April 2015 Chemo Crew... Starting in April? Please join us!

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  • bluedog
    bluedog Member Posts: 212
    edited October 2015

    GingerChi, don't worry about the port. I still have mine and will be starting rads on October 20.

    Why would a TN still have her port, you ask? Good question. Well, speaking of drug trials, I will be entering a trial of the NeuVax vaccine when I finish rads. It's not specifically for TN, but I happen to qualify. The main qualifications are HER2 neg (but not 0 expression of the receptors -- has to be +1 or +2) and either positive nodes or, if you don't have positive nodes, must be ER/PR neg. Everyone in the trial will get Herceptin, hence my port, and then some will get the vaccine and the others will get some other thing (escapes me at the moment) that is an immune system stimulant. The trial doesn't have a handy acronym, but if you want to read about it at clinicaltrials.gov, the identifier is NCT01570036.

  • lovlilynne
    lovlilynne Member Posts: 405
    edited October 2015

    So not to get complicated, but are we doing 6 PM central where you are Cherie? If so, Eastern would toast at 7, Mountain at 5, and Western at 4 (is 4 too early?). Also, let's not toast to chemo - let's toast to killing cancer or no more chemo, but definitely not toast to chemo :-)

    I had to have my port taken out for radiation - also on the side of my cancer. And, you have to give it at least a week for the swelling to go down so they can map your radiation accurately. From what I was told, when you have MX, you shouldn't have to have radiation, especially with no positive nodes.

    Lorraine, glad everyone survived the weekend without you. I am going to ask MO to test my thyroid function too.

    Hope everyone has a great weekend. My company doesn't have Columbus day as a holiday, so I'll be working, but no rads that day, so it will be like a mini vacation! Chuck has it off, so I'm going to put him to work. I finally had a chat with him - we have just barely been tolerating each other, hardly talking, etc. I started out by asking him how he was feeling about us - I figured he must be miserable. Nope. He is perfectly happy except for lack of sex (of course). It just made me feel worse - how can you be miles apart with your partner? How can they not see how unhappy you are? In the end, he asked me to help him be better. I asked him to really think about whether he wanted to stay because it seems like he takes every opportunity to leave either physically or mentally. He said he wanted to stay.

    I realized that he just is so, not sure what word to use, simple? I remember a friend telling me that he's "earth bound", and I think I know what she means. I don't think he's really given much thought to any of this - not the cancer, what it means, how I feel, how he might be able to help me, how he could step up and take some initiative to be more responsible with the family - none of it.

    And now I'm left with just more to do because now I have to help him be "better". I felt better at first having talked to him, but now I think I feel worse because nothing's changed. I don't have the energy or the motivation to work at this - we went through counseling before, and I feel like I'd just be saying all the same things again. It's just more work for me. It just still seems like my life would be easier without him in it.

    Lynne

  • Jackbirdie
    Jackbirdie Member Posts: 4,693
    edited October 2015

    Oh Lynn- I'm so sorry. Hugs to you. No answers but bottomless bucket of hugs. Why does it have to be so complicated?

    Send in the clowns.

  • DizzParkMom
    DizzParkMom Member Posts: 316
    edited October 2015

    I'm sorry for the lack of response from your DH Lynne. I can understand the feeling of it being more work for you. Not only are you feeling unappreciated, it feels like he's making it your responsibility to help him make you feel more appreciated. I would tell him what you told us. Tell him that you don't have the energy right now to make him a better husband. If it's important to him to maintain the relationship, he will have to find the energy because you aren't going to draw him a road map. You deserve so much appreciation for everything you have juggled since your diagnosis.

  • Jackbirdie
    Jackbirdie Member Posts: 4,693
    edited October 2015

    nicely said Dizz.

    And more hugs, Lynne.

  • littleblueflowers
    littleblueflowers Member Posts: 2,000
    edited October 2015

    Oh Lynne- I wish we could do more than listen. Thinking of you 💛

    So I was in a constant state of gut clenching anxiety punctuated by panic attacks for the last month or so. Yesterday at my MO visit, he gave me lexapro. 2 pills in, and the constant burning anxious feeling is mostly gone, and I can laugh again. Just wanted to share, in case anyone else is feeling similar.

