Calling all TNs
Comments
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Thank you all, for the good wishes.
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Good afternoon ladies, wow what a week this has been and official treatment hasnt even started.
Michelle how was your first chemo treatment (I believe it was your first am new to this thread) hope it went smooth for you and you are feeling alright.
Titan I start my chemo on March 17 as long as the MRI I am getting on the 14 doesnt show anything else.
LRM Yes you are right I had to make this decision as it really is our only option at this point to fight the beast isnt it.
Kelben I will look into that and see if I can get it done. I dont really have family history my grandma on my moms side has it post menapause but thats it and no jewish decendents.and only 41.
Monika. Thanks for your encouragment did you find it all went by fast? Is your hairing growing back nicely yet?
Fighter thanks I will do my very best to fight this.
And to all the other ladies thank you for your support I will get to know whats going on in here eventually
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I have a question for the TN ladies.... If you have had a oophorectomy how soon after chemo did they want you to have the procedure? I am going to be talking to the gyn oncologist next week and I think I want to wait 8 months or so to do this. Would that be to risky or does it really matter? Thanks for your imput
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Suze35: I am SOOO very happy for you! We so desperately need this wonderful news on the forum!! Wow, makes ME wanna celebrate!!
dlcw: Oh I hate hearing this news. I will be praying for wonderful results on Tuesday, and hope you are able to get your mind on other things this weekend to make the time pass quickly.
tracie23: I'll raise my hand to this question. I had an oophorectomy this past Monday, along with exchange to implants. My last chemo was 1/31.. ooph was 2/28.. so they waited about a month. As for how long is too long to wait, well that is really the question of all questions. Are you BRCA+? I am, and that's the real thing that was worrisome. It's hard to monitor for ov ca. I've never had any issues, and they did a vaginal US prior to surgery just to get a better look. All looked fine, but again, ov ca is hard to find at an early stage even if you're looking for it. I would have loved to of waited to do this surgery and give myself a little more time with estrogen (44 yrs), but my genetic predisposition made me feel as though I needed it now. Plus, I really didn't want two separate surgeries, so now I'm done. Get a couple of opinions from onc's and gynecologists who perform this surgery. Consider if you've got a large family history of ov ca, and also think about it if you are BRCA+. A lot of women do wait to do the surgery... it's a tough call, so go with what your heart tells you after your 2-3 professional opinions.
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Suze35 & Beccad: WAHOOOOOOO!!!! I love good news before a long weekend!!!! congratulations on your fantastic news!!!
LauraJane: so sorry your BF hasnt been a very good friend. BC really does a number on us all but it also makes us less tolerant of BS. Hugs - congratualtions on showing your art. You really should be in a gallery--your talent is just astounding!!!
re Pregnenolone: I found a link that gives you the pros and cons of taking this over the counter hormone for libido. I requested a complete blood work up fro my dr. which they did today so that I can see if I will benefit from it. It can either be great or not so great for us, depending on our individual histories and problems:
http://intelegen.com/nutrients/pregnenolone_and_mental_function.htm
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cc4npg, I am BRCA 2+ my family has more of Breast Cancer history than any ovarian. How are you feeling from just coming off of chemo and than having surgery? Do you feel run down do you feel like your healing good? Thank you for your opinion I am really struggling with this...
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So glad to hear everyone's good news!
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Studly, Petey and Imp posing for a "mudshot".
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Suze/Becc - so glad for the good news!!! Dance, laugh and celebrate.
Fighter - I had a terrible time with Taxol, I had a lot of neuropathy and leg pain, if I remember it lingered for several months. It was slow, but I do remember being at work and realizing that I wasn't limping......it does get better. (((hugs)))
LJ - I'm so glad to know that you're feeling happier and realizing you deserve to be treated like a princess. And........if I didn't already tell you I LOVE your paintings.
My update: I took two self pity days earlier this week and am feeling so much better mentally. I have decided that I do not want to participate in the two trials I was offered and will more than likely start with Xeloda, but only if my onc will agree to scans in 6 weeks, not 12. If not, then I think I'll start on something else in the Taxane family.
