Totally confused after seeking second opinion

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  • GinGin
    GinGin Member Posts: 111
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    Hello my dear virtual support friends
    Firstly, I would like to sincerely thank everyone for taking time to share your feedback/ thoughts/guidance/questions with my situation.

    Updates 25 Aug: I went with B and surgery was a success. pathology results showed clear margins. My actual tumour size was doubled what the initial biopsies reported!
    Next stage: Chemo (likely 6 months). Seeing the oncologist next week
    @T@Tarma : I’ll be joining you in the chemo journey shortly :-:wink:

    😘 💐 xx
    Gin


  • Tarma
    Tarma Member Posts: 73
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    @GinGin 😃 💟
  • Tarma
    Tarma Member Posts: 73
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    Hey @GinGin 😊

    Hows things lovely? 

    Has chemo kicked off yet? 
  • GinGin
    GinGin Member Posts: 111
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    Hey @Tarma, 😘,
    Had first chemo on Wednesday morning….was completely worn out in the afternoon. I slept 14 hours on chemo day! Think it was good I slept as I felt nausea and headaches!
    Got up this morning at 4am with hot flushes and sweating but was able to get back to sleep quite quickly.

    I noticed my hair has starting falling off.. 😝, I purchased some lovely hats already from Jas( your recommendation from a different post).

    How are you holding up, my friend?

    P.s. this BC is a full time job!!!


  • arpie
    arpie Member Posts: 7,619
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    I hope the hot flushes/sweats stop for you soon xx  Hubby used to sleep on a towel when he was having the sweats as the wet sheets made him 'cold'.  

    Keep notes on everything that is going on, so your team knows all of it xx

    When you feel up to it - contact Look Good, Feel Good for a bit of a 'make over' - I attended one earlier in the year & it was fun as well as 'glamming' up (I am not a 'glam up' type of person!)
    https://lgfb.org.au/

    Take care @GinGin xx  

  • GinGin
    GinGin Member Posts: 111
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    @arpie, thank you for writing to me. I’ll make sure to have a towel 😊.
    I saw your post about LGFG, and have attended a few sessions (all were extremely useful). I have the skin care and make up , wig session line up in the next few weeks.
    the medical team has given me a daily diary which I am supposed to record each day 😊.

    hope all is going well your end.

    xx
    Gin
  • Tarma
    Tarma Member Posts: 73
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    @GinGin

    Aww 
    Big hugs girlfriend 🤗💕
    Ya poor thing, chemo it sooo Not fun lol 

    Are you on steroids atm ? I Start the night before chemo for 3 days, it helps with nausea as well as other things, Dexmethasone is what im on.. 

    I've found, although distressing while it was all falling out, being bald isn't the big deal I thought it would be.. the cute hats from jas definitely help..
    But I can't believe you are shedding already luv.. 
    What exactly has your oncologist got you on? 
    I'm on what they call TCH .. 

    So my update,,, 

    After my bloods on Wednesday I received a call Thursday,  my liver isn't liking one of my chemo drugs , so today my dose was reduced,  im not sure if it will stay that was for every cycle, all I know so far is ill be having weekly blood tests for a bit .. 

    Other than that, the side effects from 1st cycle  did get a little worse during  2nd cycle but still manageable.. the fatigue gets me down though..
    Just try to make sure you have a bit of everything on hand at home, Gastro stop, mylanta or buscopan for indigestion,  hydralyte, biotene if you get really dry mouth,  all the stuff they suggest in the info the nurses would have given you.. I didn't think I'd experience every side effect,,, lol I was wrong ..  although I have not vomited yet , im pleased about that 😁 but it may still happen,  the effects of chemo are cumulative,  so unfortunately it is going to get worse.. 
    I'll let you know in about 2 weeks how cycle 3 has been, by then I should be well over the worst and bouncing back, i find im almost good as new with about 5 days to spare before the next cycle starts again 😊

    Hang in there lovely..

