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March 2011 chemo-lounge

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Comments

  • Jules59
    Jules59 Member Posts: 148

    Kay, congrats on being done.  It's a great feeling, isn't it?

  • divinemrsm
    divinemrsm Member Posts: 6,613

    Good luck with the RO meeting today, Jules!

  • PennyCookson
    PennyCookson Member Posts: 356

    Jules - Interesting info on how long it takes to recover - make me feel a bit better as I feel well but have nail probs/v little hair still and legs still hurt doing anything significant.

    I would not worry too much about RADS - I am 3 weeks into the 5 weeks course and have not been tired or had problems with cough/swallowing etc they talk about.  Main symptom is neck area is now red and a bit itchy and I suspect will get worse by the time the two weeks are over, but thats easy to deal with after chemo.

  • lilylady
    lilylady Member Posts: 478

    bikenyc-I definitely have hair envy!! My hair on top is 1 inch long but I only have about 1 hair per inch. None at all on the sides.

    Kay-so glad you are done. I am 2 weeks PFC and just got back on my feet. I haven't got the gumby legs or anything but my stamina is crap. Food just got better the last couple of days. Going to work down my list of cravings.

    Divine-I have been thinking about you all morning. I know your excision was today. Hope they get the margins they are looking for.

    Jules-that's some good info about recovery. I asked my onc "Will I ever be normal again?" He laughed and said this time next year this will all be like a bad dream.

    I go tomorrow for my pre surg physical-and of course another blood draw. This is a new family doctor for me. I hope I like her. I DO NOT like the person who answers her phone-very rude. I had to fill out a huge 8 page medical history. Best part was what meds are you currently taking "NONE". The BS sent me a scrip for pain meds for the mx but hoping i won;t need those either. I will be coming home with a pain ball that lasts for 4 days -after that I should be OK i hope

  • ksmatthews
    ksmatthews Member Posts: 743

    Penny so glad to hear you say rads arent too bad, and lilylady my dr told me the same thing about all this being a bad dream this time nxt year!

  • Silia
    Silia Member Posts: 265

    Divine - thinking of you today and picturing clear margins!!

    Kay - Yippee, you're pfc!!  Cannot wait till I can say that. (Great song -- so perfect for where we are collectively these days...)

    youngmama - How are you post surgery?  Comfortable I hope.

    Jules - Let us know how RO appt goes.  Penny keeps making me feel better about the rads piece when I get there...

    bikenyc - thanks for sharing pics.  your hair is impressive already.  So glad your thyroid surg is behind you!

    timerdog - Good luck with your TE placement tomorrow.

    stilts - congrats on plowing through your Taxol Txs - you are in the home stretch!

    Maxine - Congrats on kicking out your presentation.  Gotta be a good feeling.  Re: lymphedema, I have a specialist appt tomorrow a.m. to get a pre-surg assessment and exercises to hopefully avoid it (God willing)

    Penny - re: "odd color" nails, it may mean they are lifting off the nailbeds.  Hopefully you'll be able to hang onto yours.  So far I've lost both big toenails, both thumbnails, and a couple of additional finger/toenails -ugh.  I think it ties to my first dose of Taxotere that my body couldn't handle.  Thanks goodness they reduced it...

    dizzyakira -- Of course, you are remembered!!  So great to have you chime in and give an update.  Cannot believe that woman on the subway.  Glad your kids could laugh at her.

     mdg - Did you go with silicone or saline implants?  I'm thinking I'll go silicone.

    Kymn - I am also easily pooped out and find it frustrating.  Jules' MO's guidance re: the same length as the chemo to bounce back makes sense and will help me manage my own expectations.

     To those of you I haven't mentioned here, I appreciate ALL of your comments and support and company here in the lounge.  Hugs all around!!

  • Kymn
    Kymn Member Posts: 887

    Morning Ladies,

    thanks Jules on the info for how long it takes to recover physically. I was starting to think there was something going on with me besides the cancer crap lol. I just hate being so tired and getting up out of bed is such a chore now I swear my body feels worse now then when I was getting chemo. As for nails I havent lost any so thats a good thing. My hair is coming in pretty good I think I have full coverage on my scalp and its now a dark colour not that baby bird down colour cant wait to have it long enough for a little gel.

    my song for the day by my lady peace Life is Waiting for you

    How many times have you been pushed around?
    Was anybody there?
    Does anybody care?
    How many times have your friends let you down?
    Was anybody there?
    Did anybody stare?

