Is There A September 2011 Chemo Group?

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  • CJRT
    CJRT Member Posts: 524
    edited August 2013

    Belle- sorry you didn't get all the answers you wanted but hope the steroids help. Glad none of it seemed concerning to your doc.



    Mags- thinking of you and hoping things are going well.



    Pink shirt- thinking of you..

  • mags20487
    mags20487 Member Posts: 1,591
    edited August 2013

    hello ladies...surgery is done and I am back at my hotel.  1 night stay...she went easy on me this time.  There was one small bit of necrosis in rightie which got sent to pathology..errrrr...probably nothing as all my testing has been good so far.  No pain meds which I am glad because i hate the way they make me feel. 

    sorry you had to go on steroids Belle...they stink!

    Pink and cjrt...lots of big (but gentle) hugs to you both

    Maggie

  • belleeast
    belleeast Member Posts: 653
    edited August 2013

    Maggie,glad to hear everything went well and you aren't in much pain. Prayers on the necrosis path.

    I've done 2 1/2 days of the steroids,not going to take anymore!! I hate the side effects,I couldn't take them during chemo,don't know why I thought I could this time esp at such a higher dose. I'll just have to deal with the pain.

    Hugs to all,hope everyone has a great weekend.

  • belleeast
    belleeast Member Posts: 653
    edited August 2013

    Today,celebrated my parents 65th anniversary with 2 of my brothers and sister-in-law,visiting,grilled steak,ribs,had baked potatoes,an awesome peach dessert with ice cream. There are 8 children in our family,2 sisters called-live 15 mins away,except for a brother out of state,all live with in 30 miles. I just don't understand people sometimes,don't they realize how lucky we are to have them still with us and what an accomplishment it is to be married 65 yrs.

  • bluejay58
    bluejay58 Member Posts: 62
    edited September 2013

    Hello ladies, checking in again after a lengthy absence!  Having read through the last seven or eight pages, all I can say is that all of y'all are amazing.  Belleeast and Pink Shirt and CJRT, you are all in my thoughts and wishes for good karma.  It all seems so ridiculously UNFAIR after all everyone has been through.  Kimberly, was that you with the line about the critter that lives in the trees and doesn't move except to crap once a day?  That made me laugh out loud for real.

    I don't really have anything to report.  I have aches and pains and insomnia, but my MO and radiologist and breast surgeon have attributed them all to the anastrozole I am taking.  It also makes me sad and depressed sometimes, but at least I know it's the drug.  All of my blood tests have been clear so far -- I have another routine appointment in a couple of weeks.  I have to admit that sometimes ... all of the events of the past two years seem like a bad dream.

    Did anyone else get a survey from UCLA regarding something called the ECHO Study?  I'm just curious -- it was basically about how helpful/not helpful the Oncotype DX test was, and I thought it had some interesting questions.

    So.  I am thinking of everyone tonight, and wishing everyone well.  If I could hug all of you, I would.  <3<3<3

  • belleeast
    belleeast Member Posts: 653
    edited September 2013

    Bluejay,thank you for the good karma:))

    Happy to hear you are doing well. I didn't have the oncotype test so no survey for me.

    I get the bad dream part,too.. Until it's time for mo appt or mammo,then reality hits in :((

    Pink shirt and Cjrt hope you both are doing well!

    Hugs and well wishes to all of the Sept gals!

  • PinkShirtNow
    PinkShirtNow Member Posts: 134
    edited September 2013

    Thank you for the good wishes.  It's been a rough day but I am hanging in there.  I had my first Xgeva shot yesterday which went okay.  I also got a prescrption for Fentanol patches for the bone pain.  I've thrown up a few times in the past few hours but I don't know if it is the Xgeva or Fentanol.  I'm not good with narcotics so I'm pretty sure it is the Fentanol.  Doesn't it seem that the possible SEs from any drug include nausea?  Right now I'm sipping ginger ale and hoping for the best.

    Take care everyone!

