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Comments

  • kathyrnn
    kathyrnn Member Posts: 366
    edited October 2011

    Teka, I do. I can get all my tests and blood work on-line from DF, and I print them out and give them to my primary. I've decided I'll pick and choose what I want to send from the primary to the onc.



    KS, you'll definitely appreciate that scene in Five then, lol

  • mccrimmon324
    mccrimmon324 Member Posts: 794
    edited October 2011

    Christina, I think it's great that you are involved in a dog rescue, a few times I've tried to volunteer at our local animal shelter but they don't need my help when I can give it, they need the help during my working hours.  I would love to foster a dog but we have 2 and I know that neither my husband or myself would be able to give the dog up once it came into our house.  My husband has such a tough exterior but he has such a big heart for dogs & animals. 

    Best thing to happen to me today, husband noticed I may have some peach fuzz on my head! 

  • HeidiToo
    HeidiToo Member Posts: 965
    edited October 2011

    kathyrnn- the elephant's name is MacFry. He goes everywhere with us; he's our resident pachyderm. It actually started out as a family joke but then, being an elephant, he just became larger than life. Folks who have been in here awhile are kinda use to seeing him.

    More photos are up, same link. We rode today in extreme wind (30-35 knot winds all day) and then soaked in a natural geo-thermal lagoon. Man, it's been a whirlwind trip and I'm tired, but it's a good tired, not that "my body feels like lead after chemo" feeling. In fact, I think I'm finally getting the old me back!

    Now, if I could only reverse gravity, and all the accompanying wrinkles and sagging....

    Glad to hear LJ's been spotted!

    Looking forward to getting home to all the animals. Would like to click my heels and be there, cause I'm not liking the thought of another bumpy plane ride.

  • Babs37
    Babs37 Member Posts: 320
    edited October 2011

    Heidi- The pictures are just breath taking. And the lagoon...... I would see myself in there, no problemo.Tongue out

    Titan- The wedding looked beautiful. You all looked like you were having lots of fun.

    Lj- Hope you are well. We are all thinking about you.

    Suze- Hope you are doing good too and that you are feeling the chemo working hard in there. Thinking of you too.

    Fighter- My monthly friend came back 2 weeks after my mx! That's not even a 2 months break after finishing chemo. Wasn't long enough of a break for me!!! I was hoping it would have never come back but......That's life.

    Hope everyone is doing ok. I read everyone's posts everyday but just can't answer all of you. But you guys are all in my thoughts.

    Wednesday morning, I meet with my doctor (onc) and my clinical trial (metformin) nurse. I'm a little stressed about it. I don't know if there will ever be a time where those visits won't stress me but I doubt it.......

    Good evening to you all.   

  • Titan
    Titan Member Posts: 1,313
    edited October 2011

    So..since it is breast cancer month..I heard on the news tonight about things that can prevent breast cancer..low fat diet, exercise, no drinking..I wonder about how this applies to triple negative....it sounds like we are all a bunch of obese, high fat eating alcoholics...I dunno..I think I've seen enough pics of us all here...I don't think that any of the above apply to us.

    And about the drinking...they said that the liver doesn't metabolize the extra estrogen when we drink...hmm...we TN'S cancer was not driven by estrogen...

    It just bothers me that "they" say that the above will prevent breast cancer..I just don't think that is true...I do think that eating right and exercising will help us feel better..not sure about the preventing cancer part.

    Ah well..probably shouldn't have vented but dang it...

  • faith-n-strength36
    faith-n-strength36 Member Posts: 3
    edited October 2011
    i just want to say im so glad i found this chat, i enjoy sharing and talking to you all! and i just want to share that losing my hair did not bother me to much, when i lost my eyebrows and eyelashes that bothered me a bit. but i always say Bald is Beautiful! and when my period stopped during treatment, that was great, and i didnt have it for 1 1/2 years, but it came back worst, but all of that stuff is little, i thank god we are all here to enjoy each days blessing.i will keep you all in my thoughts and prayers. and i wanted to share a book im reading called Living well beyond breast cancer. author is Marrisa C. Weiss, M.D. it is a good book. i also have read chicken soup for the breast cancer survivor. that is a good book.everyone had a good night, and good luck with treatment and appointments. god bless Laughing
  • faith-n-strength36
    faith-n-strength36 Member Posts: 3
    edited October 2011
    titan it is good to vent once in a while, it is not good to keep it in, you have to get it off your chest sometimes so it dont build upLaughing
  • gillyone
    gillyone Member Posts: 495
    edited October 2011

    Titan - as we've said before, it's all a crapshoot. Nobody knows what, if anything can prevent cancer.