    How many time have your friends let you down?
    Just open up your heart
    Just open up your mind
    How many times has your faith slipped away?
    Well, is anybody safe?
    Does anybody pray?

    Oh, Life is waiting for you
    So messed up, but we're alive
    Oh, Life is waiting for you
    So messed up, but we'll survive

    How many days have you just slept away?
    Is everybody high?
    Is everyone afraid?
    How many times have you wished you were strong?
    Have they ever seen your heart?
    Have they ever seen your pain?

    Oh, Life is waiting for you
    So messed up, but we're alive
    Oh, Life is waiting for you
    So messed up, but we'll survive

    She gets high
    She gets lost
    She gets drowned by the cost
    Twice a day, every week, and all her life
    She gets high
    She gets lost
    She gets drowned by the cost
    Twice a day, every week, and all her life
    Oh, Life is waiting for you
    So messed up, but we're alive
    Oh, Life is waiting for you
    So messed up, but we'll survive
    All messed up, but we'll survive

  • Stilts
    Stilts Member Posts: 228

    Had a dream last night that my hair was long enough to run my fingers through and curl (Ha Ha)...wishful thinking...I actually don't mind my wig that much unless it's really hot but it sure will be nice to have real hair again !!!  Glad to read that many of you are getting your energy back PFC..guess I'll have to be patient when the time comes. Have a call into my ONC to see if I can try some Gabapentin gel (manufactured by the Pharmacy system I work for) for my feet in addition to the acupuncture...today they feel like someone has rubbed them down with very rough sand paper !!! Off to the gym...just read another one of those studies on outcomes in ER pos. BC patients....gotta get some more weight off !!!

  • Silia
    Silia Member Posts: 265

    Stilts -  Can't remember if it's you or someone else with neuropathy -- but have you tried B Complex 50 mg?  Did your onc mention this?  Helping me with mine.

    Kymn - THANKS for that song!!  The lyrics caught my attention so I went to YouTube to hear it.  Awesome.  Have you seen the video?  Brought tears to my eyes at the end.  I'm definitely going to download it.

    Recommend everyone check out on YouTube:  Our Lady Peace singing Life.  There's a woman beating her wig at one point... 

    Enough dawdling - now I have to get back to work.

  • Kymn
    Kymn Member Posts: 887

    Yes Silia I have seen the video, made me cry but gave me strenght too, I have a boy and girl about the same age so really hit home, glad you enjoyed it.

    Stilts I know what you mean about the weight I put on 22lbs through this arrgggg

  • bikenyc
    bikenyc Member Posts: 57

    Kymn - I hear you with the lead in the legs feeling.  I was dragging myself up the stairs by the banister, but it feels like in the last week or so it's started to get a lot better. I'm still feelin kinda beaten down but at least my muscles feel like they're showing up for work again.  My onc said at about 8 weeks I would feel 85% again....then the remaining 15% would take a year or two. I can live with that. And hopefully I'm taking better care of myself now, so I'll actually end up feeling even better than before. 

    Penny - so glad to hear the rads aren't too bad.  I nearly flipped out on my thyroid surgeon today on the topic of my levels of synthetic thyroid...I'm so worried if I go hypothyroid in combination with fatigue from rads that it will be as bad as chemo.  Good to know the radiation hopefully won't knock me for a loop.  The simulation was much easier/quicker than I expected.  The little tattoos didn't even hurt going on.   Also found out NYU has free valet parking for rads patients, so that will make the daily visits much easier and cheaper!

  • Jules59
    Jules59 Member Posts: 148

    I met with my RO oncologists for the first time yesterday.  She is a tiny, high energy, fast talking young woman (well, she's a little younger that me).  I think we'll get along well.  My simulation is a week from today.  I was hoping it would be sooner, but she wants to to heal as much as possible after my re-excision before she starts with rads.  She says I will likely have 28 treatments and 5 boosts, not some crazy high number like my BS suggested.

