Calling all TNs

LRM216

Laurajane:

Your painting are beautiful.  I felt them so deeply they brought tears to my eyes.  What a talent you have.

Titan

Laura..your paintings are awesome..I keep staring at them...you keep soo busy..I don't know how you do it..with your traveling, your job and your painting...and well..you know the stupid cancer part...

Linda..love your new pic..I've got to get another one posted..my pic is 14 months old!  Now I'm fatter and have more hair!

Jenn..agree about all the doctors/chemo/rads..etc..then just onc appts...but you will get used to it....at first it is weird....You still get to see them every 3 months right?  So..they are not letting you go...believe me...

Titan

Oh..about the sex thing...I don't think I had sex during treatments..if i did I don't remember it all..I know they gave us a booklet on sex and breast cancer...funny stuff..like I was going to read THAT!..My DH wanted me to read it but I just pitched it...

Actually between you and me...our love life isn't too bad...I consider it a celebration...

LRM216

Titan:

Thanks - my kind grand-daughter finally got around to taking a pic of me after my asking her since I was diagnosed two years ago!  I only pay for the web cam, the cameras, the phones with all the bells and whistles, etc. 

As to the sex thing, since my chemo and the all the crap it brought with it, I have never thought of it again and don't miss it at all.  Of course, also being a widow helps in not thinking about it, lol!

MBJ

Linda:  I like to share things I have learned with everyone, but lord I am human and no angel!  I try to remember to take my supplements, I try to eat organic when I can, I try to stay away from stuff I shouldn't have, but it isn't easy.  Having chemo brain doesn't help.  There are things that I have learned that are useful and helpful in the battle against cancer, but the truth is, I was pretty heallthy prior to BC and I still got cancer!  You do the best you can with the tools you are given but the world would have to change quite a bit for there not to be any cancer in it.  There are chemicals in the air, the water, the soil, our foods, everything and we cannot stop eating, breathing or drinking water.  We can only make our way the best we can.  I know women who have eaten healthier than myself, women who never drank or smoke, women who have always exercised and took care of themselves and still got BC.  It's a crap shoot!

MBJ

Laurajane:  Oh, please don't make me choose because I love every one of them!  They each struck such a deep chord in myself and they are so beautiful.  Pregenelone, btw, is over the counter.  Not sure if I spelled it right but I didn't make it to the store or the bank today, but it's supposed to be our libido in a pill.

MBJ

dlcw:  My tumors didn't progressively get any smaller after 4 x TC even though I did two more.  It seems after surgery that what was left was dead cancer cells.  I hope the same goes for yours!

riley702

My vitamin D levels are down again. My onc didn't test me until I asked him to early in chemo (thanks, ladies, for that tip!) It was <20. Even though I knew by then the D2 is pretty ineffective, he put me through several cycles of those 50,000 iu doses of D2 for 5-8 weeks, while also starting me on Os-cal, which is 400 iu's/day of D3. That got me up to 20, so I started taking 5,000 iu's/week of D3 on my own.

That popped my level up to the 60s, whereupon my onc freaked and said that was too high. He's apparently in the group that thinks your levels should be 30-50, not the 60-100 group. Well, my level just came back 12. And now he wants me to take 50,000 iu's/week of the D2. Arggh! The D2 doesn't seem to do anything for me. Would 5,000 iu's/week of the D3 be a reasonable substitute? I've done it his way for almost a year, and he still hasn't stabilized my levels, so I think I'm going to take the reins here. I will still get levels drawn every 3 months.

kelben

Laurajane I love your paintings you are very talented, my fav. is the one on the beach... kinda been there.

Chocolate or no heaven....wait.... chocolate is heaven

mitymuffin

Riley702, I take 5,000 IUs of D3 daily. At last testing, it had brought my D level into the 30's. My Doc also gave me the prescription 50,000 D2, and said that our bodies make D3 out of the D2, but I don't take it. I do take the D3 daily.  It is good that he is testing you every 3 months.

Babs37

Laurajane- Beautiful paintings! My favorites are #1 and #2. I see myself in #1 at the beach last september, thinking, eyes closed, about what would be waiting for me when I got back, as I was about to start chemo........... did alot of thinking and crying during that week in Daytona......... 

Thanks everyone for your personnal experiences with surgery comments. It really helped me. I try to do my arm exercises more this week and I hope it will help. But it still is very uncomfortable.....  

Teka

laurajane,

#2

Anonymous

LJ- #1 clearly shows the subject matter, but I like the feeling depicted in #4. Will the viewers know these were done by a cancer patient? It's a question of subtly, IMO, and how clearly you want to get the feeling across to the viewer.

#1 is obvious, #4 is subtle, yet dramatic--- made especially so by having experienced BC demons and agony personally.

Anonymous

Irr, cc, MBJ, Suze, fighter -- all who advised:

Thanks so much to for those wonderful suggestions. Tomorrow morning is my first chemo, so I'm off to the store now for juices, low salt soups/broths, Colace, Claritin, ibuprofen, etc. I also *really* appreciate the encouragement. Yep, doable. Yep, I know...it's just this first time and then I think I'll chill out a bit.

