Calling all TNs

15075085105125131198

Comments

  • OBXK
    OBXK Member Posts: 791
    edited June 2012

    Inmate - what a hoot! That poor lady!

    I love the thought of the decorated bra event! I'm thinking oval tissue boxes, stuffed in a big bra, with holes for the tissues to be dispensed. Cause cancer is a crying shame.



    Hope every one in treatment is having a "good day".

  • OBXK
    OBXK Member Posts: 791
    edited June 2012

    Lovely - big hugs!

  • mitymuffin
    mitymuffin Member Posts: 337
    edited June 2012

    LNBCA,   I had significantly reduced breathing during chemo. I can remember being hardly able to walk around the yard, or even stand up for many minutes on some days. It gradually got better after chemo.  Studies have come out recently saying the Ginseng may help with cancer fatique, though I think it takes a while to build up a significant effect.  http://www.medpagetoday.com/HematologyOncology/Chemotherapy/33086

     http://www.breastcancer.org/tips/new_research/20120611.jsp

    I felt that accupuncture helped some, and walking (when possible.)  You are a loving daughter!

  • rachelvk
    rachelvk Member Posts: 1,411
    edited June 2012

    LNBCA - You are great to be watching out for your mom like that. I hope some of the answers from others helped. I did TAC x 6, and by the last one, I had to stop once or twice to make it up the stairs to my apartment. I even applied for and got a handicap permit, and I'm only 43 and (prior to this) in good shape. It must be harder as you get older. I hope the doctors can find some ways to help ease the fatigue and deal with the anemia.

    Luah - Thanks!

    kathymn - The ovaries are definitely going, and sooner than later, but I just want a breather. I just hate the thought of hitting menopause (assuming chemo didn't put me there already). I'm barely 4'8 and have a history of osteoporosis in my family. Ovarian cancer would be worse, no question, but I'd like to put off some of the SEs of an ooph a little.

    Tazzy - That's so sad about the whale.

    Inmate - That was a fantastic answer! Wish I had thought of that when a few people asked me a similar question (although in that case, I  had my wig on).

  • rachelvk
    rachelvk Member Posts: 1,411
    edited June 2012

    Lovelyface - So sorry to hear you've got another worry weighing on you. Sending you good vibes for the biopsy and this new issue.

  • kellycbk
    kellycbk Member Posts: 31
    edited June 2012

    hey rachelvk- I finished my treatment in Sept. 2010 and as soon as posssible I got a total hysterectomy. I was not going to take a chance that I would have to begin new treatment anytime soon. I am BRAC1+ and didn't want to give C a chance to start there. I would highly recommend checking into getting it done robotically. I was in the hospital under 24 hours and feeling normal in less than 4 days. Definitely much better than being down another 6-8 weeks.

    inmate- love the HAIR!!  I don't have that kind of quick wit. The bra event sounds like great fun.

    To all you out there facing treatment take it one day at a time!! 

    Kelly 

  • Cocker_Spaniel
    Cocker_Spaniel Member Posts: 1,204
    edited June 2012

    Inmate - 'Gone but not forgotten'. I had a doozy before I went in to get more chemo brain so hopefully it will come back to me later.     

  • inmate4232010
    inmate4232010 Member Posts: 310
    edited June 2012

    Lovelyface....I hear you on catching a break.  I even find myself avoiding that part of town unless I have an appointment.  No need to be reminded by shopping in the neighborhood I get treatment.  I am hopeful this is our summer for a break from the action!

    Karen....I love that idea.  I just found out tonight you can buy a box of extra underwear.  They are dispensed like tissues.  That of course would not apply to this event.  I just thought it was funny.

  • Cocker_Spaniel
    Cocker_Spaniel Member Posts: 1,204
    edited June 2012

    Here you go Inmate just for you. Aren't they beautiful

      

  • Cocker_Spaniel
    Cocker_Spaniel Member Posts: 1,204
    edited June 2012

    This one just cracked me up

  • BernieEllen
    BernieEllen Member Posts: 2,445
    edited June 2012
  • Cocker_Spaniel
    Cocker_Spaniel Member Posts: 1,204
    edited June 2012

    Good Evening Ladies

    Hope everyone is feeling good with no side effects.

