Starting Chemo in December 2013

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  • Binney4
    Binney4 Member Posts: 8,609
    edited April 2014

    DJJ, I noticed your questions regarding swelling, so hope you don't mind if I drop in on the conversation. For those of you wondering about lymphedema risk reduction, there's information about that here:

    http://www.stepup-speakout.org/riskreduction_for_l...

    Since you're hearing sloshing in the swelling you're experiencing, it's very unlikely to be lymphedema. The fluid is lymphedema is distributed throughout the tissues (that's why it's so hard to get rid of!), so it isn't pooled, and doesn't slosh. If it's sloshing, that's more likely to be a seroma, fluid trapped in a pool or puddle in the area where your surgery was. Avoiding seromas is one of the reasons for the drains we have after surgery, but sometimes it can gather again after the drains are pulled. Your surgeon may drain the seroma with a syringe--sounds way worse than it is, since the area is still numb from the surgery. 

    I know we're sometimes told that a single lymph node removed, or a prophylactic mastectomy, is not a problem for lymphedema, but it's good to keep in mind that ANY surgery or trauma to the chest/breast area can result in lymphedema, even if it has nothing to do with breast cancer. So taking precautions is smart for every woman who has been treated for breast cancer.

    I really hope none of you ever join our "Swell" Sorority, but please know we're here to help with information and encouragement on the Lymphedema forum if you need us.

    Be well!
    Binney

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  • Leealice
    Leealice Member Posts: 87
    edited April 2014

    6 days since last chemo and this one was a doozy. For the first time I threw up some and passed out twice. Feeling better everyday and I just want to get stronger and put these chemo se behind me.

    Jodi-you always make me laugh. Thank you

    Keepthefaith-I will have my port out on Wed. at St. Davids. One less thing out of our body!

    DJJ-I had a lot of swelling after my lumpectomy. My incision was at the 12 oclock area and my swollen boob stretched it so its not a nice scar now. I should have worn a major supportive bra but didn't realize it

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  • RHGSR
    RHGSR Member Posts: 774
    edited April 2014

    leeAlice - I'm so sorry that last one knocked you down so much. Were you getting DD Taxol? I'm so happy for you for being done and making it through it all!! Hang in there. Who is taking out your port? I had my surgery and port placement at St. David's by Dr. Coombs-Skilles. 

    DJJ - how are you feeling today?

    Regarding Lymphedema- my doctors never really touched on it either. I've noticed my arm where the nodes were removed (21 total) is slightly larger than my other arm. I asked my PS about it and he said he could refer me somewhere if I needed it. But no one ever offered info unless I specifically asked. I'm not doing anything about it right now. Too many other appts to add something else right now.  

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  • Jodi040812
    Jodi040812 Member Posts: 383
    edited April 2014

    I have had some swelling and go to therapy already:(. I bought the Lymphediva sleeve but it is too big and I had marks when I would take it off.  Like fat rolls around my wrist look which means too big.  So, they want me to try another brand. I need like a kid size but not sure they make that.  Under 5 feet here, so my arms are not long and the gauntlet really was to big.  Therapy is covered for me, and it seems to help.  The only things that could have triggered it was picking up my the baby and the precious injury to that hand.  They said the injury was probably it.   The sleeve does help if fitted correctly.    

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  • Lisaj514
    Lisaj514 Member Posts: 719
    edited April 2014

    this is the most active forum I'm on. There is always someone here and I'm so impressed by all of you (us). Such great women, so much support, encouragement and honesty. Thank you

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  • Lisaj514
    Lisaj514 Member Posts: 719
    edited April 2014

    Jodi, have they thought of custom garment. Juzo or jobst make them according to exact measurements of your arm and hand. Insurance should cover it because of cancer dx. Insurance does not cover ready to wear but if you are an unusual size (very small) custom may be indicated. I'm an OT and I used to do lymphedema rx  and used a local vendor for Juzo that would measure and order. Your PT will help. What injury did you have?