  • mags20487
    mags20487 Member Posts: 1,591
    edited September 2013

    I am so sorry pink...rest up. Hopefully your body will adjust to the meds and next round will be more kind to you.

    You ladies are all so strong. Thank you again for all your encouragement and support.



    My last surgery went very well. The girls are a little more even but far from done. Next go is December.



    Take care my lovies

    Maggie

  • belleeast
    belleeast Member Posts: 653
    edited September 2013

    Pink,((hugs)) I get ya with the nausea- I got nausea from the nausea patch during chemo-go figure lol. I am so sorry you are having a rough go,maybe they could reduce the dosage of the patch and increase gradually. I pray the pain lets up for you! Can they do radiation for the bone pain,at least in some areas,I know you have mets in most of your bones :((( Dang it,it's just not right that you are going thru this. I hope and pray Xgeva kicks this F...ing cancer's a..!!! In my thoughts and prayers..((hugs))

  • PinkShirtNow
    PinkShirtNow Member Posts: 134
    edited September 2013

    Maggie and Belle - thank you for your kinds words and support.  I feel a bit better today after a few days of pretty awful.  I remembered that I stilll had some dissolving Zofran for the nausea.  Thank goodness because throwing up the nausea medicine was not helpful.

    New issue - it seems I have a 8mm spot on my brain that they are going to treat with radiation starting next week.  I'm trying not to freak out but my MO says they can take care of it.  I meet with the RO on Monday and try to stay calm in the meantime.  I really wish I could catch a break.

    Hugs to all,

    Linda

  • belleeast
    belleeast Member Posts: 653
    edited September 2013

    Pink/Linda , Lord have mercy!! It just keeps coming,doesn't it?

    On the positive side,you found the dissolving meds,(2) at least the spot is small,and I've read on this site very encouraging positive results using radiation for brain mets,where it targets just the met. I'm sure the rad dr will explain the process and what side effects to expect.

    I would like to reach out and just give you the biggest HUG I can give!! Just remember,if you need to freak out ,freak out here all you want :),we don't mind at all! You are in my thoughts and prayers! (((Hugs)))

  • CJRT
    CJRT Member Posts: 524
    edited September 2013

    Linda- I am so sorry to hear your news but have actually met a few BC ladies recently who have done well with rads for their bone mets. I am traveling so writing this from my phone, so having a hard time typing. Just wanted you to know what encouraging things I have seen and heard about recently in meeting with other women with mets. Please know that you are in my thoughts and prayers. Hugs...

  • CJRT
    CJRT Member Posts: 524
    edited September 2013

    Mags- thinking of you also. Glad to hear your surgery went well and it's one more out of the way.

  • Kayrem
    Kayrem Member Posts: 164
    edited September 2013

    Sorry I have not checked the boards earlier. It has been a long summer. The kids finally started back at school on Wednesday last week (Yeah!!), so now I actually have some time to sit down!

    My daughter is in grade 2 and my son is in grade 5. My son is a patrol so now I have to drive him earlier to school - but he seems to enjoy it. I think he likes being "responsible" for when kids can cross safely!

    Summer was nice. I spent 4 weeks out of town at Victoria Beach where my In-laws have a cabin. It was sooooo relaxing after the first week when the kids settled down. During the first week it rained for 3 days in a row and I phoned my mother in law and told her I was leaving. The kids were enclosed in a small cabin fighting constantly! But it all worked out.

    Pinkshirt, I am so sorry to hear about your situation. If you have one spot on the brain they will probably do gamma knife on you. My dad had it done for three spots and his were much larger (one over 2.5 cm). Gamma knife is a targeted beam and other than a headache the day of surgery (more from the heavy helmet they put on your head than the actual procedure itself) there are little to no side effects and you are pretty much back to your new normal the next day. They can actually get rid of it completely and it doesn't come back. I also think the fentanyl patch may be causing the nausea. My mother-in-law has fibromyalgia and she had to stop using it do to nausea. I will start a new post because I cannot tell how long this one is!

  • Kayrem
    Kayrem Member Posts: 164
    edited September 2013

    Hi - next post.