    She also said no tattoos, markers instead.  Then she said no creams or lotions unless and until I have a problem, and then she'd tell me what to use.  I'm thinking, a little aloe couldn't hurt, could it?  Then she gave me some samples (to make sure I'm not allergic) and a prescription for a cream that is very expensive called X-Clair.  She says she doesn't really know if it helps, but if my insurance covers it, I could use it and we could see together what it does.  I am thinking about it.  She also said women with my anatomy (small breasts) have less trouble with burns than large breasted women.

    Penny, you have eased my mind about radiation, and I am anxious to get started.  Don't know when my treatments actually start, but it can't be too soon. I'd like to get it over with.

  • rabbit
    rabbit Member Posts: 74

    Can someone tell me where there is a list of abbreviations? I remember someone mentioning it a while ago and can't find it now. I need to learn some of the lingo LOL

    Hope everyone is doing well!!

    hugs to all 

  • divinemrsm
    divinemrsm Member Posts: 6,613

    rabbit, go to the forum "Waiting for Test Results".  You'll find near the top of the forum "Abbreviations for newbies" pinned up there.

  • Kay_G
    Kay_G Member Posts: 1,914

    And here they are for us lazy gals that hate to go back and forth from forums:

    Topic: Abbreviations for newbies - updated

    Post a reply

    Missions-2010146 Central, NJ Central, NJ
    Joined: Feb 2009
    Posts: 4,041 patoo wrote:

    Abbreviations below are for informational purposes only as taken from posts or submitted by your fellow sisters.  Your medical team is the final authority on any and all information contained in your personal medical records. 

    Any others?  Post here or send me a PM and I will update the list.  Thanks for all who have contributed to date.

    =======================================

    AC - one of the five most common types of chemo given to women with BC. Iit's probably the MOST common drug combination given to women with node-negative (hasn't spread to your lymph nodes) cancer. AC includes two drugs: doxorubicin (Adriamycin), and cyclophosphamide (Cytoxan).

    AI - aromatase inhibitors

    ADH - Atypical Ductal Hyperplasia-no apparant involvement of surgical margins.

    AKA - also known as

    ALH - Atypical Lobular Hyperlasia - cells in the lobules that look different from normal cells, but aren't cancer and more cells than there should be.

    AND - axillary node dissection

    AWS - Axillary Web Syndrome; associated with Cording as a result of surgery/rads.   Requires management by specialists in PT/ LE and myofascial release.

    B9 (Not Cancer)
    BC- Breast Cancer
    Bi-Lat (bilateral, Mastectomy of both breast)

    BIRADS - Breast Imaging Reporting and Data System score. This indicates the radiologist's opinion of the absence or likelihood of breast cancer.
    BM(x) - Bilateral Mastectomy
    BS - breast specialist/surgeon

    BTW - by the way...

    Bump - written to edit a thread up in the listings so someone can find it.

    BWT - But what the.......!

    CC - capsular contraction

    CHF (Congestive Heart Failure) = a side effect of Adriamycin, Herceptin, Avastin and some other chemo drugs but it is not a common side effect. CHF occurs in <1% and 3-4% and 5-10% from Adriamycin, Avastin and Herceptin respectively.  (Heart failure doesn't mean that your heart has stopped working, or has "failed." Heart failure means that the heart is not pumping blood through your body as well as it should.)

    CMF (Cyclophosphamide Methotrexate Fluorouraci) - a commonly used regimen of breast cancer chemotherapy that combines three anti-cancer agents

    CT scan - computerized tornography, used to image the structures of the budy, especially head, neck or trunk.

    DCIS (Ductal Carcinoma In Situ)
    DD ~  Dose dense , Dear Daughter
    DH ~ Dear Husband

    DIEP - deep inferior epigastric perforator: autologous (own tissue) transfer. a refined version of the TRAM flap

    DIL - Daughter-in-law
    DP ~ Dear partner
    DS ~ Dear Son
    Dx (Diagnosis)
    DW~ Dear Wife
    ER (Estrogen Receptive) estrogen receptor positive+ or negative-

    FEC (flourouracil/epirubicin/cyclophosphamide) -  combo that many Canadians, Brits and Aussies receive with one of the taxanes to follow

    FIL ~ Father in law

    FNA - fine needle aspiration

    FWIW - for what it's worth

    GCM - Glucosamine Chondroitin w/MSM (for relief of joint pain)

    HER2 + or -, whether your tumor overexpresses the HER2 protein or not
    HT (Anti-hormone Therapy)
    HRT (Hormone Replacement Therapy)
    Hx - history
    IBC (Inflamatory Breast Cancer)
    IDC (Invasive Ductal Carcinoma)

    IDK - I don't know (something we all said first time diagnosed)
    ILC (Invasive Lobular Carcinoma)

    IMF, infra-mammary fold, the crease/fold under the breast

    IM(H)O - in my (humble) opinion (with or without the ‘humble')

    KWIM......."know what I mean". 

