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Class of 2009 - Sisters in the same time frame

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Comments

  • yasminv1
    yasminv1 Member Posts: 33

    Hi Everyone,

    I had my first treatment last Thursday. I am doing OK. The first couple of days were no big deal. I immediately experienced upset stomach but nothing to bad. By Sunday I began feeling crappy. I woke up yesterday with a terrible case of thrush and my throat was swollen and ached. I could barely drink liquids. My Onc called in some medicine and it sure is helping. Today I am able to eat and drink more. I am tired but have made it to work the past 2 days anyhow. It is nice to have a distraction. Tomorrow I go for a final wig fitting and hoping to come home with a wig as I should start seeing hair loss in the next couple weeks or so.

    I hope all of you are feeling well. Take Care.

    Yasmin

  • jburke1
    jburke1 Member Posts: 258

    I had my re-excision at my lumpectomy site yesterday. It went well, but I am in a lot of pain. He took alot of tissue and I am scared to see what my chest looks like. I can sort of see a big dent there, but have not removed the bandage yet. He also drained 30 cc's more of fluid from my lymph node site. I go back next monday for a follow up and to get the path results to make sure he got everything. My mother-in-law is here and cleaning my bathroom for me as I sit here and type this! She is a great help!

    Hope all of you are doing well, and welcome to the newcomers, I wish you all the best.

    Hugs

    Jen

  • pj12
    pj12 Member Posts: 18,108

    Hi Everyone,

    I am thinking about each of you and wishing the course was easier.  Why does getting well have to make us sick?  My heart is with you all.

    I am packing up "my cares and woes" and going to California to visit DD and her family.  DH may starve to death while I am gone as he is no good in the kitchen!  I've brought in all the snacks he likes which are usually off limits so he will probably make it through.

    Stay strong everyone.  Be kind to yourselves and let everyone else take care of you for a while.

    Hugs,

    Pam 

  • carolehalston
    carolehalston Member Posts: 8,280

    Hope you have a wonderful trip, Pam.  Maybe the weather will be cooler in CA?

  • yasminv1
    yasminv1 Member Posts: 33

    Pam - Wishing you tons of fun in CA. Take Care.

  • one-L
    one-L Member Posts: 653

    Yasmin, my thoughts are with you.  I don't think I am on the road to chemo, I don't know how I would feel if I lost my hair.  I guess I would accept it and do as you are doing.

    Jen, I went to the doctor today and I will not have to have any more surgery.  I will be thinking of you, keep those meds handy.

     Pam, have a good trip, I know you need it.  Your DH can make it a couple of days without you.

    Rose_wood congratulations on your accomplishment.  I still have all that to go.  I have been reading on what to do and what will be expected for the rest of my life.  I did get some crystal deodorant yesterday and am giving it a try.  I will let you know how it works.   

    I went to the doctor today and got my drain out, what a relief.  He also went over my path report and all is well.  No lymph node involvement and clear margins.  He will make my appointment with the oc rad and call me tomorrow.  On to the next step.  One thing down and more to go.  He was very pleased that I could move my arm and am not having any pain.  I woke up twice last night and had my arm up over my head.  It was the first night that I have slept really good since my surgery.

    Best to all,

    Juannelle

  • SueInOhio
    SueInOhio Member Posts: 10

    oh! Juannelle....one-L....I get it! And here I though that the rads were taking away all of my brains!

    Yasmin: Hugs to you from across town!

    Pam....from FL to CA ...loooong flight...sure hope you are changing planes somewhere so you can walk around! Have a great trip.

       I'm thinking of flying to see my parents who live in Houston.They are in their 80's and have done great with my BC Dx. But I have this NEED to see them...be with them. Weird. I guess you always need your parents hugs...no matter how old you are!  If I were to go, it would be a non stop 3 hr flight over the Labor Day weekend (because NO tx on Monday!). I will be right at #20 tx. Do you all think this would be OK? Or should I just stay put?  Seems like I've been told to watch out for #18. Just hate this not knowing if I am going to breeze through rads or burn and ooze. Gee whiz...I sure am perky tonight! Sorry! Wish I knew a joke to close with!