Since I can be a control freak, it feels good to shop for the supplie. Like I'm doing something to, hopefully, make this easier - for me and my DH who will be with me Thursday and Friday. He's putting on that confident front for me, but we've been together a long time, and I know inside he's nervous too. But I'll take his bravery 'cuz mine wavers. LOL.

Of course, I take what all of you have said very seriously and know it will be ok. My DH and onc can tell me that and it means something, but it means so very much *more* coming from you - women who have DONE this. And some of you have weathered so much more. I gain my strength and confidence from you, and the fact that if I come here at 2am worried about a SE or my first hot flash or scanxiety, someone here knows and understands - for real, not in theory.

I just took my first two decadron. They seem like such tiny pills. The first pharmaceutical warriors to enter the battlefield of my body since all this started. Get to work little pills, I've been waiting for this.

Suze35

Michelle - wishing you the best with chemo! I HATED the Decadron, and by the end, only took a half dose with my chemo, that was it. My onc thinks steroids are overused, so as long as I didn't need it, she was okay.



Laurajane - I loved #2, it really touched me.



On a good note, my surgeon is moving my date up to Monday the 7th. Yayyyy! I know I have quite a bit of scar tissue in my breast, but there are some new areas that have come up in the past two weeks that concern me. Just want the darn thing off!



Question - did those of you who are married/attached have disagreements about reconstruction? I'm adamant about what I want - full BMX with delayed TRAM, but DH is pushing back that I should have considered skin sparing. We've had a few knockdowns over it, where I basically said my ultimate goal is to live, not have great looking tits, and it was my body my choice. We've hashed it out, with the therapists help, but just curious if I'm the only one who'se DH voiced an opinion. I hate to make him look like a jerk - he is actually really great... I guess everyone has their thing.

lrr4993

Good luck Michelle!  I am sure you will do fine.  Hopefully you will be as pleasantly surprised as I was at how easy it is. 

Those tiny decadron pills pack a punch.  I hate those little things.  They made me shaky, red-faced and hot (prednisone does the same thing to me).  Do you have ativan?  I had to take the ativan to be able to sleep while on the decadron. 

Babs37

Michelle67- Good luck tomorrow. I remember how scared I was on my first day of chemo but you what, it went really well and every treatment after too. I'm sending you calm and relaxed vibes and will be thinking of you tomorrow. You can do this! 

 (((HUGS)))

Isabelle

Suze35

Becca - I wanted to add that my onc wants my port to stay in for now. She doesn't think I'll need more chemo after surgery, but she wants to be sure. I am not getting any pre-surgery scans, so we won't know what is up until afterwards. I plan on having it removed when I do my reconstruction. I was told they wouldn't have to put me out to remove it if I choose to do so before then.

MBJ

Michelle:  Before my first chemo I was a mess--I was surprised just how easy it was.  It wasn't enjoyable but I kept telling myself that the chemo was doing it's job to kill those cancer cells and that I would survive.  Chemo is doable but unpleasant.  We are all sending you many good thoughts your way.  Hugs!!!

Suze:  I fought a battle with my DH, too.  I also knew what I wanted and fought to have that procedure done.  Skin sparing is great, nipple sparing is even better, but not all of us have that option.  From what I understand, if the cancer is in an isolated area the first two options are very doable.  If the BC has completely invaded your breast and it's very close to the skin, then you have a much higher risk of having the cancer return.  I had three very different opinions from three very good dr's and I am happy with my choice, and now my DH is too.  The tram surgery is a more complicated one and wasn't really a necessary surgery for me but if it is for you, living a good long life is more important then anything else.  Do you have access to the picture forum yet?  This really helped me with my choices and I could also show my DH what the final results look like.  He was quite relieved and was surprised by how little damage was done to my body.  Hugs!

Suze35

MBJ - thank you for the perspective. I have/had multifocal disease, both tumors 4+ cm, along with positive nodes. I am just not comfortable leaving any extra breast tissue if I don't need to. As a personal choice, I wanted to avoid implants. I originally wanted a DIEP, but my PS thinks the risk of failure is too great for his comfort, so suggested the TRAM. I'll ask for access to the picture gallery, definitely. I've seen TRAMs and like the outcome, DH is just concerned that I won't down the road (so he says). As it stands, he has come to terms with my decision, I just hope he doesn't hold it against me down the road, sigh. Thankfully we have a good therapist...

MBJ

Suze:  PM me and I will help get you to the picture forum.