    Carla - you were probably directed to this post because of my tumour marker posting. Right before my Mastectomy in March my breast surgeon did my tumour markers on me (the first time since diagnosis in June 2011). At diagnosis all my markers were normal but in Feb 2013 my CEA increased to 8.1, from 3.1( normal is 0-4). I had it retested in April 2013 and it went down to 6.8. I will have it retested next week as it is time for my general checkup. Right before the second test I cut out all exercise and salt. Basically anything that could be contributing to inflammation. I think my exercise was causing inflammation because I was exercising 5 days a week really intensely. I am trying to do the triple negative risk reduction of a low fat diet and 5 hours of intense exercise a week. I think my body was getting a bit too much exercise and I was getting inflammation. The next test should be a tell because I have been sitting on my but for the last 3 months, so I can assure you there is no exercise induced inflammation in my body right now!



    What was more surprising to me was my WBC and Neutrophil counts which never came back after chemo jumped up back to normal range right before my mastectomy. Why? I cut out all green tea and turmeric at my meals at about 3 weeks before my procedure. I am going back on the green tea and turmeric now that it is fall. It was almost like I was getting a chemo with no side effects. My neutrophils were at 1.7 which was only up from 1.5 during my chemo.



    Pinkshirt and CJRT ask your doctor if you can drink green tea and how much if you can. I was drinking about 5 cups a day. That may be too much for you guys.



    Kimberly- yeah you are right! No more stirrup day, no more mammograms! I also do not miss the "girls" (as my mom calls them) that much. I will not be doing any reconstruction as it is a change from going to flat from 38 DD. I may treat myself to a set of falsies (for special occasions) but other than that it will be flat for me. Miss the ovaries a bit bit because the hot flashes are pretty bad but you are right I will suck it up. I will not be doing any hormonal therapy because of the whole gene thing. Why take a chance of getting hormone receptor positive cancer also.



    Going to do another post- this one is getting long again.



  • Kayrem
    Kayrem Member Posts: 164
    edited September 2013

    Back again!!! Maybe I will try and post more often next time.



    CJRT - I guess you will be gearing up for your next scan. I guess the best case scenario is for node to be unchanged, biopsied and found to be benign. That is what I am hoping for. I wish they could just remove the node. It must be in a very difficult spot. I have had all my auxilla nodes removed on my right side. Maybe it is easier to take them all out versus one. I am glad your vacation went well. It is nice to take a break from problems, especially when they will still be there unchanged when you get back (wouldn't it be nice if they disappeared while we were gone!). I am thinking about both you and pinkshirt. Take care.



    Belle - I have heard the same thing that CJRT has said about back pain post mastectomy. I guess it is a shock for you body when you go from big chested to no chest. It is funny but I have not noticed anything yet myself - but it may be too early. I think you should ask for tumour markers to be done on your next doctors appt. I know that they are not reliable but they are another piece of information. Because my tumour markers were wonky, and my hip was so sore, my Radiation Oncologist ordered me a PET scan in July. I have not back from him but my GP (whom I REALLY love!!) phoned me with the results the night before I left on vacation. There was no evidence of cancer. Lots of other crap but no evidence of cancer. But....if I did not have the pain, did not have the elevated tumour markers, I would not have gotten the scan or the piece of mind. It was nice to hear about your parents 65 anniversary. It is an accomplishment and I hope all of us on these boards have the opportunity to realize the milestones like 15, 20, 25 to 65 years of marriage. Me and my husband will be celebrating 20 years in May of next year.



    Maggie - glad to hear your surgery went well. I must admit I am a bit chicken to go through the whole reconstruction thing. I told my breast surgeon that I wish I wasn't such a wimp! Me and my husband went to the plastic surgery appointment and he came out looking a bit green. He said "I am not so sure you should bother with that - but it is your decision of course". My surgeon left extra skin just in case I change my mind.



    Rjbaby - hope you are doing better from your surgery and the tiredness has gone away. Surgery can be very draining (both physically and emotionally).



