Starting Chemo March 2015

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

    K- YAY!!!!! What a relief indeed!

    A- she is elusive. Trying to hunt her down. She would be an awesome advocate!

    In the meantime, I just found out an op-ed I wrote (same shit, different day haha) is going to be published tomorrow in an online publication called "Truthout" . When I get a link or something shareable, I willupdate.

  • Trvler
    Trvler Member Posts: 3,159
    edited October 2015

    Awesome, Katy!

    Ksusan: That's great! Phew.

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

    I am relieved, and I'm having that problem of not being sure whether to believe him. Fortunately, I see my PT and my ND within the week, so I can get a couple of other opinions.

  • Meme117
    Meme117 Member Posts: 194
    edited October 2015

    Great news KSusan!

    Katy looking forward to your op-ed.

    Diane may my itchiness is menopause. I have yet to start tamoxifen so who knows what's going to happen.

    Started radiation boosts today, pretty easy and I'm only on the bed for 2 minutes, technology is amazing. I didn't turn red till this week, week 5 and I have some peeling underneath. Upto now I've been pink with a bit of tightness and a sharp pain once in awhile.

  • eheinrich
    eheinrich Member Posts: 792
    edited October 2015

    Ksusan - what a relief.

    My lump is probably (another) bit of inflammation. My body has had inflammatory reactions out the wazoo regarding this TE. The lump was filled with clear liquid & is being sent for culture to be sure there's no infection. I'm on a 2day dose of anti-biotics in case. My next fill is Monday instead of tomorrow. I'm so tired of having my life revolve around one sad looking half-tit.

    Yay Katy - look forward to reading it. Re the newswoman: I don't think she means any harm by recommending LGFB, it never occurred to me to check the ingredients. If I had had a facilitator who didn't keep saying "we don't get handed more than we can handle" I might also have been a cheerleader for the program. Go easy on her.

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

    Eileen, sounds good. Fingers crossed. When will the analysis be back?

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

    E- I promise to be my charming self. That interview was a couple years old..she may have new info and feel differently today. Except for when I am just blinded by rage and stupidity (my rage, THEIR stupidity) I catch many more flies with honey. Except for when it comes to these big cosmetics companies. I'm starting to feel they are the evil empire. And my light saber is a bit dimo

    Standing by forthe fluid analysis. Hope the meds get it done. I know you are so.sick.of.this.


  • Lovemylab
    Lovemylab Member Posts: 80
    edited October 2015

    thanks Theresa, I will give that a try! My GP said to drink 1 part cranberry juice to 3 parts water and that helped today. How can this not be infection? So weird.


  • Italychick
    Italychick Member Posts: 2,343
    edited October 2015

    it may just not be at a level they can measure yet, but we know our bodies. Or it could be inflammation. If the cranberry juice helped,your ph level could be off. Nothing is worse than having symptoms down there for me.

  • eheinrich
    eheinrich Member Posts: 792
    edited October 2015

    Try coconut oil!!!! Different problem but it is so helping my "lady issues" :)

  • Italychick
    Italychick Member Posts: 2,343
    edited October 2015

    Yes, coconut oil there has helped me too lol!

    Eileen, when are you seeing doctors about your breast issue

  • slothabouttown
    slothabouttown Member Posts: 449
    edited October 2015

    Yay Susan! Eileen did you get seen today too?

  • Italychick
    Italychick Member Posts: 2,343
    edited October 2015

    new hair look ya think? Lol!

    image

  • eheinrich
    eheinrich Member Posts: 792
    edited October 2015

    I was in today. Possible infection, culture was taken. I've had big inflammatory reactions to EVERYTHING done w/ recon. It seems like this is more of the same. I have antibiotics in case and news to follow. The stuff she sucked out of the lump was clear so she thinks it's just more inflammation.

    Thanks for checking in. I may speak for the group but you guys are my first check in in the am - well after I start coffee. and my support always.

    xo

  • Italychick
    Italychick Member Posts: 2,343
    edited October 2015

    Fingers crossed it is just infection and antibiotics take care of it. I can't believe the things we say on here, yay for scar tissue and infections!

  • slothabouttown
    slothabouttown Member Posts: 449
    edited October 2015

    We had our annual all staff meeting this week where the insurance rep comes and explains changes to our benefits package, 401k stuff etc. The insurance rep made a big deal out of the fact that "out of 150 employees ONLY ONE PERSON HIT THEIR MAXIMUM OUT OF POCKET THIS YEAR."

    Guess who? And thank you so much for pointing that out. And then following that announcement with our rate increase. Sigh.

  • Italychick
    Italychick Member Posts: 2,343
    edited October 2015

    sloth, I have to fill out a health questionnaire now for our new health plan, courtesy of me because the other insurance company wanted to jack up our premiums. So I have to give a detailed explanation of everything I've done medically for the past five years.

    This whole situation sucks terribly. Pretty sure I would get the same award you did. I looked up Hippa stuff, and it says they can require the health questionnaire be filled out. They can't deny me coverage, but I feel violated because I think our health benefits person will have access to my completed questionnaire. Now doesn't that just give me a warm fuzzy. The form does say if I falsely report anything or neglect to report anything they can deny my coverage. So now I have to go to my doctors and figure out what I've done in the past five years. I am so pissed off.

  • slothabouttown
    slothabouttown Member Posts: 449
    edited October 2015

    Too bad they don't have something equivalent to a "safe driver reward" since I've rarely cost them anything for the past twelve years. And I guess I'm fortunate to not have to go through the questionnaire bullshit Theresa.

    And Eileen so glad your lump isn't concerning. Thanks for saying that about the group. I feel the same...started getting cranky when i had to work late tonight cause I wanted to get home and make sure everyone checked out okay today!