    LAVH - laparoscropic assisted vaginal hysterectomy - a surgical procedure using a laparoscope to guide the removal of the uterus and/or Fallopian tubes and ovaries through the vagina (birth canal

    LCIS (Lobular Carcinoma In Situ)

    LD flap - Latissimus Dorsi Flap
    LE ~ Lymphedema
    Lump (Lumpectomy)
    Lt ~ Left
    Mast (Mastectomy)

    Med Onc (MO) - medical oncologist
    Mets (Metastasis)
    Mil ~ Mother in law

    MLD - manual lymph drainage

    Mojo ~ Sex , or lack of

    MPBC - Metaplastic Breast Cancer (not to be confused with metastatic breast cancer) - an aggresive rare form of breast cancer. See thread of the same name under "Just Diagnosed"

    MRSA - Methcillin-resistant Staphyloccus Aureua, a bacterium that causes an infection that is hard to treat and the bane of women who have had surgery, expecially for breast reconstruction (worth googling for more information)

    MX - Mastectomy

    NAC - A skin-sparing mastectomy will be performed with preservation of the nipple-areolar complex (NAC).

    NB = Navelbine  Navelbine is an anti-cancer ("antineoplastic" or "cytotoxic") chemotherapy drug

    NED (No evidence of Disease

    NP - Nurse practitioner

    NSM - nipple sparing masectomy

    ODAAT ~ One day at a time
    Omph (or Ooph) ~ Ovary removal
    ONC ~ Oncologist
    path=pathology
    PBM - prophylactic bilateral mastectomy

    PCP - Primary Care Physician

    PE - pleural effusion or pulmonary embolism (an example of when you need to chedk with your medical team)

    PET scan - Positron Emission Tornography, used to image metabolically active cells, such as cancer cells.

    PET-CT scan - a combination of PET and CT which superimposes the matebolically active cells that ‘light up' on the bodily structures so that the radiologist is reading a single image.

    PFC = Perfluorinated compounds - suspected carcinogen.  See Pg 5 of this thread for link (note I have not checked the reliability of the source)

    PICC - peripherally inserted central catheter.  When used (occasionally) for chemo, it is sometimes known as an "arm port".  More often used for IV antibiotics such as may be required for MRSA and other serious bacterial infections.

    PILC - pleomorphic invasive lobular carcinoma

    PM - private message

    PPI = proton pump inhibitor (the mechanism of action of drugs like Nexium, Prilosec, Protonix, etc.)
    PR (Progesterone Receptive)  progesterone receptor positive+ or negative-
    PS ~ Plastic Surgeon

    QOL - quality of life

    RADS - Radiation; Radiotherapy

    Rad onc(RO) - Radiation oncologist

    RS - Recurrent Score

    ROFLOL - rolling on floor laughing out loud
    Rt ~ Right
    SE ~ Side Effects
    SNB - sentinel node biopsy

    SOB - short of breath

    SOH - sense of humor

    SX can be used as an abbreviation for 'surgery', or 'symptoms'.  http://www.globalrph.com/abbrev_rst.htm 

    SP - status post

    TAH-BSO - Total Abdominal Hysterectomy - Bilateral Salingo Oopherectomu (uterus, cervix, tubes and ovaries removed)

    TCH - taxotere, carboplatin, herceptin

    TE - temporary expanders or tissue expanders

    TIA - thanks in advance

    TM = tumor markers

    TN (Triple Negative) In regards to negative status for ER/PR and Her2neu status
    TMI-Too much information

    TRAM flap - Transverse Rectus Abdominis Myocutaneous flap

    TX - treatment

    WNL= Within normal limits

    Additional info (thanks Leaf) to consider:

    There can be multiple meanings for some abbreviations in medicine.

    For example, PE is also an abbreviation for pulmonary embolism.  (Tamoxifen users are at increased risk for pulmonary embolism.)