    I am currently in the process of planning a trip to Italy and Malta. I leave in a month for 18 days with a girlfriend. It is one of those bucket list things. I went to Italy when I was 20 and swore I would be back. I did not think it would take me 28 years - but better late than never! I totally do not want to waste any good days I have and I am lucky that I have a husband who gets it!



    I hope everyone else is doing well and that everyone will continue to do well (be it on treatment or other). I know that all we have is today. I feel pretty good today so I will go with that. Take care everyone - Karen

  • CJRT
    CJRT Member Posts: 524
    edited September 2013

    Kayrem- Thank you for the well wishes. I do have my scan this week, so I can use all the positive thoughts and prayers I can get! Thank you for the green tea info. I will research it and ask.

    I hope everyone is doing well. I actually have good news to share and wanted to come here to do it since you have been with me through all the bad news. My sister gave birth to her third child last night, so I have my first nephew! I had 4 nieces already but now a boy! This also finally gives my son a boy cousin to grow up and someone to give all my awesome boy clothes to. I am so happy for them and so happy to focus on something positive! Can't wait to meet him. I will have to plan a trip to NC. :)

  • belleeast
    belleeast Member Posts: 653
    edited September 2013

    Karen,so good to hear from you,glad you are doing well.

    I have talked to my mo a few times about tumor markers,she will not do them :(

    Wow,Italy and Malta enjoy your trip,I want to hear all about it when you get back :))



    Cjrt,congrats on your nephew,so happy your little boy has a boy cousin now!

    Prayers your scan turns out good!

    One of these days,you'll have to tell us how your conference in San Fran went . Any new insights to this beast of cancer?

    Hope everyone is doing well!

  • mags20487
    mags20487 Member Posts: 1,591
    edited September 2013

    cjrt...will be thinking of you and praying for good results!

    Kayrem...so happy to hear from you.

    Mags

  • CJRT
    CJRT Member Posts: 524
    edited September 2013

    Thanks, mags! Just finished scan and now the waiting game begins.



    As I told Belle, my conference had to do with HER2+ so it wasn't as relevant for all in the group, but I met some amazing women and learned so much. i also learned about a wonderful all-volunteer organization called MetaVivor that raises grant money for research that holds promise for all of us. If you are looking for a wonderful organization in the midst of a sea of pink, please check them out.

  • Kimberly1961
    Kimberly1961 Member Posts: 407
    edited September 2013

    Ladies,

    So glad to see some come-backs.  Pink, I sure wondered what was going on with you.

    For anyone who has mets found, please don't feel bad coming back and sharing.  It's what we all fear, but we need a hand to hold the same as we did with the original diagnosis.  We all dread it, wait for the shoe to drop, but it is what we share like going through therapy.

    Pink, hold your hand lady. No problem.  Same with CJRT.  We hold hands together to give us strength, somewhere you can say you are anxious, it doesn't look so promising, and I am *** freaking out. 

    Belle - About animals in trees, I guess I am a sloth.  I had a dead squirrel in the yard this summer.  Garbage man comes on Monday morning.  Squirrel dies Monday night.  The ever loving stink in my garbage during hot summer to wait until next Monday.  Oh puhleease.  I had a possum die in my yard a few weeks ago.  They are hideous.  Straight to the dump.

    Anyway ladies, I was downsized from my position today, am now unemployed breast cancer patient.  No insurance soon or wondering how that will fall.  All of my accounts were under my job name.   I don't know that I will be able to access BCO in the same way under my name.  Dears, I remember you all.

    Hugs girls.  You are not alone.   I am still here and will find a way to come back to keep in touch. 

    CJRT:  Especially to you, you never know what miracle is in the test tube, next trial.  My sister was lucky enough to get Herceptin immediately after the first trial, at first release.  No matter she had no confidence, it worked for fairly long.  She is alive 8 years after.  Good luck dear.


  • belleeast
    belleeast Member Posts: 653
    edited September 2013

    Kimberly,so sorry to hear about your job,that just plain sucks. You can probably create a new account,maybe just change your name a little and check back in here.



