Charleston Bound, part 2

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  • PinkHeart
    PinkHeart Member Posts: 1,193
    edited January 2015
    Amoc,

    Wishing you the best outcome from your vLNT surgery! It has been two years since my vLNT with Dr Kline and I have not had swelling since. 😊
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  • philomene
    philomene Member Posts: 45
    edited January 2015

    I thought that Dr. Massey didn't do stage 1 in Charleston?

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  • MartyJ
    MartyJ Member Posts: 1,859
    edited January 2015

    Dr M does do Stage 1 in Charleston, but usually uni. For bilateral she goes to NOLA. That said, she will do bilat in Charleston if she has an extra pair if hands to work with.

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  • goodrhue
    goodrhue Member Posts: 60
    edited January 2015


    brca35, pinkheart, bethcw, lbrewer thanks for the good wishes and info!  And thanks to everyone here for posting good questions and answers Smile

    I ended up getting a condo in Isle of Palms off of vrbo (471971).  It had great reviews and I wanted my sister to have someplace nice to go relax and work a little, and for me and my DH to be after I leave the hospital.  I dealt directly with the owner and asked about a medical rate - he said he didn't have one BUT that he would pay the tax, so that's a 13.5% discount!

    The instructions they gave me had a formula for calclating how much protein to eat - it would be something like 140 g/day for me - impossible!  But I have started adding some protein powder to my breakfast smoothies, and having a high (like 20 g) protein bar for a snack, and being more concsious of eating lean meat.  I eat pretty healthy but have always liked veggies and dessert as much as meat, so I have to work at it.  (I would give up meat in a heartbeat if I had to choose).  I was already taking a multivitamin, and started taking Vitamin C before I traveled for the holidays- I think that helped me successfully avoid the flu.

    Looking forward to being on the other side of this - Jan 15th!  if any of you in the area want to stop by and visit me....you know where I'll be through the 19th! (East Cooper Medical Center), and will be in town until the 22nd.

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  • lbrewer
    lbrewer Member Posts: 766
    edited January 2015

    Goodrhue I noticed you switched from arimidex to tamoxifin. I'm thinking about the same. Would you mind sharing your experience and reasoning? I can't stand this joint pain much longer

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  • PinkHeart
    PinkHeart Member Posts: 1,193
    edited January 2015
    Goodrhue,

    Sending more positive energy to loads you already have. Even though I'm past my big surgery I'm constantly pro protein with my diet.

    I'm minutes from ECMC if you want a visitor toward the end of your stay. 😊
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  • goodrhue
    goodrhue Member Posts: 60
    edited January 2015


    lbrewer,

    My oncologist switched me after 5 years on arimidex - just her standard procedure. I've seen alot of different approaches on the discussion boards - I think each oncologist has their own philosophy and it also depends on the patient circumstances.  I was fortunate and did not have noticeable joint pain with arimidex - I honestly can't tell much difference.  I think my hot flashes got a little worse - they had subsided alot since the intitial chemo-induced cold-turkey menopause (and I had my ovaries removed shortly after I finished radiation).

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  • Amoc1973
    Amoc1973 Member Posts: 158
    edited January 2015
    Thanks! Good luck to you too LAstar. Mary I am just doing a lymph node transplant. I did the lumpectomy with radiation & faired well. Except my arm decided to give me trouble. Who would've thought id end up with a paiful, swollen arm but my breasts would look fine? I'm really hoping the proc helps.
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  • Amoc1973
    Amoc1973 Member Posts: 158
    edited January 2015
    Oh! Thanks too pinkheart!! I really hope I have the results you've had. This lymphedema has really messed me up & so many ways. It would be nice to have something good happen for once
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  • PinkHeart
    PinkHeart Member Posts: 1,193
    edited January 2015
    Hi Amoc,

    Do u mind sharing how many hours surgery is for just vLNT and what your donor site will be?

    Mine was from groin and done in conjunction with Stage 2 flap revisions.
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  • mary625
    mary625 Member Posts: 1,056
    edited January 2015

    Dear Amoc--I'd also love to hear about your experience. I'm a Dr. M patient, and I may be going back for the transfer. My donor site will be the neck.

    The reason I was asking about whether you were getting a stage I was because you'd need to have a lot of help with bathing. That was one of the main things they ask the family member to do.