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  • keepthefaith
    keepthefaith Member Posts: 2,156
    edited April 2014

    Leealice, sorry to hear that the last one was so rough. It's uphill from here! Let me know how your port removal goes. My BS is Jane Nelson. MO didn't want port removed until she knew my counts were good about 3-4 wks PFC. I wanted to do it a few wks ago, prior to rads, but my BS was floating around some islands in the Bahamas at that time, I think!

    I hope you all get your SE's under control. Maybe it's just me, but it seems that the SE's have been really rough for some of you younger ladies, vs. those of us who are older.

    A welcome rain and thunderstorm today, here in Central TX!


     

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  • jackieak
    jackieak Member Posts: 169
    edited April 2014

    I wear the arm sleeve on both arms when traveling via airplane, only once so far, but intend to for a long while.  I had the entire sac removed on the right and the sentinel on the left.  I had the seronoma on the right side, a hard lump, took about two months to disappear.  I do allot of stretching now, but don't do that too soon.

    Neither my BS or PS went into detail on this, and I did have PT for a month which helped the cording, I had to ask for this referral, it wasn't offered.  Make sure to talk to the RO regarding lymphodema, they need to discus this more and educate us.  I had two RO consults, and they both told me 1 out of 3 can get LE from radiation, either mild or severe.  

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  • Jodi040812
    Jodi040812 Member Posts: 383
    edited April 2014

    Lisa- I broke my right hand in. Spiral brake, so three fractures.  And my hand swells between thumb and index finger.  Hand gets puffy.  

    I will call tomorrow about a custom one!  Especially is insurance covers it!  

    AC question- feeling of lump in throat or chest/ indigestion??  Annoying!  

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  • RHGSR
    RHGSR Member Posts: 774
    edited April 2014

    Jodi- I had terrible indigestion with AC. My doctor told me to take Prilosec or Pepcid daily. You may want to check with your MO. 

    Holli

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  • Jodi040812
    Jodi040812 Member Posts: 383
    edited April 2014

    thanks Holli!   It is like being pregnant again isn't it?  

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  • RHGSR
    RHGSR Member Posts: 774
    edited April 2014

    that's how I described it to people!! A REAL bad pregnancy!! Ha ha. You even get pregnancy brain but it's chemo brain instead! 

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  • Jodi040812
    Jodi040812 Member Posts: 383
    edited April 2014

    exactly!!  I haven't gotten BRAC tested, but it makes me want to get ovaries out.  I know they will say no if negative.  Just worried about being ER and PR positive.  And!  My ovaries actually hurt right now.  Is that normal on AC?  TMI too with what looked like ovulation time without going all the way into it.  Seems to have slowed down, but was quite something this week. If I were trying to conceive, i would have thought it was a great time.  Still doesn't mean it is that and probably is all hormone going crazy.  Anyone else experience this?  My hot flashes are gone from taxol and worried the estrogen is back.  Or is just a different SE.  I am a mess with worry.  If it is not this it is that.  I have issues no... I have cancer lol!

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  • RHGSR
    RHGSR Member Posts: 774
    edited April 2014

    Nothing is TMI anymore :0)

    I didn't have ovary pain with AC. But really bad with the Taxol for me. I started AC on Dec 30. I cycled in January. But that was my last full cycle. I say "full cycle" because it seems like I "spot" each time I have Taxol (no spotting with AC only Taxol). My first Taxol felt like mild labor pains. 

    My insurance is refusing to pay for BRCA (we've tried twice). I too am wanting my ovaries out. I plan to talk to my MO about it next week. We probably need to do something "permanent" for birth control. If it will benefit me to have ovaries out, I'd rather do that than have hubby do vasectomy. 

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  • missy6758703
    missy6758703 Member Posts: 218
    edited April 2014

    I had a total hysterectomy 11 years ago but they left one of my ovaries, I am ER+ and I want that ovary GONE! I also have pain in my lower abdomen while on Taxol and worry all the time about it.  It's sort of good to know others have the same pain.....not really a pain, but more of a dull ache.  I have my 10th Taxol in the morning......seems like each week gets a little bit tougher to recover from.  This week I was just super tired and my muscles ache.  Today I'm finally feeling good, only to start all over again tomorrow! I just keep reminding myself......this part will all be over on April 21st!! I also think I am getting a little bit of neuropathy......nothing painful, but more of a tingling in my fingertips and the bottoms of my feet itch.  Hope this is as far as it gets! 

