Calling all TNs
Comments
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Kymn, Hang in there.March 18th will be a year I had my first chemo, I feel healthy and energetic. Believe!!!!! You will be ok. (((((HUGS)))))0
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Kymn: I'm not sure what protocol exists in Alberta for BRCA testing. It is available in Ontario (and for no charge) if you match certain criteria: family history of BC and/or ovarian cancer or being of Ashkenazi Jewish descent. I have a sister diagnosed post-menopause and an aunt diagnosed in her 80s and some Jewish ancestry somewhere - I don't think I technically fit the criteria, but they stretched it a bit given my TN status. I asked for results prior to start of my rads, because if it had come back positive, I likely would have opted for double Mx instead.
Titan: Yes, it's so hard to know how young men are taking things. Both my sons tend to bottle their feelings. Usually I went to chemo alone, but on one occasion I was waiting for hours, and called my husband at the office in angry tears - "they shouldn't make people with cancer wait here so long!" - he called my son at home after school and told him to get over to the hospital pronto to cheer me up. (we live a 15-minute walk away). I will NEVER forget the way my heart lifted when I looked up from my chemo chair and saw my lovely 17 yo son in front of me! All my stress and hurt dissolved. I kept a journal about him all during his childhood (a gift for his 18th birthday) and that day was a highlight.
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I posted this in the starting chemo in oct 2010 thread also.
Alrighty ladies, here are the finalized plans for my surgery. BMX with immediate TEs, on Monday, overnight stay and home on Tuesday. I will then followup with the PS and probably the BS the next week. The PS says that they will satrt with 100 cc in the TEs and fill between 60-100 ccs every week until Rads start or I am happy with the size then we will stop. Fills or recon will be after any tissue damage from rads has healed.
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I agree about sons bottling things up. Both my sons were extremely supportive but, get on the subject of recurrence or going Stage 4, and they just did not want to hear it. So, denial works for care-givers too.
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Aw, Titan, your post about your son showing up at chemo almost made me cry. Boys are the sweetest. I don't have children, but have a nephew and niece that live nearby. I adore them both, but my nephew is my favorite.
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Kymn & Suze you guys rock! Now go and kick some cancer butt!!! We are right here for you guys!!
LJ-painting #4
I can't wait to have teenagers!!! Getting everyone ready this morning was a NIGHTMARE! Oh the crying and complainting from little people!
My legs you guys feel like I have ran a marathon but I haven't. Oh the sore muscles from TAXOTERE when will it ease away??? Calling the nurse today to report it again and ask for suggestions.
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MRI was all clear!!!! Yay!!! It was so hard to walk around with those symptoms and believe it could be anything else. Now I have no idea why I am having them, except it isn't brain mets
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THANK YOU ALL for your support and kind words. It really helped calm me down. Now I am just sending up positive thoughts for a good path report after Monday.
Titan - I used to live close to Windsor in Lansing MI. It sounds like youve done a great job raising him, and he'll have a blast without going too crazy.
Fighter - are you still on chemo, or having residual pain from the Taxotere? I had Taxol and didn't suffer too much, so I'm sorry I can't help you - but I hope you feel better soon.
Becca - good luck with your surgery! I think we now go on the same day.0 -
Suze35- YEAH!!!!!!!!!!!!!!!! So happy for your good news. Good luck on monday with surgery.
Take care ((((HUGS))))
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Suze- With our dx's being so close I would not doubt that we are scheduled the same day or very close. I think that some of my early stuff went so fast, but part of that has to do with me working in a hospital, too. I just would not let anybody rest until I had that pathology report. I must have bothered the Radiologist everyday until I actually had the path report from medical records 10 minutes before he called me. I was on the phone that afternoon with a BS's office and had an appt. with her for early the next week. From Oct 1 to Oct 15 I had seen the BS, MOnc and a general surgeon (for the port). My Bday was on the 24th, port insertion on the 25th, 1st chemo on the 26th. October was a blur of appts. I Dr. appts that month than I usually have in a year. I am ready to get to the spot whrere I don't see every one of them, all of the time.
Oh, btw, my PET Scan only showed 1 of the lymph nodes "lighting up", and the breast mass had shrunk by over half! I may have posted that part before. I am still blaming reposts on chemo-brain.
Beccad
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Suze35: Congrats on your good news via your MRI! I hope both you and Beccad sail through surgery and recover quickly. I shared my surgery date with MonikaV.
Monika: So glad to hear you are feeling healthy and energetic. I think we are all a pretty resilient group of women. What a difference a few months make.
Laurajane: Number 1 is my favorite, but I love all the paintings.
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Becca - that is great news about the PET! I haven't had any pre-surgery scans as my BS said it doesn't change course of action. A little nerve-wracking, but I understand her reasoning.
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Suze finished chemo on Feb. the 3rd, however still dealing w/ lingering issues. Oh the joy...
Great news!!
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Suze35: So very happy for you. Enjoy your weekend!!0
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Hi All -
First - Suze35 I was so happy to see that your MRI was clear! I can't imagine the relief that must have brought you....
Beccad - great news about your PET - hope the surgery goes smoothly.
I had an upsetting day yesterday - was the last dose of my Cycle 4 of the trial and my onc added an U/S because we did not feel any additional shrinkage from Cycle 3 to 4. The results were not conclusive in any way as far as measuring shrinkage. Apparently, my original U/S had two shots of the main area - one of the tumor and one of some 'satellite' tumor, but on different screens. The U/S they got yesterday had one shot of the whole area. They were unable to tell if the area now is the initial tumor and satellites shrunken into a smaller area, or if it's just that the satellites are gone and initial tumor is about the same size. She did reiterate over and over that on clinical exams, it's softer, less dominant, etc. and that the U/S can't differentiate between scar tissue/healing tissue and cancer. So, I went in hoping for some reassurance and left wondering if all it's been doing is keeping it in check but not killing it......MRI has been ordered for next Tuesday so that should be a better indication of activity and they have a good initial MRI that they can compare to. So, now I'm trying to focus on NOT obessing about it and waiting to see what it says. Two more rounds to go (6 weeks) of the trial then I'll have the lump and SNB and get some real info but it would have been nice to get a boost of optimism yesterday.
My daughter has her dance recital this weekend (2 shows sat and sun) so that will help keep me busy and focused on life as opposed to focused on cancer. Trying to hang in there and stay positive. Hope you all have a good weekend!
dlcw
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Suze and Beccad- Great news for you both!! Best wishes on your surgeries and a speedy recovery!!0
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Hi everyone, I submitted #2 and #4. The art show is tomorrow. I've now been asked by two more people to have my own show one up in Indy and one down here in Bloomington. I am really excited.
Speaking of sons, Titan, I think my son holds a lot in too! He did go to chemo with me a few times, he actually wanted to cut school to go with me. It just melted my heart. My daughter wanted to go also but it didn't work out because of my grandson.
Suze- I haven't been able to stop thinking about you. I am now so happy to hear the good news.
dlcw- I'll be thinking of you next Tuesday I hope the results are good news for you.
On a different note. It is really amazing how my way of thinking about life has changed. I am really focusing on the positive now and realizing how much bull s**t I've tolerated during my chemo and all the BC crap. I am finding it easier to rid myself of the negativity of others. Hmmm? In particuliar my so called long distance boyfriend. I feel stronger now than I have in a long, long time.
I wish all of you a fabulous week-end.
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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!0 -
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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