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  • lbrewer
    lbrewer Member Posts: 766
    edited January 2015

    washy point do you decide to do lymph transfer? My arm doesn't really swell but it aches most of the time and I feel I am losing all the strength in it

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  • Amoc1973
    Amoc1973 Member Posts: 158
    edited January 2015
    Hi all. Sorry I'm not fast at responding. I was told the transfer alone would be about 4 hours. Honestly it could be 14 hrs. That part doesn't matter to me as I'll be asleep & it'll feel like 5 min. I am a anesthesia provider. So the anesthesia part to me is what I am most comfortable with. My donor site will be my neck. After tons of scans my surgeon is comfortable with that site. I specifically looked for a surg that could do the neck. there aren't many. Most do the groin. If you are already doing recon then I see this (the groin) is a no brainier. You are alteady going to use that area, But I'm not doing recon & I want least poss risk of new lymph issues. All my research led me to Dr Marga. She knows her sh*t. I also saw Chang who knows his stuff as well. From what I gathered just doing the LNT wouldn't be much different from my original axillary node dissection. I'm sure itll be uncomfy. My surg said the LNT alone usually isn't very painful. I don't expect much pan. But I will be sure to let you guys know as soon as I am up to it. As far as when you should consider this surgery would b a good question for your physician. Never hurts to see someone & talk things over. There are a lot of surgeons out there that just want to cut. I've been in the business a while. It's really hard to find someone who wants to do the best for you...even if the best means no surgery. I feel Dr Marga is über thorough and wouldn't recommend the procedure unless indicated. If I need help bathing then I think I won't be bathing for a while as its my dad that's going with me (husband has to work & deal w kids) for the 2 weeks in Charleston.....can't have my dad bathing me....yuck....no way. That would scar me for life. I'd love to hear anyone else's experience with the LNT & am really hoping I can share some good news with you guys soon regarding my own surg. I will b in charleston on Wed and have surgery next Friday (a week from today)
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  • PinkHeart
    PinkHeart Member Posts: 1,193
    edited January 2015
    My donor site was from groin but not because of it being donor site for flap for recon surgery. Dr Kline does not take lymph nodes along DIEP flaps like some surgeons. I had SGAP anyway.

    If I had had vLNT alone the surgery would have been 2.5 hours. I flew home three days later. Had excellent East Cooper hospital CLT therapist. Was no need to spend two weeks if time and money in CHS. Then went home to my own PT-CLT who on does LE treatment for cancer patients. Primarily breast cancer. I was hesitant to have nodes taken from neck as saw patients of my CLT with LE swelling of face and neck which then gave me a what if ... Dr M certainly knows her sh$t so you are looking at a bright future sans LE or significant relief!
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  • Amoc1973
    Amoc1973 Member Posts: 158
    edited January 2015

    thanks pink heart! I hope you are right & I get some relief. It's very scary the entire removal of node thing & posts new LE. I know it's poss to get LE from donor site. I believe dr M wants me to stay close in case of complications. Esp since it will involve my neck....close to airway....I think the site is a bit more risky in relation to normal post op issues that can occur. She explained how they don't use cautery to control bleeding as this fries the lymphatics...more risk for hematoma postop but using cautery destroys what they are trying to preserve. It's all so interesting really. Please pray for me or do a rain dance or whatever u guys believe in for me :) Im so happy to hear the good results. I hope thatll b me posting soon. Pinkheart....when didn u we results? What was ur postop routine with compressiin?

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  • MartyJ
    MartyJ Member Posts: 1,859
    edited January 2015

    Amoc - I did not have VNLT, but know lots of Dr. M's patients who did. If memory serves, bathing won't be a problem. It would be different if you were having flap surgery - then you would have lots of challenges. Dr. M probably does more VNLT than just about anyone in the country so you are in great hands. The two week stay is not unusual - especially with the neck patients. She closes so nicely that you may never have visible scar. Our weather will be rainy when you get here, but you should have sun and mild weather after your hospital discharge. Nurses on 3 HVT are super. I do have to admit - food is not good. Your dad may want to sneak some in. Also, there is a Rite Aid drug store within a block of the hospital on Calhoun Street - perfect place to fill all those scrips you will be getting.

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  • Amoc1973
    Amoc1973 Member Posts: 158
    edited January 2015
    Great! Thanks Marty
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  • lbrewer
    lbrewer Member Posts: 766
    edited January 2015

    Marty.

    If I remember you mentioned getting laser scar treatment. If you don't mind, could you tell me where you went?