    One acquaintence with a congenital heart defect (CHD) didn't believe me when I told her that CHD is more commonly an abbreviation for coronary heart disease.

    In medical notes, you often have to look at the context.  With some abbreviations, it can be difficult.

  • rabbit
    rabbit Member Posts: 74

    tytytyty!! 

  • maxineo
    maxineo Member Posts: 199

    kymn and bikenyc: I definitely still lack the energy and find that I feel like an old lady going up stairs. I look forward to new energy.

    lilylady: they always tell me that when I have nothing to put on the medications list! 'You're a healthy woman." Yeah, except for that pesky little cancer!

    penny: I am glad your rads are going so smoothly. I have a little bit of skin irritation already, but it's minor thus far. Jules: you will do fine. I can understand wanting to get started so you can get finished! ksmatthews: when do you start?

    Rads are going fine (done with 4), but they really are taking a lot out of me mentally. I leave work at lunch to do my treatment, come back to work, and then go home to kids who keep asking me to do everything under the sun and all I want to do is chill out or take a nap! It's a grueling schedule.  And our cat is at the vet's, as of this morning, for two nights. Kidney issues, which we are praying is not kidney failure and just dehydration.  It just keeps going, doesn't it?

    Here's a crazy question for the day, which I realize I should post in another forum, but has anyone heard anything about lymphedema or breast implants in relation to SCUBA diving? I am hoping to get certified for work but all of a sudden I'm not sure if I should? Seems to me a wetsuit would be good for preventing lymphedema...

  • Kymn
    Kymn Member Posts: 887

    Hi ladies, well I got a call from the caner society today here in the city and a support group in starting up Aug 17...REALLY !!!!!  was only asking about that 7 months ago but gee thanks for getting back to me so quickly...arrgggg.

    I start radiation on tuesday, I am just wanting to get this over and done with. Bought some cream today to start preparing my boob. Forgot the name and didnt bring it in my purse to work but I better do that seeing s I will have to apply it here. Will let you know the name and see if anyone else is using it.

    Have a great day

    Hugs Kymn

  • pasmithx2
    pasmithx2 Member Posts: 224

    Hi ladies, I did my first herceptin-only treatment today. I had to wait for the resident and then wait for the MO and then wait for the pharmacist to mix up my potion. The IV only took 30 min but I was there for over 3 hours.



    The MO had the results for the second CT scan I did last week and he said that the spot on my lung hasn't changed, suggesting that it's the same spot I had 25-odd years ago. I wasn't worried, but it's nice to know it's definitely nothing of concern.



    I got my next TX moved a day ahead so that I can go on my cruise--yay! I will also start Arimidex now that the MO feels that I am probably post-meno. There'll be a whole new set of SE's to watch for.



    I hope all of you doing rads are getting on ok. One day at a time.

  • Kay_G
    Kay_G Member Posts: 1,914

    I know several of us read the Anti Cancer book.  I just saw on this website that the author died today.  He was first diagnosed with a brain tumor over 20 years ago and was only given 6 months to live.  He was 50 years old. It is hitting me hard.  I feel very sad.

    I'm playing FootPrints in the Sand by Leona Lewis for him:


    "Footprints In The Sand"

    You walked with me
    Footprints in the sand
    And helped me understand
    Where I'm going

    You walked with me
    When I was all alone
    With so much unknown
    Along the way

    Then I heard you say

    I promise you
    I'm always there
    When your heart is filled with sorrow and despair
    And I'll carry you
    When you need a friend
    You'll find my footprints in the sand

    I see my life
    Flash across the sky
    So many times I've lied
    And been so afraid

    And just when I
    I thought I'd lost my way
    You gave me strenght to carry on

    That's when I heard you say

    I promise you
    I'm always there
    When your heart is filled with sorrow and despair
    Oh, I'll carry you
    When you need a friend
    You'll find my footprints in the sand
    When I'm weary
    Well I know you'll be there
    And I can feel you
    When you say

    I promise you
    I'm always there
    When your heart is full of sadness and despair
    I'll carry you
    When you need a friend
    You'll find my footprints in the sand

    When your is full of sadness and despair
    I'll carry you
    When you need a friend
    I promise you
    I'm always there
    When you need a friend
    You'll find my footprints in the sand

  • ksmatthews
    ksmatthews Member Posts: 743

    I dont know when I start rads yet.  Have surgery on Aug 5th and then I am sure they will wait 3-4 weeks after that so I assume Sept.  I was told 35 treatments in the beginning.  I am ready to get this all past me and be done!