  • GingerChi
    GingerChi Member Posts: 252
    edited October 2015

    Lynne....you have to be beyond frustrated with DH. I know you're exhausted, physically and emotionally, I'm just so sorry that you're having to deal with this right now.

    As far as the toasting goes.....we got here as a group and thats the thing to celebrate. Its been a long haul for everyone since April! It seems like a freaking lifetime ago, then again I blinked and summer was gone.

    If RO recommends rads, I want to hear how he made the decision. I don't meet the general criteria I don't believe, but do wonder about proximity to the chest wall. I cant remember the measurement from the path report ......they got clear margins, but my tumor was very high on the breast and almost into the cleavage.. not alot of tissue in that area.

    littleblue, glad the meds are helping, and you're feeling better!

    Bluedog, good luck with the trial! Keep us posted on how its going!

  • Addie29
    Addie29 Member Posts: 307
    edited October 2015

    bluedog this isn't the new vaccine that mayo in fl was going to be doing is it? I know that myself and littleblue sent in for that trial- fingers crossed we get accepted for it. But anyway good luck to you and the trial. Drinks at 6 sounds wonderful:)

  • gkodad
    gkodad Member Posts: 188
    edited October 2015

    New thinking on rads after mastectomy - it's changed over the last few years:

    If any one of the following present, then there is a conversation about radiation.

    1. 4+ postive nodes radation required; 1-3 positive nodes highly recommended (and the data supports that recommendation),

    2. Large tumor - over 5 cms always recommended, Smaller also considered if highly aggressive.

    3. Lymphovascular invasion (you may have to ask about this one, since it's not always in the path report).

    4. Close margins - defined differently by different doctors, but generally 1mm to 2mm of clear tissue between tumor and chest wall.

    I had 2 of the 4 (2 nodes and large tumor) so I knew I was getting radiation.

    ;

  • ksusan
    ksusan Member Posts: 4,505
    edited October 2015

    I had only one + node and went for everything I can throw at it.

  • GingerChi
    GingerChi Member Posts: 252
    edited October 2015

    Thanks for the info gko and ksusan!! I just spoke with a friend who finished rads yesterday and used the RO I'm being referred to. She loved his staff, but he was always in a hurry and wouldn't take the time to listen to her concerns about fatigue, or check out her skin. She has some pretty bad burns. Soooo, I have to search out someone else. In this area, there's not alot to chose from without driving 1.5 hrs to Birmingham. Nothing is ever easy!

  • Jackbirdie
    Jackbirdie Member Posts: 4,693
    edited October 2015

    Thinking about Kbee- after running through that gauntlet I imagine her heaped in exhaustion. Except she is one of the most energetic women I've ever known.

    How about running something up the flagpole Kbee: let us know you're ok.

  • Stephmoen
    Stephmoen Member Posts: 563
    edited October 2015

    had a mammogram and no chip!! That's good news I dont need another surgery the marker must have fell out during surgery or something who knows but I'm happy as can be that I had a complete response to chemo they couldn't find any cancer anywhere makes the hell I went through all worth it!

  • ksusan
    ksusan Member Posts: 4,505
    edited October 2015

    Very good news, Steph!

  • Jackbirdie
    Jackbirdie Member Posts: 4,693
    edited October 2015

    that is good, Steph. You have been through hell.


  • Positive_spirit
    Positive_spirit Member Posts: 218
    edited October 2015

    Great news, Steph. Feeling happy for you.

    Littleblue, anxiety is awful!!! I am also on lexapro and I am glad it seems to be working for you. Hugs

    Lynne, thinking about you and sending you hugs. I am thinking about the winter BC retreat author Betty Bory retreats and was with wondering if it would give you some quiet space to think things through. I met some women who were struggling with similar issues with their DH. One woman said that her husband miss d the old her, and she told him that the game had changed and the old her was not coming back. I look at photos from last year prior to diagnosis and I think that the cancer has changed things for me...I want more out of life for sure. Take care and a big hug!