Kymn

Good Morning this is my first time posting on this thread some of the other ladies suggested I come here for some advice. I was diagnosed Jan 10/11 with IDC had a lumpectomy with sentinal node biopsy and the margins werent clear,the path report said no lymph node involvment but lymphatic channel invasion strongly suspected. Had a second lumpectomy 2 weeks ago and they got it all...which is great but I found out that I am ER- and PR-. Even with that though my numbers are apprently really good. My onc said that right now with no further treatment (well rads of course) I am sitting at 84 percent of no reaccurance at the 10 year mark. He said those were great numbers.But if I choose to do chemo, and he is giving me the choice which is hard, then my percent goes up 5 to 7 more. I was just wondering if any of you were put into this position and if not what you would do if you were in my position being negative and all. Please be truthfull and blunt I am torn between my decision. Oh I am a 41 year old mother of two.

thank you

Kymn

TifJ

Kymn- I am 45 with 2 kids ages 5 and 8. I was given a choice between lump and mx, but was told chemo was necessary. Triple negative is aggressive and chemo works very well on it. I chose a mastectomy only because I had 2 different areas to remove, one IDC one DCIS. I decided to throw everything at it-my kids need me. Deciding whether to do chemo or not must be very difficult. Best wishes with whatever you decide!

Tiffany

Anonymous

Kymn- with LVI and initially unclear margins I think I'd go with chemo...

cc4npg

Michelle67:  Good luck with your first chemo!  As everyone else has said, the majority of us were really a nervous wreck prior to our first chemo, but the actual treatment is easy.  The side effects may not be severe at all, you just never know because it works differently on each person.  I hated the decadron too, and it can give you some vision changes, so if you think your vision is being affected, you're probably not imagining it.  With my decadron, I took 4 mg the night before, then 4 mg late afternoon the day I got treatment.  I was supposed to take 4 mg every 12 hours after treatment for 2 days, but I actually took 4 mg the first day out and then split the pill in half and took only half the second day.

Kymn:  My onc pretty much told me the same thing you're hearing.  I got two opinions.  I had 3 mm triple neg IDC so I was indeed a gray area.  I was 43 at dx with a 3 yr old.  I decided to have chemo for a couple of reasons.  First, I didn't think I could forgive myself if my cancer came back and I hadn't done the chemo.  Second, my onc explained that while the odds were in my favor for no recurrence, there was no way of telling "who" would be in that small percentage that needed the chemo for it not to come back.  I had 4 rounds of TC, finished 1/31.  Even without being BRCA+, I would have done the chemo.  We only have one real chance of kicking cancer's butt.  If I had been older, my onc said she wouldn't have been nearly as much in favor of the chemo.  But since I was 43 with a small child, she wanted to encourage me to do everything possible to avoid a recurrence.  It was doable, but in no way a walk in the park.  Everyone reacts different to chemo, but whatever our SE's may be, we determine to find ways to ease them and get through treatment.  Being BRCA+, I chose bilat mx and just had oophorectomy/exchange surgery this past Monday.  It's been one heck of a ride, but now I really feel I'm able to recover and move on. I would encourage you to really consider the chemo.

JenC

Suze - I had an argument with my DH over the same issues.  What kind of surgery, what kind of implants but the argument was more along the lines of me wanting to know is opinion and him saying whatevery you want, not my decision but we did both agree that the tram flap was an unnecessary surgery.  I had skin sparking but no nipple sparing:(  It is a hard decision to make but whatever your decision do what is best for you.

Teka

Welcome! Kymn,

I had lumpectomy, cancer free sentinal lymph nodes, and haunted with foci suspicious for lymphvascular invasion are present.   I am part of a Clinical Trial E5103, and had AC+T chemo with Avastin, 6 weeks radiation, and last dose of Avastin on St. Patrick's Day.   I am Grade 3, which is very aggressive cancer cells.   I've been comfortable with doctors who don't leave it up to me to make decisions about BC treatments.   Age 61.

Sugar77

Welcome Kymn! I just responded to your post on the Canadian thread.  

tracie23

Hi Kymn, I am 40 I have a 9yr old daughter,  I am TN with BRCA 2+ with a strong family history, I ended up having a double mastectomey and I did 8 rounds of aggressive chemo as a preventative. I will soon be having the oophorectomy. Chemo was tough but I am glad I did it. I felt like I had to much stacked up against me. I also never want to have to do this again. My mother and my aunts all had the 2nd breast cancer come back 10 yrs later and with other complications I don't want to mess with this if I don't have to and Chemo is hard and I certainly don't want to do it in my 50's or 60's. My One Aunt is BRCA 1+ no cancer ever 68yrs old and she had the ooph and this month is having her breasts removed..... she was here at x-mas and I ended up in the hospital with low blood count,  horrible side effects and decided she never wants to go through what I have at her age. There is so much to think about but my BS and Gyno didn't give me a choice. I wish you well with your decision.

Titan

Tracie..did you family have chemo??

Kymm.you said to be blunt..so I'm going to be..do the chemo...yes..doing chemo does suck..you lose your hair..you may be a little weird for awhile..you will need help at home with your kids while you are going through it...it is scary but..you can do it..(or least try it.  I dunno..I think that the busier I was during chemo the better I was...

I don't know..my dx is about the same as yours (except I was grade 3)...I did the chemo..and I'm ok now..

My kids are 20 and 22..and even though they are not babies anymore..I still want to be with them....you ladies with with the really young ones..well..it breaks my heart to hear that you guys have to go through this with babies...