    Sleepy tonight...Hugs to all

    Sue

  • jburke1
    jburke1 Member Posts: 258

    one-L, I am so happy for your outcome from your surgery. You seem to be doing great! I am recovering fine from my surgery on Monday. The site doesn't look as scary as I thought and I am not in as much pain today. I took a shower, which always helps and I am wearing one of my own bras instead of the lovely one the hospital gives you! Mine is giving me more support which is helping with the pain.

    Pam-have a good time in CA! Wish you well!

    Sue-Sounds like you should see your parents if you feel up to it, go with your gut.

    Hugs to all!

    Jen

  • Ainm
    Ainm Member Posts: 362

    Classmates - all I can say is keep lashing on lots of cream for at least three weeks after rads. I was sore-ist a full 2 weeks after finishing rads!!! I still find it it uncomfortable to wear my breast form for any length of time (3 weeks post) and I'm still dam cranky!! I had a bolus applied to the length of the mastectomy scar every tx and now the scar is still very red and hard!! But this too will pass (I hope)!!

  • mrsphilly
    mrsphilly Member Posts: 5

    Lottie - Sorry I haven't answered to tired after school and the hour drive each way every day.  The therapist said my swelling is not lymphodemaq but just from the surgery and about 20% of people get this.  I don't know exactly what the massage does but it helps to drain the liquid from these areas, but you  do have to go to the bathroom a lot afterwards.  She showed me how to do the massage, it is very specific and very very gentle.  The therapist is a lymphodema specialist and uses the massage with her lymphodema patients.  Be sure you get some one trained to help you.

     I am 4 weeks out today and still can't stand the presssure of even a soft sleeping bra with the "puff"  I tried to wear one to school and yesterday and suffered for doing so.  I just gritted my teeth and went without today.  I am just very self-conconcious with middle schoolers and I just know some wise cracker will say something in front of a whole class about how strange I look.  Clothes can only disguise so much.

    I just wish the pain would get better.  Pain pills don't help so I quit them after just a few of 2 different ones.

     One more day this week and then I get to rest for 2 days.

     Take care everyone and hang in there.

  • holligoog
    holligoog Member Posts: 10

    In early December 2008 I was in the shower and noticed a lump in my left breast. My annual mammogram was coming up on December 23rd so I didn't think too much about it. I went for my mammogram and I saw something on the images of my left breast. I had an ultrasound and saw a mass that scared me.  It's like my life went in to slow motion. Equipment was "down" until after the holidays. Hurry up and wait...........

    - Jan. 7th: Core Biopsy; because the stereotactic machine is a different kind of technology, when they took the initial images to see where to do the biopsy they saw "more suspicious stuff" and decided not to proceed with the biopsy and sent me for an MRI.
    - Jan. 8th: MRI
    - Jan 9th: call from radiologist "the original spot of concern lit up" on MRI. I knew that meant I had cancer. Just don't know what kind yet.
    - Jan 12th: biopsy to find out what kind of cancer
    - Jan 13th: received the pathology report = both Ductal Carcinoma In Situ & Invasive Ductal Carcinoma.
    - Jan. 20th: additional pathology results "triple negative" breast cancer. Unfortunately this is the most aggressive and most difficult type to treat.
    - Jan 23rd: appt with the surgical oncologist at WFUBMC. I am scheduled to have a double mastectomy on Feb. 4th with Sentinel node mapping. Hopefully the cancer has not spread to my Lymph nodes. Once I recover from the surgery I will begin Chemo.

    Went to UNC Chapel Hill Medical Center for a second opinion. It was decided that the most important issue is treating the cancer as soon as possible and he felt that this would best be accomplished at this time by a lumpectomy and sentinel node mapping ASAP so that I can start Chemo earlier. If I have extensive surgery such as a mastectomy right now the recovery time is longer and will delay the start of Chemo. Furthermore extensive surgeries can be done after I am done with Chemo. Everything he said made sense. I am fixated on the cancer and the aggressive nature of it and that is what needs to be tackled first. So, my lumpectomy was Monday, February 9th at UNC Chapel Hill. Fortunately no lymph node involvement!