  • Positive_spirit
    Positive_spirit Member Posts: 218
    edited October 2015

    jackiebirdie, I keep meaning to say this but I think about you often and thanks for the support

  • Positive_spirit
    Positive_spirit Member Posts: 218
    edited October 2015

    image

    Our front yard...see the leaves turning

  • Positive_spirit
    Positive_spirit Member Posts: 218
    edited October 2015

    image

    Happy October. Some people are still pollinating...shake my head!

  • Jackbirdie
    Jackbirdie Member Posts: 4,693
    edited October 2015

    Positive- thank you and thanks for the pics! I love the idea of a retreat. For Lynne and me too! Harmony Hill in WA state has 3-day free ones if anyone lives near.

    www.harmonyhill.org

    They haven't released their 2016 dates yet and 2015 is full. But you can get on the waiting list

    It seems fall is just around the corner here, but I'm still picking from my garden! This just the other day.

    image

  • ksusan
    ksusan Member Posts: 4,505
    edited October 2015

    That looks like a nice retreat center!

  • bluedog
    bluedog Member Posts: 212
    edited October 2015

    Addie, no this is a different vaccine. I saw my MO yesterday and asked about the Mayo TN vaccine, and he said it's not ready for trial yet. He urged me to go for this one. I have been concerned about dealing with possible Herceptin SEs when Herceptin is not part of the standard of care for me AND maybe not even getting the vaccine. But, he said there is evidence Herceptin may be beneficial even for low HER2 expressors. So, I guess I'm going to go for it. I think it's probably feasible only for someone who has a test site nearby, as it involves multiple visits. Since there's one only 20 minutes from my house, I guess I should help contribute to the advancement of science?

  • DizzParkMom
    DizzParkMom Member Posts: 316
    edited October 2015

    It's 4:20 here in Arizona...I've got my Bai 5 Blueberry drink ready for a toast....also on a heavy dose of klonopin and hydrocodone. CHEERS to all of us kickin' cancer's arse!!! AND being strong enough to survive the aftermath. We've faced our very own Red Dawn and stood courageously eye to eye against this beast. Never more proud to be a part of a group.

  • Jackbirdie
    Jackbirdie Member Posts: 4,693
    edited October 2015

    Dizz- my kinda cocktail. I know I'm not part of this group, but I'm raising my glass to all of you. You've become warriors and friends. Good job kicking the bitch's ASS.

    Cheers!

  • Jackbirdie
    Jackbirdie Member Posts: 4,693
    edited October 2015

    Dizz- my kinda cocktail. I know I'm not part of this group, but I'm raising my glass to all of you. You've become warriors and friends. Good job kicking the bitch's ASS.

    Cheers everyone

  • GingerChi
    GingerChi Member Posts: 252
    edited October 2015

    Here Here Dizz and Jackbirdie! #Survivors!

  • Positive_spirit
    Positive_spirit Member Posts: 218
    edited October 2015

    Toast!

    What beautiful vegetables! Retreats are my new way to rejuvenate, I think. Gingerchi - next autumn, want to come see the leaves and do the retreat? It's about 45 minutes from our home in Massachusetts.

  • Addie29
    Addie29 Member Posts: 307
    edited October 2015

    bluedog okay thanks for the info

    And I did have a sip of wine at 6pm with thoughts of all of us fine ladies. Cheers-

  • KBeee
    KBeee Member Posts: 5,109
    edited October 2015

    great news Steph!!!!

    Gingerchi, that MO you described sounds exactly, exactly like mine. I am very burned too. If it keeps the cancer away, it is worth it, but they do very little to help support you through it. I think you are wise to look for a doc who has better patient rapport.

    This past week was fire prevention week, so I worked pretty much all day, every day. I work tonight and then I will to catch up and try to get some rest. Tuesday I seeMO for the first time since taxol 11


  • KBeee
    KBeee Member Posts: 5,109
    edited October 2015

    I was posting before and got a call.

    Katy, love the garden veggies!

    I was I a call at work at 6. Cheers

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