Calling all TNs

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  • MBJ
    MBJ Member Posts: 4,352
    edited May 2011

    Moe:  Have you been to the Picture Forum?  This helped me make my recon decisions and gave me a wealth of information.

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  • beccad
    beccad Member Posts: 326
    edited May 2011

    How do you access the picture forum?  I keep reading about it on various threads, but do not know where to find it.

    Beccad

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  • alexanjb
    alexanjb Member Posts: 304
    edited May 2011

    To access the picture forum you have to PM timtam.  You can find her by clicking the member list in the upper right.  I did this recently and she responded right away.  I didn't know what I was looking at though.  Does anyone know if there is a way to know which procedures go to which photos?

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  • MBJ
    MBJ Member Posts: 4,352
    edited May 2011

    Timtam is overwhelmed so you can PM myself, Whippetmom, Lilah, Estepp & Firni.  We are the gatekeepers and help get you set up.  You have to have been on here for at least 15-20 posts and must be willing to be honest and open about your procedures.  It's a separate and very private site from BCO.  Just PM myself or one of the others.

    You can do a search on the Picture Forum by procedure or you can scan page by page and it's usually in the title of each thread what has been done.

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  • dlcw
    dlcw Member Posts: 107
    edited May 2011

    Hi All - just checking in.....had my MX on Monday so haven't been online as much as usual -  had alot to catch up on!  Get my pathology results on the 19th - am really ready to know and plan adjuvant chemo.  My post-trial scans showed continued shrinkage but still areas of uptake so they are expecting there to be residual disease.  Trying to be optimistic and focus on the fact that there will be more chemo and radiation, but am struggling a bit.   I think I'll be able to be more optimistic when the drains are gone and I'm a bit further out from the surgery.  I did not do any recon at this time so I look pretty shocking but am getting used to it.  Does the Picture Forum have 'after' shots?  After the MX, which I think is a fairly straightforward surgery, I am re-thinking my plans for DIEP as it must be really hard compared to this.

    dlcw

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  • alexanjb
    alexanjb Member Posts: 304
    edited May 2011

    dlcw-It is shocking looking in the mirror isn't it?  The things we used to take for granted...I also can't get used to the sort of concave spot where my (very slight) cleavage was.

    I am scheduled for a delayed DIEP June 8.  There is a great thread on here for DIEP 2011.  Most seem to be recovering and healing nicely.  I am encouraged.

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  • MBJ
    MBJ Member Posts: 4,352
    edited May 2011

    dlcw:  PM me and I will get you to the picture forum where there are pictures of delayed, DIEP and also women who opted out of recon.  Gentle hugs and heal up!  Better to have more chemo then to risk complete invasion. 

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  • BarbaraJo50
    BarbaraJo50 Member Posts: 108
    edited May 2011

    So much to read after a few days! So sad for the losses this past week...and the recourrance. The roses are beautiful. Welcome to the "newbies". I have received the most wonderful help and insight here.

    Doing well from the MX on Monday. Weird though, I have a horrible itchy rash on my neck and shoulder. Even went to the family doc this morning. We think it is from "something" during surgery. My eyes were itchy that next morning and I had a red rash on my face but as each day went by it got worse. The only thing different I used was the wash before surgery. I do have a problem with tape too. I guess this is quite minor compared to some. Of course the Dr's just "poo-pooed" it like it was nothing. I will mention that when I see MY surgeon on Wednesday.

    Be Well, Barbara Jo

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  • Titan
    Titan Member Posts: 2,956
    edited May 2011

    Barbara Jo..do you think you may have a latex allergy?

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  • MonikaV
    MonikaV Member Posts: 201
    edited May 2011

    Good Morning girls,

        I haven't been here in a while. I started reading the old post s...... What happened to Lisa(Pauldingmom)? i saw some posts refering to another threat about her.... Can someone fill me in please? 

         Thanks Monika

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  • MBJ
    MBJ Member Posts: 4,352
    edited May 2011

    MonikaV:  Unfortunately, Pauldingmom lost the fight and we are all mourning her loss here.  Hugs!

    BarbaraJo: Congratulations on your exchange!   I would call your PS's office ASAP as you want to get something like this under control immediately.

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  • MonikaV
    MonikaV Member Posts: 201
    edited May 2011
    MBJ: Thanks for the info. I am truly sadFrown What happened ? She had a recurrence? I thought she was ok... Sorry so many questions....
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  • Titan
    Titan Member Posts: 2,956
    edited May 2011

    It's ok..Monika...Lisa (paulding mom)...did have a reocurrence...seemed to spread very quickly...you might check out the July 09 chemo thread for more details..I think that she knew something wasn't right but she was ignored by the docs for awhile...with TN..you never know if it would have helped if she would have been treated immediately or not...it may have made a difference as far as time goes..