  • TiffanyF4
    TiffanyF4 Member Posts: 104
    edited October 2011

    Hey Ladies.....haven't posted any many moons so I thought I would drop in and say hello.  I am a 2 year survivor as of this month so that makes me happy! I have tried to read some of the thread to catch up but WOW you girls have been busy. I see alot of new names as well.  Finally was set free for 6mth check ups instead of 3mths so that has been nice. Although I am a little freaked out, still always wondering if I'm missing a symptom and trying to diagnosis every ache and pain. With time it seems to be getting a little easier and easier to put it in the back of my mind and not worry about it all the time.

  • HeidiToo
    HeidiToo Member Posts: 965
    edited October 2011

    Headed home to "lower, slower". Picking up pups in the morning. Can't wait!

    Oh yeah, added more pics and a few video...same link as before.

  • Fighter_34
    Fighter_34 Member Posts: 496
    edited October 2011

    Bab37- the Metaformin trial is a good one to be in. I am in it also. I have my pill in my pocket to take now.

    TiffanyF4- that's for dropping in.Smile

    Gillyone- Truly is!!! A very very unlucky Crapshoot at that!

  • Suze35
    Suze35 Member Posts: 559
    edited October 2011

    Hi everyone!

    Heidi - your pictures have been just amazing.  What a wonderful vacation!!  I am living vicariously through you at the moment Laughing.

    TiffanyF4 - welcome back, and congrats on getting to the 6-month appointments!  That is great to hear. 

    I get my second dose of Abraxane tomorrow.  I have to say, I had ZERO SE's from it that I could tell, but I appreciate the information bak so that I can be prepared.  I know this stuff builds up, so I'm going to appreciate these early good days. 

    I'm almost off the steroids - thank goodness!  My head is finally clearing, and my mood swings are starting to ease.  Awful things.

    I'm also happy to say that the symptoms from my cancer have remained well controlled - they aren't getting any worse - so I'm hoping that this treatment will give me a little time with the Stable Boy.  The MO said I'd know if they got worse - I'd need more meds.

    Good thing for today - it feels like a "years" day, not a "months" day Tongue out.  And my DH finally got the second garage door opener up, just in time for the downpour tomorrow!

  • SlayingTheBeast
    SlayingTheBeast Member Posts: 7
    edited October 2011

    New here... I was diagnosed March 10, 2011 (age 29), my son was just 4 months old. Found my lump while breast feeding. Stage 1, node negative, Grade 3. No family history and neg for BRCA genes. Finished dose dense regimen of 4 A/C followed by 4 Taxol, every other week on July 12. Finished 33rd rad treatment on Sept. 30. Follow ups start in Nov. Trying to adjust. Still no periods, but hoping they come back. Haven't had them since I got pregnant (last one was Feb 2009). My husband and I are hoping to have another child (or 2). For those of you who got your periods back after treatment, how long did it take? Anyone have children since treatment???

  • Fighter_34
    Fighter_34 Member Posts: 496
    edited October 2011

    Angelia-My period has just started and it's heavier than normal. Took about 8 months to see it again.

    Now the kids dept. I am not hoping for anymore. I already have two little ones running around and knocking everything over. I am interested in preventing that but I will not take birth control.

    Thanks for posting.

  • SlayingTheBeast
    SlayingTheBeast Member Posts: 7
    edited October 2011

    Fighter_34- thanks for getting back to me. I'm sorry to hear your periods are now heavier than ever. A fellow BC survivor (hormone positive) said hers came back and the first three days she would have horrible cramping. I wonder if it's common for it to come back worse after chemo? I hope it doesn't stay that way permanently. How old are your little ones? My son is going to be one on the 25th. In some ways this year has gone by so fast, yet in others I feel like I've been through 10!!

  • minxie
    minxie Member Posts: 239
    edited October 2011

    Hello my fellow TNS ladies! Suze and Laurajane, hope things are going well for you - I always look for your updates and think about you.

    Folks, I have my 6 month onc check up next week. This usually has me besides myself with anxiety, but so far I'm hanging in there... I did want to querey him about the latest news/breakthroughs in prevention - anything in particular I should ask about? Metformin? Androgen receptors? Anything, anything at all out there yet for us TNBCs?

    My onc wanted me to lose 10 lbs before this appointment and instead I've gained about 8. I am sooo bummed :(   I am thinking perhaps since I've been forced into chemopause I now have the metabolism of a post-menopausal woman? I've cut back on carbs, exercise, eat less, nothin' happening. I've never had so much trouble losing weight before.

    I recently saw the 10 year survival stats for stage IIa cancer - only 50%. I was shocked. I have always been told the 5 year sats were 75%. I had no idea that my chances of being alive in 2018 are only 50/50. Add TNBC to the mix and who knows... Anyone have more info on this?