    Chemo (Taxotere & Cytoxan) 3/4/09 - 5/6/09
    Double mastectomy 6/4/09

    Live like you love it, Love like you mean it!

    A true friend is someone that reaches for your hand & touches your heart.

  • jburke1
    jburke1 Member Posts: 258

    Ainm, or anyone else,  can I ask what kind of cream is recommended to apply to the area after rads?

  • one-L
    one-L Member Posts: 653

    I would like to know what kind of cream also.  I haven't seen the rad oc yet, but I know I will in the next week or so.  Not looking forward to it, but life goes on.

    I still feel great from my surgery.  I can lift my arm up with no pain and there is no motion problem.  I feel very fortunate.

    I guess I will go back to work on Monday and get ready for the next round of doctors appointments and radiation.

    Hope everyone has a great weekend.  I am keeping my grandson today, he starts to kindergarten on Monday.  I only work 4 days a week, so I always keep him on Fridays.  I will not know what to do next week, when he is at school and our Fridays together will be over. 

  • flwrgrl
    flwrgrl Member Posts: 13

    Hi Pam,

      I've been lurking and learning from all of you.  Thanks so much for all the information!  I was dx in June.  Lumpectomy and SNB June 29th.  I just saw the oncologist yesterday and he said I could be part of a clinical trial involving the Oncotype dx test.  If not, then he recommended chemo, and the hormone therapy.  Oh, I should mention---I'm 36 and there's no history in my family.  Talk about coming out of left field!  I was wondering in any one has opinions on the different chemo treatments?  AC and T vs. CT?  My prayers to all, Kathy

  • Ainm
    Ainm Member Posts: 362

    jburke & one L,

    I used ordinary aqueous cream in large quantities. I also use to swab the affected area with strong cold chamomile tea a few times every day. I think the important thing is to put the cream on very, very often. Good luck all. I had blood tests today and go back to my onc next Tuesday, I wonder what gems of information he will have for me!!!

  • Beach
    Beach Member Posts: 16

    Jburke & One L--I have been using Lubriderm unscented and have faired quite well so far.  Finished 16 regular tx yesterday and started my boosts today.....I'm red but not terribly itchy and no broken skin.

    Flwrgrl--Sorry you had to join this club!  It's a difficult journey but doable and there is lots of support and info on these threads.  From everything I've read, TC is a more recent regimen and is considered a "gentler" chemo than AC+T, in that it produces less toxic side effects.  The "A" or Adrimycin (spelling?) is known as the "red devil" because it can be hard on the heart causing permanent damage.  Now this doesn't mean everyone gets these side effects as we are all different.  I've read that AC+T is slightly more effective than TC (not by much though), and I believe the regimen is determined by specific characteristics of the diagnosis ie. stage, aggressiveness, HER2, etc.  Best wishes to you.

    Sandy     

  • jburke1
    jburke1 Member Posts: 258

    Tried posting a response earlier, but it disappeared! Let's try again :)

    Flwrgrl-I like you have no history of bc in my family and I am 35! So, out of left field for me also!! My onc is doing the oncotype test on my tumor and I will know the results and my treatment next Friday. I am very anxious to know what lies ahead for me. I wish good things for you and I am sorry you have to go through this.

    Got a call from my surgeon yesterday and the path report from my 2nd surgery on Monday showed no cancer, so I have clean margins now and no more surgeries for me! Yay!

    Beach and Ainm-Thanks for the cream and lotion info- I am wanting to get educated on what I may be in for with treatment. Not sure what to expect. Everybody seems to have different reactions.

    Hugs to all

    Jen

  • flwrgrl
    flwrgrl Member Posts: 13

    Thanks Sandy, I'm Her2-.  There's history of "heart" problems on my Dad's side of the family.  I'm going to mention that to the doc when I see him again next week and see what he says.  I think my age more than anything is what worries the docs. 