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  • mags20487
    mags20487 Member Posts: 1,591
    edited January 2015

    Dr m did my VLNTX last may and I could not be happier.  Be sure to follow her instructions.  She is amazing.  There is a lot of therapy to follow through with after but wowowowowow.  My arm so rarely swells and I do not wear daily or nightly compression anymore.  Today my arm is a little wonky and I tried to put the compression on but took it off after a couple of hours.  Will see how it is in the morn and maybe will be wearing it tomorrow.  I am not sorry that I did the surgery with her and would do it again.  I had to have a pseudo bursa removed at the same time as my vlntx so surgery was a bit longer than the 4 hours but the sites of the transfer -- neck and underarm there was never pain at all with them.  The drain from neck is a little weird but otherwise not an issue at all.    I hope your results will be just as super as mine were AMOC!

     

    Maggie

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  • MartyJ
    MartyJ Member Posts: 1,859
    edited January 2015

    lbrewer - I went to a cosmetic dermatologist who had lots of lasers for her practice. I went in every 2 to 3 weeks. It helped with redness and in flattening raised scars

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  • lbrewer
    lbrewer Member Posts: 766
    edited January 2015

    thanks Marty. My scars fortunately are not raised but they are a little different color than the surrounding tissue.

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  • MartyJ
    MartyJ Member Posts: 1,859
    edited January 2015

    I was amazed at how the color changed - and this was done on old scars - Like 15 years. Can't wait to see how it goes with the new ones. I should add that Dr. M suggested I let the scars mature for 2 years before hitting the laser. Since different portions of the line have been opened at different times, I am waiting til late spring to begin.

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  • lbrewer
    lbrewer Member Posts: 766
    edited January 2015

    Marty I think my doctors should have just put in zippers!

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  • lbrewer
    lbrewer Member Posts: 766
    edited January 2015

    has anyone ever talked to dr Klein about rejuvaderm? I think I saw that he did it last time I was in his office. This disease makes me look and feel so much older! I quit taking my femera about a week ago and I can actually walk pain free now. I had it filled with the tea brand this time and we will see if that makes a difference. It may be tamoxifin in my future!


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  • MartyJ
    MartyJ Member Posts: 1,859
    edited January 2015

    you want the Juvederm fillers? Facial? I think Dr Kline sends patients to a facial PS. At least that is what he told me when a friend asked about having him so face work with here Stage 2b.

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  • lbrewer
    lbrewer Member Posts: 766
    edited January 2015

    oh well i guess all the surgeons have their targets !


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  • bethcw
    bethcw Member Posts: 98
    edited January 2015

    Just wanted to say I'm sending positive energy and good vibes to goodrhue today!

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  • PinkHeart
    PinkHeart Member Posts: 1,193
    edited January 2015
    Goodrue,

    Hope you are doing well and new flaps/breasts looking good too!

    I'm sorry I almost forgot your surgery date. It's hard tracking without dates posted at top of thread anymore.

    Keep us posted when you are up to it. 😊
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  • HighBeams-14
    HighBeams-14 Member Posts: 53
    edited January 2015

    Hello Ladies, I am scheduled for Stage 2 SGAP on Tuesday, Jan. 27 with Dr. Kline. What can I expect with the recovery process? Any hints or preparation that I need to be doing? My husband will be going with me and we will be staying at the Comfort Inn. Luckily, we can just drive from Savannah.

    Haven't been on the boards in awhile. Been busy helping my daughter with her newborn daughter. Felt good to be concerned with the normalcy of life for a bit instead of surgery concerns. Hope everyone is having a Happy New Year!!!Thanks in advance for your insight.HighBeams
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  • goodrhue
    goodrhue Member Posts: 60
    edited January 2015

    bethcw and pinkheart - so good to hear from you!  I am doing wonderfully.  I'm so glad I decided to come here.  Dr. Craigie, Kim and all the nurses at East Cooper have taken great care of me.  I was released yesterday and we're staying at a condo in Isle of Palms until Thur.  Just saw Dr. C this AM.   Apparently I  have set a new record for not being in pain - no pain meds since Sat. AM except Tylenol!  All vessels sound good!  This was SO much better than my imagination had been conjuring up :)  AND I HAVE CLEAVAGE !!!

    I hope all you other Charleston bound ladies are recovering well.  Very thankful for the advice and recommendations you've all shared.

    -goodrhue

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