    Dormac - would you get that wheelchair up the Eifel Tower??

    Riley702 - right got it, medical oncologist but what does the initials JMHO mean that Titan mentioned in her post.  We don't have those neulasta shots here either, or I've never been given one.  Isn't it funny what different treatments different countries come up with.  You would think for the good of the patient they would all be across the board.

    Tazzy - what a shame the poor little baby whale died. 

    StayShiny - wishing you good results on your bone and CT scans. Will be thinking of you and hoping all goes well.

    Luah - I really hate soy and couldn't eat it if my life depended on it.  Yuk.

    LNBCA - good idea for you to call the doctors office and also perhaps get her heart checked as well as see about a  blood transfusion. Just a thought but something has to be done for your poor mum.  She is probably so scared of this diagnosis and all that comes with it. 

    Kathyrnn - Might have known you would keep stum on me and not tell me all. The onco showed me a picture of the size of the boil and how big the cut was.  I thought what for down there, get real.  I'm sure I went pale. 

    I agree with you on the ovarian issue.  It is called the silent killer here too as the symptoms don't usually show up until too late so out the bloody things go.  Mine will as well if I prove to be BRAC 1 or 2.

    And OMG - shrunken rad breasts. Do you mean I went to all this trouble to try and look normal with a prosthesis and now I might look lopsided again.  Your joking me right??

    Karen - new clothes aye.  Bet you look spiffing in them.  By the way did you receive a parcel today with no return address on it???? Will explain more about HER later.

    Inmate - did you put salt in your sitz baths as they say it heals.  Also the boil is starting to happen cause I had some blood today which I remember having with the other boil many moons ago. 

    Could you also put the why's and what's about AC and Taxol on here cause my Onco also said it was the best treatment for TN's  today when I saw her today.   

    Bet you will have fun decorating those bra's.  I would love to see what you all come up with.

    Well ladies I'm ashamed to say it happened again and she ate the new box of band aids that my old fellar brought.  They also was on the bed cabinet because thats where I lay on the bed and he puts the bandage on. Cause we were running late for treament and had to rush to chemo (God knows why) and when we got home, all chewed up.  The old fellar said little sod isn't she, I thought thats not what I call her. It was my fault though cause I should have known not to leave them there twice but I could still kill her. When you look at her she has the most sweetest face and she is so tiny. You would really think that butter wouldn't melt in her mouth but bloody band aids do. 

    Everyone raved over the butterfly cakes and scones that the old fellar took to chemo today.  His chest is still puffed out.  Must admit they were nice though.

    When I got home I had a huge spray of flowers delivered from my workplace saying " half way there, you are awesome". They obviously haven't read my posts on here about chemo.  They are all orange with beautiful fern and pretty paper, so lovely and made my day. 

    Have a good day ladies. Sending you lots of hugs for any SE's and lots of love. Annie      

  • mags20487
    mags20487 Member Posts: 1,591
    edited June 2012

    JMHO-- just my humble opinion

    Tried something different for my LE in the left arm yesterday.  I wore the sleeve on top of the glove instead of the other way around as directed and last night I did not wear my compression garment at all...naughty gal that I am.  Guess what?  The hand looks better today...go figure.  Apparantly my hand is a rebel like me!  It still is puffy looking but I can see two ligaments today as opposed to none. 

    Horray for  OKC last night!  Even though I live in Florida I am not a Miami Heat fan.

