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

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  • DizzParkMom
    DizzParkMom Member Posts: 316
    edited March 2016

    Also forgot to mention, I went to my neurologist (whom I used to see for migraines) to get her take on my pain. She prepped me well for April appointment with Rheumotologist, did a thorough neuro exam, and said it's definately not fibromyalgia. She said I definately have peripheral neuropathy in hands and feet but it is very minor and there is hope for it to resolve....eventually. She said I am very lucky to have escaped a worse case of it and it is most likely due to the hand/foot icing.

  • lovlilynne
    lovlilynne Member Posts: 405
    edited March 2016

    Hey Jen, how did the appointment go? I wonder if you asked the PS why he/she was practicing in Montana - I mean, you could say it in a nice way, "what is it about Montana that drew you to live and practice here". I don't think that question would be so out of line . . .

  • littleblueflowers
    littleblueflowers Member Posts: 2,000
    edited March 2016

    Hi Lynne! Thanks for the list of questions, I printed and took them. It went really well, I am trying not to Get too excited yet. She went over all my options, including flap and BRAVA, and which ones she did and which she would refer me out for. What she prefers is two rounds of fat grafting and then TE placement, then exchange. She is a member of all pertinent professional organizations and is from Montana, and wants to be close to family. So I'm feeling cautiously positive. I'll meet with guy number 2 next week...

    Edited to add-ok so you want to move fat from my belly and saddle bags to my chest? Ummmm....yes please lol. Maybe the silver lining is finally becoming visible? Cautiously hopeful?

  • Positive_spirit
    Positive_spirit Member Posts: 218
    edited March 2016

    explore your options. You are darn beautiful as is, littleblue. Reconstruction... Take your time to make a decision that is right for you.

  • lovlilynne
    lovlilynne Member Posts: 405
    edited March 2016

    So, I see someone finally started an April '16 discussion (only post on it so far is from our ksusan :-) I think I'll wait a few days to have it get going before popping on to give some encouragement.

  • ksusan
    ksusan Member Posts: 4,505
    edited March 2016

    Nice idea, Lynne.


  • littleblueflowers
    littleblueflowers Member Posts: 2,000
    edited March 2016

    Six month surgeon follow up today. Keep fingers crossed for me! I'm starting to get scared in the waiting room.

  • ksusan
    ksusan Member Posts: 4,505
    edited March 2016

    It will be okay, and you'll check back in with us right after, yes? And I double dog dare you to take and post a selfie while you're waiting in the exam room.

  • littleblueflowers
    littleblueflowers Member Posts: 2,000
    edited March 2016

    lol you are on! You know I'll do it too. Yup....getting more scared and I haven't even been called back yet. This guy never has good news...

  • ksusan
    ksusan Member Posts: 4,505
    edited March 2016

    I know you will. If possible, something salacious using found/liberated medical objects, if you please.

  • littleblueflowers
    littleblueflowers Member Posts: 2,000
    edited March 2016

    My oh shit face

    image

  • ksusan
    ksusan Member Posts: 4,505
    edited March 2016

    It's a good start, but now try for sassy.

  • littleblueflowers
    littleblueflowers Member Posts: 2,000
    edited March 2016

    imageHahahahaha OK I'm calming down a mite. Good strategy k susan- its almost like you are a professional or something lol. This sassy enough for ya?

  • ksusan
    ksusan Member Posts: 4,505
    edited March 2016

    I like it! And believe me, I've seen a lot of women's bodies in the last year!

  • littleblueflowers
    littleblueflowers Member Posts: 2,000
    edited March 2016

    haha right up the nose! Ok, no one needed to see my nostrils. Thanks ksusan, got felt up and the all clear. Whew.

  • ksusan
    ksusan Member Posts: 4,505
    edited March 2016

    Good job! Go breathe and be happy!

  • KBeee
    KBeee Member Posts: 5,109
    edited March 2016

    so happy for the all clear !!!

  • DizzParkMom
    DizzParkMom Member Posts: 316
    edited March 2016

    LOL ksusan, you had me imagining Jen rifling through exam room drawers looking for something to take a picture with.

    Congratulations on the all clear Jen! Remember when we used to be able to take Dr's appts. for granted...and it didn't feel like every one of them was a life and death situation? Those were the days!

  • ksusan
    ksusan Member Posts: 4,505
    edited March 2016

    Okay, Jen, I owe you a photo at my next appointment.

  • Scarlett152
    Scarlett152 Member Posts: 175
    edited March 2016

    congrats Jen and nice pic!

