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  • Peabrain
    Peabrain Member Posts: 268
    edited April 2016

    @HausFrau - here's my two cents on the ovaries. I am BRCA positiveso I knew they were going to have to come out. And I wanted to do all my surgeries at the same time but the surgeons' schedules didn't work, so I had the BMX and reconstruction, then chemo, then rads, and then the ovary removal. Looking back I am very glad to have it work out this way. One, the BMX was bad enough to recover from without my lower torso hurting too. Two, it was nice to still have working ovaries going into chemo. Three, after the ovary removal, the menopause symptoms are so much worse than the mild ones from chemopause (I am 48). Surgical menopause (when you take out the ovaries) is like hitting a wall (sleep issues, hot flashes, metabolism changes, etc) and I would avoid it unless there is a really good reason. I am taking Effexor at a low dose and it is just starting to help with the symptoms. But unless you are BRCA pos, or there is a compelling study I would hang onto them.

    Others might have a different perspective.

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  • Cocker_Spaniel
    Cocker_Spaniel Member Posts: 1,204
    edited April 2016

    Minxie dear friend here I was thinking you had gone on your cruise and was living your life to the full. What an awful time you have had. I knew you were having marriage problems and I'm sorry to hear that it broke down but thrilled to hear you have a wonderful new man in your life. Sometimes bringing up blood can be for other reasons so I am hoping for the best for you. Give your man a chance. You say he is wonderful, so give him a chance to show you just how wonderful he is. He might be just the comfort you need by your side while you are going through these tests. Thinking of you dear friend and will be in your pocket as you were for me. xxx

    Ally dear one I am so sorry that your surrogacy didn't work out but I am praying that the next time will produce your wonderful baby that is so badly wanted. Hugs always. xxooxx

    From one Annie to another Annie, welcome. Yes as Ally and Greenae said cover your basis. Call your BS and get yourself into an oncologist as soon as you can. They will be able to advise you on your next step if there is one. Don't hesitate, I would be making an appointment straight away in case there is a long wait for an appointment. Get in there girl and put your mind to rest. You may not need treatment but only an oncologist can help you there.

    Mike I can't go back on my computer to read your post again without losing all that I have typed but congratulations to you and Kathy. Hope you enjoyed your vacation in Florida and glad to know you are back.

    Shorfi in relation to whether we did or not do anything to get cancer this is a question we all ask ourselves. But, it is what it is and there is nothing we can do about it. We didn't cause breast cancer I can tell you that for sure. Being fluffy will not cause it either so take no notice of the people who speak but do not know what they are talking about. I know people blame it on alcohol but if that is true why did I get it because I have never drunk alcohol in my life. Why do non smokers get lung cancer. Why does someone who only eats healthily and exercises get it. It's the luck of the draw unfortunately. The trick is to pick yourselves up and get on with the rest of your life as best you can and pray for hope that it never returns.

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  • Curlyq1974
    Curlyq1974 Member Posts: 144
    edited April 2016

    Ladies, I am so excited I can barely stand it!!! I am scheduled for my tissue expanders to be finally removed and my new silicone implants to be inserted!!!! OMG!!! I cannot wait. What a ride. Phew!

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  • anotherNYCGirl
    anotherNYCGirl Member Posts: 1,033
    edited April 2016

    Cocker, - you, and many others here, write so beautifully that I have little to say that can add to your thoughts. Thank you for posting what I can not say so eloquently!

    Curly,- Good luck with your switch! It will be a wonderful change for you!

    Ally, - You have been in my thoughts, - and I have my fingers crossed that the saying 'third time's the charm' is the way it will be for you!

    I really should keep notes as I read the posts, so that I can remember the many responses that I plan to make!

    Re that bump on my neck, - the enlarged node now seems to be a tendon (according to a sono that I had on Monday. Whew!). My bloodwork is not perfect though, so I will be retested in a couple weeks.

    Thank you for being here! You are all in my heart, - even if I dont post often or mention names.

    Hugs from NYC

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  • Meadow
    Meadow Member Posts: 2,007
    edited April 2016

    Ally, thank you for the update, I have not responded earlier, as every time I tried my words stopped and my heart just poured out silently to you. That is not a good description, but I just ache for you so strongly, that words fail me. I am brighten by the fact that you sound upbeat and in a good place....and for this I am so thankful! Please know how much we all love you!

    Curly, yay to you! New boobies!

    Another, thanks for the update on the bump, great news!

    ((((COCKER))))

    Hello to all!

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  • Triplegirl
    Triplegirl Member Posts: 27
    edited April 2016

    Hi Val,

    I am right behind you in treatment.  I was wondering how much your tumor shrunk?  I finished A/C end of March and have had 3 Taxol treatments so far.  I was 3 cm to begin.