    Best wishes to you and all, 

    Kathy

  • flwrgrl
    flwrgrl Member Posts: 13

    Hi Jen,

    I had the option of being part of a clinical trial for the Oncotype Dx test.  I decided not to join the trial because when I looked up how the test was done I was very skeptical of what is being tested (I work in the genetics field and run similar tests).  I didn't feel comfortable with the possibilty of not getting chemo (just hormone therapy) based upon the randomization of the trial (if my score was between 11-26).  My co-workers ALL had the same reaction when I talked to them about it.  So, I would say unless your score comes back very low I'd opt for the chemo.  We're young for this and I for one want to crush it now and hopefully not have a recurrance in the future. 

    Best of luck and my prayers are with you,

    Kathy

  • jburke1
    jburke1 Member Posts: 258

    Thank you Kathy, I will very carefully consider my options. Right now everything is scary, going thru chemo, not going thru chemo and having a reoccurance, it is overwhelming. I will have to see what my onc says when I go back to see him and consider all my options. But, I wonder if he doesn't recommend chemo and I opt for it anyway, would my insurance still pay for it? You know how they have a way of getting out of paying for stuff on a technicality all the time. Oh, well, cart before the horse on that one. Hurry up and wait until next Friday. Until then I will look into the oncotype test further.

    Hope all is well:)

    hugs,

    Jen

  • London-Virginia
    London-Virginia Member Posts: 109

    Jen - Life is a Long Song, and I hope you have the l;ongest song of all.

    If it makes overall sense, throw the bloody kitchen sink at the damn disease whilst you have the chance!

    Chemo is a bit crappy but people get through and so can you.  Also, check out Cold Cap treatment to try to retain your hair. It is working for me.   There  is a current thread on colc dap - just look back over the last fes days Active Topics.

    Very warmest wishes to you -

  • jburke1
    jburke1 Member Posts: 258

    Thank you Virginia! I wish you the same long song of life! I am scared, mad, sad all at the same time sometimes! But then I think I know it could be worse for me, so what have I got to be so upset about? Well, the very thought that cancer invaded my body in the first place makes me angry. I wish I could go one day without thinking about it or talking about it. I am sure everyone on here has had all the emotions I have right now, and then some!

    But I know God has blessed each one of us with family, great friends and last but not least good doctors to kick cancer butt!

    Take care! Love and hugs to all :)

    Jen

  • funthing42
    funthing42 Member Posts: 236

    Hi dx'd in June /c IDC, stage 1, grade II/III, neg nodes, Her2 neg. Ki67 50%. Er+ Pr+. sister dx'd last year at 36 IDCS. I'm 41.  I have had a lumpectomy so far. I will be having Rad and Tamoxifen. I have a Oncotype score of 23. BRCA neg. Now deciding if I should go /c chemo. Doctors divided I'm in the gray area. I posted in other thread so far two responses. I have to make decision soon. Any feedback  would be great. Frown    Thanks a bunch!!!

  • magob
    magob Member Posts: 242

    Hi Funthing!  Nice to know you.  I am 46, diagnosed in May.  IDC, Stage one, grade one, micro traces in one lymph node - technically node negative.  Read the rest beneath my post.  Oncotype score is 20.  13% chance of recurrence in 10 years.  Saw 3 oncs - one for, one against, one neutral but leaning toward not doing chemo due to some other health challenges. No one could really say for sure what would be best.   I said prayers and gave it some time. 

    This is one of the toughest decisions you'll ever make, so go easy on yourself.  Soak up all of the information and then let it steep for a while.  You WILL figure out what is best.  There is no right or wrong, only what is best for you.  No matter what you decide, there will be people in your life who will be upset with your choice.  NO ONE knows what is best until they've experienced just what you're going through right now.  The answer WILL come.  For me, it was agony until I decided.  Then there was no looking back.  You'll get there, and you will feel peace again.

    OK - so I decided to do chemo.  This is not to say it is the right thing for you.  Here were the reasons for my choice:

    1.  I'm under 50.  I don't want to deal with this EVER again.  Giving it all I've got.  If it does come back, I'll have no regrets - I threw everything at it I could. 

    2.  I had micro mets in node 1.  A new study has emerged, and it shows higher recurrence when these cells are present in nodes, even at a microscopic level.

    3.  I met a woman in my cancer support group who did treatment three years ago for breast cancer.  It's back, this time in her liver, lungs, and spine. 