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  • Binney4
    Binney4 Member Posts: 8,609
    edited April 2014

    RHGSR, I hear you on the "too many appointments"! During treatment it seems like our entire social life is all about doctors! But let me just gently suggest that you get help for your swelling as soon as you can. Here's why: lymphedema is a progressive condition. Unless you get treatment and continue to control it, even though it may not swell any larger it will be doing damage to the tissues inside. Prompt treatment makes it possible to reduce the swelling (which if untreated will become fibrotic and won't reduce), and it helps prevent a nasty cellulitis infection that can put you into the hospital for IV antibiotics--stagnant lymph fluid is protein-rich and warm, the perfect breeding ground for bacteria.

    I know our doctors don't give us the whole story on lymphedema, but that's at least partly because they're not trained in it. (In fact, a survey of medical schools a couple of years ago found that their training involved an average of only 15 minutes of teaching about the lymph system!) That's why it's referred to as "breast cancer's dirty little secret." I'm really sorry so many have not been educated about this life-long side effect of treatment--it is not an insignificant issue. But the earlier you get help the easier it is to get it under control and keep it that way on-going.

    Jodi, custom garments are not always covered by insurance (though you can certainly appeal if they say they don't), but if your insurance paid for your off-the-shelf garments they should pay for custom as well. There are many companies that make them, some of them now in the U.S., which makes it easier and quicker to get them. Here's how properly-fitting garments should look:

    http://www.stepup-speakout.org/proper_fitting_of_l...

    Be well,
    Binney

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  • Leealice
    Leealice Member Posts: 87
    edited April 2014

    Holli-My BS is Coomb-Skiles also. She will take out my port on Wed. at St. Davids. I really like her. I was doing TAC chemo, having taxotere, adriamycin and cytoxan all at once. 

    Jodi- For about 10 days after chemo, I have indigestion, heartburn, burbing etc. I have loud gurgling in my throat. My husband keeps thinking its my stomach but no it's my throat

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  • Lisaj514
    Lisaj514 Member Posts: 719
    edited April 2014

    I also do a lot of burping and get the hiccups as well as a lot of gas after chemo. The neulasta shot gives me pain in iliac crest area which is to the side of your low back, kind of like hte kidney area. I used to get a pain like this when I was ovulating (it would be in my low back to one side), maybe that Luke be one of these ovary pains some if you are getting.

    Maybe every breast cancer pt should have a lymphedema eval for baseline measurements. they could pick up any subtle changes and education about prevention and what to look for. Thanks binney4 for the information, it was all good. And in that same link is info on prevention

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  • Jodi040812
    Jodi040812 Member Posts: 383
    edited April 2014

    Binney- well, my garment broke like half of that list!!  The gauntlet covered my fingers over half the way.  I live in a smaller town. There are only 2 ladies in the lymphedema department.  So, maybe I should make an appointment somewhere else.  They had no samples to try on, so I basically spent $160 on two sleeves and just donated them to another lady I met who needed one.  I'll

    Call the companies tomorrow as well as my insurance.  I know a custom one is super expensive so I hope they cover it if I have to go that way.

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  • Crazywabbit
    Crazywabbit Member Posts: 563
    edited April 2014

    Binney- thanks for all the info. Question for you, is it good to get fitted for a sleeve before RT even if there is no edema now?  I was also quoted about a 33% risk of chronic lymphedema after RT. The way my luck has run lately I will be in that 33%.  I have not been wearing my wedding rings since they are very tight and I am afraid if I get any swelling at all I would  not get them back off. I had to use cooking oil to get them off before my surgery. 

    Barbara

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  • jackieak
    jackieak Member Posts: 169
    edited April 2014

    is it the steroid, taxol, or LE that causes hand swelling?  Mine is bad for 2-4 days after taxol, also I have allot of puffiness and my entire back aches...is this taxol building up as I go?  My surgical sites also have ping pains like needles at times...odd happenings.  Went for my walk, first time my legs felt like lead in them, only did a mile today, and I'm exhausted....