    Maggie 

  • Babs37
    Babs37 Member Posts: 455
    edited June 2012

    Mags- I have LE in my hand also and last fall, I went to the LE therapist and did the LE massages. She tried "wrapping" my arm and hand and my hand got worst with the wrapping! Now I only wear my sleeve and glove during the day and I have to say that it's stable. It's still a little "puffy" but I will live with it. I hated the wrapping. I tried all sorts of sleeve and gloves. I noticed that when I wore my Lymphediva sleeve my hand got puffyer because the wrist is tighter. I tried the Jobst armsleeve and seemless glove and didn't feel comfortable in them. The best for my is my Mediven 95 armsleeve and glove. I wear my sleeve on top of my glove all the time too and works well for me. I have truncal LE too and have to wear a compression bra too. Let's just say I am very well compressed. Tongue out

    Just too add that my shingles are still going on. It's limited in my right shoulder  and base of my neck, BC side. I am lucky it doesn't touch my arm because it would be hell itching and having to wear my sleeve! It doesn't hurt too bad so that's a good thing but it itches like crazy!

  • Luah
    Luah Member Posts: 1,541
    edited June 2012

    Mags: When I attended an LE clinic, it was my understanding that pressure sleeves were only to be worn during daytime hours. But maybe that depends on the LE patient. (I only wear mine as a precaution when I fly.)

    Lovely: Sorry you're dealing with all this. Stay steady... the symptoms might just go away on their own in a few days. 

  • LNBCA
    LNBCA Member Posts: 49
    edited June 2012

    You guys are all awesome. Thank you so much for all the advice. This seems like just another crappy, horrible side effect. I'm taking my mom to see her oncologist today, they should have the report from the chest xray she had yesterday. I feel so bad for her. She literally has not been able to do anything. I go over to my parent's house almost every day and clean and make my mom something to eat, she's home alone all day as my dad works 7 days a week, and she's always so thankful and it just breaks my heart. She's been really quite lately, I know she's depressed. I just want her to get done with treatment and go on with her life and be happy again and not worry and feel like crap everyday.

    Jan69- she is 60, 55 the first time dx with triple neg., although they never used that name until this new dx.

    Lovely-I thought so. They really are precious little dogs. I  have two, one is 12, I've had her since she was a baby, and the other one is around 16 or 17, my husband found her outside of our old house one morning, no one claimed her, and it was obvious someone had not been taking care of her, so we kept her :) My parent's also have one too. She is a chubby little girl. My dad's pride and joy.

    Thank you again everyone. I really appreciate all of the advice and kind words you have offered!!

  • Velociraptor
    Velociraptor Member Posts: 45
    edited June 2012

    I'm here for my mum. She is:

    Currently 60. First Dx in 2008 with DCIS Grade III node-negative TN. Had a lumpectomy, chemo and rads. Cancer free for 3 years or so we thought.

    Jan 2012 recurrence - small lump in same area. Mastectomy and almost all nodes removed, all were positive. Then discovered mets to liver, lung and bone. Bone isn't as bad as we first thought and responded well to radiation, and she just started chemo last week. She will get a full body CT scan in August again.

    This is beyond sucky. At first I was just terrified of losing her. Now added to that is feeling horrible about seeing in her in pain from the chemo.

  • Velociraptor
    Velociraptor Member Posts: 45
    edited June 2012

    As for my mum's day to day - I'm one of three siblings and one of us is always around, altho I feel bad bc my sis seems to have the heaviest load (her kids are tweens whereas my bro and i have toddlers, and I live an hour away). My dad is retired so he's home so shes not alone in that sense, but my dad at 67 is pretty fragile himself. We all take turns taking her to appointments and are doing our best to keep all her info in order. She's got 5 grandkids who come around often enough and make her smile. But it doesn't make the pain go away.

    What kinds of things should we be watching out for?

  • StayShiny
    StayShiny Member Posts: 141
    edited June 2012

    Velociraptor, sorry to hear about your mother but you have come to a great place here for support and wisdom. What chemo regime is she getting? Sounds like if she is in so much pain you should talk to her MO. They should be able to help make her more comfortable with meds. Good luck!



    CS, your cat and the bandaid fetish is too funny! Sounds like you need to stash a backup box in a safe place. We had had a dog who passed recently that had a wood fetish. She chewed door frames and doors. Still have repair work to be done. There wern't too many door frames that were spared. I'll take bandaides over wood...cheaper to replace!