    Dizz - How are you feeling? are you still wearing compression on legs and waist? I can't seem to get my strength back up. The pain is what I would consider bothersome now, more than actual pain. I had my DIEP flap scar revised so that is really tight and there's a little suture that has opened up on my stomach and on the breast fold too. My PS says it is okay and part of the healing, but I didn't have that the first time around. I am so ready to be back in action but every time I try to do stuff, I pay for it later. Of course, I'm fully off pain meds so that is part of the issue, but the Norco was killing my stomach!

    Ok, whining over. Hope everyone else is doing well!

    Sheila

  • DizzParkMom
    DizzParkMom Member Posts: 316
    edited March 2016

    Hi Sheila, glad you are seeing some improvement with the pain. I'm probably at the same stage...more uncomfortable than in pain. (Rant: other than my hands!) I am cheating on and off with the compression. I've been switching back and forth between abdominal and thigh compression. Having both on all the time just makes me claustrophobic. Today I am being bad and not wearing either. Gasp! I'll get back on it tomorrow, but it's nice to be able to breath again. The heat here also makes it very uncomfortable to wear the compression layers. I'm not too concerned since most of the swelling is long gone. I'm only noticing the lumps and bumps of scar tissue forming at the grafting sites, which I read is normal. My thighs are the most uncomfortable. Also, the area just under my breast between my ribs...the skin has that tugging feeling when I walk around (like after stage 1). It's not bad enough to hunch over, but annoying. I'm having a bit of an issue regaining strength too. I was cleared to walk for first 2 weeks, lift under 10 pounds until week 4 (challenging sticking to that), and then I'm allowed to do what I want and am able to do. My P.S. isn't very restrictive at all. Which is good, because I have a hard time following orders. ;-)

  • littleblueflowers
    littleblueflowers Member Posts: 2,000
    edited March 2016

    Thanks for the mojo, you guys! I was doing OK until actually in the waiting room, then started to panic. Ahhh lost innocence. Yes, ksusan, I expect a sassy exam room photo at your next appointment. As a side note, its impossible to take a selfie with your eyes crossed. Just found that out lol

  • lovlilynne
    lovlilynne Member Posts: 405
    edited March 2016

    Hi Ladies, with the April 16 group starting up, I was thinking of compiling a list of "what was your worst side effect from chemo and what did you do about it and are there any lasting effects from it today?" As far as side effects, I'm thinking a wide definition - including trips to the hospital due to infection/low WBC, etc. I'll add it to our spreadsheet, and share (with names and other information blocked) with the April 16 group if it would be helpful.

    Lynne

  • KBeee
    KBeee Member Posts: 5,109
    edited March 2016

    I think some tips would be helpful too, and also a general list of what we did to control side effects in general. I am afraid if we just list the worst then they could be scared, whereas if they see a variety of responses, it could be helpful. I will dig up my tip sheet I've sent to friends and try to post it there.

  • ksusan
    ksusan Member Posts: 4,505
    edited March 2016

    Sounds useful, and maybe add a category for "I didn't have bad chemo side effects" as well? The balance could be helpful.

  • KBeee
    KBeee Member Posts: 5,109
    edited March 2016

    I found my tip sheet and edited it. I'll post it. Definitely pop in and add tips. How would you like us to get the info to you for a spreadsheet, Lynne. I am sure it'd be helpful.

  • lovlilynne
    lovlilynne Member Posts: 405
    edited March 2016

    You can post it here - I'll add the request to FB page too when I'm home (can only access via phone now, and it's a PITN) and we can post it there.

    Hm, I didn't think that the worst would be overwhelming, overall I was thinking it would be positive because we all survived it.

    I think my worst side effect were the mouth sores. I tried to prevent them by sucking on popsicles during adriamycin infusions and used salt water rinses, and then added Lysine once I started getting them, but I still got them, and it was very painful. I sometimes feel like my mouth is more reactive since chemo - I'll feel like I might have a sore starting, but it doesn't.

    The close tie is my foot neuropathy, but even though I hate it, it's not as annoying as the mouth sores were.

    Lynne

  • KBeee
    KBeee Member Posts: 5,109
    edited March 2016

    I do think that seeing that from some of us the worst things were mouth sores would help looking at it that way. My mind went to being admitted, etc!!!!!!

  • littleblueflowers
    littleblueflowers Member Posts: 2,000
    edited March 2016

    You are a straight up sweetheart to think of this, Lynne! Worst for me was nausea brought on by acid stomach.

  • ksusan
    ksusan Member Posts: 4,505
    edited March 2016

    My toenail beds were a bit tender.

    I had an easy time of it. On TC #2 I started getting flushed and warm so they gave me more steroids (they had cut them back) and I was fine.

    If we want to count the port, I had some pain and went to the ED where they did x-rays and confirmed that it was placed correctly, not broken, and I did not have a clot.

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