  • divinemrsm
    divinemrsm Member Posts: 6,613

    oh wow, kay, I hadn't heard that about the Anti Cancer author; sad to hear the news.

  • lilylady
    lilylady Member Posts: 478

    pasmithx2-they did your Herceptin over 30 Minutes?I get my first 1 next week and they told me 90 minutes. I asked if they could speed that up and they said 90 minutes is the protocol. That came from the chemo nurse and not the onc, They also said I have to have an onc visit the same as chemo. I am seeing a 3hr time drain every 3 weeks and am not liking it at all. Any info you can give will help.

  • fluffqueen01
    fluffqueen01 Member Posts: 1,801

    Lilylady....I have graduated from chemo and am now on herceptin. I go in at 9:00. they pull blood work, and while waiting on the bloodwork, they start the herceptin. I also see the onc every time (I believe it is the only way they can get it listed as an office visit or something. A doc friend of ours was explaining it to us). He rolls through at 10:00 just about when I am finishing, and I am out by 10:15 usually. The herceptin does only take 30 minutes, but by the time everything else is done it is just over an hour.

    All you people with hair....I am so jealous now. I kept my hair, eyelashes and eyebrows all the way through chemo.It thinned considerably but I could wear a baseball cap and be fine. Wore a wig when we went out formally.

    Chemo graduation was June 14 and on two weeks later hair was molting again. On July 19, I noticed most eyebrows were gone and I had about three eyelashes on each side. Figures I'd be the one to lose it after. Eyebrows are flying back in, eyelashes are little baby lashes. Hair however, apears to be a dark shadow on my head, but since I never shaved it it is a little hard to tell. It has a fuzzy feel to it, but I want more....NOW!

  • pasmithx2
    pasmithx2 Member Posts: 224

    Lililady--They started me at 90 min when I did the first one back in March. With no reaction, the second one was done at 60 min. I still had no reaction so it was run over 30 min from that point forward. The nurses have asked me a couple of times if I want to have it over 60 min, but I can't imagine why. There might be a difference if it's weekly or every 3 weeks but I'm also every 3 weeks. My onc referred to the "old protocol" of weekly infusions.



    I don't need to see the onc every time anymore, only every 3 months or so. I also have no blood drawn anymore unless the onc decides it's required for a specific reason. The appt today was special since he needed to tell me whether I would be on Tamox or Arimidex. I'm hoping that I might get in and out under 2 hours if there's no onc appt. What irks me is that I will now get scheduled at weird times since I don't need an all day appt. My next one is at 1pm--right in the middle of the day.



  • Kay_G
    Kay_G Member Posts: 1,914

    Hi Lilylady,  Same with me.  They started the Herceptin at 90 minutes.  I think the next week went to 60 and now they do it over 30 minutes.  Next time will be my first Herceptin only (except for the weeklies in the very beginning in between chemos), and the onc told me I had to see her first since I will be having my MX a few days later.  Otherwise, I believe I would have just had the Herceptin without needing a visit.  I think the NP told me every six weeks (every other infusion), I'll have to get blood work and see the NP before the infusion and not on the other weeks.  We'll have to compare notes as we go along.  Have an appointment with an RO on Friday.  We'll see what he suggests to me.  It's at the center where I'm getting treatment now.  My MO did tell me I could get the radiation at a hospital closer to home if I wanted.  It's only a half an hour drive to the center though and I believe they give RADS patients free parking, so I'm thinking I might as well just get it there.  I assume they have better equipment than the local hospital.  Hoping the RO doesn't mention any crazy number of treatments.  I am not prepared for that.

  • binney4
    binney4 Member Posts: 1,466

    Maxine, the only exercise better than swimming for lymphedema is scuba diving.Cool It's not just the wet suit, either, it's also the water pressure and the movements against very gentle resistence that help mobilize lymph fluid so it flows well and doesn't stagnate. Here's the National Lymphedema Network website, where on the right-hand side of the page, near the bottom, you can click on their Position Papers on several questions. One has guidelines for exercise:

    http://www.lymphnet.org

    Start back to exercising very gently, working up gradually and without straining your arm. It'll be good!Smile

    Be well,
    Binney

  • mdg
    mdg Member Posts: 1,468

    Hey gals...I just wanted to pop in and say hi! 