  • mags20487
    mags20487 Member Posts: 1,591
    edited June 2012

    Luah--I do only wear my sleeve during the day but have been fitted for a nighttime compression garment that I am supposed to wear at night.  It is such a pain to put on and so umcomfortable.  Getting a little more used to it by the day though.

    velociraptor--sorry bout your Mum. 

    Lovey--chin up lady!  hoping for good news soon

    LMBCA hope your mama can continue the fight and find strength.

    Maggie

  • kathyrnn
    kathyrnn Member Posts: 393
    edited June 2012

    OBXK - love the tissue idea.



    Lovely- so sorry about this new scare. Waiting for an update and prayers for you



    Inmate - you have an amazingly quick wit!



    Cocker - I'm sure you have Nuelasta there. Taxol isn't as hard on white blood cells. I got it during the A/C phase. (I can't remember if you're going to be getting A/C). Some version of Taxol and A/C is the most common treatment used, but as you can see nothing is set in stone when it comes to treatment recommendations. The shrinking breast was no joke. According to my BS, it is more common with large breasts. I realize that saving my life is more important than my breast, but I think that is info that should be given to you before you make your surgical choices. After my Mom is gone (don't want to have the risk of surgery for something that is cosmetic while she is here) I plan on having a breast reduction, so I'll deal with it later. But, to someone else, being lopsided may really bother them. Just want doctors to be giving us the info we need for our decisions. How lovely your co-workers are!!! I bet those tidbits hubby made were greatly appreciated.



    Mags - I think trying different things to see what works isn't a rebel, it's a smart woman!!!!

    I have a question on LE. Do they have or use a pneumatic sleeve (may have the wrong name for it.). My friend's daughter has lymphadema in her legs, and wears pneumatic sleeves on her legs at night that help massage the fluid up. Just curious.



    Babs - may be a great sign that they only itch. My doc gave me all the scary info on the chronic nerve pain you can get from them. Mine only itched, and I never had any pain during or after.



    LNBCA- you're a wonderful daughter! Any chance you can get Mom on the computer and into this group? I know it was a big help with the feelings of isolation I had.



    Velociraptor - Welcome and I'm so sorry about your Mom. My first thought before I even got far into your post was, how scared you must be. I'm not sure what info your asking for, when you say "what to look for"? One simple thing I can tell you is that all chemos weaken our immune system, and make us susceptible to infections, so you want to look for things like an increased temperature, or a new different cough. Please don't hesitate to ask questions, we are all here to help. Also, because I'm in the US, I don't know what services are available to help your parents. I would definitely suggest a social services consult to see what's available. One of the women for your area (I know Tazzy is) will be along shortly with better info.

  • kathyrnn
    kathyrnn Member Posts: 393
    edited June 2012

    Hey Ladies, just wanted to give you a laugh. Remember my rant about cable making me drag my poor Mom to the office with a death certificate, before we can get the digital adapters we need?



    Today I tried another track. Went online and tried to order them. No go, popped up with a message that I had to call. I called today just to find out why I had to call in. If they asked for my Dad, I was gonna say "he's not here at the moment". (It's not a lie, lol) My plan was to get my neighbor, Dick, to act as my Dad and order them if I had to (just need a male voice). I used the automated robot. Took about 2 minutes and the adapters are on the way (crosses fingers). Dearest Comcast, please give the robot a raise!!!!! Now I have some breathing space, and can get my computer and other equipment down here, before I have to drag poor Mom over there to change it.



  • BernieEllen
    BernieEllen Member Posts: 2,445
    edited June 2012
  • mags20487
    mags20487 Member Posts: 1,591
    edited June 2012

    oh Bernie...you kill me

    the port is out.  Doc did it right in his office and it was so much easier than I made it out to be.  So relieved.

    Sorry but i know nothing about the pneumatic sleeves.  Mine is a farrow cut to fit sleeve with velcro all the way up from wrist to pit. It is one of the least expensive night time things on the market and is relatively new.  Daytime I wear a Juzo dream sleeve and have a custom made glove with fingers.