    Thanks , Janice



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  • hanley50
    hanley50 Member Posts: 146
    edited April 2016

    Hi Janice,

    Wanted to chime in and let you know that I finished AC on 03/23/16 and had to have an ultrasound due to a lump in my other breast (first and only lump I've ever been able to feel throughout this entire ordeal that turned out to be just a cyst) but when I had the ultrasound my breast surgeon checked my cancer side at the same time and said my lump went from 1.3cm to 9mm and the lump in my lymph node went from 1.7cm to 5mm. I have since had 2 of 4 dose dense Taxol. Sadly my MO said no more scans until after surgery (unless I find another cyst to be checked ha ha!) so chemo seems to be doing what it's suppose to. I just wish it didn't suck so much!

    Maryann

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  • Valstim52
    Valstim52 Member Posts: 1,324
    edited April 2016

    Hey Janice

    Since i have IBC and and 2 IDC tumors, it was easy for them to see an improvement. On AC my 2 IDC tumors all but disappeared,and my IBC symptoms have all but gone. The largest IDC tumor was 4cm and now is less than 1 cmm per the ct scan. I had a swollen lymph node even I could feel and it lit up the pet scan, now you can't feel it. So they are hoping for good margins.

    I always knew and expected chemo would not possibly get rid of it all, but at least shrink it, and that appears to be what has happened. I have susrgery May 24.

    Ofcourse you never know till you get the pathology report.

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  • hanley50
    hanley50 Member Posts: 146
    edited April 2016

    Wanted to let everyone know that even though I don't post much, I read everyday and appreciate each and everyone of you

    Maryann

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  • Meadow
    Meadow Member Posts: 2,007
    edited April 2016

    Maryann, great news, happy for your response to chemo. I am glad to hear from you and thank you for being here with us.

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  • LifeAloft
    LifeAloft Member Posts: 150
    edited April 2016

    Janice, I had AC and now on weekly Taxol/Carbo, just had #6 yesterday. My tumor was 4.5x4cm and you can't feel it anymore. My node was 3cm and that's not palpable anymore either. Both my MO and BS are very happy with my response, as it took a while and we were actually talking surgery if it didn't start to respond. But as Val said, we really won't know everything until surgery.

    Best wishes to you

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  • Meadow
    Meadow Member Posts: 2,007
    edited April 2016

    of course, thinking of you Val, Janice, lifealoft, every one in treatment and approaching surgery

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  • Anniekay80
    Anniekay80 Member Posts: 127
    edited April 2016

    Hello ladies

    Just wanted to let you know my exchange surgery went well yesterday. While I was there I asked every nurse and resident...basically anybody dressed in scrubs if I should have seen an oncologist. 100% were first completely shocked I hadn't seen one, then they read my chart, then they all gave an answer of "yes, see MO ASAP!!!

    So all you kind ladies were absolutely right! I knew you were right already, but it's nice that all the professional nurse's (who IMO often know just as much as Drs but work harder and are more approachable and understanding) .....well they confirmed y'all were correct in your opinions. Thanks again ladies.....you really lifted a burden from my shoulders!

    Cyber hugs........

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  • HausFrauMi
    HausFrauMi Member Posts: 124
    edited April 2016

    anniekay-- if you want to come to Beaumont Troy for Oncologist--I love Dr Hanna and his office. Can't recall his partner at the moment they are awesome ;)

    Minxie- good luck with the scans but I would still go on the cruise!!!!!!! Assuming medically it's ok kwim?!

    Just finished #3 taxol and home a few hours. Itchy eyelids have already started. What the heck people. Strangest SE! It will last til at least Monday.


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  • PurpleMinion
    PurpleMinion Member Posts: 165
    edited April 2016

    Hausfrau, have you told your doctor/nurse about the itchy eyelids? I have a lot of allergies and that can be a sign of a systemic allergic reaction. They may want you to take an additional antihistamine.

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  • Milwmama
    Milwmama Member Posts: 115
    edited April 2016

    Hausfrau-Be glad you had the Taxol. Was supposed to have #6 yesterday and again my counts were too low so it was a no go. A pattern has formed. Two weeks after the Taxol/Carbo I'm too low. Adds at least two weeks on to my schedule. Boo!

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  • PurpleMinion
    PurpleMinion Member Posts: 165
    edited April 2016

    Milwmama,

    That is how it went for me: C+T, T, break, T, C+T, T, break... Don't worry, you'll make it through. I do wonder if Neulasta might be something they would consider to help you not get delayed like that, maybe ask.

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  • megomendy
    megomendy Member Posts: 141
    edited April 2016

    Milwmama, I had to skip 2 weeks in a row of Taxol/Carbo also. Yes, it extended me 2 more weeks, but I got them all in and done.

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  • HausFrauMi
    HausFrauMi Member Posts: 124
    edited April 2016

    I'll have to ask about the eyelids. I already take Claritin in the morning and Zyrtec at night...and I get the Benadryl before the Taxol. Guess I'll call.....of course hate to bug them over the weekend.