    4.  I did not want to wake up every morning and wonder if cancer was creeping up on me. The chemo will help to ease that anxiety.   

    Hope this helps.  Hang in there. You'll figure it out.  Let us know what you decide! 

     XO, Mary

  • flwrgrl
    flwrgrl Member Posts: 13

    Funthing42,

      I would go for the chemo.  Why not throw everything you can at it?  Especially if you're in the gray area........  I haven't started chemo yet but I've talked to a few people about it and they all say it's "doable".  I'm trying not to get anxious about any SEs (easier said than done) until they show up.....  Well, that's my 2 cents for what it's worth.  Good luck and God bless.

    Kathy

  • magob
    magob Member Posts: 242
    FLWRGRL - If you feel like it, let us know when you start chemo.  We'll be there to root for you.  XO, Mary
  • carolehalston
    carolehalston Member Posts: 8,280

    This is such a great supportive group.  I'm hoping (dreading) to get my oncotype test results this week.  At my age, 66, I don't think I would consider chemo with a oncotype no. of 20.  It makes a big difference if the woman is young, 30's, 40's, even early 50's.  I feel terrible knowing that so many young woman have to face bc when you should be just living your life to the fullest.

    Whether I have to do chemo or not, I'll be taking Arimidex, and from reading the Arimidex thread, that's no picnic.  The drug blocks all estrogen production, which sounds like an awful thing for a female body. 

  • elimar
    elimar Member Posts: 5,890

    I'm Class of 2009 -- I'm in Summer School.  (Nobody likes summer school!)

    The talk here has turned to Oncotypes.  While there is plenty of info. on theOncotype Dx website & over in the "Hormonal Therapy" forum about it, I wanted to condense it here in three parts for MAGOB and anyone else who might be interested:

    The Oncotype Dx Recurrent Score (RS) is NOT a percentage in itself.  The RS number places you into a group of either low, intermediate or high risk for local or regional recurrence (same breast area)  ASSUMING THAT YOU WILL DO THE 5-YEAR TAMOXFEN REGIMEN.  That's all that number does.  So it's your risk ON TAMOXIFEN.

    Once you are in a "risk group" you and the docs have a better idea if chemo should be a part of your therapy.  So, people who are "low risk" group using Tamox., might not want to put themselves thru' chemo  for only a small benefit.  People who are "high risk" using Tamox. could be advised to add the firepower of chemo to their treatment or to do chemo INSTEAD of Tamox.  Poor intermediates, the choice is not as clear cut; so individuals/doctors have to weigh ALL the factors and try to feel good about the choice.  (I'm not going smart-mouth here...my RS is 18, cusp of intermediate.  I'm just doin' my homework and hoping I made a good decision myself.)

    Finally, the Oncotype report does contain a percentage number, but the number does not refer to LOCAL recurrence.  It is for distant recurrence, otherwise known as metastasis. So it the lilklilhood of your cancer spreading in 10 years time USING TAMOX. ALONE.  Another guideline to decide if chemo might be beneficial for you.  As bad as mets are, the percentage number is not an overall survival number either.

    I got my score last month.  Phoned Genomic Health with a few questions myself.  I hope I don't come off as a know it all, but it is fresh in my mind and I thought I could help with the understanding of it.

  • carolehalston
    carolehalston Member Posts: 8,280

    Thanks, Elimar, for the explanation.  How much research do we have at this point to trust the oncotype score as a reliable predictor?

    I just learned my oncotype number and it's 9!  No chemo!  I'm so relieved.

  • elimar
    elimar Member Posts: 5,890

    I am aware of 3 major studies that the Oncotype Dx was developed from.  It's reliable enough for many insurance companies to pay for it -- so it's cleared that hurdle  Haha.  (Inappropriate laughter!) 

    I had hoped to be a lower score, but cusp or no cusp, I'm not having the chemo.  I'm one of those people who really wanted to say no to it ALL, but admitted everywhere else on this board that I was too scared not to have radiation & hormonal treatment.  I tried a Contura (like Mammosite,) but it said no to me.  Right now I am only on day 2 of 33 Tx of whole breast radiation, then afterward I'll try the Tamox. 

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