    Here's my number 0488060096 and honestly, txt me anytime if you think I can help somehow.. and its no problem if you don't feel comfortable contacting me.. but the offer is there 

    Think of you mate

    T.💟
  • GinGin
    GinGin Member Posts: 111
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    Good morning @Tarma!
    I’m on AC for 4 cycles every 14 days, then I will be on 12 weekly Taxol.AC is causing my hair to fall off but it’s happening sooner than expected. I have the same steroid as you which I’m supposed to take on chemo day 1(via infusion) and on day 2 and 3 (tablet). I also have to get a jab after 24 hours from chemo (ziextenzo), this is to produce white blood cells. I’ll be doing my first blood test before my 2nd chemo (2nd Oct), can’t wait to see what the results will say!

    I won’t need to take the steroids this morning but I’ve been prescribed with Maxolon, which I can take if I feel nauseous. Hopefully I won’t need it🤮.hot flushes again this morning 🤣!woke up at 4am! The fatigue is real as well.

    I’m drinking at least 2l of water everyday, haven’t been able to do much walking as I would have like to. 

    Sounds like we are on difficult chemo drugs but the side effects are similar? How long do you need to be doing chemo? My chemo treatment plan is 5 months (AC for 2 months and taxol for 3 months).

    I have been given a diary to record my side effects, was told the side effects generally stays the same after each cycle but interesting you mentioned the effects is cumulative- will ask my medical team if it’s applicable for the drugs I’m on. Similar to you, I haven’t had all the side effects listed, only the ones I have mentioned… fingers crossed…

    Thanks for sharing your number,my dear friend! Have save it and will reach out for sure, going back to get more sleep now😴, feeling exhausted/fatigued (actually not sure which lol)

    p.s. I love the hats from Jas too😊 and look forward to hearing how the next cycle goes.

    thinking of you too, I have met good friends here😊!
    sending hugs xx
    Gin

  • Tarma
    Tarma Member Posts: 73
    edited September 2023
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    Goodmorning @GinGin 😊 

    Your hair lose is sooner than expected,  but it's good getting it over and done with I reckon 😄 

    I've got that same jab the day after mine is Pegfilgrastim..  Like you Gin I couldn't wait to see my first lot of blood results too.. 

    I'm TCH T is DoceTaxel  C is Carboplatin and H is for Herceptin witch is my targeted therapy,  because my cancer is Her2 positive . I'm 6 cycles of TCH every 3 weeks , then just my H continues for another 10 cycles,  I was told, soon after the TCH was finished, I'd have Lumpectomy. And if need be radiation.. My ovaries will come out sometime as well, but because of the chemo  treatment for my breasts it isn't as urgent now,,  they picked up the ovarian during my PET scan to see if the lump in my boob had wiggled its way to my lymph nodes... 
    SO im gunna be a busy girl early next year with a couple of trip to hospital 😃😁😝

    You were given the right info by your team , most side effects aren't usually cumulative, like nausea or constipation, dry mouth etc.. the kind of nicer  side effects if you can call them that, Not ! Lol 
    But some of the more worrying,  like peripheral neuropathy,  nerve damage that causes tingly fingers and toes, can become numbness and can cause problems long after chemo,, but we are monitored so closely im not worried, but my tingly toe and finger tips have become whole fingers and  kind of half feet lol its strange feeling and only annoying so far, no burning sensation,  so not painful.. 
    Well that's how I think the cumulative thing works anyways,  but as everyone says , "everyones journey/ treatment/reaction is different " 

    But I will definitely keep my fingers crossed your side effects don't get any worse😊

    Only if you have time, I love hearing from you lovely ladies. Sharing with eachother 💕 

    Take care of you, Big cuddle 🤗

    T.💌

  • June1952
    June1952 Member Posts: 1,834
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    @Tarma - I sent you a private message.  They appear in the little envelope to the left of your icon where you sign out at the top right of the screen.