    So..I finally got the guts to get my path report...I was scared..basically it was the same as the biopsy report.....asked the surgeon about the angiolymphatic invasion.my report said "not identified"..so I was like..did they check it or was there no invasion??? He said there was no invasion..and to not worry about that...I told him that I wasn't worried..obviously because I just picked up the report 24 hours earlier...soo..from what I have learned on here..3 ways to mets are 1)..lymph nodes 2) angiolymphatic invasion and 3). through the blood.....I may be ok with the first 2..maybe...as far as 3 goes..hopefully chemo took care of that...

    Ah well..as many ladies say on here it is a crap shoot...

     Anyone watching the NBA finals?   I kinda am...wouldn't mind seeing Miami get beat vs. the Bulls...though that Joaquim Noah from Chicago is kind of a freak...he wears his hair in a messy bun to play..funny stuff.

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  • riley702
    riley702 Member Posts: 1,600
    edited May 2011

    I'm still antsy because my path report doesn't even mention LVI, much less say whether it was there or not. I'm going to call my BS and see whether or not it was even tested.

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  • Fighter_34
    Fighter_34 Member Posts: 834
    edited May 2011

    Same here Titan I pray chemo took care of number 3 as well. Embarassed

    After gathering the nerves to talk more openly to my PS (which is what I should be doing anyways) she shared pictures of before and after. I couldn't tell which one was which.

    I look pretty good now and I haven't even had the exchange surgery yet. I must admit the newbies look better than my old girls. I just wanted to add speak to your SURGEON openly and most of your answers can be answered right then and there. Don't be afraid to ask what will they feel like and how much can hubby play with them?

    GOOD LUCK....Tongue out

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  • Suze35
    Suze35 Member Posts: 1,045
    edited May 2011

    Just checking in...



    BarbaraJo - I hope the rash is better! Definitely don't let it go, infections can come fast and furious.



    Riley - in your shoes, I'm not sure I would push for the information. You have done everything you can do, and maybe it would just cause needless worry...? I wish I could "unlearn" some of my path report. But On the flip side, I can understand wanting as much info as possible.



    Titan - I'm from South Florida, go Heat lol. I'm more of a football fan myself (fanatic actually), but being in Mass, you can't help but follow all the sports.



    ~~~~~~~



    Just hanging in, doing my rads. Freaking about every little twinge. Had some twinge-y pain last night under my right ribs and that got me going. But it followed a higher fat meal, so could be gallbladder. Dealing with the heartburn and nausea, but I haven't lost my appetite. Sigh, cancer sucks. I hate what I've become, moving from symptom to symptom, always looking for that zebra...



    Started PT for my mild LE today, that was good.



    Crappy rainy week here...hope someone is enjoying sunshine somewhere!

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  • MBJ
    MBJ Member Posts: 4,352
    edited May 2011

    Fighter:  I am so happy you found a great PS-communication with our dr's is so important.

    Suze:  Hang in there and try to focus on the fact that the rads is doing it's job-kicking what is left of your BC.  Hope you get a little sunshine to chear you up.  The sun is out here, but it has been quite chilly the last couple of days.  Looking forward to warmer weather.  Hugs.

    My onc told me I have a 60% chance af remaining healthy and it has been that way from day one, so I try to focus on the 60% instead of the remaining 30.  It's such a crap shoot.  Trying to take each day as it comes, trying to eat healthy and to stay active.  Of course I am still getting more and more "gifts" from chemo--my thumbs keep locking up either straight or bent and it's quite painful.  Anyone else have this?  Ouch!

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  • GuyGirl
    GuyGirl Member Posts: 182
    edited May 2011

    MBJ - I don't have any trouble with my thumbs but my wrists bother me and it seems to come out of the blue, one minute I am fine and the next they just ache like a son of a gun.  I also still get some pain in my ribcage, but it seems to go away.  I remember the radiation oncologist telling me having pain for the next year would not be unusual. 

    Before I got sick I was feeling so good, no aches and pains and was sleeping like the dead, and I had lost a few pounds.  Then I found the lump.  So now if I wake up with some part of my body hurting then I tell myself that I am ok, it is just old age.  The days that I feel really good make me worry.  Sigh!

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  • MBJ
    MBJ Member Posts: 4,352
    edited May 2011

    guygirl:  The 3 years prior to my diagnosis I felt like hell, but yours was much smaller and an earlier stage--it just hadn't progressed enough to let you know something was wrong.  It has to get better, right?