    EDIT: it was this article in the NYT that mentioned the stats

    http://www.nytimes.com/2011/10/18/health/views/18cases.html?ref=health 

    I'm taking some STD from work and starting intensive PT for my messed up back and shoulders. The PT group specialized in post BMX post node-dissected women with chronic pain like me. I am very hopeful that they can fix this. 

  • maywin
    maywin Member Posts: 24
    edited October 2011

    Those must be some really old statistics!!! I think the survival rate now for IIa is 85-90%!

  • ksmatthews
    ksmatthews Member Posts: 743
    edited October 2011

    my dr told me if you make it to the 5 year mark that your chances are 95%!  Hmmm makes me wonder.  Anyways I am not going to worry myself to death.  I am gonig to enjoy what time I have!  I know woman who are in there late 70's who are BC survivors and now they can do more than they could then.

  • michelleo13
    michelleo13 Member Posts: 116
    edited October 2011

    Minxie, I think those stats are way off. I'm iia and everything I've heard is in the 90% range. I notice the author doesn't quote a source for the numbers.

    I had a mild reaction at my Taxol infusion today. It was very strange. Hopefully, it won't get worse with the last two. I want to get this over with!

  • Luah
    Luah Member Posts: 626
    edited October 2011

    5-yr breast cancer survival rates are close to 90%, according to a credible source:  http://seer.cancer.gov/csr/1975_2006/results_merged/topic_survival.pdf  Granted, that's not broken out for TN, but it would include various stages.

    minxie, you are almost 3 years out and that is a very good milestone for us TNs!!

  • mitymuffin
    mitymuffin Member Posts: 242
    edited October 2011

    Minxie, I read that article also, and found it upsetting and puzzling.  It certainly doesn't agree with what my Docs told me (80% survival for my stage 2b). There is something we don't understand about those statistics. 

    Many people in the non-breast cancer world do seem to think that breast cancer is now always treatable and curable, so if the article generates some contributions to research, then I'm glad for it.

  • Titan
    Titan Member Posts: 1,313
    edited October 2011

    Good for you Tiff!  every 6 mos. is good..I'm assuming that is with your onc?  I still see my onc every 3 months..I asked him when I could go to 6 and he said it depended on my mammogram next May...Like you..I may be nervous about this..at the same point..I just want to let it go..put "it" behind me..

    Oh man...I KNOW that we have to be watched carefully...for a long, long time...but sometimes I just want to say F>>It...and just move on.

    Here I am venting again...ha ha..my daughter's wedding kept me so busy for so long that I didn't have time to think about other things..now I'm on here ranting..ha ha...some things don't change do they.

    good to hear from you Suze..love ya girl...and welcome to our new ladies...

  • Paintingmywaythru
    Paintingmywaythru Member Posts: 221
    edited October 2011

    Hi All,

    How were you able to get into  the metaformin trial?

    I would like to see if I might be a candidate for it.

    Those NY Times stats seem to be off but I guess it all depends on the person. I also heard that when you reach the 5 year mark your odds go way down.

    I also have finally got my brain a little together and wish I had done TAC vs TC although it was not what my onc recommended.  It was what the consulting onc suggested but then she backed off when I said my onc suggested TC and she said that would be good too.

    So I am at MGH now and I really like my onc but she only follows me every 6 months. She said more was not necessary....interesting as we all get different info. She also is only recommending a 3 D mammo annually, so I wonder what people think of this.

    Ttitan I will post one of my daughters wedding pics. I have to put it up on my blog or facebook to get a URL first.

    Feeling a little nuts with the open house Sunday and another coming up this Sunday...don't like living in a hotel like environment.

    Send out a prayer for my neighbor who had Stage 1 endometrial cancer 5 years ago but learned just recently that she has a tumor in her lung and cells around her aorta ( don't know what that means) but she is estrogen positive so she has been put on medication. She was told the oncologist did not think he could successfully do a surgery. I spoke to her tonight and we both were in tears.

    Love to all of you.

    Laura Jane and Suze thinking of you and sending good thoughts and hugs.

  • DenMac
    DenMac Member Posts: 1
    edited October 2011

    Hello Fellow Survivors

    I just joined this site and am looking forward to connecting with others.  I had neo-adjuvant chemo 4 A/C and 4 Taxotere.  Only could do 3 of the T because it gavve me burning rashes up my arms along with a host of other fun stuff.  When diagnosed I had two nodes involved with a 3 cm tumor.  I had my lumpectomy last Thursday and was told yesterday 10 nodes removed were all clear and they found 1 mm of cancer in my breast.  I am ecstatic by the news.  Now I need to heal, get that drain out and start 30 days of rads.  I didn't know what triple neg was when first diagnosed and probably that was for the best.  Now I have read more bit by bit,  and I have been very positive through all of this and hope to move onward with the same positive outlook.  I love reading the posts of the strong and amazing women who have fought this fight.