    Maggie

  • naan1004
    naan1004 Member Posts: 520
    edited June 2012

    Haven't been on for a while, have a funny story to share. Had my lumpectomy on 6/8, Fri, after which the nurse once I woke up encouraged me to go use the bathroom. To my amazement the hospital installed blue toilet water, I was like wow hospitals use that blue stuff too, still kind of out of it, I got discharged and went home. Once I got home I was once again amazed that our toilets too had the blue water, I told my husband all excited, I think my mom found some of those toilet cleaning blue stuff for the water, and he too was excited that anyone other than himself had cleaned the toilet for once. Then I used another bathroom that evening, which confirmed that my mom had cleaned both bathrooms. Then the next morning to my disappointment the toilet water had gone back to normal and only turned blue after I used it. I told my husband who finally told me what the nurse had warned him the first time I went pee, to not get shocked if I pee blue, it was from the dye they injected during surgery. I guess my hubby better clean the toilets after all and we really need to buy some of that blue stuff!

  • DorMac
    DorMac Member Posts: 155
    edited June 2012

    What do you mean "Poor Man"?  He should be so lucky!

  • kathyrnn
    kathyrnn Member Posts: 393
    edited June 2012

    Naan - excuse me while I stop laughing. I thought it was odd the hospital had blue toilet water, but now I know the reason why!!!

  • LNBCA
    LNBCA Member Posts: 49
    edited June 2012

    Hello again ladies, just thought I'd give you all a little update on my mom. Her chest xray came back fine. They think it's just all from her being anemic. She saw her oncologist's assistant today and he was very helpful. He recommended maybe getting her on some B vitamins, and he said this new shot she is getting should help with her red blood cells, (my mom and I both forgot the name of the shot..I asked her on the ride home what the name of it was and she couldn't remember either lol). Hopefully she starts to get better so that she won't need a blood transfusion. I wheeled my mom into the office today, (with my three kids in tow, boy was that fun), and one of the nurses saw my mom, and asked how she was, knowing something was up if she's sitting there in a wheelchair. So my mom told her how she's been, very tired, completely out of breath, hardly able to get up and walk from one room to another, etc. Well, the nurse said "you need to let us know if you get this bad, you might need to be on oxygen". My mom explained to her that we've all been calling, telling them she's doing horrible, (my aunt has called a few times, and my sister). So finally today she got to talk to people in that office that listened. They checked her oxygen and it was fine also, so she didn't qualify to get an oxygen tank. Well just thought I'd give you guys a little update. Hope you are all doing well today!

    Kathrynn-I've tried :/ I got her on my sister's laptop the other week and showed her this forum. She read it for quite a while, but hasn't been back on. She's not much of an internet person :/

  • Tazzy
    Tazzy Member Posts: 2,546
    edited June 2012

    Bernie and Naan...thanks for the real belly laughs.   Naan... priceless, absolutely priceless.

    Inmate... hope you get some pictures to send us of the event... sounds a blast.

    Velociraptor... as you are in Ontario and me in BC am sure there are different things available to us... you may wanna check out the board "The Canadian Connection... Calling All Canadian Women"... lots of women from ON there who will have tons of information for you.  wishing you well.

    Cocker... Just Laughing

    met with my RO for the first time today... she's a sweetheart and has plenty of time for her patients.  Lots more information to read and a dvd to watch.   BS will confirm tomorrow when I meet him, but likely rads before surgery and they should start end of July'ish.   And she did mention that the boob being nuked will likely get more 'perkier' than the un-nuked one.   Wont make much difference if I have surgery afterwards anyway.    Next chapter is being written.

    Hope you are all having a good day/evening with little SE's.

  • StayShiny
    StayShiny Member Posts: 141
    edited June 2012

    LNBCA, glad the X-ray and oxygen came back fine for your mom. Sounds like she had the Procrit shot. A lady on my TC thread had it too for low rbc and it helped her. I did take a B complex vitamin during chemo (when i remembered!). Does your mom have a laptop or ipad of her own? She may lurk on these forums for a while and then join in. If she can do it from anywhere in the house, she may be more likely to do so. My MIL has an ipad and loves it. My DH got me an iPad after surgery and I can't put it down.

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