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  • Kymn
    Kymn Member Posts: 999
    edited May 2011

    Hi girls, sorry for all the aches and pains going on right now. I get alot of cramping in my right foot. very weird. I had suspected lymphatice invasion....hmmm...nice so i dont know like you said crap shoot. I am back in the chair on thursday, not ready, I am at number 4 now 2 more after this one. Am switching to Doxetaxol this time so maybe it will be easier I can only pray as my Onc has yet to find a medication that keeps the nausea away from me. I find am so busy the 8 or 9 days that I feel good, I am craming everything in I can but I am feeling tired today. Hope everyone has a great SE day

    Hugs Kymn

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  • gillyone
    gillyone Member Posts: 1,727
    edited May 2011

    I had been feeling absolutely great before dx - look at my stats. How you feel is no indication of how bad things are. I have never been more shocked than when I found the lump.

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  • hydeskate
    hydeskate Member Posts: 297
    edited May 2011

    I'm just getting back to where I was before the dx (@29), still having symptoms like I am still on Chemo like dry mouth, dry skin, swollen joints the doctors think its an auto immune disorder, and apparently I have the markers for Lupus and Sjogren's Syndrome won't know for sure until they run more test at the end of June with the Rheumatologist. Apparently every bad gene in the family tree I have wxpect thyroid my sister got that one and I got the BRAC 1 gene......lol I am the family Guinea pig.

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  • tracie23
    tracie23 Member Posts: 598
    edited May 2011

    hydeskate, I have such horrible leg aches I am on a heating pad most of the day. The dr.s keep saying it's part of the chemo but I don't know. It is 24/7 . I sure hope you don't have Lupus or Sjogren's syndrome...

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  • tnbcRuth
    tnbcRuth Member Posts: 454
    edited May 2011

    I couldn't figure out why I couldn't recover from this ordeal, thus, I've internet diagnosed myself with Sarcoidosis... I have every symptom of this autoimmune disease.  Good news is it will eventually abate. Bad news is that I went to 5 specialists with all these symptoms, they found nothing and the bills are now coming in.  

    I'm sure of 'my' diagnosis because I had a traumatic illness 15 yrs ago and my body responded with Rheumatoid Arthritis, and I spent a year in a wheelchair.  And then it just went away (which RA doesn't do according to the dr's. )  I'll take the Sarcoidosis over RA any day.  I'll bet the autoimmune response after cancer is more common than we think. 

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  • Titan
    Titan Member Posts: 2,956
    edited May 2011

    Seriously Gilly..you felt fine? that really does suck.(not that you felt fine..but that you didn't have any symptoms)...I thought I was going through menopause..just didn't feel right...listless, no energy...just blah.

    Suze..that's ok.you can cheer for Miami....somebody has too..ha ha....NE Ohio and Boston, MA have their rivalries too..its fun...I work for a grocery chain (local to Ohio). and we buy  our fresh fish and frozen fish from your state..They definitely love their Patriots, Red Sox and Celtics..its alot of fun.  I would love to come up to your state and visit sometime..

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  • Titan
    Titan Member Posts: 2,956
    edited May 2011

    Ok..I was bad..a friend of mine on FB posted a "dance" in the streets of Columbus for a Cancer hospital located there.  said something about "if you need a lift" watch this..well I watched it...Ok..it was nice...but I did post that "that was nice but we need a cure for BC NOW..thousands of women are dying from this"....I later felt bad about posting that and deleted my comment...

    It's not like I don't appreciate the attention..but dang...how can dancing in the streets cure us?

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  • MBJ
    MBJ Member Posts: 4,352
    edited May 2011

    Titan:  I feel the same way-everyone keeps talking about awareness but nothing about a cure.

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  • alexanjb
    alexanjb Member Posts: 304
    edited May 2011

    yeah, there are a lot of "good causes" out there, races, dances, walks....there is a radio commercial on in my area all the time about "feeling disoriented and afraid" after a bc diagnosis, (no kidding)  I don't want to be an event, a cause, even if it is currently a popular one, I WANT A CURE.

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  • Titan
    Titan Member Posts: 2,956
    edited May 2011

    I am running in a 5K this summer..for a 29 year old that died of TN just after she had her second baby..it breaks my heart...ALL of the $$ goes to TN research..but that isn't the only reason I'm running..I like to do this...I have run for the United Way, kids in wheelchairs, you name it..I just like to run...this 5K will be a little different though..it's personal...it hits me right in the gut...

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  • BernieEllen
    BernieEllen Member Posts: 2,445
    edited May 2011

    Morning everyone, i can't get to copy and paste info on to here.  Any help please

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