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You guys really are great! Thank you for the good wishes. My DH was trying to be supportive, but only you guys know the real fear we all suffer from this disease. I'm going to have more than one glass of wine tonight to celebrate, that's for sure!
This board moves fast! I'm so glad we all have a place to come and talk where we can be ourselves, good news, bad news, whatever comes. Have a great evening!
dlcw - please have hope! Ultrasounds are not very accurate for sizing, and your doctor is right - scaring and dead tissue isn't easily differentiated. When I finished my AC, both me and my doctor were very concerned that we couldn't feel any change. My MRI showed a 50% reduction! So the fact that you can clinically feel a change is great, and I'm sure you'll have a great result with your MRI.
Laurajane - good for you for getting the negativity out of your life! I'm sure it wasn't easy, but you know, we don't have time for BS anymore, do we? Congrats on your art - you really are so talented!
Heidi - that picture is amazing! I love horses, yours are so stately.
Jenn - while I was saddened to hear your news, your attitude has been so amazing. I'm glad to hear you've decided on a course of action, and hope the Xeloda works well for you. Kick that cancer's butt! -
Jenn: I am glad you have made a decision as to which way you want to go with this. I hope the Xeloda kicks the cancer to the curb and we will all be here to cheer your on!
Heidi: I am so jealous! I used to ride when I was growing up as I had friends with horses and yours are just beautiful and regal!!!
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Count me in on the good wish beccad!
LJ:...I absolutely LOVE my son...on the other hand I worry about him all the time..My daughter is so much more independent...she doesn't seem to need me as much.
Here's a story (you guys don't have to read it)..but the night b-4 my lump my daughter wanted to come home from college to be with me..this was 10 at night...we cried on the phone..I told her that I wanted to go to bed to try to get some sleep and that I would be worrying over her driving home..I just told her I wanted to see her b-4 I went into surgery..she agreed with that...so anyway..while I was waiting for surgery she showed up just smiling and happy (I think my dh told her no sad faces)..I still remember seeing her beautiful smiling face before I went into surgery).
On another note..I was a total BITCH when I woke up..I demanded to be to be released NOW...
Do you guys ever think about how much crap we have all gone through? And put our loved ones through? That is what I hated the most..that they were sad because of me...
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Kymn- My fingers are crossed that your MRI doesn't show anything. I think you have made the right decision as far as treatment goes.
MBJ- Thank-you. You are a sweetie. I'll look at that link but my libido is great I don't seem to have any problems with that so far, but, maybe I really do I haven't had any testing done.
heidi- Ohhh! Such a great photo. I just want to hug your horses. What a great pose.
jenn- Did you already do Carbo/Gemzar? This just breaks my heart that you are going through all of this. Kick that cancers butt as the other gals say, I mean it too! I bought a card recently made by Hallmark they have a whole line out for BC gals. I have it cut out and hanging on my wall and it is a cartoon character called "The Cancer Vixen" and then the bubble says "Cancer I am going to kick your butt" I look at it every time I walk int my dining room and think of all of you. Let's kick it together.
Suze- I had two glasses of wine at dinner and then another to toast you!
Titan- My kids are so similar to yours. My daughter is very supportive, strong and confident also. I do worry more about my son, though. He is very supportive too but seems to really hold a lot in. your post got me thinking. I have been so self absorbed with this BC crap. I never used to be this way. I need to be the happy go lucky positive supporting thoughtful to others kind of chick I used to be. I cried more tears when my family was sad for me, it just breaks my heart that my kids had to go through any of this fear and anxiety because of BC. Your post really hit home. BTW I am more of a bitch to others now than I ever have been in my life or so I have been told. Life is too short for BS.
Life is good unless we decide to make it great!
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Suze35: Doing the happy dance !!!!!!!
Tracie 23: I finished chemo 9/23 - Had BMX 10/25 - And ooph on 12/1 . My doctor wanted out ASAP
Kymn: Yes it went by fast and my hair is growing fast. As a matter of fact I colored it today.
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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.
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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.
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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
fight for my kids -
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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