  • michelleo13
    michelleo13 Member Posts: 116
    edited October 2011

    Welcome DenMac! So glad to hear your great news! I found it interesting that you had neo-adjuvant surgery. Your initial stats were almost identical to mine based on the biopsy results...3 cm tumour with 2 nodes involved. In my case, I had surgery first followed by adjuvant chemo. When they did the lumpectomy it turned out while the lump was 3cm, the tumour was only 1.6. It was attached to non-cancerous tissue which was a good thing because I could feel a 3 cm lump and wouldn't necessarily have felt a 1.6 cm lump.



    I always find it interesting how different doctors have different approaches to similar situations. Which one is right? Who knows? I've given up trying to sort out the various chemo regimens and who gets what! I'm learning more and more that b/c treatment really involves a lot of educated guessing on the part of our doctors.

  • Marni
    Marni Member Posts: 3
    edited October 2011

    I just started another thread but think i should be here, I have one more chemo to go,(out of 4) of Taxotere and cyclophosphaminde (TC), but the SE have been really bad, with rashes and tightness in the chest etc. etc. Has anyone else stopped after just 3 treatments, I am due to have Radiotherapy starting on 14th nov. as well.

    Also gaining heaps of weight, does this go?, maybe its just because I don't have the energy for much exercise :(

  • laurajane
    laurajane Member Posts: 305
    edited October 2011

    Hi all of you wonderful ladies. I've missed you and mainly been catching up on PM's. It wil take me a couple of days to catch up. Thank-you for all of the well wishes. All of the newbies, Welcome! This thread has been so wonderful full of caring women that are going through the same thing. I'm saddened that you are here but we can all beat this FC.

    MBJ- I hope your move goes smoothly and can hardly wait to see you. Could you please pack a little sunshine in one of those boxes. IT's getting cold and today was rainy.

    Heidi- I hope your trip was wonderful. Missing your humor. Thanks for the dose.

    Tiffany Congratulations on your two years. That's fabulous and I'm toasting you.

    Michelle13- I had great results with Acupuncture relieving my SE's from Taxol.

    I've started seeing a healer. It seemed like the Halavan (Which for me is close to A/C SE's) started to work and then kind of puttered out. My onc said it is like my cancer has spit out all of the chemos. For all of you new gals don't let my post scare you. Most of these lovely women have had great results with all of their chemos. My healer thinks that I will live a long time and so do I. I have this week off from chemo and will decide by next Tuesday whether I will do more. Once I'm off I am going on the whole foods diet and taking bookoo herbs etc. All of the things I'm not supposed to take while on chemo. I think it is time for me to take my FC into my own hands. I have begun chanting. Have you guys heard me? I get pretty loud sometimes. I have also been doing a lot more meditating and even wake myself up in the night intentionally asking this cancer to not wreak havoc in my house. I am trying to release all anger and hostility and fill my body with so much love and light that there is no way anything as evil as cancer can find a comfortable spot in this house of love! I'm obviously still taking my Morphine. LOL.  Life is good. feeling a little better. The Halavan kicked my butt!

    The best thing that happened to me today was visiting with all of you on this thread. I can feel your love and thank-you for that.

    Wishing all of you sweet dreams and hope you all have a good day tomorrow full of smiles. 

  • SlayingTheBeast
    SlayingTheBeast Member Posts: 7
    edited October 2011

    Anyone experience pains in their breast or arm pit where they've had radiation? My Dr. said this is normal(??) Also, I feel a bump under the scar under my arm where the nodes were removed. Dr. said the U/S I had in May just shows scar tissue -no tumor or enlarged lymph nodes, but that if I feel that it is "changing" it wouldn't be unreasonable to have it rescanned to compare. Sometimes when he responds like that it makes me feel like I am being paranoid, but I can't help but worry sometimes. 

  • MBJ
    MBJ Member Posts: 3,671
    edited October 2011

    Unfortunately the area under the arm is going to be lumpy from scar tissue and mine aches all of the time.  We have had radical surgery on our bodies and this is something we have to learn to live with.  My cancerous lumps felt very different from my scar tissue lumps but sometimes my brain goes there and I just have to stop myself and remember tat my US was clear on the other breast and that I have no symptoms since my MX.  Hugs!

    OMG-Moving in a few days and I am soooo overwhelmed.  Hugs to everyone and talk soon!

  • mccrimmon324
    mccrimmon324 Member Posts: 794
    edited October 2011

    MBJ - Good luck with your move.  We moved from PA to FL about 6 years ago, it was very overwelming but you'll be settled in before you know it. 

    Why did you choose Kentucky?  I'm sorry, now I forget where you said you were moving too?  

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