    Congrats Kay!  Glad you are officially PFC!

    Kymn:  I had "chemo legs" (legs of led) for about 4 weeks post chemo.  It will go away.  I am 11 weeks PFC now and no issues with chemo legs.  LOL about the support group thing....really?? 

    Divine:  I hope things went well.

    BikeNYC:  I started tammi several weeks ago.  It makes me tired.  I sleep like I was drugged at night...I wake up hazy in the morning.  As far as hot flashes...I have them but less than I did during chemo so that's a bonus!  I am suffering some "mojo" issues from chemo/tammi....but that's a whole other thread (the I Want My Mojo Back thread....).  I feel pudgy around the tummy but have not gained any weight.  In fact since chemo ended I have lost a few of the pounds I had gained during chemo when I craved carbs and ate a ton from the steroids.

    I wish I could write to everyone, but I am still just super busy with the move and stuff.  This weekend is DS's birthday party.  DH starts his new job in Chicago on Monday. We leave on vacation for 9 days on next Thursday.  We move 2 days after we get home from vacation.......I will check in when I can....

    I Hope you are all doing well...so glad more of you are finishing chemo and even rads!  Oh and to those losing lashes/brows....they grow back fast!  I lost about 50% of brows about a month or so after chemo.  I have not had to pencil them in for weeks now...they look completely normal.  I also lost all lashes about 2-3 weeks ago and I have been using latisse....now they are thick - just still growing in length so they are shorter than my normal super long lashes.  Now you can see them and there are a ton growing in!  They look thicker than before chemo.  I also lost some hair at my right temple where the cold cap didn't cover well.  It looked like I shaved it for about two weeks...you know lots of super short, fine hair growing in....but now a few weeks later it is not really noticeable.  I did have my hair thin with the caps but I still have a full head of hair.  I have tons of hair growing at my part line that is about 1/2 inch long and lots of hairs all over that are 2 inches long.  Other body hair has all returned (just in time for my beach vacation....of course!).  I am so use to not having hair sometimes I forget to shave my legs or underarms!  LOL! 

    Oh and an update on my horrible rash....my dermatologist things I have developed allergies to something I am being exposed to and that the chemo weakened my immunity and an allergy developed.  She had me stop all vitamins, supplements and use a very clean gentle special soap.  I also stopped eating any foods containing nuts.  I have been itch and rash free for almost 2 weeks now!!!!  I have not had it like that since BEFORE Easter!  Now I don't know what I am actually allergic to....I need to introduce things one at a time to figure it out.  I hope it's not my vitamins!!!  I guess I need to add an allergist to my list of doctors now too.....

  • Silia
    Silia Member Posts: 265

    Maria - Take care of your son's bday and everything else and we will collectively hold down the fort here!!

    pasmith - so glad it's nothing - yea!

    Kay - thanks for letting us know about the anti-cancer author.  it really hit me hard and I cried a fair amount tonight.  It's awesome that he lived 19 years beyond his initial diagnosis...  My crying seemed over the top considering but I guess I just really needed to cry some toxins out.

    ksmatthews - your surgery is my last day of chemo.  Sept I have surgery and Oct rads so thanks for leading the way.  I will look to you for insights!

    binney - thanks for weighing in re: lymphedema.  I will check out that site.

    fluffqueen - nice to see you here.  Glad to hear your update.

    G'night all.

  • PennyCookson
    PennyCookson Member Posts: 356

    Maxine -I am lucky with the rads schedule - I have them at 8:30 and can then just go on to work, no messing around in the middle of the day. The nurse tells me she will be very surprised if I do not get tired soon though, she says it kicks in soon after the skin goes red and itchy (which mine is on my neck and upper chest - ex boob area is ok). I am doing alot of exercise though and I believe that helps.

    Kymn - glad the hair is coming back - you have such a pretty face.

    I have had a week of Arimidex now, fell a little nauseas sometimes but no real symptoms yet.

    Maria - have a great vacation and good luck with the move afterwards.

    paxsmith - so good the lung was nothing - enjoy the cruise

    Sad about the anti-cancer book author, buts lets remember he had 20 more years than they thought, and I wonder how many years he has given to other people in that time