    My counts were ok only thing getting low was hemoglobin I think. But nurse said it had to get to 5 or 8? before they would do anything. I was at 10. 10.3 was the cutoff. Was surprised platelets were as good as they were.

    You can get Neulasta if they skip a week of chemo. But I don't miss those SE's!!!

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  • Meadow
    Meadow Member Posts: 2,007
    edited April 2016

    Haus, I had a Neulasta shot after every chemo treatment, 24 hours later, every 2 weeks, boosting bone marrow for white cell production. I only was sick once with brochitis and missed a treatment. Can you eat red meat to boost your hemoglobin?....do you still have an appetite?

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  • cassylou
    cassylou Member Posts: 52
    edited April 2016

    Hi everyone, I have so much love to give to you all. Ally - I am so sorry to hear that you are going through so much heartache. Things will turn around for you I'm sure.

    After reading through past posts, i have a few comments which may or may not help. I had taxol and carbo blend weekly. Basically, I had taxol and carbo for about 6 weeks. the carbo knocked my bloods around too much though so we had to stop it. We then continued with taxol only. When I had my double mastectomy, I had a complete pathological response.

    on a separate matter, i had a double mastectomy, reconstruction from tummy, with ovary and fallopian tube removal, in 1 op. It all went well and I recovered well. Because of the ovary removal, I am now a 40 year old woman, in the throws of instant menopause. I would not recommend you take this avenue unless absolutely necessary.

    I am a few days over my 1 year since diagnosis. I've just changed my photo from my bald pic, as gorgeous as it was x

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  • Milwmama
    Milwmama Member Posts: 115
    edited May 2016

    No Neulasta for me as I'm a weekly and you need two weeks between. They just let my body do it's thing in the skipped week. I know I will get them in, it just throws things off my imaginary timeline :) Returning to work being one. That is starting to look less likely As my husband wants me to not go back and take the SSDI we qualify for.

    As stated in another thread, I now get to enjoy a few things that most likely would have been missed because of surgery. My most exciting here is Summerfest. We have tickets to see. Chris Stapleton one night and Def Leppard/Tesla another. All chemo and surgery free 😆👍👍

    So bring it all on, then we can do surgery and sit and heal the rest of summer.

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  • LoveMyVizsla
    LoveMyVizsla Member Posts: 813
    edited May 2016

    MilwMama, we have tickets to Billy Joel and then Chicago, but I will still be in the middle of chemo. I'm going, come hell or high water!

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  • PurpleMinion
    PurpleMinion Member Posts: 165
    edited May 2016

    I am seeing Gary Numan in two weeks and I will go even if I am puking and wearing a mask and gloves!

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  • 6feetover
    6feetover Member Posts: 320
    edited May 2016

    PurpleMinion: Awesome!!! I've been a fan of his since I was like 10 or 11, lol!

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  • Meadow
    Meadow Member Posts: 2,007
    edited May 2016

    Cassylou, congrats on one year out! That is so wonderful! And I LOVE the new pic, and yes, the old one was lovely too.

    I am loving the summer concerts you are all planning! So exciting. Adding in, I am taking my grown two boys (ages 23 and 27) plus my darling daughter in law, to see Paul McCartney in August. So excited for this fun trip together! My hubby has to work, we saw Paul back in the 90's together and the Spouse said that he could skip. I guess someone has to work to pay for the tickets!

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  • Cocker_Spaniel
    Cocker_Spaniel Member Posts: 1,204
    edited May 2016

    This last weekend I travelled with my youngest daughter to Auckland to see Josh Groban in concert. It was a brilliant show. We stayed overnight and then the next day did some serious retail therapy. Was a great weekend.

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  • KSteve
    KSteve Member Posts: 486
    edited May 2016

    You all got me in the mood so I thought I'd jump in on the concert bandwagon! Have tickets with my DD to see Keith Urban at a great outdoor amphitheater this summer. Great seats plus some great girl time!! Life is so good. :)

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  • Meadow
    Meadow Member Posts: 2,007
    edited May 2016

    Sounds like some great concerts!

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  • HausFrauMi
    HausFrauMi Member Posts: 124
    edited May 2016

    concerts sound fun! They have gotten so expensive :(. I don't know how I would do with big crowds/rowdy. If we could get guaranteed seats I'd be ok but my lawn days are over! Or pay for kids tickets or babysitting not a cheap date!

    No Neulasta during Taxol. I have had a low grade fever 99 past 2 days so freezing then throw in a hot flash!!

    I will see about adding some additional red meat! I'll go Wednesday for this weeks lab draw.

    Cocker--love Auckland!! We showed the kids the 1st Lord of the Rings over the weekend. Before kids we visited the North Island including Hobbiton so it was neat to tell the kids about it. Can't wait to take them one day. 2 of our sightseeing things were cancelled due to poor weather. I know they will love it as much as we did!

    Cassy congrats on 1 year. And I think I'm good with the just lumpectomy now!

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