    It is terrible about your job and insurance,it's bad enough what you have been thru with bc without this. (((Hugs)))



  • CJRT
    CJRT Member Posts: 524
    edited September 2013

    Kimberly- I am so sorry about your job. Like you needed additional stress and battles after all you have been through. Thank you so much for your kind words and support.



    I am sitting at my infusion. My doctor is apparently out of town til monday, so I don't have official results but her asst said results are good. I still have this one same lymph node light up but it is slightly smaller. Not sure if doctor will recommend doing a biopsy but for now, this is the best news I could pray for- no disease progression and nothing visible elsewhere. Thank you so much for your continued prayers.

  • belleeast
    belleeast Member Posts: 653
    edited September 2013

    Cjrt,have you talked to your dr,yet? Just wondering,how is that baby boy doing?



    Pink,how are you doing? Please let us know,when you get time and feel up to it. You are in my thoughts and prayers,too.



    Well,I leave in 2 days to go on vacation with my daughter and her family. Headed to Florida,Disney,universal,beach and sight-seeing! She has 2 adorable little girls,her husband has been drawing Disney characters on a chalkbboard for a countdown and posting on fb. He's pretty good!



    I am ready for a vacation. I'll check in while i am there. Hope everyone is doing good!

  • CJRT
    CJRT Member Posts: 524
    edited September 2013

    Belle- I hope you're are having a wonderful time on your vacation! How could you not at such a magical place with your beautiful family?! We've been having great family time lately and really enjoying our weekends. Not exactly Disney World but we went to Disney on Ice and had a wonderful time. My little boy is in terrible twos, but it makes me realize how I have been lucky that he was always so easy going. He is so smart and funny, so he is an ongoing source of comic relief! Finally met with my MO on Friday. She said that the lymph node is unchanged but she is pleased that nothing else was visible on the PET scan. She is tired of monitoring the node and said that no one can figure out what it is since it is unchanged and tumor markers and scan results have remained good. So, I will be having a biopsy later this week. Not quite sure what it will entail, but as usual, I can use the prayers and positive vibes from you ladies. I will keep you posted. Hugs!

  • mags20487
    mags20487 Member Posts: 1,591
    edited September 2013

    good vibes on the way CJRT

    Belle...you are close to me on your vaca.  I love on the coast due east from Disney.  Have a blast

    Maggie

  • CJRT
    CJRT Member Posts: 524
    edited September 2013

    Thanks, Maggie! Hoping we start getting some fall weather down south. Hope you're doing well with your recovery.

  • mags20487
    mags20487 Member Posts: 1,591
    edited September 2013

    last surgery was a piece of cake.  Have taken up walking now too and this morning went further than I could before! Would def love to see some fall temps come our way!

    Maggie

  • belleeast
    belleeast Member Posts: 653
    edited October 2013

    Thanks,Cjrt and Mags! I am having a good time,went to Universal yesterday,day of rest today. Headed to Magic Kingdom tomorrow,going to be a long day!



    I wish I would have realized you girls were close,we could have made plans to get together!



    Mags,my SIL's father and his friend went to Melbourne beach yesterday while we were at Universal,they really enjoyed it,what a small world lol.



    I got my walking in yesterday,at least I hope it counts!



    I am enjoying myself as long as I don't think about -my weight,my thin hair etc ugghhh I hate my hair!!! I keep praying it will get thicker,I get so depressed about it,i feel like cutting it all off and start growing it all over again. Blah humbug!!



    Cjrt, you got it girl,in my thoughts and prayers.

    Hugs everyone!
  • CJRT
    CJRT Member Posts: 524
    edited October 2013


    Well it did come back cancer and same pathology. Dr said same treatment moving forward. I have to admit I am disappointed. After my short pity party, I will regroup and focus on the fact it hasn't gotten bigger and no new spots have popped up.


    Belle- so glad you had such a wonderful vacation!!! Your family is so beautiful and everyone looked so happy! What an awesome time together!

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