  • SueH58
    SueH58 Member Posts: 632
    edited October 2015

    Well my remaining rads can now be counted on 1 hand. Yeah!  My tumor was up against my chest wall. While I trust these folks implicitly, I wonder how they are able to target something so deep.  But then again I'm not an Oncologist nor a physicist. 

  • IndyGal35
    IndyGal35 Member Posts: 340
    edited October 2015

    Sue, my RO said that the radiation field passes through the body instead of staying inside. You may even notice some pinkness on your back or side where the rads have been exiting.

    Man, Eileen. I'm just so sorry about the recon problems. All we want is to try to return to normal. I honestly think that recon issues have been the most psychologically difficult chapter for me so far. I agree with T. Is IS horrible about the things we actually cheer for on this page.

    Linda, your insurance rep is completely out of line. You are so funny and graceful. I would've been tempted to just interrupt and say loudly, "Sorry, Guys! It was me. I had breast cancer, but I'll try harder next year." Questionnaires may be legal, but I still think that the comment is a HIPPA violation. If I walked into a crowded elevator at work, saw an armbanded patient that I recognize, and said, "Not to alarm anyone, but someone in this elevator is really spending a ton of money here," I'd be fired. It's sad that insurance gets held to a different standard.

    Maryellen, your rads experience is similar to mine. No major burning until week 5 with random sharp pains and lots of swelling in the ribs and sternum. Hang in there! You're getting so close to being done!!!!!

  • IndyGal35
    IndyGal35 Member Posts: 340
    edited October 2015
  • shaz101
    shaz101 Member Posts: 718
    edited October 2015

    love it Lee 😂

  • Trvler
    Trvler Member Posts: 3,159
    edited October 2015

    Do any of you get those calls from the insurance company for a nurse or a wellness coach? I have had the company my husband works for also call. I tell them no to everything. I don't trust the data remaining private either.

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

    I am way behind. I hope all dealing with healing complications kick the infections and such quickly and that healing and pain relief kick in soon.


    I know several have had lumps lately and I obviously know how awful that is mentally. Most are very likely scar tissue, suture granulomas, etc. Keep an eye on them even after having them evaluated though. I was told last January that my new lump was scar tissue. Since a really, really strong feeling told me otherwise, I asked them to biopsy it. Even after being removed I was told it looked like scar tissue. And you all know the results of that; it's why I'm here. I did have a different lump biopsied 5 months before that which was just inflammation. I am not trying to be alarmist and mulled over posting this much of the night because no one needs more fear. I just could not forgive myself if someone blew off a lump that seemed to be changing because a doc told them it was scar tissue.

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

    Kbee, that's why I'll have my ND palpate it next week, the surgeon again in early December, and my MO in January. My MO is imaging-happy, so I ought to be able to get a US if any of these 3 think it's warranted. My wife looked up stats and says it appears that of those who have recurrences, only 2% are in the area where I have the lump.

  • BBwithBC45
    BBwithBC45 Member Posts: 727
    edited October 2015

    I read up on this group every day too. I don't get to post often, short on time and energy after going back to daily commute to my work. Many thanks to all who keep this thread alive.

    My eyebrows and eyelashes are thinning again. I wonder if they will fall out completely once more.

    At the time of my original diagnosis the radiologist told me to repeat the MRI on my other breast in 6 months. He said we needed to keep an eye on the changes in it. I had a TE until recently so I couldn't get an MRI, but now that I had my exchange surgery I got the order from my MO. I have an appointment for tomorrow. Very nervous about it, because my other breast has been hurting from time to time, like a bee sting. I just got a call from my MO that my insurance did not approve the MRI because "it's not medically necessary ". I'm just beside myself.

  • eheinrich
    eheinrich Member Posts: 792
    edited October 2015

    BB, that makes me so sad and angry. Not medically necessary??? Really?

    Lee, I agree that recon has been hard. Part of it for me is because I chose to do this. Treatment is long over but I chose to do multiple surgeries, weekly appointments, more pain, etc. In the quest to get back to "normal" I'm extending the not normal. Is a second boob worth it? I think right now it seems not, but hopefully when all is said and done I'll be glad I did it.


  • BBwithBC45
    BBwithBC45 Member Posts: 727
    edited October 2015

    Eileen - it boils down to some bonus-hungry person who practices medicine without license, who "knows better" than an oncologist and a radiologist. I'm still shaking. They waited till the last minute to let me know that they denied. My husband is on the phone with them right now. I can feel my blood pressure going through the roof.

    Sorry you're having issues with the reconstruction. I know some women choose to stay flat. I never even considered not to do the reconstruction. I have talked to some women who did implants and are very happy with them. I've had some extra "adventures" with my TE, but nothing horrible. I have my implant now, but still too fresh from the surgery to decide if I'm happy with it. I hope your issues will calm down soon and you will be happy with your decision.

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

    to all of my dear ones suffering with pain, fear, frustration, and the STUPID insurance bullshit which is an invasion of your privacy, I am sending out a giant group hug. I feel the same way about all of you. I'm sorry that (for once) my reply is short today, but I just learned that my op-ed has been published this morning in Truthout. I'm emailing, posting, and calling everyone I know. Once you click on the link there are several ways to share it, email, FB, Twitter. Please help me make this last push to stop the duplicitous look good kill you program. Thanks sistas:

    http://www.truth-out.org/opinion/item/33442-americ...


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

    And a special thank you to Kbee. I know it must be with such mixed feelings every time you hear about a second suspiscous lump. Your bravery and tactfulness never goes unnoticed. Thanks for the gentle advice to stay "optimistically vigilant".


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