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  • RobinLK
    RobinLK Member Posts: 840
    edited April 2014

    not sure which it is either. I am leaning toward the taxol......

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  • kjfromca
    kjfromca Member Posts: 283
    edited April 2014

    Kat - The mapping was easy.  They put me on the CT Scan table, positioned my arms, ran the machine over my chest area and then gave me three tiny tattoos.  I did go home and cry for a few minutes.  It wasn't that the mapping was bad, I just hate having to go through this.  I start rads tomorrow and have been in a bitchy mood all day.

    I have been reading the posts on lymphedema and rads.  I am seeing my PT once a week during rads so that if there are any changes it will be dealt with right away.  I plan on wearing my sleeve during the week just in case.

    I also was reading that some of you are have cramping with Taxol.  I had cramps and my ovaries hurt for a couple of days after treatment.  I have not had a period since Dec.

    Holli - Thanks for sharing the cute pics. of your babies.... adorable.

    DJJ - I am glad you are getting a little break from the neuropathy, hoping it will completely let up and not come back.....ever.

    Kim

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  • Lisaj514
    Lisaj514 Member Posts: 719
    edited April 2014

    haven't cried today till now. I hate going to bed because my mind just spins on these days, like a hamster on a wheel. Dreading tomorrow. Will try some meditations from doyogawithme.com. And some positive affirmations, if I can think of any. I try to get real tired so I can sleep but it doesn't help. Its11:20 and my husband has been asleep for the past hour. He doesn't know what to say so he usually says nothing and then can just fall asleep, while I'm upset, pissed, anxious, sad, mad at him for not saying the right things or not saying anything ...not fair. Sometimes you just have to take care of yourself and do what you need. So will try some guided meditation now while in bed. Night all. Good luck to everyone else getting chemo tomorrow, I think there are a few, robin? Who else?

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  • RobinLK
    RobinLK Member Posts: 840
    edited April 2014

    I am a Thursday girl, but definitely understand where you are coming from. Actually broke down and took some Benadryl last Wednesday night to shut off my brain. That was in addition to my Ativan. I figured it puts me to sleep in the BGC, why not while I am in my bed? 

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  • Jodi040812
    Jodi040812 Member Posts: 383
    edited April 2014

    hope you get some rest!  I was just telling my husband that my imagination is so vivid.  When I close my eyes for even a little bit, I'll have crazy dreams kind of.  Like crazy lol- interview with Beyoncé?  Really?  And I get that body jolt thing too where you catch yourself and wake up. Medicine really messes with you.  Ready for the chemo part to be done:(. And Sometimes especially on here, my eyes are blurry.  

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  • Leealice
    Leealice Member Posts: 87
    edited April 2014

    Jodi- I get the blurry eyes. I think chemo made my eyesight worse. We will see if it corrects now that I'm done.

    Jackleak-I was told the pain ping needles was nerves. Coming back to life maybe?

    Feeling a little better everyday. Going to try relax yoga at the Y today 

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  • Carol99
    Carol99 Member Posts: 116
    edited April 2014

    I still have indigestion, hiccups & I feel like something's caught in my lower throat, 8 weeks out!  I'm back on tums, just like pregnancy.

    It's the gift that keeps on giving, good luck this week brave ladies☀️

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  • keepthefaith
    keepthefaith Member Posts: 2,156
    edited April 2014

    Kim, good luck with your rads tomorrow!  I'm going in for #5 today and, so far, so good. I am at a point now, where I just want this all to be done and get on with my life....I'm not going to let BC win!

    neskir,  good to hear from you. That heartburn is the pits. I hope it eases soon.

    Lisa, maybe you can get your MO to get you something for sleep. I had to take Ambien for a while, but don't anymore. You really need your rest to help you heal. I'm sure it's frustrating for you. I hope you can figure something out. Always come here if you feel the need to vent, rant, cry, whatever!

    Have a great week, ladies!



     

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  • Mikesgirl17
    Mikesgirl17 Member Posts: 260
    edited April 2014

    Kim, good luck today with rads. You'll be fine.  I go for my second one today.  I'll be thinking of you.  It's sad we're all here, but it is such a comfort knowing that someone is out there who knows what we're going through.

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