A Little Embarrassing

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Comments

  • Matt
    Matt Member Posts: 14
    Hi @Sister wow what a great memory, yes I have about 4-5 weeks left of taxol should finish end of August, the first one went well, the next few I had a reaction so the oncologist worked out to pump me up on steroids a day before and on the day plus the stronger premeds before the taxol, no more reactions but I don't sleep from the day I take the first steroid till 2-3 days after taxol and by the time I get some sleep it starts again :-),and not to mention the extra weight and swelling of the face because of steroids ah the joy, the good news the lymph nodes in the arm pit have shrunk a little, but I do have lymphoedema in my right arm which the doctors are a little surprised with, I haven't had surgery yet and that's not supposed to happen for a few years later, I started physio last week, they gave me a sleeve and glove to wear, its not doing much just making my arm and hand bigger, being in the public system is frustrating everything takes for ever, I was hoping they can move the fluids out of my arm but they want to try the compression garment first I guess, I still eat heathy and well and go for at least hourly works every day, my hair is growing back on my head and face but downstairs is sill slow, I can't wait for surgery as i'm going through all this and still have the cancer in me and when they were doing more ultra sounds and ex rays to find a possible cause for the swelling of the arm they found a couple more infected lymph nodes in the chest area and faulty porta cath which they replaced very quick before serious damage was done, other than that all good,
    sorry for the long rant, this is day two with zero sleep hehehe, Sister I hope your well you are truly an incredible person
  • Sister
    Sister Member Posts: 4,961
    Hi Matt, You're on the right side of finishing Taxol - it really is a countdown. It's not really that I've got a great memory (it's a shocker) just that I had an idea that you were starting around the time I'd started Taxol. Sorry to hear about the lymphoedema - I'm assuming that you're seeing a specialist physio.  I only know about it from surgical complications as I have cording but I have heard of chemo causing some strange sort of fluid retention.  It sounds as if you're having a bit of a rough trot but good news that those nodes have shrunk a little. Take care.
  • iserbrown
    iserbrown Member Posts: 5,716
    Thanks @sister for checking on @Matt

    Well Matt your trip has some bumps in the road!  Here's to better rounds and getting that lymphoedema under control.  There are others on here that have to wear a sleeve - @fraser is one that comes to mind

    Take care
  • kmakm
    kmakm Member Posts: 7,974
    edited July 2018
    Hi @Matt. I know @Kiwi Angel had a lot of fluid retention issues with chemo which did resolve when it stopped. Hopefully yours settle down when you've finished. How good to be on the downward slope of this nasty marathon eh?

    Lots of us with sleep issues. If you're awake and staring at the ceiling, come over to the thread called Night Howls and have some company! K xox
  • arpie
    arpie Member Posts: 8,078
    edited July 2018
    I am thinking of you as you go thru this treatment, @Matt  .... great that the lymph nodes have reduced in size ..... bummer about the lymphoedema tho!  :(   I hope the compression & physio helps.

    Thank you so much for writing about your 'BC discovery' experience  .... I have now copied this & sent it to both my brothers & my sister, advising them to send it on to all their children, so that it reaches all the males in my immediate family.  Hopefully, it will be sent on to others as well - as a timely reminder to get checked out!  
     it should be stated there is a high probability in men if they feel a lump or hardness around there breast it is cancer, in my case I felt something almost two years ago a little lump close to the nipple, I passed it off as a fatty tissue, over time it grew not that I noticed to much, about six months it became about a 6cm diameter hard lump around the nipple I passed it off as a infection, it will go away so I thought, to make it worse I did notice a lump in my underarm over a year ago so I thought it had to do with my shoulder reconstruction I had a few years ago, I never heard of lymph nodes before :-),  I had physical two weeks before ii found out I had cancer, my results came back near perfect, the wife kept pushing me to see the doctor about the lump in my breast, finally I gave up thinking just go and get some antibiotics, but I ended up with a stage 3 boarding stage 4 invasive, aggressive and few other words they used spread to lymph nodes and what ever else, anyway may point is it should be drummed into men that if they feel something in their breast get it checked out asap, just like they do on commercials for women not just there is a chance that men can get cancer but its  rare

    I also sent them the copy of the Loo Pic, too, @traveltext !  Brilliant!  I wonder if that sign is in other loos all around Aussie!?


    Take care,  xxxxx

  • iserbrown
    iserbrown Member Posts: 5,716
  • traveltext
    traveltext Member Posts: 253
    @Matt I'm surprised you have been diagnosed with lymphedema before surgery. Have never heard of this. In any case I'd stick with the sleeve since this is important right now before the condition gets a go on. Try to access a physio who specialises in lymphedema treatment and ask for base arm measurements to be taken. This way you can benchmark future swelling, should it occur post surgery. 

    Dont worry too too much about having the cancer in you while chemo is going on. Even if it doesn't kill the cancer, it will get it under control so the surgeon gets a clear run at cutting it out of your breast and your lymph nodes. Likely they will remove all these and that's when your lymphedema risk really is a greater risk and the sage advice from  @Afraser really kicks in. 

    Keep us posted as things develop.
  • jmichelle
    jmichelle Member Posts: 15
    Hi Matt, good luck in this crazy ride, gender is irrelevant we are all fighting the shitty bc, keep us posted and there is always someone here if you need to chat, vent or can't sleep. 
  • Matt
    Matt Member Posts: 14
    Hi @traveltext I have the physio at the gold coast hospital who specialises with cancer patients, they have taken measurements of the arm and hand, they started me with a sleeve and glove and will order me a one piece sleeve with glove fitted as the two piece makes my hand swell even more, yes the doctors and physio people are surprised about the lymphoedema and they checked for other possible causes to no avail but did find a few other things not related :-), the physio team think its because the lymph nodes were bad to start with because of the cancer and what's left probably isn't coping with the amount of fluids and the chemo drugs isn't helping, once I'm off the chemo they might get a better understanding and control, 
  • traveltext
    traveltext Member Posts: 253
    Okay, I'd say they took blood from the affected arm at the time your lymp nodes were out of action or some infection happ we Ned without you noticing it. After surgery, you'll have no lymph nodes and thherefore a lifetime battle with lymphedema, so bestbget on top of it asap. 
  • Matt
    Matt Member Posts: 14

    Sister said:

    Hi Matt,  As everyone else has said - don't be embarrassed.  I think you may be on the same chemo as me.  I had 4 AC x 3 weekly and am now on Paclitaxol each week for 12 weeks (having No. 3 tomorrow).  Interesting about the second toenails.  I have the same thing but put it down to kicking a ladder (accidentally) for one and catching the other, lifting the nail, on a lounge chair.  I do know that the AC can make you more susceptible to bruising so maybe it's just that those toes are in the firing line.

    Hi All 
    thank you so much for the overwhelming response, SoldierCrab thankyou for all the information,
    traveltex thankyou also when I was with the doctors a lot of information went over my head, I have rather a large lump/cancer on my right breast and affected most of my nodes, they called it invasive, aggressive and some other things,
    its a stage 3 bordering 4 something like that, also its hormone based if that means anything, the plan is to do the chemo first to try and reduce the size of the cancer and the nodes so they can operate,

  • SoldierCrab
    SoldierCrab Member Posts: 3,429
    Matt, just take it one day at a time 
    got Questions post them and someone will always be around to help and answer or tag someone whom they know can answer the questions.