, but the breast cancer center i have found has an imaging center and i picked out the cutest wig with a totally different haircut AND color than my original. All of my friends and family have tried it on and they all love it! I almost can't wait to shave my head and wear it. At least i won't have to freakin blow dry and mouse my hair every other day! ahahahahahah
as i told my children, always look for the rainbow after the storm. if you don't look for it...it won't come.
GOD BLESS YOU AND BE STRONG. (of course there will be moments of weakness in between. just remind yourself of the rainbow you are looking for and envision it)
With ALL MY LOVE
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get your tush to a good obgyn and demand ultrasound and mammogram. my dr brushed away my concerns over the same thing. and i believed him. now i am in the fight formy life
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Heidi, your horses are very handsome, I wish I was in better shape, and I would be riding all the time, it is such a great feeling. I will be retiring the first of May and I can't wait. I breed French Bulldogs and will be expecting a litter later in May. I don't believe there is anything better than animals to help take your mind off your aches and pains
Speaking of pains Heidi, hows your knee?
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jenn - what 2 trials were you offered? how cool to have a veg daughter who help you with this. My DH and I worked the juicer today - what a mess! We have the smaller breville and managed to splatter the upper cabinets. We made a carrot concoction and a broccoli one. They both came out pretty good. We added apple, grapes, strawberry to cut and it worked well.
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kelben-I use to breed horses (Studly is Petey's dad) and always loved the process; mare care, foaling, that special bond with the stallion. We have Boston Terriers, they are so simialr to the FBs.
I am still walking with a slight limp but I can finally go down the stairs normally (instead of sideways) and my ROM is coming back. I did so much in the pool the other day though that I have a TON of sore leg muscles. I can't really *swim* yet (ROM still a bit too stiff) so I figured I'd just run in place, power walk, etc. in the water. Funny, it didn't seem all that hard while I was doing it, but my muscles today are telling a different story.
Can't wait to get back in the saddle, but want to be sure I won't risk further injury if I do, so will probably hold off another week. I have one horse I need to work a bit before I put hubby on him. He was supposed to be my "spare" for the "pair", but since my BC Dx I haven't had time to train him to drive (he'd jumped a fence with a training cart attached to I need to be extra careful bringing him along).
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Jumping a fence with a cart attached probably wouldn't be very good... I don't know myself, but picturing it with you or hubby in the cart isn't my vision of a leisurely outing on a nice spring day....!!!!!
Bostons are more energy than frenchies, but so darn cute, you can hardly stand it when they are babies... kissing them all the time.
Glad to hear your knee is coming along, my hubby had surgery on his knee, and he was really sore for a week or two, but once it started to feel better things moved on quickly,,, the better it felt, the more he would do and more he worked it the better it felt.
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ok been doing some reading to today on triple neg....feeling a bit freaked out and vulnerable
I am getting FEC-D but no word of taxol? What did you ladies get and should i be asking my onc why i am not getting this. 0 -
Kymn: Most of us will advise you to get at least two opinions before making decisions on pretty much anything, and chemo is no different. Some of us get 3 opinions. That being said, there is a pretty good chance that if you ask 3 oncologists what they recommend for treatment, you'll get at least 2 if not 3 different answers. A lot of us here have had 4 rounds of Taxotere/Cytoxan. Several of us have had 6 rounds of it. Bunches of us have had Adriamycin/Cytoxan, followed by Taxotere or Taxol. And then there are also several of us who had FEC. Hopefully someone who's had the FEC will chime in here, but don't necessarily panic yet. I asked lots of questions before my treatment started because I was reading all kinds of things too, so questions are a very good thing. I thought I wanted to have 4 dose dense rounds of AC, followed by weekly Taxotere or Taxol, but it was explained to me that for "my" cancer, I didn't need all of that. I believe you're in Canada?0
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Kymn: The D in FEC-D is taxotere (doxetaxal), a taxane equivalent to taxol. What you're getting is very typical standard of care for trip negs... 3rd generation chemo, the big guns... you'll be getting it all, no worries!
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yes CC I am in canada, alberta. I believe I am having 3 treatments of the FEC and then 3 of the D after that will be having radiation. I guess I will just have to ask my Oncologist the reasoning behind this. it does get so confusing with all the reading doesnt it
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kelben- no one was in the training cart when that happened. We were still in the ground driving stage and horse was resistant to left turn, freaked at the shaft, got caught up in it and bolted. It was frighteneing but, amazingly, no one was hurt.
kymn- I think Taxanes are generally indicated for TNBC, according to some of the articles that have been posted in here. Might want to ask your onc about it.
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SUZE35 its been a couple days, and boy this list has flown! But, as I was catching up, my stomach was clenched awaiting your future and praying for you. I am so happy for your good news.
I'm still in the hospital, but the fever's been gone awhile. Today I dealt with the worse pain I have ever felt: 3 back-to-back neupogen shots! Man, I couldn't even walk!!! But, motrin works wonders and now I'm better.
I think the worse thing about this hospitalization is that it is making me face the reality of the situation. I have worked all through my treatments so far, so besides the hair (which isn't really that bad), I don't think chemo and BC have affected my life. Well, now it has. It was a real eye opener for me and made me realize how much I HATE IT!!!!!! I hate not being able to do the things that I take for granted as a regular human being, as a mother, as a sister. It sucks and I hate to be sick and why can't I ignore it and it will go away. I don't want to not hug my kids cuz they might get me sick, or comfort them when they're sick, or sleep with them cuz they miss me. That was not part of the deal with this.
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Survivor Im so sorry you are feeling down today. I am glad the fever has gone down though that is great news and you will be home soon with your family. The reality of this does just kind of sneak up on us and whack us once in awhile doesnt it. but we have to keep the faith that once this treatment is all over we will go on living our lives as moms, sisters wives and friends and will be more sensitive to how important all of these people are in our lives. I am starting a journal for my kids so they can know just how much i love them and how much I will endure to make sure I am here for them.
Keep strong, dont worry about missing some work just take care of yourself
Love and light from canada
Kymn
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Survivor2Be - sorry to hear you are in hospital. I'm sending you healing vibes!
Kymn - I had a different chemo than you are getting but there are lots of other women who have done FEC-D on BC.org so I'm sure you'll get good advice/tips here. I think it's more commonly given in Canada but I could be wrong.
Just watching SNL...it's always a hoot!
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Survivor2Be - thank you, it helps so much knowing the positive thoughts that are out there. I am glad you are on the mend. This disease takes so much from us, and I feel like, even when I beat it (not IF), I will have lost this time in my life with my kids.
Kymn - I am also writing journals, one for each. I cry every time I write, but I want them to have something tangible, in my own hand, that they can always turn back to.
In 36 hours I will finally be having my surgery. Now that my first scare is over, I am back to worrying over what I am feeling in my breast, of course. Three weeks ago, I couldn't feel much of anything. Now, there is tenderness and spots of something...tumor? Scar tissue? Ugh. But if it is tumor, then I will just have to gear up for another fight and more chemo. I won't go down easy!
Sugar - I love SNL. We TiVo them all. Right now I'm lost in a James Rollins book. Lots of spy heroics mixed in with could-never-happen stuff. A good brain suck, lol.0 -
LauraJane:
Small world Sometimes seems smaller in Indy!The bracelets were my husbands idea of counting chemo. We found them in the TLC catalog and there were 8 for like $10. Little cheap plastic pink bracelets. I began with 8 and take one off after I finish a round of chemo.
I post the pick on FB and here, (mostly b/c I figured people on FB wouldn't want to see pics of my scary bald head ha ha ha!)
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